Musings on Hope

TV manipulation

2012-01-23T20:12:00.001-06:00

I'm probably the only person who finds this video both fascinating and maddening, but here it is anyway. You can hear us in the background threatening to turn the tv off so she will hold her head up, and she does! If anyone knows how to translate this into full time head holding please tell me:) We already do all the typical PT and OT strengthening and stretching exercises. We have got about 6 weeks until the halo goes on.

P.S. "Caca" is what Maggie calls her nurse Jessica (I know it's a bad word in Spanish but oh well).

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Twinkie Update

2012-01-22T14:28:00.001-06:00

I almost lost it the library the other day when Maggie projectile vomited in the middle of a puppet show and several mothers flashed me a look of disproval. I wanted to scream and say, "I promise she's not sick, she just has the most severe reflux you've ever seen!" But I didn't. I just cleaned up the nasty carpet while Maggie screamed because she was soaked in vomit and Mary Lawrence cried because that meant we had to leave the puppet show. Then I drove home in silence thinking that the Twinkies must be too rich for her sensitive stomach because she's been vomiting several times a day this past week. When we got home I gave them a bath and put them in front of the tv. Then I went in my room, closed the door, and then proceeded to sob loudly on my bed for about five minutes. No more Twinkies for Maggie I guess.

How to make a child fat...

2012-01-13T17:35:00.001-06:00

Recently Maggie's dietician chewed me out over the phone because Maggie hadn't gained weight in November and December. (Yes, she berated me and left me in sobbing tears-not kidding).

This person had obviously lumped me into the group of neglectful moms she must see everyday at Children's Hospital. "I am not a bad mom," I wanted to say. "Maggie has had a cold, cough, stomach virus, surgery, new g-button (which got infected) in that time period and any time she's sick it makes her reflux/vomiting return. Plus she started walking and burning more calories." But this person didn't care. Her job is to monitor maggie's weight gain and I obviously failed in her book.

Why is it that American children are getting more and more obese yet my child can't just get a sliver of fat on her body? It's so frustrating that Maggie probably gets more calories a day than most finicky two year olds with the homemade formula I make. And yet she's still so skinny!

Then it hit me: Maggie gets no junk or processed food like most American children. No cookies, crackers, Popsicles, ice cream, fruit snacks- none of that stuff that has zero nutritional value, but plenty of calories. Even the healthiest parents still let their kids have a treat here or there, right?

So perhaps Maggie is too healthy. The good fats like olive oil and avocados are just not doing the job for her. She can't have dairy unfortunately. And we can't just increase the amount of existing formula she receives because she will throw up (we've tried and I'm tired of having green goo all over my clothes, furniture, hair, dog, and so on). So I'm thinking I need to resort to adding some other low volume, high calorie food: The Twinkie. That's 150 calories of pure processed food. If anyone has a good reason for me not trying this, please feel free to email me...hopefully my instincts are right on this, too.

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Mean Mommy

2012-01-06T10:50:00.005-06:00

You know what gets me giddy with excitement these days? It's not Louboutin heels, large diamonds, or even a fancy date night. I think I coveted those things in my old life. Not any more.

Today one of Maggie's doctors gave me his email address and I seriously felt like the happiest girl in the world for having such access to one of her doctors. And tonight Justin and I are celebrating our ninth anniversary by going to a movie. I'm looking forward to watching previews and sipping on a super large diet coke. [Note:It's okay if you think I am totally pathetic.]

I didn't intend for this to happen because I certainly like the finer things in life (and Justin if you read this: one day when things are going better for us I would happily accept diamonds of any sort). But I guess you can only go so long having a child with medical problems before your heart stops being wooed by material things. And I've definitely hit that point. And, I have to say, it's really freeing.

* * *

On another note, I have resorted to manipulating my poor child to hold her head straight. I threaten to turn the TV off or refuse to flip a page in a book unless she tries. Unfortunately, Maggie is too smart for me. I paused the Snoopy DVD with the remote control and told her "I wasn't turning it back on until she held her head straight." Without skipping a beat, she looked at me and then stomped over to the DVD player and pressed the play button. How in the world does she know how to do that???

The reason I'm giving my child a horrible complex - that she'll surely have to go to therapy for as an adult - is because Maggie is probably getting a "halo"in a few months. A halo is a metal ring that is screwed into the skull in 6 places and cannot be taken off. It's often used when someone breaks their back or neck during a car accident; it' not normal treatment for torticollis, but this is not normal torticollis. And if the halo doesn't work, they the next step is a spinal fusion. Both awful and both mean in a two year old. And I'm trying to avoid both at all costs by being, well, kind of mean.

It's so incredibly frustrating because she can hold her head up for a few seconds, so we know she physically able to do it. But we can't wait much longer to see if she'll start doing it permanently because her tilted position is causing permanent damage to her spine and that will only get worse with time. So we have to act sooner rather than later.

It's heartbreaking and maddening. I wish she was 7 years old and she would understand that if she doesn't hold her head up she will have screws drilled into her head and have to wear hot furry vest that can never be taken off. She will have to relearn to walk (if she even can - a halo weighs 6 pounds!) and it will be miserable. And bonus: there is no guarantee that it will work. Most likely it won't, but Justin and I feel like we need to try it before we agree to do the most permanent and final option, which is a spinal fusion in which she will probably have to wear another halo for several months. This is a major and painful surgery associated with high risks. With it she will never again be able to turn her head left or right, although it will be straight. She won't get made fun of in middle school for that....

We would truly appreciate prayers for miraculous healing (once again!)in the next few months. That she will hold her head up and we can avoid all these major procedures.

Joyful Joyful Christmas Season!

2012-01-02T19:41:00.004-06:00

We had a busy and fun month - we went to Atlanta for a checkup and then to Little Rock for Christmas. We feel so blessed to have such wonderful friends like the Gaddis family in Altanta who took such good care of us, and our precious family who loved being together in Little Rock. How blessed we are...

We saw "Madeleine's Christmas" in Atlanta with Marcia and loved it!

Our future performer!

The girls loved Miss Marcia

We stopped and toured the Vicksburg battefields on our way home - I am such a sucker for historic sites.

But it was worth it because she held her head straight at this monument to Illinois soldiers. (We really think the Botox she had in Atlanta this trip really made a difference)

Big sissy helping with breathing treatment on our trip

I love these girls...

Sweet sisters

Someone was not too sure about Santa...it's funny because I find such appreciation in these often frustrating, but very much normal, toddler behaviors. I know what a blessing it is that Maggie is even going through these "normal" stages.

Fun with our Phelan cousins!

Making a homemade present for Lolly and Poppa

With friend Michael Lipsey (yes, I have trained the poor child like Pavlov's dogs to pop her head up for a few seconds when the camera comes out.) These two had due dates two weeks apart - I finally feel like Maggie is starting to look her age! She's petite, yes, but within the normal range.

Couldn't resist eating the gingerbread house decor:)

Precious moment at the Candlelight service that my dad snapped with his camera.

Our tradition of reading on Christmas Eve - "The Night Before Christmas" and Luke 2

The little ones adore Uncle Will (aka "Buddy") with Noah

Look at how big I am getting! At Mimi and PopPop's house.

Love from Pop (her great-grandfather).

and cousin Natalie

Uncle Patrick and Emerson (did I mention this was our first ever tacky sweater Chrtimas gathering? Should have mentioned that...we don't normally dress this way, just wanted to shake things up this year)

This was Neely's sweater - wish I had gotten a picutre of her flashing ornament earrings!

Everyone had to give Maggie some special love, including her great-grandmother Nanny

Four generations of the Wooten extended family- Love y'all!

2012-01-01T07:23:00.001-06:00

Thought this devotion was the perfect encouragement for those that may be struggling to adjust their perspectives and step into the New Year with joy and hope...oh that I may focus more on the preciousness of Jesus this year and hold up my banner of confidence in Him each and every day.

"We will be glad and rejoice in thee."
Song of Solomon 1:4

We will be glad and rejoice in thee. We will not open the gates of the year to the dolorous notes of the sackbut, but to the sweet strains of the harp of joy, and the high sounding cymbals of gladness. O come, let us sing unto the Lord: let us make a joyful noise unto the rock of our salvation. We, the called and faithful and chosen, we will drive away our griefs, and set up our banners of confidence in the name of God. Let others lament over their troubles, we who have the sweetening tree to cast into Marah's bitter pool, with joy will magnify the Lord. Eternal Spirit, our effectual Comforter, we who are the temples in which thou dwellest, will never cease from adoring and blessing the name of Jesus. We WILL, we are resolved about it, Jesus must have the crown of our heart's delight; we will not dishonour our Bridegroom by mourning in his presence. We are ordained to be the minstrels of the skies, let us rehearse our everlasting anthem before we sing it in the halls of the New Jerusalem. We will BE GLAD AND REJOICE: two words with one sense, double joy, blessedness upon blessedness. Need there be any limit to our rejoicing in the Lord even now? Do not men of grace find their Lord to be camphire and spikenard, calamus and cinnamon even now, and what better fragrance have they in heaven itself? We will be glad and rejoice IN THEE. That last word is the meat in the dish, the kernel of the nut, the soul of the text. What heavens are laid up in Jesus! What rivers of infinite bliss have their source, aye, and every drop of their fulness in him! Since, O sweet Lord Jesus, thou art the present portion of thy people, favour us this year with such a sense of thy preciousness, that from its first to its last day we may be glad and rejoice in thee. Let January open with joy in the Lord, and December close with gladness in Jesus.
Morning and Evening Devotional, by Charles Spurgeon

Merry Christmas!

2011-12-19T13:50:00.002-06:00

I had decided back in November to give myself a break this year and forego Christmas cards. But when the cute Christmas cards started pouring in ML kept asking me where our card was. So being the guilt-ridden mom that I am, I dressed up the girls for photos in the park yesterday.

This photo pretty much sums up the result of my good intentions:

ML broke into tears after I got mad at her for making silly faces and Maggie is crying cause she got angry and threw herself off the bench onto the stone walkway. So no Christmas card from the Cordons this year. Merry Christmas to all our friends near and far!

November 29th

2011-11-29T10:46:00.000-06:00

I wish that I could write that we've seen a dramatic difference in Maggie's neck these past few weeks. Part of the reason I haven't posted is that I have been quite discouraged about it. The first week after surgery we saw signs of improvement and had so much hope. Now, four weeks later, it seems like when the brace is off her head looks just like it did before surgery. Even with the brace, it's not perfectly straight. The muscle release was not supposed to be an immediate cure, but I was hoping to see a bit more improvement than this.

Don't get me wrong. I have no doubt that she needed the surgery - but it just confirms my worst fear that there is, in fact, something more going on than just the muscle. We are going back to Atlanta in a few weeks to see the plastic surgeon and the neurosurgeon and hope to get some more direction on our next steps. Frankly, I am so tired of wondering, questioning, thinking, pondering, doubting, and all the emotions that go with it. Every night I get up between 3 and 4 am (not on purpose!) and just browse the Internet andthinking about every scenario, every decision, every "what if". It's just nearly impossible not to be consumed with it because of the lifelong issues and impairments that can go with not getting her neck fixed. Unfortunately, it's much more than just a cosmetic thing.

I cry out to God every night to heal her and to make her head straight. I don't know why He hasn't nor why none of the doctors so far have been able to help her. I am so exhausted with it all and honestly just want to give up, mostly because I am tired of torturing the her. Plus, I find myself getting frustrated with this poor child who obviously cannot help it. I find myself not ordering school pictures of her and not even taking pictures of her. It's not that I don't love her and think she's adorable - she absolutely is - it's just that it makes me realize how much time has passed and how little I have been able to help her. There is something about a still photograph that makes her tilt seem so much more permanent in time.

On a more positive note, she is walking more and so excited about it. I'll have to post a video soon...

Update

2011-11-14T15:48:00.001-06:00

Maggie is getting used to her brace, but certainly doesn't love it and often asks us to "take off." It's hard to resist her pitiful request, but we are doing our best to leave it on 24/7. We do take it off for therapy, which we are doing everyday now. Her therapists have noticed a good difference in her range of motion which is good.

Maggie is not back to her normal self after surgery and a bout with the stomach bug, but hopefully she will be soon! She is definitely walking more steps and having better balance with the brace which is great.

We go back to Atlanta in 5 weeks to check in with both doctors and see if they think the brace alone will retrain her or if she needs further treatments or surgeries. I definitely have accepted that this will probably be a long process, which is hard to digest when all I want is to be done with all this! But at the same time I'm so thankful we are starting when she's two years old and with wonderful doctors.

Thank you for all your prayers these past few weeks.

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2011-11-04T21:16:00.001-05:00

How wonderful it felt to leave the hospital today and be finished with something we had anticipated for so long! Maggie is adjusting to her new brace that has to be worn 24/7. But doing well otherwise.

She is so brave and sweet. I'll never forget her sitting up in the hospital bed, hands gripping the sides, as they rolled her down the hall into the OR. She has done it so many times; she knew the drill....

What a long and beautiful two years it has been. Thank you to our faithful friends and prayer warriors all along the way - we have so much to celebrate today!

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Location:Happy 2nd Birthday!

Surgery update

2011-11-03T19:33:00.001-05:00

After a five hour delay, Maggie had her surgery and everything went well. The doctor said her muscle was so overtaken with scar tissue - probably from how she was positioned in the womb with no fluid- that he said all the PT and OT in the world wouldn't have helped. So the surgery was definitely necessary.

The craniofacial surgeon and the new neurosurgeon we saw yesterday both agree this might not fix her completely. They saw a tiny fracture in her neck that is probably contributing to the problem as well that might require further surgery. Hopefully not though! For now they are making a collar/brace for her to retrain her neck to grow straight. She'll have to wear it all the time. And we will come back to Atlanta for further evaluation in a month.

We feel like we've finally found the right doctors and are so hopeful that we will see a dramatic difference in the next few days. Thank you all for praying!

Love

Lee

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Surgery today!

2011-11-03T05:53:00.001-05:00

We are in Atlanta and thankfully Maggie was cleared for surgery yesterday by the neurosurgeon. I thought this day would never come! Her surgery is at 2 pm Eastern. Praying for the surgeon to do a precise and wonderful job, for no complications, and that we see a dramatic improvement in Maggie's range of motion.

From our little pre- birthday celebration Marcia Gaddis (in whose home we are staying) did last night for Maggie and her daughter, Blair.

Trick or Treating in Little Rock.

How fun we got to see cousin Wesley in Atlanta.

Nov 3rd surgery

2011-10-17T21:06:00.001-05:00

Maggie's surgery is scheduled for November 3rd in Atlanta. I am so excited but also so nervous as this is the last "thing" that could supposedly help her neck. And there's no consensus that it will. But most agree that we have to try something before it gets worse and is forever contracted and Justin and I are on board with that.

Maggie is no doubt a mysterious medical case- things with her are not as clearcut as I wish they were. I got a call from the surgeon's assistant today that he wants us to see a neurosurgeon in Atlanta before he does the surgery. This will be the 4th neurosurgeon she's seen - which is a little crazy if you think about. I know he wants to be 100% sure before he performs the surgery that nothing is going on neurologically that would cause her neck issues. I'm glad he's thorough, but of course I'm a little unnerved that he wasn't satisfied with the reports from the neurosurgeons here...

Every time I think about it I'm praying for this surgery. I don't want Maggie to struggle with this anymore, to be in pain, and or to get strange looks when we're out in public. I want to know if she can swallow and eat better with her neck straight. I want her to have a normal childhood as possible.

We need prayers for protection and healing, for the surgeon's nimble hands, and the anesthesiologist's good judgement, and for strength for Justin and me. We are praying that she doesn't get sick before the surgery, and that it will go on as planned on November 3rd. And lastly, for a quick and remarkable recovery for Maggie. Her birthday is the day after surgery and we have big plans to celebrate the wonderful results in her hospital room!

Please and thank you for your prayers, friends.

-

Another walking video...

2011-10-16T23:09:00.001-05:00

See how far she's come in a week!

YouTube Video

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First steps

2011-10-09T10:30:00.001-05:00

Okay this is not that exciting for moms of normally developing children. But for a child that is constantly off balance and dizzy, not to mention unbelievably tight in her legs, this is pretty huge so I had to post:)

YouTube Video
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Braces and food

2011-09-29T23:34:00.001-05:00

Maggie is getting leg braces to help with her walking since her legs are still tight related to my pregnancy. She was so good getting casted in the office today...

I don't know why but Maggie is losing weight again. The hard thing about having a g-tube child is figuring out how many calories they are burning so you make sure to give them enough through their tube. It's a mystery to us that she's losing again because she's not throwing up....but I'm hoping it's because she is more active....

Right now I'm trying to figure out how to increase the calories of her formula without making too much volume or making it too hard to digest. Ive tried adding whole milk and even pure whipping cream and both just ended up tearing up her sensitive stomach. Increased olive oil just goes right through her and makes her have a lot of dirty diapers. It really is exhausting to constantly think about something related to your child's health, especially when it pertains to weight. Sometimes I just want to throw a hostess cupcake in the blender, but that'd probably make her sick, too! Oh well, I'll keep trying to find the perfect ingredient to get a little chub on my sweet baby...

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Rustic French "Bebe" Shower Luncheon

2011-09-24T16:46:00.004-05:00

I had the honor of hosting a baby shower this morning for my friend Carrie Garcia. After traveling this week, I knew that I probably coulldn't host a shower at my home (and not be totally stressed out about it!). So I decided to do a baby shower luncheon. I mean, nothing goes better with pregnancy than absolutely divine food, right?! It was at my favorite neighborhood restaurant called Rise No 1, which I describe as Rustic French. Carrie and J.R. don't know the sex of their baby, so I went with greens and shades of lavender to go with our rustic French countryside theme.

What a beautiful day for a shower!

Invitation by Original Ink Designs

You can't try too hard when you are doing flowers for a party like this....I love the "just picked" look

I brought some of the girls' silver pieces to make it feel like a baby shower, and not a bridal shower!

Our menu

Mmmm...souffles!

After our decadent dessert souffles I didn't want to do cookies or candy for favors, so I did my favorite lavendar and honey hand creme from Anthropologie.

What a fun group!

Carrie and me

My little helper!

I just couldn't resist taking this photo...she dressed herself today, of course.

Updates

2011-09-22T04:29:00.001-05:00

The MRI results came back yesterday after a week of painful waiting. Thankfully there was no change from last year. Praise God for that great news.

We also had a good trip to Atlanta. We met with a renowned surgeon and really liked what he had to say. He didn't promise me he could cure her 100% (as so many have wrongly said before), but he said we've done everything else for maggie we possibly could. And surgery is really the only option left. He felt for sure Maggie's severity and unique type of torticollis has baffled doctors because it is due to the rare condition I had during pregnancy.

Now we have some serious praying to do. Unfortunately nothing is ever clear cut with Maggie, and rarely do two doctors agree on what to do. So it makes decision- making very difficult, especially when we've had two surgeries gone wrong in our family. But I had a good feeling about this surgeon, and feel like we may just be on the right path, medically speaking. Praying that we are...

Justin and I are so thankful to the Gaddis family who shuttled Maggie and I around Atlanta and loved and fed us in between. What a treat for us both!

Thank you for praying this week and continuing to pray...

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2011-09-13T18:13:00.000-05:00

Tomorrow Maggie is undergoing another MRI. The neurosugeon wants to look for anything else on her brain that might be affecting her vision, thus her head tilt. I almost hope that he finds something that would explain things...nothing bad, just some explanation. We have seen two opthamologists and she's had one MRI a year ago, and all eye probelms have been ruled out. So I'm not sure what else this would tell the doctor. But we are optimistic for answers.

Next week is another big step in our journey. Maggie and I are flying to Atlanta to see a specialist for a second opinion. Or maybe I should say our seventeenth opinion! I have done a lot of research on where to go in the country so am praying we get some answers in Atlanta. I always say I don't want to get my hopes up, but I always do....

Other than that, Maggie is doing really well! She stood by herself for three seconds yesterday, which she thought was hysterical. She is in that stage where she wants me to walk her around the house with my hands, but is scared if I let go with one hand.

Also some exciting news....

Maggie started Mother's Day Out! Now that she is almost two and her lungs are stronger, her doctor said she can go to Mother's Day Out and Church Nursery. In fact, he said she needed to go. She has been so isolated with her Chronic Lung Disease for so long. I remember when we left the NICU and they told me not to take her out for two winters. They weren't kidding! Now it's time for her to be around other children her age. The only caveat is that her nurse (Jessica) needs to go with her to do the feedings and medications. Thankfully the school agreed to this which we are so thankful for!

In addition to MDO, Maggie is also one of four toddlers in a feeding therapy school on Fridays. I go with her to this school. While Maggie and the other children get to "play" with the graduate students assigened to them, the parents have their own their little "school" where we learn about ways to overcome our child's feeding issues. What a blessing that a spot opened up for Maggie in this program and that her vomiting stopped so we could acutally go!

Another good bit of news is that the olive oil and avocados are doing their job. Maggie is now 24 pounds! We are so thankful to God for this huge improvement and for leading me to make this homemade formula. It has made such a difference! She actually looks healthier and fuller to me. And that weight gain will help in fighting any virues she may pick up at school (although Jessica says she is "pureling" like crazy at school!).

Here are some more pictures as of late:

We have a new princess in the house

Mary Lawrence started a new school

She was very confident walking down the hallway the first day...

But this was her reaction when we got to her classrom (aka she refused to go in!)

Thankfully her teacher lovingly welcomed her and she warmed up quickly. That is, after she announced to the class, "My name is not Mary Lawrence, it's Lawrence, like my grandmother."

So now at school, dance and soccer she has told everyone to call her "Lawrence".

By the way, after hating soccer last year, she loved her first practice and game this year.

Justin is relieved!

That's all for now. Other than please pray all goes well with anethesia tomorrow for the MRI.

Just playing

2011-08-30T20:23:00.001-05:00

Maggie is doing great after a week of recovering from her muscle biopsy. She stopped eating temporarily but is back on track eating okra, Funions and jalapeño sticks...

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Surgery Today

2011-08-16T21:48:00.001-05:00

Maggie was under anesthesia for three hours today having a hearing test, tubes put in, and a muscle biopsy. I was under the impression that the muscle biopsy was a tiny incision, but no, Maggie has a 3 inch incision on her thigh (which is like her whole thigh!) Poor baby is not feeling well tonight. I've been holding her all day, and am now rocking her while listening to old hymns on my phone and typing this in the dark.

I wanted to thank everyone for the prayers. I wanted to especially thank my dear friends who are always so supportive on days like this. I am very aware that everyone has their own struggles and issues with their children. Just because my child's issues are more pungent doesn't mean they are more important than someone else's. I know we get a lot of attention, and I hope I never come across as not caring about others as they have cared for me, because I deeply do.

In the waiting room at 5:50 this morning.

PS: In the past we never worried about Maggie being hungry after going without food all night (for anesthesia). She just never cared. Today, however, she saw the veggie puffs in my bag and started screaming hysterically for "cheetos" and "water"! It was so pitiful, yes, but it also made me happy that she is feeling hunger and wants to eat!

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New Developments

2011-08-14T15:30:00.000-05:00

I have been so excited about the progress we've made with the GI issues that I've neglected the non-progress we've made with her neck. Here is a recap of all the recent doctor opinions:

Functional Neurologist (Natural Medicine doctor) - He thinks Maggie has a condition called dystonia, which is a neurological condition in which muscles are contorted. Obviously, this is just one opinion and I'm not sure I agree with it. I asked about this last fall at Scottish Rite and the response from one doctor was "dystonia rarely happens in newborns and never in their necks." But this doctor is convinced this is what she has and, even though dystonia is permanent, thinks we can use neurological exercises to retrain or manipulate the brain to hold her head up.

Neurosurgeon - He wants to do another MRI to check for something that would affect her vision, thus her balance. I asked him about dystonia and he doesn't think it's a crazy idea at all. He's going to talk to some other colleagues around the country that specialize in movement disorders like that. Her MRI is scheduled in September.

ENT- Because Maggie has had fluid in her ears several times and has mild hearing loss, the ENT doctor wants to go ahead and put tubes in.The surgery is scheduled for Tuesday. Normally I don't think doctors would be this aggressive with their treatment for fluid, but she thinks we need to do everything possible to help with Maggie's equilibrium. If Maggie has a lot of fluid that can cause dizziness when she tries to hold her head up, and ear tubes help drain that fluid. As she said, we want to do anything we can do to help Maggie's vestibular system get in balance. She is also going to do a more accurate hearing test while under anesthesia (don't ask me how they check hearing while you're asleep but they can!).

Geneticist- I handed her a list of genetic disorders that could cause some type of dystonia or muscle issues. disorders. She discounted most of them, but she did draw Maggie's blood to test for a type of dystonia that's genetic. She also gave me some info on dystonia studies going on around the country that could lead to some expert doctors. This doctor doesn't think it Maggie has dystonia but thinks it's worth checking out. She also ordered a muscle biopsy during her ear tube surgery on Tuesday since Maggie has never had one. (doctors don't like to do muscle biopsies on babies unless absolutely necessary but at this point I think it's time). The biopsy would rule out any dystrophies or other muscle disorders. She doesn't think Maggie has any for the mere fact that Maggie only has muscle weakness in one area (her neck) and it's been consistent since birth. But we're testing to rule everything out.

Therapy - We had a new team of therapists come to our house to evaluate Maggie a few weeks ago (we are always seeking second opinions!). One of the therapists called me afterward and said that she was very concerned that Maggie was stressed out. In fact, she said she had never seen a baby so stressed. This was a little offensive to me as a mother. Nonetheless, I listened intently as she recommended that we cease all therapies for a month and stop all stretching at home. She said that we are not making huge progress right now anyway, and a month could just give her a little break.

In the past I've had other moms of specials needs children say to me, "You'll get to the point where you don't need to do therapy five times a week because it's just too much for the whole family, including the child." I knew we would get to that point, but thought it would be after we figured out what her diagnosis was and how we were going to to treat it effectively.

So it scared me to take a month off. A month of precious time. But after much thought, Justin and I decided that it would be a good idea for Maggie and for her big sister. Though convenient, it's very intrusive for Mary Lawrence to have someone come into her space four times a week and take over the den floor and mess with her baby sister. I can't count the number of times have I had to quiet Mary Lawrence as she screamed at the therapists, "Stop hurting my sister!" Besides, Mary Lawrence has been showing signs of stress, too. Those of you who have followed the blog remember how she deals with stress:).

I did like these therapists, though. And one of the things I am praying for is that they can help us get a brace made for Maggie to wear during the day. All the torture devices made for her so far don't allow for her to move and crawl around. (And it's more important for her to develop normally with a tilted neck than force her in a half-body brace where she can't move with a straight neck.) But Maggie's brain definitely needs to be retrained to know what is "normal" and the only way that will happen is if someone can make a daytime brace orcollar that will hold hear head straight and let her move around. (Any engineers out there up for a challenge?)

Funny that I have been trying to "make" her some kind of contraption for months now. I'd go to JoAnn's, buy some foamy materials and try to put together something. But anything I make she'll just rips off. Recently I asked my friend who's in the design business for some foam rubber from an upholsterer.I am going to cut out something like a collar, and just see if it will help at all!

The good news is these therapists have an orthotics person who may be able to help. Please pray can for this if you can. I know Maggie is uncomfortable tilted all of the time. And the older she gets, the harder this habit is going to break (if it's a habit at all, depending on how the theories I mentioned in the beginning pan out)

The therapist also said that we are doing so many therapists - OT, PT, ST, Cranial, Chiropractor, and Functional Neurologist - that it's hard to know what's really working and what could be negating the impact of another. They suggested that we only do one at a time to see what's really working. it was a compelling argument for sure. And Justin and I are still pondering what to do exactly. I feel like we haven't given the chiropractor enough time to do his job, and same for the other guy. I want fast results, but maybe we are going about it all wrong. Oh, Lord, how we need your guidance and help!

Thank you for praying for Maggie's proceduers go well on Tuesday and that she does okay under anethesia.

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Cheetos, Funions, and Saltines

2011-08-11T15:00:00.001-05:00

Another few days have passed and she's still not throwing up and still wants to eat. Nothing sweet, nothing soft, Maggie prefers salty and crunchy. Her "go to" foods right now are Cheetos, Crackers, Veggie Chips, and Funions. Hilarious, I know. We've tried cooked carrots and green beans but she said "yucky" and started pointing to her tongue in disgust. Oh well. At least I can cheat and pump her full of spinach and peas! (But if anyone has any other similar foods to try, please let me know- remember developmentally she has the mouth of an eight month old).

Her dietician did approve the formula (only after saying she can't endorse homemade formulas and wouldn't trust most parents to do it). But amazingly her GI doctor said he was ecstatic about it and asked for the recipe for his other patients! He said he wished we had tried it sooner....crazy, huh?

I had several people email me after my last post and comment that it looks like she holds her head straight when she swallows and, yes, that's right! Her brain knows that in order to be an efficient swallower, she needs to have a straightened throat.

I have some updates on the progress of her neck which I will post later, but for now here's one more video for all of Maggie's cheerleaders who love this stuff as much as I do. In the video Maggie is eating a cheeto and ML a Fun Dip (not the model of good mothering here!). And if you listen closely you can hear her say "eating," "yummy," and "cheese":

YouTube Video

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Answered Prayer

2011-08-06T07:00:00.001-05:00

Maggie has been doing so well on her homemade formula. She is no longer gagging, and rarely throws up. If she does, she's able to "recover" so to speak. Before we had to feed her six ounces of formula over two hours- that's not even a full baby bottle. Now we can feed her that same amount in 15 minutes. I cannot express how huge this development is!

Furthermore, we have seen an amazing transformation in a child who just a week ago refused ALL foods, to a child who is now actually interested in eating. Her mouth is so weak and underdeveloped from a year of not using it, so she's not swallowing much of the food she puts in her mouth. But as you can see from the video below, when we offered her mashed up lasagna last night she totally understood what she was supposed to do with it. And was actually trying to self-feed!

I feel like we've made six months of feeding therapy gain in one week. It surely has to do with the fact that she must feel so much better with real food in her stomach. And I assume the homemade formula has made a huge difference in her GERD. Honestly, I am dumfounded at this dramatic change and can only give thanks for this answered prayer.

What a joy it was so see Mary Lawrence's reaction last night during our usual "Maggie" prayers to 'heal her neck and help her stop throwing up.' I opened my eyes and said, "Mary Lawrence, God has answered one of our prayers: Maggie's not throwing up anymore! See, God really does answer our prayers!" Her eyes got really big as she nodded her head in disbelief and stared at the ceiling. I could see her little mind trying to grasp our big God. Then she just looked at me with the biggest smile and started giggling. For the first time she was experiencing the wonder of our magnificent Creator, who answers even the prayers of a four year old little girl. It was a moment I'll never forget.

Thank you to everyone for your prayers, too. Enjoy!:

YouTube Video

- Posted using BlogPress from my iPhone

Food Rebellion

2011-08-02T13:04:00.002-05:00

I definitely have turned a over a new leaf. I am a rule follower. When it comes to Maggie's health, I have done exactly as the doctors have told me to do. Up until recently that is. First the alternative doctors, now her food. Let me explain:

Maggie doesn't eat anything by mouth, so she gets all nutrition through her feeding tube. Since her g-button was placed last September, she has been on every kind of "enteral" formula (which means it can go through the tiny hole in her stomach). We have tried everything from the mildest, broken down formulas all the way up to the more common formulas like Pediasure. But none have seemed to make much of a difference in her vomiting. I never thought it was her formula causing vomiting, but we still went through the process of ruling it out.

When Jessica (her nurse) started working for us, she told me that she's seen a lot of moms make their children's feeding tube formula. I thought it was an interesting fact, but it never crossed my mind that I would do something like that. Making your own g-tube formula was for the "au naturel" hippie types who balk at the idea of putting a commercially made formula into their babies, right?!

Don't get me wrong. I made most of Mary Lawrence's baby fruits and veggies. But not because I was a super nutritional freak. It was more because it made me feel like I was doing something right amidst of all the self-doubt of being a new mom. (Plus, back then I actually had time to chop, blend, and freeze!)

As time went on, though, I started thinking about more making Maggie's formula. I mean, would a pediatrician tell parents it's okay for their toddler to eat nothing but pediasure? Absolutely not. So why is it okay for tube-fed children?

I know they have their reasons - it can clog the tube and the doctors can't calculate the exact nutritional contents as easily as they can with commercially made formula. But still, it just doesn't seem good to never have anything fresh in your stomach. Think about it - all she ever has in her stomach is processed formula sloshing around. Nothing thick, full, or dense to weigh it down and, well, keep it from coming back up.

So we're at feeding therapy a few weeks ago and talking about foods she likes to put in her mouth and things she doesn't. I told her that Maggie hates anything sweet and gags when we give her fruit or milkshakes or Popsicles. But she loves to suck on sour and spicy things. Why? Well we think it is because all she's ever had in her stomach -thus all she ever throws up -is her sweet-tasting vanilla formula. (I'm so sick of it that I want to gag when I open a can!) So no wonder she acts like sweet fruits taste gross; everything she ever throws up is sweet. She does, however, like to suck on pickles, pickled okra, jalapeno ranch dressing and wasabi peas - not kidding about the last one.

Her feeding therapist then suggested we try making her formula, and commented that a lot of her patients are on homemade formula. She said that when a child on homemade formula burps (this is gross, sorry), they learn what real foods tasted like and that is good from a feeding therapy standpoint. "But the doctors tell you not to do that," I countered. It's then that she said something that hit me like a ton of bricks, "Well. sometimes, you have to take the reigns of your child's health and make the decision you think is best for her." Hmmm. .

So I went home and ordered some literature on homemade formula. And I poured over it for weeks. It was all very overwhelming for a non-math person. You have to calculate everything perfectly to make sure they are getting their exact nutritional needs for their weight and age. They can't get too much of a vitamin or too little protein (which makes me think of other toddlers that eat nothing but goldfish and chicken nuggets but that's another question for another day!) And there is not one magic formula that works for every child, so you kind of have to figure it out on your own. This stresses me out big time. I am a Type A person: if someone gives me a plan, I'll follow it exactly. But there is no set plan, and with homemade formula it's kind of trial and error with what agrees with your child.

The exciting part was that everything I read about blended formula from moms is that their child's reflux got so much better once they were on it, and some children actually showed interest in eating. I also read stories of incredible weight gain and overall changes in happiness. It all sounded so great! But still, did I have the courage to take this step??? (I am a wuss, I know!) I mean, what if her tube clogged and I had to go sheepishly to the GI clinic and explain. Or what if it made her sick and she threw up peas and pureed turkey all over everything.

But this past weekend I hit a point where I couldn't take the vomiting any more. So I ventured off to Whole Foods and got everything I needed to make my first "concoction." Her nurse offered to cook the organic chicken in the Crock Pot overnight. The next morning we attempted to puree the chicken in the food processor. We gagged so much that we almost had to stop the process. (Tip: never grind up meat at breakfast time). Unfortunately we couldn't puree the meat enough to put in her tube, so I'll have to settle for jarred baby meat. (Oh darn). But the good news is that we were able to blend up the other ingredients into a formula that was thin enough to go through her tube. The first time we put it through her tube, Jessica and I held our breath we were so nervous to see what would happened. But I have to say, there was something so satisfying about putting real food into my child's stomach!

So how did Mags react to it? Well, since we started the homemade formula three days ago she has only thrown up once. That is very good compared to our most recent average of 2-3 episodes a day. Maybe this will change everything....

Here are some pictures of my food "rebellion":

Some of our ingredients this first go round: Omega oil, soy milk, olive oil, avocado, real fruit juice.

About to blend it all up!

Finished product: Four 8 ounce servings out in containers I found in the Target dollar bins. So satisfying.

Wild Goose Chase

2011-07-31T22:34:00.001-05:00

If someone told you to turn a piece of paper with a "P" on it clockwise 30 times, would you do it if they promised it would help your child get better? Let me answer that for you - yes you would.

It seems once again we are back to reevaluating Maggie's neck. We seem to be in a pattern of going to a new doctor, following their advice for 3-4 months, only to realize whatever they told us to do is not working. And then I panic that she has some horrible condition that we have missed all along. I then find myself waking at 2 am to research on my iPhone (it's the only time I really have peace and quiet!).

To say we've been on wild goose chase to help Maggie is an understatement. Our new course of action began when we were in Little Rock earlier this month. At the pool with my sister and our children, I notice another mom approaching me with the now familiar "I'm about to give you advice about your child's neck" look on her face. I dread these moments, because they happen so frequently and I am just tired of being polite when complete strangers tell me that I "should really consider doing physical therapy with Maggie."

This mom was different though. She went on to tell me that her son had a similar condition and when he was 11 months she saw an "orthospinologist'" while visiting her mom in Florida. And he "fixed' her son. Something about how his skull was out of alignment with his spine. I quickly dismissed her and told her we've had MRIs and CT scans and Maggie is structurally normal. But she insisted I check it out. And I did - immediately on my iPhone!

Basically an orthospinolgist is a specialized chiropractor who focuses in the neck area. I figured either this was a sign from God, or just another dead end. But either way, I had to find out.

So over the past few weeks we have been driving 45 minutes each way to the nearest reputable orthospinologist. His opinion is that in my very emergency c-section the doctor pulled her so hard and fast that her skull was pushed out of its normal position. He said he would classify it was a "traumatic injury." Never heard this reasoning before, but I have to admit, it was compelling. What was even more compelling is the first time we saw him he said with complete sincerity, "Oh yeah, I can fix her."

Most people would jump for joy at this statement. I just kind of chuckled. I've heard it all before and been disappointed so many times, but I am willing to try anything. After all, he can't hurt her. His treatment is very gentle unlike some chiropracters. And since the treatment began, we have seen her moving her neck more. No dramatic changes yet, but I want to give it at least another month or so.

In addition to the orthospinologist, we were referred to a functional neurologist by one of her therapists. I really don't even know how to explain what a functional neurologist is, so you might have to google it. But he's not a medical doctor. He takes a different approach - he looks at the whole picture of what's going on, including sensory and nutritional stuff.

I know people reading this are probably rolling their eyes. Hey, I'll be the first to admit I am skeptical of non-medical "doctors." But we've been to just about every specialty of medicine and no one has been able to really help us so far. I know deep down that there is something else going on with Maggie that no one has figured out. And I am not going to stop until we figure out what it is.

Anyway, his opinion was very different from the orthospinologist. He thinks Maggie has a chronic condition that has nothing to do with her muscles or bones. Rather he says her head tilt is a neurological issue (which contradicts everything we have been told so far). The interesting part of it is that he believes the brain can be manipulated to cope. Meaning we could retrain her brain to hold her head straight.

So that's where the whole turning the letter "P" clockwise comes in. He wants us to do this and a few other "exercises" to test her brain's response to certain stimuli. Yes, I have really been doing that to my child. And, yes, Justin thinks I have lost it completely!

So we are going to check back with the functional neurologist this week and see if it turns out to be anything promising. Also up this week is the ENT to talk about Maggie's hearing test, a consult with some new therapists, two visits to the orthospinologist, two PT appointments, two OT appointments, one cranial sacral appointment, a fitting at Scottish Rite for her new nighttime brace, and also a follow up with her neurosurgeon. And, yes, this is a normal week for us. One of my good friends, in trying to explain our situation to an acquaintance, described it as "Lee has more appointments in one week than most moms have in a year." Well put!

Anyways, I am preparing for the neurosurgery appointment with lots of good questions and research. But my mind keeps coming back to how I'm going to explain our recent "alternative treatments" to this world-renowned pediatric neurosurgeon...

Stream of my thoughts..

2011-07-17T16:07:00.000-05:00

Maggie is now losing weight. I could not contain my disbelief at the ENT's office the other day when we weighed her. I thought something was wrong with the scale. Surely not, I said. We've been on this strict schedule and she hasn't been vomiting but once a day, and the dietitian assured us she is getting the proper amount of calories every day. It just doesn't make sense. Is there another issue going on that we haven't discovered?

I look back at pictures from the wonderful month of April when the e-stim was working and her legs actually looked a little chubby. How could I notice that her face is now almost gaunt and her legs are so thin? I want to scream for somebody to help her. I left several messages for the doctor, nurse and dietitian three days ago - do they not see the urgency in this situation? She is tired more than usual and really fussy. She grabs her stomach in pain - but she cannot tell us what is wrong.

Lord, help us. Show me what to do. Should I start making her own formula? The doctor and dietitian say no, but I've heard so many stories of success with vomiting and failure to thrive babies from moms who have done it. At one point do I stop listening to the doctors and try something on my own?

Is it the right thing to go to another city? Is it going to be a big waste of time and money and only leave us more frustrated -as happens to many times - because "renowned" doctors don't want to commit to these strange cases where success might not be in the future. I am sending her records off to the two of the best GI clinics in the country. Lord, if it is your will, lead us to the right doctor who can help Maggie.

I just cannot believe we are back to the this issue, when we should be dealing with her neck issue? But I know that really she make progress anywhere else until she starts gaining weight and her strength back. But, really, what is the deal her neck? Is it ever going to get better?? Every time I look at her I just feel anger and frustration. Not at her, but at myself.

And hearing loss? I just could not believe it when the audiologist told me that the other day at her hearing test. Please, Lord, let it be from fluid in her ears so hopefully it will get better. But how come no one told me she was at risk for hearing loss being on oxygen and antibiotics so long?

Lord, help this child. Heal her. Bless her. Show us your plan for her life. Give me joy like Maggie has joy- and rid me of all bitterness - as I continue on this journey.

My new checklist...

2011-07-02T21:07:00.000-05:00

So we got our new e-stim machine and have been using it twice a day for 10 days now. And strangely, Maggie has not had the same exciting head-straightening reaction as before. All of us have been stumped. (And when I say "all of us," I mean her nurses, her new OT, her old OT, her PT, Justin, and myself ).

Was is that we had stopped doing the e-stim for so long?? No, that couldn't be it, I told myself. The very first time we did e-stim (see the video on this blog) she had an amazing response. And we had never done it before that.

Was it that we were using the machine incorrectly? No, that wasn't it. We checked our machine, called the company, called her old OT (Ashley) and sent her videos to makes sure, and, yes, we were placing the eletrodes just right.

Another mystery with Maggie. What else is new, right?

But today Ashley (her old OT) called me from Philadelphia and hit me hard with a revelation. Perhaps Maggie is not holding her head up as much because she is weak. She hasn't gained weight in three months due to her severe vomiting. And she is burning many more calories with her now speedy crawling and cruising. Maybe her body is just conserving energy and it's a lot harder for her to hold her neck up? It made total sense to me and I believe it could be a real possibility.

So the bottom line is: Maggie has to gain weight and soon. And we have got to figure out what to do when the Botox wears off. We are seriously considering going to another city for a GI opinion because really there is no one else in Dallas who can help us.

But back to the weight gain. Even though I am a Type-A, organized person, I have rededicated myself to making sure Maggie is on a strict feeding schedule. When we first started having nurses at our house I assumed that typing out Maggie' basic schedule was sufficient. But it was really hard for the nurses to remember to do everything they were supposed to do each day. I guess when it's not your baby, it's hard to remember everything. (Or maybe Maggie is just a very demanding patient!)

Anyway, I was very lenient about things. For example, if Maggie was supposed to eat at 3, but the nurse didn't get to it until 4, I just nicely shrugged it off and said that we would just push back her 6 o'clock feeding to 7 o'clock. But that would push us back the rest of the night so we ended up trying to feed her more than she could take and she would vomit, thus losing vital calories she needed. Of course, I am mad at myself for not being more strict about it but the only thing I can do is change moving forward, right?

So last week I created a new checklist for the nurses and myself to go by each day. It includes her feedings, but also checklists for stretching, e-stim, joint compressions, and brushing (no, not hair brushing - it's a brush that goes all over her skin to help with her sensory stuff).

We keep this in the front of Maggie's "binder" (which we use throughout the day to log all of her meds) so we can all be accountable to do what needs to be done each day. Let's face it, it is very easy to "forget" to do the stretching. I mean it's absolutely awful to do. I hate doing it. But it needs to be done. Same with the e-stim. It's hard to fit in thirty minutes of making Maggie be still when she already has to be still five times a day for thirty minutes while she is being fed. But we need to do it.

So here is the checklist for our little, but exhausting, patient:

Oh I hope she starts gaining again soon!!!

Beach Trip 2011

2011-06-28T16:51:00.001-05:00

We were able to get away to Florida a few weeks ago and what a blessing that was! Our family had lots of togetherness with nothing much to do - what a welcome change! We were able to see dear friends, too, - the Lipseys from Jackson, the Yates from Memphis, the Williams from Dallas, and the Arnolds from Memphis, and on the last day, our sweet nephews - Noah, Pierce, and Emerson Phelan. So of course I had to do my now annual (and cheesy!) beach video!

(Click on the box below)

41 Words

2011-06-24T15:31:00.001-05:00

Maggie may be struggling with a lot right now, but one thing we are not worried about is her speech. In our three hour appointment at Scottish Rite today I thought it would be fun to write down all the words Maggie is saying. 41 words! Pretty good for a 17 month old(that's technically what she is), especially considering that Mary Lawrence wasn't even saying "mama" at this point in her life. What a blessing!

Airplane
Bye bye
Hi
Mama
Dad
Cow
Moo
Bubble
Pop
Eye
Uh oh
Ball
Balloon
No no
Up
Light
Down
Open
Hold me
Hi baby
Water
Tv
Blue
Bow
I'm cute
Phone
Wee
Jessica "caca"
Blanca
Baby
Help me
Night night
Lolly
Necklace
glasses
Row row row (your boat)
Nemo
What's that?
Mine
Mermaid

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Procedure

2011-06-21T15:24:00.001-05:00

Maggie was able to have her Botox in her neck and stomach yesterday. We are so thankful to have that done!. Thank you for praying.

Maggie has not gained weight in three months so if this doesn't help her gain we will have to try other things and try them soon. We had a long talk with the GI doctor expressing how frustrated we are with the constant vomiting and how even more frustrated we are that it's the g-button that is causing the vomiting. We reminded him that we "gave in" the g-button to make our lives easier, and instead it's made our lives a living nightmare. Our child gags and vomits everything we put in her; her eyes water and her face turns red and she can't breathe well. These episodes go on for 5-6 minutes and it ends with everything within two feet of her covered in vomit. Her mouth must taste horrible, but she refuses to drink anything because she is so scared. (I try to brush her teeth but it's hard to jam a toothbrush in the mouth of a baby who has an oral aversion and gags whenever anything enters her mouth!)

Anyway, the doctor said that even if we took the button out and surgically placed another one somewhere else in her stomach, the vomiting would probably not get better. The reason is because the anatomy of her stomach was forever changed by the initital surgery. The only thing that may help, he said, is a permanent surgical procedure called a Nissen that we have avoided all along because it can cause even more gagging and wretching. But as he said, if she's not gaining weight we have to do something.

This was very discouraging to hear. Basically one surgeon and one surgery has forever changed my daughter and we don't know what her future will look like as far as vomiting and eating. She could vomit and gag for many more years - or the rest of her life - and never be able to eat. We just don't know. I told one friend I am angry and sad at the same time. Maybe if I had spoken up for my daughter in the beginning when I felt like something wasn't right with the button, maybe, just maybe, we'd be in a different situation.

I am not giving up hope just yet. We'd like to get another opinion on the matter. And I am still praying for dramatic change in her vomiting (and neck!). We got our e-stim machine so we will be working on that, too.

Botox tomorrow - hopefully!

2011-06-19T13:57:00.000-05:00

Well, both girls have been sick with fevers and colds. So we've had good reasons not to get out in this dreadful Dallas heat!

Maggie is holding up pretty well, but I am not sure they will let her go under anethesia tomorrow unless she gets a lot better. I'm praying for quick healing so she can have this done and we can move forward on our path of getting her neck and reflux better! Praying also for the doctors and nurses to take good care of Maggie tomorrow if she does have the procedure.

Thank you for praying.

Updates/Prayers

2011-06-13T07:37:00.001-05:00

I've been wanting to update on Maggie's health issues, but have been hesitant because I'm sure people tire reading of our struggles and needs. But I cling to the hope that God hears and answers our prayers, as He already has showed us so many times, so I pose these updates as prayer requests for our sweet baby:

1. Her neck: We stopped the e-stim two weeks ago after our therapist left. We are waiting to get a prescription for a machine for home use and to see if insurance will provide one. I know we will get one somehow, but the discouraging news is that ever since we stopped the e-stim Maggie has ceased holding her head up on her own. I'm not sure what this means long term, but I have been deeply discouraged. I just never thought she would backtrack so fast. Please pray that she would start holding her head up again and permanently. Every baby/toddler I see I can't help but look with fascination at how they hold their heads up and then be so discouraged that mine can't do the same.

2. Vomiting - it's unbelievably bad and has been for a while. I just have gotten used to it, but a few weeks ago I realized (once again) that it's not normal for a 23 pound baby to not be able to hold down 4 ounces of milk. It's like a geyser of vomit is always waiting inside Maggie and anything will set it off: crawling, laughing, crying. The sad thing is she actually is showing interest in big people food (she's done with purees). But if we try to give her a saltine or watermelon or anything solid, as soon as she swallows it she gags and throws up all her milk. Thus we are faced with a conundrum: We want to encourage her to eat but if we do, she will vomit all the time and lose weight. Bottom line: the child will never be able to eat unless we get the vomiting figured out, and her GI can't seem to. I still think it's the placement of the button and keep asking if we need to
"start over" with a new incision for the button, but still have been given the "let's wait and see" answer.

3. Botox- Part of the "wait and see" answer involves another Botox round in her stomach and neck on June 20th. Please pray for her not get sick this week so she can go under anesthesia for the Botox. It has been a complete nightmare getting this thing scheduled with the two doctors so I just want to get it over with already. Please pray for no complications and for it to help her neck and vomiting and not hurt her.

4. Doctors- I am questioning again if we need to seek out other opinions. Frankly, I'm so exhausted and burned out. I don't want to drag her to another doctor or worse, another city, to be told the same things we've already been told. I'm praying for wisdom on this decision.

5. Protection- Last night about 10 pm I heard Maggie moaning in her bed. It's not abnormal for her to moan until she can soothe herself back to sleep. But something moved me to glance at the video monitor. There she was sitting up, eyes closed, with the tubing from her feeding pump wrapped around her throat twice. I ran in there and, thankfully, she was fine. It wasn't tightly wrapped around her throat to the point where she couldn't breathe. But if she had laid back down, she wouldn't have had enough slack and wold have suffocated. Praise to God that she didn't..

Yes, last night one of my biggest fears came true. This is why I haven't slept well in over a year- there is nothing safe about having a cord in your baby's bed. But she has to have it in order to live. She gets most of her calories during her continuous nighttime feed. And taping it down against the bed doesn't solve the problem because she moves around and could yank out her button, or worse, get caught on the even shorter tubing. Please pray for her safety and again for this vomiting issue to be resolved so we don't have to do the continuous feed at night. (I sure hope my mom doesn't read this post... she'll never sleep again either!)

Thank you for keeping us in your prayers as always. I know God will lead us to do the best thing for our daughter- I just need patience in getting there...

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Pride, Denial, and Some Help from Above

2011-06-01T15:10:00.002-05:00

"...your Father knows what you need before you ask him." Matthew 6:8

Having a child with medical problems or developmental delays forces one to open up so much of their otherwise private life and depend on nearly complete strangers for the well-being of their child (doctors, nurses, and therapists, etc). This was extremely hard for me in the beginning. When we brought Maggie home from the hospital, several of my friends asked me if I was going to have someone helping me with Maggie. I pondered the idea of a baby nurse, but besides being so expensive I honestly did not want another person intruding into our lives. I was so tired of doctors and nurses hounding us with instructions on how to care for our baby. I was so tired of people just around all of the time. I just wanted privacy and I wanted to do it myself.

So for those first cold months of 2010 after Maggie came home from the NICU, our family hardly left the house. And I so enjoyed it! We got in a routine and life seemed pretty good. But then Maggie stopped eating, and her torticollis became more pronounced as she grew. When the threat of RSV passed in April, the doctor ordered us to start the full range of therapies - speech, occupation, and physical therapy.

Soon I was racing back and forth to doctor appointments and therapy appointments and trying to do all the therapy "homework" at home. It was quite normal for us to have 2-3 appointments a day. Soon our quiet life holed up in our tiny house was turned upside down. I became a slave to helping my baby overcome her problems. And it consumed the entire family.

I just never in a million years imagined that she would have this hard of a time. (Can you say denial?) No question I have a skewed perspective. I remember when Maggie was about six months old we were discussing her issues with her pediatrician and he said, "I don't know why, but Maggie is just having a harder time than most 29 weekers." I couldn't believe my ears. Here I was thinking she was doing great for what she had been through. I mean, she was alive, wasn't she? And for someone who was not supposed to have any lungs, she only stayed on the ventilator for 10 days and was no longer on oxygen at six months of age. I thought that meant she was doing pretty darn well.

But now I realize now that most 29 weekers do a lot better than her. I have seen 24 and 25 weekers do better than her in their first year of life, and that is piercing to the heart of a mother who watches her child struggle. But I have to remind myself that those babies had the life-enhancing amniotic fluid throughout their time in the womb, however short that was. Maggie did not. And because of the lack of research, we will never know what kind of impact that had on her start at life.

So it was at our year checkup in November that I officially broke down (not on purpose) in front of our pediatrician about how I just felt so overwhelmed with the constant medical issues. It was then that he suggested we start nursing care for Maggie. Of course, I wouldn't hear of it at first. I didn't want someone in my house. I didn't want people to misjudge Maggie if she had a nurse following her around all of the time. I wanted her to be as normal as possible.

A few months went by though, and life seemed to only be getting harder and not "normal" as I defined it. So we decided to pursue the nursing thing and see if it would help Maggie and me. We went through the tedious process of getting it all approved and finally we started trying different nurses in February. Unfortunately, I kept sending them home because none of them were up to my standards. We would find a an okay nurse and I would spend the first few days teaching her what to do with Maggie (medications, feeding 4-5 times a day through tube, feeding 4 times in high chair, therapy exercises in between). And then she would quit the next day. This happened 5 or 6 times in a row and I started getting offended - I mean our life is not that hard, is it?

Just when I started to write off home health care altogether, a sweet nurse named Jessica showed up. She was young and sweet and instantly loved Maggie. She promised me in the beginning that if she was a good fit that she would not leave us. And she hasn't! Finally after a month of having her come 3 -4 days per week I feel some relief. I feel like I am not suffocating under the pressure of trying to do Maggie's routine all by myself. I am not always at my wit's end and no longer short with my husband (okay, I still am sometimes, but not in every conversation!).

The nice thing about nursing care is that I am still with Maggie all of the time, but my day is not consumed with being, well, a nurse! I can sit down and eat lunch with Mary Lawrence while Jessica feeds Maggie. It's amazing when I realize how much time Jessica spends on Maggie's morning routine of feeding, bath (due to overnight vomit), changing linens, and medications- I wonder: what did Mary Lawrence do for those first two hours of each day when I was doing all of that?

So one more thing I regret about this past year: not putting my pride away sooner so I could get help and give Mary Lawrence the attention she needs. I also can't help thinking that if I had started nursing help sooner maybe Maggie would have been doing better, too. I have realized that nursing care (or any kind of help) does not mean your child will never be independent. It just means they might need a little help getting there sooner.

Which brings me back to my original point about trusting what otherwise would be strangers for the betterment of your child. We have gone through several doctors, nurses and therapists, trying to find the perfect ones for Maggie. Finding the right therapists has been the hardest. We'll find a great and then be saddened when we learn three months later she's leaving (turnover is high in these therapy places). It's hard not to question God on these things. Consistency, please! I want to plead.

But I have learned that this journey of ours is like a relay race. And Maggie is the baton. God has seen to it that she is being passed along to a different health-care provider at just the right time - either when it seems she has hit a wall in her development or the therapist has nothing else to offer. It's hard to move on, but every time it's been for the betterment of Maggie.

Ashley, Maggie's Occupational Therapist, is our latest therapist to move on. We are so sad about it because she has been a godsend in every way. She took over last fall when Maggie's second OT quit, and has pushed Maggie so much. It was her goal to have Maggie sitting up by mid-January (which I couldn't imagine, but Maggie did!). And it was her idea to try the e-stim and even found a doctor to write a prescription for her so we could try it. No one thought it would make a difference, but boy were they wrong! Ashley is moving on to one of the best children's hospitals in the country, but said that Maggie will probably be her biggest accomplishment for the rest of her career. And she's only 25. Is that not incredible?

So of course I sobbed and sobbed as we said good-bye last week. Mary Lawrence cried, too. When you depend so much on someone for your child's well-being and future, you feel like your heart is being ripped in two when they move away.

You see, while this past year has been the hardest of my life I have no doubt seen God's hand in all of it. How perfectly He has selected all of these therapists and doctors and nurses to help Maggie in various ways. How he has taught me to accept help with thanks and grace, and not to be ashamed of it. How he has held our family together in some of the most trying times. How he as humbled me again and again when he has brought complete strangers to my skeptical door, and made them into lifelong friends - who have changed Maggie's life (and mine!) for the better.

(Ashley and Maggie )

Pure Joy!

2011-05-08T20:54:00.001-05:00

Today is the first time I have taken a picture with my baby's head straight - thank goodness I have a quick shutter on my camera because she only does it for about two seconds! She is just tickled with herself!

Nothing has been a sweeter blessing in my life than being a mother to these two girls. Happy Mother's Day to my sweet friends out there who are all such wonderful mothers!

Happy Mother's Day to Me!

2011-05-07T13:30:00.001-05:00

So I think I got the best mother's day present this week. On her third day of e-stim with her Occupational Therapist, Maggie finally started to show some reaction to the stimulation. You'll see in this video her neck pop up when the stimulation is on.

This next video is a few hours later with her Physical Therapist in our backyard. Maggie is not connected to the machine. In the background the therapist is bending her own neck to the side and then brings it up and asks Maggie to mimic her. And she does! Watch:

What does this all mean? It means that a) Maggie does not have nerve damage b) she does have function in that weak muscle c) hopefully with a lot of therapy and the brace and unconventional treatments like this Maggie will actually be able to hold her head up one day!

In the beginning of the week, when I was feeling so discouraged about it all, Maggie's OT sent an email out to all of her colleagues asking for any other creative suggestions to help Maggie. One person emailed back and asked if Maggie was in Speech Therapy. (She is, but they mostly focus on feeding). Her reasoning was that we need to get Maggie really good at one thing. "Like to boost her confidence?" I asked jokingly. But, yes, that was her reasoning! I lauged it off but after seeing Maggie totally understand what her Physical Therapist is asking of her, I totally get it. The more Maggie can understand and communicate about what she is feeling and doing, the better we can help her. I just feel like it is such a breakthrough that she understands "hold your head up."

I know, as the therapists have reminded me over and over, we have to be careful not to push her too hard because she is going to be really tired (and we don't want to give her a complex!). But, wow, what an encouragement this week and answer to prayer that, yes, there is hope that Maggie will hold her head up on her own one day!

Thank you for continuing to pray.

And here's one more video from this afternoon. You can see everyone is excited about this new developement:

Pure Madness

2011-05-03T21:56:00.003-05:00

Phone Call #1 (at Baylor for Occupational Therapy; 9:30 am):
Me: "Hi I need to make an appointment with the ENT clinic for my daughter."
CMC (Children's Medical Center): "I cannot connect you directly with the clinic or give you their number but I can connect you to our Kids' Line to who schedules all appointments for that clinic."
Me: "That would be great, thanks."
CMC Kids' Line: "How can I help you?"
Me: I need to make an appointment for my daughter.
CMC Kids' Line: What is her name and date of birth?
Me: Blah Blah
CMC Kids' Line: "What is her address?"
Me: "Blah Blah"
CMC Kids' Line: "Your name, please?"
Me: "Lee Cordon"
CMC Kids' Line: Okay let me connect you to the scheduler."
Me: "I thought you were the scheduler."
CMC Kids' Line: "No, ma'am but I will connect you right now."
Call is disconnected. Ugh.

Phone Call #2 (still at Baylor, 9:45 am):
Same as call #1, but after ten minutes get connected to an actual "scheduler":
Scheduler: "How can I help you?"
Me: "I need to make an appointment for my daughter. Dr. *** recommended that she see an ENT for a second opinion. He specifically recommended Dr. ***** or Dr. ****** for her issues."
Scheduler: "What is her name and date of birth?"
Me: "Blah, Blah."
Scheduler: "Address?"
Me: "Blah Blah"
Scheduler: "Your name?"
Me: "Lee Cordon"
Scheduler: 'Okay, I am going to need a referral from your daughter's Primary Care Doctor before I can make an appointment at that clinic."
Me: "Why do you need that? My insurance does not require us to get a referral for specialists."
Scheduler: "We have to have a referral from her PCP before we can schedule an appointment."
Me: Okay, what is your fax number?"
Scheduler: "***-***-****."
Me: "Thank you."

Phone Call #3 (driving in the car on the way to UT Southwestern for Speech Therapy; 10:15 am):
Me: "Hi Martha, can you please fax a referral to this number?"
Pediatrician's Office: "Sure, I have the form right here and will do it right now."
Me: "Oh thank you, Martha. I really appreciate that."

Phone Call #4 (on the way home from therapy to drop Maggie off with sitter, 11:45 am)
After 10 minutes on the phone with the 'Kids' Line' I finally talk to a "scheduler"....:
Me: "Hi, I think we spoke earlier. My name is Lee Cordon and I am trying to make an appointment for my daughter Margaret Cordon. My doctor's office faxed a referral about an hour ago and I just want to go ahead and book that appointment.
Scheduler: "Let me see if we got that fax. Hold please."
(Hold for 15 minutes listening to tips for Summer Safety. Heard three times that 9,000 kids get injured every year in lawnmower accidents.)
Scheduler: "Hi, yes, ugh, we did not get that fax."
Me: "Are you sure because she said she was sending it right away."
Scheduler: "Yes, you need to call your PCP office back and have them call you as soon as they fax it and then you can call and make an appointment."
Me: "Okay I will call but I am pretty sure they already sent it."
Scheduler: "Well we cannot make an appointment unless we have that fax."
Me: "Okay, thank you."
Click.

Phone Call #5 (on the way to get Mary Lawrence from ballet; 12:10 pm)
Me: "Hi Martha, it's Lee Cordon. Did you send that fax? CMC is saying they didn't get it."
Martha: "Yes, I sent it."
Me: "You sure you have the right number? ***-***-****?"
Martha: "Oh yes, we send stuff to that fax all of the time."
Me: "Okay thanks Martha!"

Phone Call #6 (on the way home from taking ML and a friend to lunch; 1:45 pm)
I look up the number for the 'Kids' Line' direct phone number:
CMC Kids' Line: "How can I help you?"
Me: I need to make an appointment for my daughter.
CMC Kids' Line: What is her name and date of birth?
Me: "Blah Blah"
CMC Kids' Line: "What is her address?"
Me: "Blah Blah"
CMC Kids' Line: "Your name, please?"
Me: "Why do I need to tell you all this stuff if you are just going to connect me to a different person who will ask me all the same questions?"
CMC Kids' Line: "Sorry, ma'am, it's what we are supposed to do."
Me: "I know, I'm sorry, I'm just frustrated it's taken so long to just make an appointment today. This is like the fifth time I've called today it feels like."
CMC Kids' Line: I'm sorry, ma'am. Let me connect you right away to a scheduler."
Me: "Thanks."
Click. Disconnected Again.

Phone Call #7 (girl are napping, 2:15 pm)
After getting through to a different scheduler, explaining the situation and how frustrated I was:
Scheduler: "Okay, hold on just a sec while I look through these faxes."
(I listen again to seven minutes of tips on Summer Safety - Do not let your kids pick insect bites. Check.)
Scheduler: "Hi, yes, we cannot find that fax.Are you sure they have the right number?"
Me: "Yes, I called and verified. They definitely sent it to the right number."
Scheduler: "Well call them back and tell them to send it again."
Me: "No I am sorry, but I am not going to do that. I have been on the phone all day trying to book an appointment. This is absolutely ridiculous. I have a child with lots of medical problems and I have spent two hours that I don't have dealing with this. It is absurd."
Scheduler: "I am sorry but we cannot book that appointment without a referral."
Me: "Well, tell me again why you need a referral if my insurance doesn't require one?"
Scheduler: "It has nothing to do with insurance, the specialist just needs to know why you are coming and what your child's issues are."
Me: "Well I can tell you what her problems are and why she needs to come. I am her mother, I've been dealing with her issues for eighteen months."
Scheduler: "Well, what are they?"
Me: "Well she has severe torticollis and ---
Scheduler: " I don't think we even see that here. Let me check."
(On hold for another 5 minutes)
Scheduler: "Okay, I just checked and, well, we still are going to need a referral."
Me: "Can I talk to a nurse in that clinic, please?"
Scheduler: "Hold, please."
(10 more minutes of summer safety tips - seriously, kids need to wear shoes while mowing the yard so they don't cut their toes off? Who knew?)
Nurse: "Hello, how can I help you?"
Me: "Hi, I have been trying to make an appointment all day with this clinic and my child's doctor's office has faxed over a referral but they are saying they didn't receive it. I am so frustrated. Can you please help me?"
Nurse: "Well the reason we need that referral is because the doctor needs to know what your child is coming in for."
Me: "I can tell you that. I know more about her issues than any of her doctors."
Nurse: "Okay, well why is she coming in?"
Me: "She has torticollis and we want a second opinion on her equilibrium issues to see if fluid in her ears could be causing this off balance."
Nurse: "Well let me see if they even see that here. Please hold"
(Now I learn that sandals aren't appropriate either when kids are mowing the lawn...10 more minutes on hold.)
Nurse: "Okay, I'm back, we will see that here. But if we could just get your PCP to write all that stuff down and fax it over..."
Me: "No, I am sorry, but I am done dealing with this; there is no legitimate reason for her PCP to send over a referral. He's not even the one who suggested she go here - it was another specialist."
Nurse: "Well we at least need to get your daughter's medical history from her PCP, too."
Me: "Are you serious!? If you look at your computer you can see that she has been to just about every other clinic at Children's this past year. Her entire medical history is in her electronic file at the hospital. Can't you just use that?"
Nurse: "Oh well, yes I guess we can. Can you hold please?"
Me: "Sure, thanks."
(5 minutes of summer safety tips)
Nurse: Okay, well I guess I can go ahead and book you an appointment.
Me: "Oh thank you!"
Nurse: "But you are not going to be happy when you hear that our first available is August 15th."
Me: "Really? That's crazy."
Nurse: "But let me see ....oh yes, I see an opening where I can fit you in our Southlake location in July. Can you do that?"
Me: "Sure!"
Nurse: "Okay, hold on while I call our Southlake office to see if I can do that."
(Another 8 minutes of Summer Safety Tips)
Nurse: "Okay good news. They have a cancellation on May 23rd in Southlake"
Me: "Oh that is so great. Thank you."
Nurse: "No problem, glad I could help."
Me: "Bless you! Have a great day. Good bye!"

Then I go take Tylenol for a raging headache and seriously think about opening a bottle of wine at 3:30 in the afternoon.

E-stim today...Justin asked if this was her punishment for pulling her tube out so many times.

Steps Back

2011-05-02T20:27:00.001-05:00

So all preemie moms know the saying, "Two steps forward, one step back." But goodness, this week it seems Maggie has taken four steps back, maybe more. I know that sounds so 'Negative Nancy' because she is crawling a few feet (yeah!), but with the two major health issues in her life she has definitely had some tough days recently.

You see, ten days ago things were going great. Maggie was on bolus feelings during the day (3-4 separate "meals" through the tube instead of a continuous feed). And she actually opened her mouth for a bite of baby food, which she hasn't done since last summer cause she hasn't been interested or hungry, or both! But during the past week it has become obvious that the Botox in her stomach has worn off completely. She is vomiting seven to eight times a day (projectile, mind you), which has made it impossible to get in her goal of 945 ml of Pediasure a day. We maybe can get 800 in, but subtract about 400 for all that vomitting. Translation: if the vomitting doesn't get better, she will start losing weight. Furthermore, she is not interested in food anymore so all that progress we made in the past month has been erased.

To top it off, we visited the "Botox" doctor last week for a follow up and she was just stumped that Maggie's neck doesn't look any better. I was so looking forward to our visit, hoping that she had another trick up her sleeve that I hadn't thought of. With her finger on her chin, she just stared at Maggie like a specimen. (I am so used to this look; I hate this look!) And she had nothing really new to offer except another round of Botox. That's fine, we'll try it again. But the problem is not the tight side now, but the opposite side that refuses to hold her head up. Cue the deep discouragement.

To top it all off, we went to the GI doctor (sorry for all the boring doctor reports) to finally put the new button in and he looked at her and said, "Her neck looks worse!" Are you serious? It's not that I thought it was getting better, but worse?! Seriously, it took everything in me not to burst out crying. And I told him that, too!

Her occupational therapist thinks that Maggie's left neck muscle is completely paralyzed due to nerve damage or just from not being used at all. We watch her and she never uses that left SCM muscle to try and lift her head now - it's like her brain is doesn't even know it's there.

So...we are going to try the last few things we know to do and all the things we didn't want to do because it's painful. First, we are going electronic stimulation to zap the weak muscle to see if we can "jump start" it. No one thinks this treatment really works, but her therapist and I are desperate and we are going to start tomorrow. Later the neurologist can try more painful nerve tests. Even though her opthamologist ruled out eye problems as a cause, I getting a second opinion on that this week.

After that, I just don't know what we are going to do. I am scared, discouraged, angry, frustrated, and just plain exhausted from dealing with it. Combined with the return of the vomiting, I think Justin is starting to worry about my sanity!

How hard it is for me as a perfectionist to look at Maggie's pictures from Easter one year ago and compare them with this year and realize that her neck is in the exact same angle. What was all this torture for? I wonder. This is so awful, but honestly it is so hard for me to look at pictures of Maggie because it reminds me that I have failed in this regard. "What could I have done differently?" I keep asking myself.. Those questions are never really useful, but they still taunt me at four in the morning after I get up to clean up her vomit, wipe her face, and adjust her brace.

"Her neck won't be like that forever," people say. "It will get better one day." I believe that, and I appreciate that positive outlook, I really do. But how is it going to get better? While I am praying fervently that she will just start holding her head up one day, most likely it is going to be a lot of hard work to get there. It is going to be me trekking Maggie to dozens of doctors and therapists, spending hours researching treatments, and countless phone calls fighting insurance claims. It is going to be me torturing her with stretching five times a day and forcing her into an uncomfortable brace 16 hours a day. It is a daunting task before me, and that's why I am praying for just a small sign that her muscles are working properly or will work properly. If I could just see her start trying to use that muscle I would be re-energized and full of hope again.

I know it seems so silly to pray for someone's neck; it does seem a little shallow or cosmetic especially when I consider how much worse it could have been with Maggie. But I truly believe that Maggie is in pain from her neck like that all of the time. I don't buy the theory that she's used to it. Try holding your neck like that for five minutes and you will have a new appreciation for my baby's endurance! Furthermore, I truly believe we are stressing her out and hurting her with all the stretching and strengthening. I feel I just can't torture her anymore (especially after holding her down while they changed out her button today and she started bleeding everywhere!). It's just not natural as a mother to constantly be doing things that makes your baby scream, writhe, and gag.

I just pray for some encouragement or just tiny bit of improvement in Maggie soon. I just need something to keep going...

Look Who's Crawling...

2011-04-28T14:31:00.000-05:00

I have to admit, there were times last year when I really couldn't imagine Maggie crawling or walking. But alas, here she is starting to crawl...praise God for what He is doing in her development!

Hope for Today

2011-04-20T14:57:00.001-05:00

Sorry for the bad attitude yesterday! I'm over it now. I think it just discouraging to work so hard to help my child's issue and it still looks so bad that people keep pointing it out to me. It's as if everything we have done over the past year has been a useless, waste of time.

And it's just a reminder that Maggie looks different than other children. Through my eyes she's completely normal and beautiful, but a stranger off the street sees her differently. I'm not going to lie, that's hard for a mother.

I will say that God has brought some words of encouragement from several people this week and that has really uplifted me. One person was from England! She found my blog through the PPROM list serve that I'm on and told me that her three year old son had a very similar situation as Maggie. And I've never met anyone with a very similar situation as Maggie! She prom'd early too and her son miraculously lived, but suffered severe torticollis from being in the womb with no fluid. She said her son's head is just now getting straight at 3 years old after several Botox injections and lots of therapy. Really her email was such a God-sent thing! There is hope that Mags can get better!

- Posted using BlogPress from my iPhone

Vent

2011-04-19T15:47:00.001-05:00

If one more person stops me in public and "helpfully" informs me that my baby's neck looks uncomfortable in the stroller and I should fix it, I literally am going to lose it....seriously. Maggie was screaming hysterically as we stroll into this medical complex and this lady hails me over to tell me this. Like I didn't realize Maggie's ear is firmly resting on her shoulder....Lord, please give me patience.

- Posted using BlogPress from my iPhone

Vintage Carnival Birthday Party

2011-04-17T16:20:00.001-05:00

We had a good, old-fashioned backyard party for Mary Lawrence on Saturday- sweet friends helped Mary Lawrence celebrate on the most beautiful Spring day. I was a little scared when Mary Lawrence announced a few weeks before that she wanted a "red" birthday party (whatever that means?!) but I think she absolutely loved everything about it....

Mary Lawrence's 4th Birthday

(Click on picture if you want to see slideshow)

ML's 4th birthday

2011-04-14T19:05:00.002-05:00

Yesterday was Mary Lawrence's 4th birthday and I think her best present was this (besides Polly Pocket's pool, of course):

Now she doesn't chew or swallow but she is interested and that is a HUGE step. A speech therapist told me children with feeding issues usually start out eating Cheetos or Doritos due their strong taste. I don't care if all she eats is processed junk food the rest of her life - as long as she eats someday!!

And of course we all know where the girls get their love of cheese from...

We took ML to Mi Cocina for her birthday and then off to the movies...

It was a great day for a special girl!

Peek a Boo

2011-04-03T10:05:00.000-05:00

Well we've had a nice, low key weekend. We took Maggie to her very first 'friend' birthday party on Saturday - a neighbor's child down the street turned one and Maggie had so much fun watching all the children play. We tried to give her birthday cake and ice cream, but she refused and spit it from her lips. (Seriously, what child does not like ice cream?!)

Anyways, I had to post this video - peek a boo is Maggie's favorite thing to do:

Oops...

Five Days After Botox....

2011-03-28T14:54:00.003-05:00

I guess I should start with the positive : Maggie's vomiting has gotten dramatically better since the Botox! It is really quite amazing - she has not vomited at all the past few nights whereas she usually is soaking wet in the morning. We even felt so confident as to switch her from baby formula to pediasure (which is what tube fed babies consume). And still no vomiting- which means she must have outgrown her milk protein allergy.
She's still on a continuous feed so our next step is to slowly wean her off of that. We are still going to switch her button for a new brand. But the GI doctor says it will be really uncomfortable for her if he changes it while she is awake, so we have the option of waiting until her next Botox injection in June when she will be under anesthesia. I don't want to be cruel, but I really don't want to wait three months for that....

Anyway, despite all of this good news, I was very discouraged over the weekend because her neck did not respond like I had hoped. I just cried much of the evening on Friday I guess because I had so much hope that this would be an instant fix and make her neck pop back into place. But it wasn't. The Botox did it's job in loosening up the tight muscles on her right side, but the muscles on her left side are not strong enough to hold her head up. We are doing intensive physical and occupational therapy in addition to craniosacral therapy (which is an alternative therapy that's really cool and probably sounds cooky to most but we are desperate!). We usually do OT and PT each twice a week but we have hired an additional person to come in between so we can maximize these first few weeks when the Botox is most effective. We are doing stretching and straightening exercises five times a day in addition to the therapy visits. She is taped up on her weak side with hot pink therapy tape (supposed to stimulate weak muscles) and her new neurologist prescribed a medicine used on Parkinson's patients to help with muscle rigidity. In short, we are doing everything possible to know for sure if this is or isn't a muscle issue.

Here are some pictures of what the last week has looked like for Maggie:

(at the hospital)

We're even positioning her at night with the boppy (at least until we go to sleep because I worry about her suffocating):

she's on the verge of crawling...

we've had some fun times, too:

There is so much riding on these next few weeks and months. Will she or won't she have to have a permanent halo drilled into her head if this therapy doesn't work to teach her hold to hold her neck straight? Or if it is not a muscle issue related to not having any fluid, then it's got to be something else much worse. This new neurologist agrees that the lack of amniotic fluid is a compelling reason for her neck issue. But he said if the Botox doesn't work we can do some more (painful) nerve and muscle tests to see if she has a neuromuscular disorder. He said, "I mean, if she gets RSV, and is on a ventilator and we have to put a trach in, it'd be nice to know if the trach would just be temporary or if she had some neuromuscular thing that would keep her on in the rest of her life." WHAT!!!!???? Seriously? I just can't handle that kind of talk right now. I thought we were past all this talk?

Anyways, I am sure that visit contributed to my feelings of discouragement and defeat over the weekend about it. Justin can't figure out why this issue is so hard for me. And I don't know the answer. Is it that it's almost been two years since I got pregnant and this all began and I am just tired? Am I being selfish in wanting a normal life back? Is it a superficial thing where I just want her to look normal? Is it my type-A personality where I just want one of her issues to be checked off my list (thinking about the feeding issues we have to tackle next)? Or is it just plain unbelief?

I feel like I was able to trust the Lord with Maggie's life as I walked through the shadows of her imminent and probable death, but I can't seem to trust turn this one medical issue over to Him? If the Lord can spare Maggie's life, can he not also heal one body part? If he can give us the strength to endure four months of agony on bed rest, can he not give me the strength to endure this seemingly minor trial in comparison? How quickly we forget as humans what God has done for us. If God adorns the lilies to be more glorious than Solomon's temple, how much more will he provide for His beloved children.

So after a thoughtful weekend, I am feeling encouraged once again and motivated to move forward. Thank you to all, as always, for continuing to pray for Maggie.

Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Matthew 6:28-30

We're home!

2011-03-23T12:57:00.001-05:00

Everything went great this morning. Maggie is home and in her brace. We won't know if the Botox is working for a few days...but thankfully she did fine under anesthesia.

But there was a development on the vomiting front. While doing the endoscopy her GI doctor discovered that her g-button balloon(the inside part) looks to be blocking the exit of her stomach into the small intestine. Its almost like you put a baseball in the bottom of your sink. Water would take a lot longer to drain out. Same thing with Maggie- the milk can't get drain fast enough into small intestine so it just comes back up!

So if the Botox does not help the vomiting over the next week we will try to switch brands of g-buttons or may have to start all over and have a new hole put in. This is potentially a huge breakthrough and confirms my instinct all along that something was not right with the button because her vomiting got so much worse after it was placed in September. So we are thankful to at least be getting somewhere with that.

Thank you all for praying. Will keep you posted on her progress!

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Botox tomorrow

2011-03-22T21:43:00.001-05:00

Our hospital bags are packed, Maggie has had her pre-op breathing treatments, and my alarm is set for five am tomorrow morning. After all the doctors we've seen over the past year, I am so glad that we are finally taking some serious action about her neck and her GERD (gastroesophageal reflux disease). Of course, I would be lying if I said I wasn't a a little nervous (I pulled weeds and planted flowers like a maniac today!), but I truly believe that this is the best option for Maggie right now and trust that God hears our prayers for protection, prescision, and healing.

Oh I hope that this fixes her neck and allows her to sit up straight! I am so excited for the progress we are hopefully going to see in the coming days and weeks. Actually tonight Maggie gave us a sneak peek and pushed herself into a sitting position while playing on the bed. This is no big deal for most babies, but for Maggie is it huge! We have been working on this for months - I've endured torturous screams from my poor baby as we stretched her severely tight legs and forced her to strengthen her extremely weak core day after day with no apparent results. But then, tonight, she does it like it is second nature. (I guess that it was second nature to her but she just didn't have the physical capactiy to do it until now!).

Next Wednesday

2011-03-17T13:16:00.000-05:00

Maggie is having her Botox on Wednesday. Thankfully the two doctors managed to coordinate the procedures so she will be having an endoscopy, Botox in her stomach, and Botox in her neck. I am praying for no complications, for the Botox not to travel to other parts of her body, and for it to work. How wonderful would that be!

The Daffodil Dance

2011-03-10T20:24:00.004-06:00

How magnificent it is to see green shoots coming out of the ground amidst a still cold winter. And then a few weeks later - POP!- the daffodils burst open bright as the sun, as if to say, "Spring is Coming, I promise, the cold, hard times of winter are nearly over."

My friend Megan loved daffodils. That is why after she died her parents started The Daffodil Dance in Atlanta, to honor her life and raise support for Creutzfeldt-Jacob disease research, which is the disease that took her life at age 27.

That first Spring after her death Megan's parents' street was lined with hundreds of yellow daffodils - their sweet neighbors started a tradition the Fall before and planted the bulbs in her memory. How touching it must have been for her grieving parents- after that first sad winter without her - to drive home surrounded by blooming yellow daffodils on every side.

Today the daffodil dance continues in Dallas in a small way. How I love that I I think of Megan every time I pull into my driveway. And how I love the story of hope that God gives us daily with His beautiful creation, if we only take the time to look.

-------------------

Megan's mom penned a beautiful book about her journey of suffering and hope with Megan and I highly recommend it to anyone suffering from a loss or illness of a loved one. Or anyone who wants to read an amazing story of the love and faith of two godly women and their precious mother-daughter relationship. What Marcia Gaddis did for her daughter is a moving testament for all of us mothers out there.

"When God Comes Near," by Marcia Gaddis (available on Amazon)

Megan's parents came to meet Maggie, who they so diligently pray for, a few months ago. How precious a visit it was....

"Daffodils" (1804)

by William Wordsworth

I WANDER'D lonely as a cloud

That floats on high o'er vales and hills,

When all at once I saw a crowd,

A host, of golden daffodils;

Beside the lake, beneath the trees,

Fluttering and dancing in the breeze.

Continuous as the stars that shine

And twinkle on the Milky Way,

They stretch'd in never-ending line

Along the margin of a bay:

Ten thousand saw I at a glance,

Tossing their heads in sprightly dance.

The waves beside them danced; but they

Out-did the sparkling waves in glee:

A poet could not but be gay,

In such a jocund company:

I gazed -- and gazed -- but little thought

What wealth the show to me had brought:

For oft, when on my couch I lie

In vacant or in pensive mood,

They flash upon that inward eye

Which is the bliss of solitude;

And then my heart with pleasure fills,

And dances with the daffodils.

New brace

2011-03-07T08:05:00.001-06:00

It's going to take some getting used to...

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Vintage Movie Night

2011-03-05T21:47:00.003-06:00

So even though I didn't really feel up to having a party for my 30th birthday, Justin insisted that I have one. So he hosted a party for some of my friends at a local movie theater. We watched my favorite old film, "Bringing up Baby," with Katharine Hepburn and Carey Grant. It was a great night and I am so thankful to my sweet husband and friends for making my day so special - and for making me have fun!!

Movie Fare!

Popcorn!

Red Velvet Cupcakes - my favorite!

The Favors

Memories of me as a "Baby"

Orignial Movie Poster of the Film

My sister came in town - so fun!

Sweet friends...

What a great host!

Yeah for 30!
(Thank you Whitney!)

Movie Poster Invitation

Botox, Botox, and more Botox

2011-03-03T06:43:00.001-06:00

Needless to say, it's been a hard week. Three hours at Children's Hospital on Monday doing an upper GI study and discussing treatment plans for the once again confirmed horrible reflux. Three horrible hours at Scottish Rite yesterday making her brace, which really does look like a torture device. An hour at the neurosurgeon checking stitches that were looking infected. And two hours at the Physical Medicine Doctor consulting about her neck.

The good news is that she thinks the Botox will help Maggie's neck. Maggie will go under anethesia for the procedure (it has to be so precise and she can't have any moving). The bad news is that the doctor only does these type of procedures in the O.R.once a month, and next week is all full, which means we have to wait five more weeks until her next appointment - which is April 13th, which is Mary Lawrence's 4th birthday.

In the grand scheme of things, this is not that big of a deal. But after the week we've had, after the nurse called to tell me this, I got off the phone and just started bawling like a complete idiot. I just want her to have the Botox asap so we know if it works or not. It's been a year getting to the bottom of the issues and now it's dragging out even longer. "Nothing is ever easy; everything takes so long," I sobbed to Justin over the phone as he's on a plane waiting to take off (bad timing on his part to call during my breakdown). "Mary Lawrence always gets pushed aside for Maggie's needs and it's not fair," I boo hooed.

Pitiful, just pitiful I tell you. I just want so badly for this to all be over, for the torture tests to end and for Maggie to get better. On top of that, I am overwhelmed by the constant vomiting and the feeding issues that we'll be battling for years to come.

I told the GI doctor that her PT thinks Maggie will walk in the next 2-4 months (yeah!) so what are we going to do about this continuous feeding thing? I mean I can't follow her around with the IV pole all day long. He told me- with a straight face- that she'll just have to carry around the feeding backpack. The hilarity of this idea pretty much makes up for this week! The feeding backpack weighs about 6 pounds, not including the milk. I'm sorry, but I just don't see how a little baby is going to swing that.

Oh so many issues and never any solid answers.I think we've pretty much decided that he's going to try a new procedure on her (not new to him, just newer as far as treatment options go). Basically he will inject Botox (yes, more Botox) into the opening of the part of the stomach that empties into her intestines. The opening would no longer be able close- the idea being that contents would flow out of the stomach faster, hopefully helping the vomiting. There are other options that would help her reflux but would still keep her on a 24 feed, but I told him I want to be aggressive and try to do something that would get her back to normal feedings.

Anyway, I can't believe tomorrow is my 30th birthday. Is it bad that I feel like I'm turning 40?! Maybe I need to swipe a few syringes of Maggie's Botox..,

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Uh Oh!

2011-03-01T09:31:00.000-06:00

This is very embarrassing and I need to issue an apology to some...For a while now I've been thinking it is so strange that no one leaves voice mails on our home line. I kept calling to check and it said "no messages." Not so weird, I told myself, since everyone calls me on my cell phone.

But a few weeks ago, Maggie's GI doctor told me he tried to leave me a message on our home phone and it said, "voice mailbox full." Hmm, that's strange, I thought, and made a mental note to call AT&T, but just never had time to call. But today, I am awaiting that same doctor to call me and didn't want him to think I was a complete loser for still not tending to my phone issues. So I called AT&T and was shocked to find out that I have - wait for it - 143 voice mails. And they date back to January 2010.

I am sure there are people out there who most definitely think we are the rudest people for not returning phone calls. To those people, I am so so sorry.

I don't' know how I will ever have time to listen to that many voicemails so I'm just deleting them without even listening to them. (I'll probably listen to the recent ones to make sure I haven't missed any majorly important calls about Maggie!).

Anyway, just thought this would make other moms out there who feel like they can't ever get on top of things a whole lot better about themselves....surely no one could be as moronic as me for thinking no one has left us a voice mail in over a year.

Medical Recap

2011-02-26T10:14:00.001-06:00

Since everything has always been so difficult with Maggie, we were both relieved and almost surprised that her spinal surgery went so well. Her recovery has been so easy compared to everything else she has endured and we are so thankful to God for that. And for all of the prayers lifted up for Maggie. No doubt God provided us with a phenomenal neurosurgeon and we continue to pray that his work will prevent any long-term neurological issues.

So I didn't mention this before, but on the day of Maggie's surgery her orthopedist from Scottish Rite Hospital came over to Children's' Hospital in order to move Maggie's head and neck while she was under anesthesia (yes, the third doctor to want to do this). I thought it was so neat that he made the special trip. Turns out, he and Maggie's neurosurgeon are buddies and had been skiing together the week before so they obviously has been discussing our little Maggie!

Anyway, he came out to the waiting room after he "manipulated" her neck and showed us pictures on his digital camera of Maggie's head in all different positions. Her neck was able to be positioned straight up and down, which we knew. But as I suspected, they could not turn her head all of the way to the right nor could they tilt her head to the left shoulder. His little exam confirmed what they've already said : her sternocleidomastoid is tight, but it's not so tight to warrant cutting of that muscle.

You see in a typical baby with severe torticollis, the sternocleidomastoid muscle is so tight that the baby can't move out of this tilted position:

Maggie looks like this baby (except she tilts to the opposite side) but she can move out of this position and that's why doctors have been thrown off .

(The sternocleidomastoid muscles)

A few years back it was very common for surgeons just to "cut" the sternocleidomastoid muscle to allow it to stretch, but doctors no longer do this surgery very often because of permanent complications that can occur. And three out of the four surgeons we saw did not want to cut Maggie's because hers is not that tight.

That is why we went through MRIs and CT scans to see if there was something wrong with her skeleton or brain to see what else would be causing this, since it is obviously not the sternocleidomastoid muscle. The last time we saw the neurosurgeon a month ago after those 3D CT scans, he concluded that perhaps it's not her sternocleidomastoid muscle but her trapezius muscle and wanted us to talk to a Physical Medicine and Rehabilitation Doctor about doing Botox. At that point, the Scottish Rite group didn't think it was a muscle issue at all; therefore, they didn't think Botox would work. But after her two doctors got together last Friday and moved Maggie's neck, they both agreed that it's her trapezuis muscle that is extremeley tight. It most likely didn't form and stretch out properly because of how she was positioned in the womb without any amniotic fluid.

See the trapezius muscle in the diagram below:

They both agreed that the trapezius and sternocleidomastoid muscles should be injected with Botox (to paralyze them temporarily) so we can position her correctly in a brace with little discomfort and hopefully get her understanding how to hold her neck up normally. If the brace doesn't work, then we will have to do a halo (which is a permanent metal halo screwed into her skull - so hope it is doesn't come to that).

So the good news is that two doctors finally agree on a potential cause and solution to the problem. It took five months for this to happen, and although it may turn out that none of this is true, at least for now her two main specialists are on the same page - which is huge!

I am sorry for the long medical lesson, but I know there are many people who don't really understand why it's been so hard to figure this out and why the surgeons don't just cut the sternocleidomastoid muscle and be done with it. Although it has been a frustrating jounrey, I am so thankful for that the surgeons we visited did not rush to fix her by cutting the muscle, and instead were cautious about finding the true cause of her torticollis.

So we are meeting with the "Botox" doctor on Wednesday and I'll be interested to see her take on all of this. As I have said before, I am very nervous about using Botox because of what happened to a friend's child after having it done. I really don't like the idea of them shooting poison into her such a sensitive area and am very aware of the potential complications. But at this point there are no other tangible solutions, and we have to do something to try and help her. I am praying for discernment and, as always, that God will continue to lead us on the right path as we try to figure out this medical mystery.

She's home!

2011-02-19T19:04:00.001-06:00

We got home this afternoon. I can't believe she's doing so well! Of course she's got her pain medication and has to lay flat, but she's doing a million times better than she was after her last surgery.

We are so grateful for all of these answered prayers and for all of you praying for her.

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Quick Surgery Update

2011-02-18T12:58:00.001-06:00

Thanks to all for praying- Maggie did great and the surgery went well with no complications. She is still in recovery and they are monitoring her closely. She has to lie still on her back for 24-48 hours. But she is well medicated and seemingly okay except for the fact that she hates the IV, wristbands, and tape attached all over her

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Her upcoming surgery

2011-02-15T21:36:00.000-06:00

Lately I think I have attempted to downplay Maggie's upcoming surgery as a way to dismiss my own fears about it. But the truth is, it's a very serious surgery. And I am nervous. Scared. Anxious. Kind of want to throw up when I think about it. Not many people understand what it's like to watch your baby being rolled away into an operating room, praying that she will come out better than when she went in. Let me tell you, it's awful. .

The surgery is scheduled for Friday at 7:30 am and will take at least two hours. We do not know what her recovery will be like. She'll be in the hospital a few days at least. And although it is considered routine as far as neurosurgery goes (but really, is there anything "routine" about neurosurgery?) there are major long-term neurological implications if the surgery is not done right or if she responds poorly.

So I humbly ask you to remember Maggie in your prayers this week:

1. For the surgeon's hands to perform every minute of the surgery perfectly
2. For no short-term or long-term complications
3. For no infections while in the hospital
4. For no complications with anesthesia
5 And for a fast and easy recovery

Thank you, thank you, thank you to all of our sweet family and friends who are praying for us and especially for Maggie.

Pitiful but cute!

2011-02-12T08:56:00.002-06:00

We spent two hours at Scottish Rite on Thursday getting her medieval torture device adjusted (aka the brace). It was so awful that in between adjustments I got on the phone to see where that soft collar was that I ordered last week. I'm on the phone with this medical supply company and the orthotics tech walks in with this...

it's the same idea as the soft collar, but with a little more support. She asked me which one I would like better - the full body brace (which I haven't even taken a picture of because it just seems cruel to when she's hysterically sobbing) or something like this collar Definitely this, I said!

She told us to try it for a few weeks and then come back and they'll make one custom fitted for her. I'm so excited because it seems learning how to crawl and walk will me much easier in this. We'll see....Justin came home and said that she looks like a totally different baby when she's straight. Not sure if it will help at all, but at least it will teach her what is normal. Her poor eyes must be so confused (her PT thinks she might be suffering from a little vertigo, too).

She definitely doesn't like it, but she doesn't scream like she does when in the brace. Now it's up to us to be diligent about making her wear it as much as possible!

Pictures

2011-02-09T15:32:00.003-06:00

We have been home bound lots over the past two weeks with snow and ice. Here are some pictures of our lazy days...which I have to say, I love. Something about being stuck at home is really fun for me. I think it not having any appointments, therapists or nurses around - just us - makes us feel like a normal family.

(Only lasted 5 minutes in the snow - just like her mommy)

(took all of the pillows off the couch to build a fort)

(Okay I know what you're thinking - Mary Lawrence is almost four and shouldn't be sucking her thumb! I agree, and am slowly trying to break her of it. But at the same time, I have consulted the dentist, doctor, and a therapist about it, and all have said that ML has and is still dealing with a lot so we shouldn't rush it and make her feel bad about it. And honestly, it's not at the top of my priority list. But I am trying, so please don't judge me - ha ha:)

(With my girls on the way to a princess birthday party)

(Are these not the sweetest little girls?)

(look who's standing up -although her head often makes her topple over so we can't leave her standing alone!)

Learning to Labor and Wait

2011-02-07T20:30:00.003-06:00

Don't you love it when you have a first appointment with a doctor and they tell you to get there 30 minutes early to fill out paperwork. So you get there 30 minutes early and they tell you the doctor is running an hour behind. So you have to wait a minimum of an hour and an a half?? Yeah that happened this morning. In Fort Worth of all places, which is 45 minutes away from my house. Pretty much par for the course for us.
I'm sorry, I really don't want to be bitter about feeling like my life has been taken hostage by Maggie's issues. It's just that we spend so many hours in doctors' offices, and for what? Still no one can give us any clear answers.

Of course I am so grateful to the doctors here; they are all wonderful and doing so much to help Maggie. But Justin and I are seriously considering taking her to another city for further opinions about her torticollis, or whatever it is she has. We just aren't satisfied with the "treat the symptoms" approach when they don't really know what the real issue is. It seems like everyone is kind of shooting in the dark. I don't fault anyone for that - I mean, no one has ever seen a baby that lived after 15 weeks with no amniotic fluid and her neck is most likely related to that. I just want to do everything I can for her, and because her issue is so strange that might mean seeking a lot more opinions.

Maybe no one out there knows what this is or what to do about it, but we have to hope that there is a permanent solution out there. I have been doing research for a while about where to go and would appreciate prayers that God would lead us in the right direction. Also that Maggie would continue to develop normally and hit her milestones. It is so hard to watch and wait and not really know how everything is going to end up. How badly do I want her to have a normal, healthy life. I feel like we are so close, yet so far away.

As I've mentioned, Maggie is having her surgery on her "tethered cord" on February 18. Basically. the bottom of a normal spinal cord is loose and stretchy, but Maggie's is taut (could be related to not having any amniotic fluid). It has to be corrected because as she grows it will get tighter and start to affect the functioning of her spinal cord. So during the surgery the doctor goes in and "detethers" the cord. Statistically Maggie will not have any long term effects since we are having the surgery so early.

Even though the doctor assured us that this is pretty routine as far as neurosurgery goes, of course I am still very nervous about it because a) they are operating on her spinal cord; b) she doesn't do well under anesthesia; and 3) nothing is ever uncomplicated for her (think back to the g-button surgery that was supposed to help her feeding and weight gaining issues and ended up making her reflux 10 times worse).

So I humbly ask for prayers that she will do well under anesthesia, have zero complications, and that the surgeon's hands will be guided by the Lord to do just what is needed and do it seamlessly. I am also asking God that fixing her spinal cord will perhaps ease whatever pain or tightness she is feeling in her neck.

Personally, I am praying for the strength to carry on with this great responsibility that God has entrusted to me. Because right now I am feeling the weight of it so much more.

Let us then be up and doing,

With a heart for any fate;

Still achieving, still pursuing,

Learn to labor and to wait.

From "A Psalm of Life"" by Longfellow

Scottish Rite

2011-02-01T19:22:00.001-06:00

Well Justin and I both said as we left Scottish Rite that we wished we had a camera to capture the entire scene. About 30 doctors sat around a long conference table and looked across the room as a few other doctors asked questions and passed Maggie around and examined her. Her doctor led the discussion and I felt like I was in an oral exam as he fired off questions at me: Did you have a complicated pregnancy? How many months did she do therapy? Why did she get a g-tube? Have her eyes been checked by an opthamologist? Thankfully, I've repeated Maggie's medical history so many times it is forever ingrained in my head. Anyway, it really was so cool and I am so thankful for such an amazing opportunity.

So this was their consensus:

In all the years of experience in that room, no one had seen anything like Maggie's case. They concluded that it is not a muscular issue because her head can straighten out when forced. Rather, it is a positional issue that they think is directly related to not having any fluid in the womb and not being able to move for 15 weeks (thank you- I've been saying this all along!). Her brain is telling her that this is a normal position, when it's not. And the issue is, how do you re-train the brain? We have done a year of therapy with no results.

Our next step is to have her surgery on her spinal cord to release the tension on February 18th. He doesn't want to do anything drastic before then. He said there could be a small chance that the pressure on her spinal cord may be affecting her neck, although he doubts it. But we're going to see how the surgery goes and how she recovers and go from there. In the meantime, we are going to be diligent about making her wear her brace as much as possible. We'll also talk to the PMR doctor tomorrow about botox after her surgery, but again this doctor is not convinced it will work since he doesn't think it's a muscular issue.

So the plan is to make her wear the brace as much as possible to teach her what's normal. But he said the brace is hard because when she cries, of course as a mother I want to take it off. So eventually we might have to do something more permanent like a halo. Which is when they basically screw a halo-looking thing into her skull to make it straight (often used after severe injuries). This upsets me because I don't want Maggie to suffer any more. And the fact that he said she might wear a halo for a year and we take it off and her neck still go back to being tilted. That really would be awful!

I am praying that God will take this into His hands. That he will spare her of any more torture devices and that the way to cure her is much easier than the halo. Praying for a good surgery and that it will help ease whatever pain or discomfort she has from having her neck straight.

Out of desperation today, I ordered a soft neck collar for babies off the Internet. Maybe just wearing that will teach her what's normal. Who knows? I am not a doctor, but maybe, just maybe the solution is a lot easier than we think....

Our little case study

2011-01-26T16:23:00.001-06:00

Maggie's 3D scan went well yesterday - she didn't give us any major scares this time. Although ever since we have been home from the hospital she has been vomiting more than usual. It's just the strangest thing that every time she is under anesthetic she does this. Oh well.

Anyway, back to the scan...thankfully, it was normal. Structurally (or skeletally) Maggie is fine. But this just boggles the doctors' minds. Because when looking at her, it just seems like there has got to be something going on either structurally or neurologically. But we have ruled both of those things out. So here we are back to square one , or so it seems.

What I have realized , after speaking with 3 to 4 different surgeons, is that Maggie's torticollis perhaps should not even be called "torticollis." It took me a while to get this. And why I got so frustrated that these surgeons wouldn't just cut the SLD muscle (that holds her neck up) and be done with it. But the reason they aren't sure about doing this surgery that is often done on children with severe torticollis is that Maggie's "torticollis" doesn't present itself as normal infant torticollis. A baby with real torticollis is tilted in a similar position, but they cannot move out of that position. They are almost stuck there. Maggie is not stuck. She can move left and up and down. Furthermore, on a child with real torticollis the SLD muscle is so tight it's like a guy wire. Maggie's is tight, but not that tight. I can make her head go straight like it should, but she just screams and puts it back in the tilted position.

So that's why the doctors are perplexed. It's why her neurosurgeon brought down several of his colleagues in other fields yesterday and they five minutes just staring at Maggie as she bounced up and down and clapped with the nurses who were sweetly entertaining her. It's why Scottish Rite has decided to present her as a "case" on Monday night at the hospital. All of the doctors there will gather in a conference room, look at all her scans and hear her history. Then I will bring Maggie in and her doctor will manipulate her neck in all different ways. Then they will all talk and see if anyone else has any earth-shattering ideas.

You see, the neurosurgeon and several other surgeons are all leaning toward Botox, which scares me because a friend's child almost died after having it done. And I kind of feel like they don't know what else to do, and Botox isn't permanent so we might as well try it. But the Scottish Rite doctor today is not so sure about Botox (rather he's not sure it will make a difference) and that's why he wants to present her as a case. I almost jumped up and down when he told me we could come on Monday. Who would have thought one could be so excited about their child being poked and prodded and analyzed like a specimen? Let me tell you, this mother is desperate for the right diagnosis and, more importantly, the right treatment. I am confident that God is getting us there...it's just taking a litlte longer than I would like:)

New Trick

2011-01-22T20:30:00.001-06:00

Well at least we made it 23 days into the new year before our first ER visit. Yes, our Saturday was spent at Childrens Hospital of Dallas.

You see Maggie has not been napping very well in the morning. So she often just rolls around in her crib and plays, and sometimes if I'm lucky she'll fall asleep for 45 minutes or so. I watched her on the monitor off and on and finally she did just that. But when I went to get her up at 10 am, I quickly realized Maggie learned a new trick: She learned how to unsnap her footed pajamas, get both legs out, remove the three pieces of tape holding her tubing down, then to top it all off, managed to pop her button out. I found her asleep in a puddle of formula that was still pumping steadily out of the feeding machine. Lovely.

Of course, I panicked. Justin was hunting an hour and a half away with no cell phone service, and a quick look out the window revealed my neighbors were gone. Judging from the amount of milk in her crib, I knew that the button had probably been out since before she fell asleep. And I knew that the hole in her stomach can close up pretty fast. So I quickly laid her on the floor and had sweet ML hold her sister's hands while I tried unsuccessfully to push the button back in her stomach, all the while Maggie is kicking and screaming and I'm trying my hardest not to pass out in front of my two helpless girls.

But after several forceful pushes (I really didn't want to go to the ER), I realized the hole had already started closing and I was not going to get it in by myself. So after a few choice words (which ML then repeated to my horror- oh I will be so embarrassed if she says something awful at school!!) I packed the girls up and headed to the ER.

The good thing about having a baby with a g-button is that they take you back quickly when you tell them your baby is on 24 feed and she pulled her button out two hours prior. (I didn't mention that she's come a lot closer to starvation than today but anything to get past all the vomiting children in the waiting room, right?). The bad thing about having a child with a g-button is that it is absolutely horrible when no one can get it back in. First, the overly confident ER resident failed. She then got the attending and the head of the ER department and all three took turns jabbing the button back into my child's stomach while she's writhing in pain with no luck. "Mom does she take a pacifier," one of them asked while Maggie is pitching a fit, "maybe it will help calm her." My response, "remember when you all asked about her medical history and I said she has an ORAL AVERSION - so no, she doesn't take a pacifier." (I swear if one more person asks me if my child takes a pacifier while they are in the process of torturing her, I think I might lose it- besides, it's totally insulting; don't you think I would have thought of that myself if she did take one?).

So because the hole had unfortunately closed up a lot, their strategy was to place a tiny urinary catheter through the now tiny opening to prevent it from
closing completely. Then every 30-45 minutes they came and changed the catheter out a slightly larger one. This "stretching of the hole" went on for about 3 hours until they finally got to a catheter that was as wide as her button was. They then held her down and, after pushing for another few minutes on my now hysterical baby, decided that maybe they should give her a sedative to calm her down first because our little Maggie was still putting up such a fight and her screaming contracted her stomach muscles which prevented the button from going all the way in.

So sedative is what they gave her and, five hours after we were admitted, they got the button back in. And after the sedation wore off, they let us go. Whew.

We got her home, bathed her and put her in some zip up (not snap) pajamas. We never thought we could use the zip up kind because there was no place for the tube to come out. But clever Justin cut a tiny hole in the bottom of the pj's and fed the tube right through it. So no more stripping down naked and taking your button out, little baby.

So glad today is over. I'm now
Praying that Maggie did not pick up any viruses today because we have her 3D CT scan Tuesday and I can't stand it if we have to postpone another month. I seriously went through a whole package of baby surface wipes today because Maggie kept throwing her toys off the bed. And I also went through a whole package of hand sanitizing wipes because ML kept touching everything I didn't want her to- the trash can, the toilet seat, the floor, and all the elevator buttons. We are all going to have chapped hands from the gallons of sanitizing gel used in room 6 today...

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Happy First (Sort of) Birthday

2011-01-19T13:34:00.001-06:00

(taken at Childrens hospital this morning while waiting for yet another surgeon who referred us to yet another doctor...)

Today was Maggie's due date - and what the doctors go by for development. I remember writing nearly a year ago how we would know more about Maggie's future at age 1. What she does in the first year of life is a good indicator of how she will do the rest of her childhood.

So here we are at one (technically). Compared to her older sister, who was running up
stairs at this age, she seems to be way behind. She's just now sitting up and hasn't even started to crawl. So that's a little discouraging but we're pretty confident she'll get there eventually.

In other ways, she is doing great. She's saying 4-5 words and pointing and clapping. The doctors always comment how alert she is and aware of her surroundings. She weighs 18 pounds, 1 ounce- I think that means she's actually on the charts now, albeit at the very bottom. (But we'll take that!) She's getting good at standing and is trying to pull up. She's super sweet and interested in what's going on around her. We are so proud of her.

Now we are praying that we can get her torticollis figured out soon, so she stop being frustrated all of the time and progress even more.

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Goals 1 &2

2011-01-12T11:01:00.001-06:00

Our fabulous OT, who has made enormous progress with Maggie over the past two months, said in December that her goal with Maggie was to get her to sit up on her own by mid- January. Well, congrats, Mags, you did it!

It's akward-looking, yes. But I tell you, she's a much happier baby when she's sitting up (after all she's one year old and should not be laying around all the time). I still put pillows around her bc she eventually gets tired and her head pulls her over, but I still count it as meeting her goal!

Goal 2? Learning how to roll over and push herself back up. Yes, that's what a 6-7 month old is learning but I'm far over that. For so long I didn't try to encourage these things bc so many people told me she would not/could not sit up until her torticollis was fixed. But I got tired of waiting for that, and also realized that statement wasn't true- in fact, waiting around to work on these things was actualy impairing her overall development. So although she doesn't like to work on tummy time and crawling (pretty much screams the whole time) we make her due her "workouts" throughout the day. I am hoping she will learn to crawl in the coming months, which will hopefully cure these boredom whines we are hearing all day long.

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Doctor updates

2011-01-06T15:01:00.000-06:00

Well, we've had five appointments in three days, a total of 12 hours in waiting rooms, two sitters who canceled last minute, and lots and lots of screaming. I mean, what do these doctors expect making you wait an hour or two in the waiting room before you even get taken back to begin the "so what's Maggie's medical history" routine with the nurse? At every single appointment, by the time we actually saw the physician, I had been through every toy, every blanket, pointed out everything half-way exciting, and she was just done with it all. How in the world a doctor can give us his full attention with a one year screaming and bucking I don't know. I surely couldn't concentrate. I seriously thought about handing her to a receptionist so I could hear the doctor give us his opinions, but thought that might be inappropriate. If someone had come offered to take her off my hands for a few minutes, I gladly would have handed her over though!

Anyways, to cut to the chase - I am very overwhelmed. Pretty much every doctor had a different opinion about her torticollis. It seems that for every two doctors we go to, we get referred to one more. We have an appointmetn with a third surgeon in two weeks to see if he would recommend surgery.

By far, the neurosurgeon was the most helpful one of them all. However, before he would recommend any surgery to cut or stretch her neck muscle, he wants to do a 3D CT scan. They will use the CT scan to make a plastic mold of her spinal cord and skeleton. That way he can look at every bone perfectly, just to be sure that there is not even the slightest problem with her skeletal makeup or spinal cord. I so am glad he wants to be thorough.

She will have to go under anesthesia for the CT scan (which is scheduled for Jan. 25th) and while she is asleep he is going to stretch her neck all different ways to really determine what her range of motion is (it's hard to determine when she's awake because she is now so resistant to people touching her). He's also going to consult with a few other surgeons about Maggie's case before he decides any plan of treatment. He did say that we cannot let her continue on like this forever because it will eventually affect her spinal cord due to the imbalanced pressure on it. He seemed to really want to help her and so I hope that he means it!

Furthermore, he said that the fluid they found around the base of her spine is an indication of a congenital problem unrelated to her neck. Maggie was screaming uncontrollably the whole time so I didn't really get the whole gist of the problem (thank goodness Justin was able to come), but if it not fixed she will have lifelong issues with her lower extremities. So he wants to do surgery in the next three months on that. He said if she has the surgery she most likely will be fine in the long run. Needless to say, despite his assurance that the surgery is minor compared to some other things he does, I still am very worried about it.

Once again, I am overwhelmed. Praying for guidance and wisdom as we move forward so that we can determine the best path for Maggie. I am feeling so sad, too. Sad at having to drag my child to all of these appointments and no one really can tell us what her future will be like. Sad because as I am waiting in the neurosurgery waiting room yesterday, my neighbor comes down from the 6th floor and we both cry because her daughter (3 1/2 years old like ML) was diagnosed with leukemia that day. Her daughter's name is Margaret, too, and she is just the sweetest little girl if you can remember her in your prayers tonight. What a reminder of how grateful we need to be for all our children and their health. How life can change so fast.

Happy 8th Anniversary to us!

2011-01-04T19:54:00.000-06:00

I'm so glad I didn't listen to the numerous people who warmed me against getting married so young. "Wait until your thirties to settle down," they said, "People don't really know what they want out of life when they're so young." Or "Go live somewhere fun for a few years, then come back and settle down." Or my favorite, "Most people who get married young end up divorced." Personally, I kind of thought it was sad that so many people had such a poor view of marriage, or they thought that just because someone is young means they don't really know what they want out of life.

Being from Arkansas, it's really no big deal to get married at 21 like I did. But when you move to more "sophisticated" places like San Francisco or NYC, where people often wait until their mid to late thirties to settle down, and you tell people that tiny little fact about yourself, they will no doubt look at you like you just stepped off a Martian spaceship and have four googly eyes. They immediately assume that either you are (a) completely uneducated or (b) from the boonies (or both!).

But, really, what is one supposed to do when you meet the love of your life so young? Say to them, "I love you, but not enough to marry you because I've got some better things to do first." On the contrary! How blessed I feel that I did meet my match early on! Think of all the adventures we've gotten to experience together. Living in exciting places, traveling to even more fun places; sharing the hardships of starting out in the professional world, and relishing the joys of having children at a young age. I look back at photos from our first year of marriage and we really do look like children playing house - we thought we were so mature! What little did we know then, but how much we have learned together since!

Sure, my life probably would have been a little easier if I hadn't married young. I probably would look a little younger and fresher. (I laughed so hard when Maggie's therapist looked at our wedding photo and said "wow- Justin looks just the same!"). But it's true, we've had our fair share of trials, and it undoubtedly shows. But would I give it all back for a few more years of "freedom"? Absolutely not!

So I guess that's why I kind of roll my eyes when I hear celebrities tell us that they didn't "know" or "find" themselves until they were in their thirties or forties. As if to say, all of you in your twenties don't know squat. I guess I won't know until I'm actually in my thirties (in two months!). But I kind of feel like I know myself right now: I am a child of God, first and foremost. A wife. A mother. A caretaker. A pseudo -nurse. A pseudo-therapist. A friend. A sister. A daughter. A woman with purpose. With hope. With dignity. With gratitude.

So eight years after our wedding, I thank my dear husband for marrying me so young, for taking care of me when I didn't know how to take care of myself, for leading our family on many adventures, some expected, but most unexpected - all of which have helped shape the person I am today. My life is certainly not what I thought it would be, but I gladly claim it because I have you to share it all with...

"Don't let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity." 1 Timothy 4:12

New Year, New Attitude

2011-01-02T14:38:00.000-06:00

A year ago Maggie was a few days from coming home from the NICU. She was taking every feed by mouth and doing great. We were so excited that life was going to start getting easier...what the heck happened?!!

One year later, Maggie is not taking anything by mouth. She is fed continuously 24 hours a day by a tube. She vomits half of what she eats and can't gain weight because of it. Everything is so interconnected : she's not ever going to take anything by mouth if she's not hungry; and she's not going to be hungry if she's fed continuously all day long; and she's not going to stop being fed 24 hours/day until her reflux gets under control and starts gaining weight; but she's never going to gain weight until she stops spitting up all of the time, and the only method for helping that is feeding her 24/hours a day. Really it's maddening.

Who would have thought that reflux could be so life-altering? I mean, ML had "reflux," but this is a whole different ballgame. I mean, it is so hard to sleep at night because I either changing her wet clothes and sheets or listening to her cough/throw up on the baby monitoring, wondering if I should go change her or should 'just check to make sure she's not choking to death on her own stomach contents."

It's awful, really. And I have been so focused on the torticollis that I have kind of put the feeding issues on the back burner, which is really bad. I think about how hard I worked to prevent her from being a baby that is dependent on their feeding tube. The hours I spent feeding her and working were for nothing, though. To think that just four months ago she was taking about 60% of her feeds through her bottle and we were just getting the g-tube to "bridge the gap." And it has been a disaster ever since because she can't keep anything down, and is still struggling to put on an ounce a week. Sometimes I really do just want to bang my head against the wall...

Having said all of that (sorry it feels good to vent), I am praying that my attitude will be a little softer and sweeter this year about all of Maggie's problems. That I can be joyful and thankful in all circumstances, because I know it is Gods will for me. That I can remember how far Maggie has come in a year, instead of the other way around. For example, she is now pointing at everything. and saying things like mama and dada. She can sit and stand with assistance. She is happy, despite her obvious discomfort. And he is breathing and her lungs are healthy. And, most importantly, she is here and alive, praise the Lord.

This week is a huge week for Maggie. We are seeing a neurologist, neurosurgeon, and a second cranial facial plastic surgeon. We are also checking in with the pulmonologist and dietician, too. I am praying that we will get some concrete answers about her torticollis that will help us make the best decision about her treatment plan.

Merry Christmas to all!

2010-12-24T15:07:00.001-06:00

Praise God! Neely is doing better and everyone is healthy and happy this year. Merry Christmas to all our friends and family!

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Cell Phone Photos

2010-12-21T10:03:00.001-06:00

I'm on the plane back to Little Rock and thought it'd be a good time to update with some recent pictures.

Mary Lawrence on assembly line throwing in mac and cheese mixes at our church's annual Christmas food packing drive. She loved it!

Mags watched in her stroller!

-going to church! It's still just Justin or me taking ML to church since we still can't take Maggie. Hopefully in the Spring we can start!

My sweet nephews (secret to making them go to sleep: put them in their Buzz Lightyear sleeping bags.)

Maggie getting ready to be covered in casting stuff (seems like paper- at Scottish Rite. I wanted to take a photo of her all casted up but thought that would be a tad cruel.

This is what my child looks like after being fitted for a brace for 3 hours today. Torture!! (And it didn't even fit right in the end so we have to go back!)

This is what my three year old looks like at the end of that appointment. She got so mad at the prosthetics lady bc Maggie was screaming so much. "Stop! She doesn't like that!" she yelled as she tried wiggling between Maggie and the awful looking brace.

More to come...
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Update

2010-12-20T09:15:00.000-06:00

So happy to report that Neely is doing better today. She's on heavy antiobiotics to fight infection. They are monitoring her closely for that reason. Hopefully the worst is over, the doctor said. That's our prayer, too.

Sunday

2010-12-19T13:18:00.001-06:00

Neely is not doing well today, high fever and pain, most likely an infection but they are doing tests to find out more. Please pray for wisdom for the doctors and complete healing. Also for her husband, Patrick, who has not left her side at the hospital and hasn't slept for days.

I flew back to Dallas this morning and am aching to be back. Might have to fly back tonight.

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Neely, part 2

2010-12-18T18:18:00.001-06:00

Neely is doing better today. She's going to be ok after two procedures yesterday to help
her. She's still in pain, but manageable pain. She'll be in the hospital a few more days recovering, but I knew she was on the mend when I walked in today and she was a) conscious and b) said in a whispered voice, "Is that sweater from Anthropologie?". Yes, it is, I said, and I got it from your closet.

Anyway, I feel so blessed to be able to spend such quality time with her boys. When you live out of town, it's visits like these that really cements your bond with children. Her boys are so precious- I wish we just lived right down the street and not five hours away!

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Neely

2010-12-17T18:58:00.001-06:00

My sister has been suffering all week from a rare complication of the gallbladder removal surgery she had Monday. She's back in the hospital for the third time this week and has been in excruciating pain that not even morphine helps. I came last night from Dallas to help take care of her three boys. She'd probably be embarrassed if she knew I was writing about her on my blog. Even still, I humbly ask all you prayer warriors out there to remember Neely and Patrick tonight in your prayers...

Ever since I sat down in the terminal last night - waiting anxiously for my delayed plane- I have felt such a heaviness on my chest. It's like the Enemy is smothering me with a pillow and I'm gasping for breath, my hands flailing in the air for help...I've not yet succumbed to the lack of oxygen, but feel I am almost there.

Why, Lord, must my family keep suffering so? Why is this happening to my sister who has already endured so much? My poor mother who has watched both of her daughters suffer such physical pain?

I am praying for complete healing for Neely, wisdom for her doctors, and strength for my family. Thank to all for letting me share this with you.

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Pump it up!

2010-12-16T09:36:00.003-06:00

Funny story - Maggie's feeding pump runs constantly at 39 ml/hour (which is a little more than an ounce an hour). Last night in a slumber I accidentally set the pump to 391 ml/hour! How in the world I have no idea! I woke up so confused an hour later when the alarm ran to tell me the pump was already empty again. Poor little thing! I know that was quite a shock to her system to be pumped up like balloon full of milk like that!

We did go back to Scottish Rite last week and the doctor willingly acknowledged he doesn't know why Maggie's neck is so bad. He said he'd like to take things slow because of that and assured me that scoliosis would not be a problem for her. He promised me that Maggie would not graduate from high school with her neck like that. Not sure if that is good enough, I told him, but if that's the only option then that's what we'll do. And after some pushing from me, he agreed to do a brace that Maggie's OT had suggested. So we spent five hours at Scottish Rite meeting with him, the PT, getting pictures taken and being casted for a brace. Fun, fun.

Then two days later we went to a craniofacial plastic surgeon. After looking at her medical records, he simply said that it makes total sense to him that her neck was not able to stretch properly in the womb and that is why it is so bad. (What I've been saying all along!). He said he could do surgery cut the muscle (to lengthen it) and then could put on a soft collar for 6 months and hopefully that would help her. He said it would be much less traumatic than the brace Scottish Rite is making and he said he would be very worried about scoliosis. Hmm...what am I supposed to think or do when two of supposedly the best doctors in Dallas totally disagree in their treatment plans?

We were supposed to go to the neurosurgeon yesterday but the surgeon had an emergency surgery and had to cancel, so we postponed until the 31st. I am anxious to get his thoughts on her neck, her spinal cord, and to see if there are any other missing pieces we have not thought about yet. Once we talk to him, we can get a game plan going for Maggie's treatment.

On a different note, we did go for a weight check this week and I was so frustrated to hear that she hasn't gained any weight in the past two weeks - what?!! How can that be?? She is hooked up to the pump constantly and now I am even taking out the backpack pump and attach it to the back of her stroller when we go out (I'm sure people will give us strange looks!). But I mentioned to the dietician that Maggie is now sitting up for almost 30 seconds by herself! And she is standing and holding on to things with a little help (thanks to her awesome Occupational Therapist). Finally she is starting to do some more physical things, but that of course means she is burning more calories, which explains why she is not gaining weight. I was hoping to start weaning her off of the 24 hour feeds now that her stomach has gotten used to 39 ml/hour. But since we have to increase her feeds to 45 ml/hour, the continuous will have to continue. G-tube babies are a fine science to figure out!

Today we are going to get her second RSV shot - called Synagis. Preemies/CLD babies get this antibodies shot once a month during cold/flu season and boy am I thankful for them. It is not a vaccine so it won't prevent her from getting RSV, but if she does get RSV hopefully it won't be bad enough that she would have to be hospitalized or put on a ventilator. I panicked on Tuesday - exactly 30 days after her last shot-because the clinic called and said they didn't receive her shot from the manufacturer. So the past two days I have been so paranoid about taking Maggie out and "Purell-ing" everyone that gets near her! But we're off this morning to get it and I know Maggie is not going to be happy. Usually she doesn't mind shots but this thing is huge!

Sorry for all the boring medical updates - I do thank you all for praying. I have to say, now that Maggie's reflux is under control (which will probably start back up now that we are increasing her feeds!) she is much more delightful. She still hates the car and screams constantly in it, and she is still frustrated because she can't crawl or walk and really wants to. But other than that, she is hysterically funny with her huge four new front teeth and giggles with joy and lifts up her arms every time I walk near her...

'Mystery Diagnosis'

2010-12-06T10:57:00.001-06:00

The thing about having a rare or mysterious medical condition is that you need a doctor who's got your back. Thank you, Lord, that we do!

Maggie's primary pediatrician is amazing. He called me last week because he, too, was frustrated that Scottish Rite wasn't seeming to help Maggie or realizing the urgency of the situation. He said that we may have to take Maggie to Houston or out of state to get help because it doesn't seem like they are going to help her at Scottish Rite(probably cause they don't know what's causing the problem in the first place).

We are still going to see the neurosurgeon and craniofacial plastic surgeon (both who are supposed to be "the best" in Dallas). And I have hope that maybe they will have the perfect solution. But if not, it is nice to know her pediatrician is going to talk to his colleagues and try his hardest to find the perfect doctor for her. I told him that we will take her any place we need to go and we will. I don't know how, but we will figure it out!

And just as I am writing this I got a call from Scottish Rite and the doctor there wants to meet with us this week after her pediatrician called this morning. Hmmm...wonder what we said that all of a sudden he has time for us:).

Quick update about test results

2010-11-29T20:15:00.001-06:00

The nurse called today and informed us that the tests were "inconclusive." She was not very willing to answer my questions, but here is what I do know...

They found something in her spinal cord that is like a fluid build-up (I could have this totally wrong because, again, I wasn't given that much detail). The doctor doesn't think this is causing her torticollis but definitely needs to be checked out.

We are being referred to a neurologist and neurosurgeon for further evaluation about that as well as her torticollis. I asked her if I should be encouraged or discouraged about not finding any specific cause for her torticollis and, surprise, she didn't really have an answer. And I asked her if they could provide a brace or something for Maggie's neck in the meantime, and she said no, because they need to know exactly what's wrong first. I understand that, but at the same time, it seems like we could do some "management" while we are waiting. The poor child is suffering and bored and cries all of the time because she can't do anything on her own.

Anyway,from my deduction it sounds like it is not a skeletal nor a muscular problem, so perhaps it is something neurological?

Needless to say, while we are so thankful they didn't see anything life-threatening like a tumor, I am still discouraged. Two more doctors added to our list of physicians who can't seem to figure out what's ailing my child. I am praying that we don't have to wait months to get in to either one. And I'm praying for solid answers to help our child.

Thank you so much to all who are praying and keep up with Maggie - I really do pray that God blesses each and one of you.

"If we didn't laugh, we'd all go insane..."

2010-11-22T13:09:00.001-06:00

Amen, Jimmy Buffet. Thank you MKW for ingraining that song in my head in the 10th grade because who knew how much I'd be singing it when I was 29!

Well last night we made another trip to the hospital - this time for Justin. At 5 pm we were enjoying a tree lighting festival (thinking we were doing something so "normal"). An hour later I was speeding down the Dallas tollway with Justin in the passenger seat moaning in pain and me praying that I wouldn't get in a wreck and that Justin's appendix wouldn't explode before we got to the hospital. We made it safely, thank God, but it turns out it wasn't appendicitis, but a kidney stone - which, according to the nurses, is about the same pain level as having a baby.

Poor Justin. I mean, really?! As we are sitting in the ER late last night, Justin feeling better after being shot up with a morphine cocktail, we both just looked at each other and started laughing.What else could we do?

Today I am so thankful it wasn't something more serious, and now we are back focused on getting Maggie's tests results back. So sorry to always write about our craziness, but I feel like I need to record it because when we're old and gray we'll never remember what all we have been through. And we need to remember!

Rough day

2010-11-18T20:21:00.000-06:00

Maggie's Chronic Lung Disease has not really been an issue until today when it reared its ugly head. This morning I was allowed to walk Maggie back to the MRI room and kissed her sweet head as she fell asleep under the gas mask. What I didn't know is that after I was escorted out of the room and the doctor started putting anesthetic into her IV, Maggie's lungs kind of went into shock or something, and her vocal cords closed up and heart rate dropped.

Thankfully they were prepared and had medicine on hand to open up her vocal cords, so they could then quickly intubate her with a breathing tube. The whole thing lasted about a minute, they said, but the doctor and nurses were a shaken up when they came out to tell me. They called it Maggie "misbehaving" but it was very serious and such a reminder of how serious anesthesia can be, especially for these small babies with lung issues. So after that, I had to wait three hours not knowing what to expect when they took her off anesthesia.

Thankfully she came out just fine, but cried for two hours and started coughing up blood where they had scratched her throat during the emergency intubation. And her nurse told me she is probably really sore not just from her neck being forced to stay straight during two hours of MRI scans, but also the way they manipulate her neck during the intubation probably hurt her. We got home after eight hours at the hospital and she cried for four hours until finally she fell asleep.

Honestly, I feel like I just went through one of the hardest days of my life. But then I realize that we haven't even heard the results yet. I honestly hope we don't hear for a little while- I need a few days to recover from today...

MRI and CT scan tomorrow

2010-11-17T10:21:00.000-06:00

Last week we had some encouragement news about Maggie. At her one year developmental checkup she tested right where a normal 9-10 month should be for fine motor and cognitive skills (technically she is really only 9 1/2 months). The doctor thinks cognitively she is going to be just fine and that was so good to hear. However, he did not even bother testing her gross motor skills (crawling, rolling over, etc) because she is obviously very delayed because of her neck. Overall he was very encouraged but prepared me that whatever is going on neurologically or with her skeleton might be something that we will be dealing with for several years or longer.

It is funny how your perspective changes as time goes on and you deal with harder and harder things. I remember being so upset about them putting a permanent tube in her stomach. Now I see that was really no big deal. Who cares about a tube if Maggie can otherwise function as a normal child? Now I am just praying that whatever it is, it can be fixed and Maggie can live a normal physical life. Her doctor said to make our goal for her to be ready to go to kindergarten. I'm fine with that!

I don't know when we will get the results of her tests, but I admit I have made myself so sick after reading on the internet the things that could be causing her torticollis. Some articles talk of life long pain; other things I have read are much worse. I am praying and pleading that this baby won't suffer any more. That she can be fixed to lead a healthy, normal life. She so badly wants to as she watches her older sister prance around the house in her ballet shoes, holding her princess CD player in hand. Maggie smiles like I've never seen a child smile when watching Mary Lawrence.

Thanks for praying for the anethesia tomorrow - I'm praying that Maggie can come home soon after and not have too many lingering affects from it.

Finally...

2010-11-09T20:42:00.000-06:00

Maggie is starting to make strides in her weight gain. She has been hovering around 13 pounds for about six months now, which is quite scary if you ask me. With the vomiting under control and now the 24 continuous feeding, she finally gained weight! She is now up to 15 pounds! That's more than a pound in two weeks. Woo hoo!

Now I know that is still really small, but I am so encouraged we finally have a plan that works, no matter how annoying it is to lug a feeding pump around all day. So by my estimates she will be 18 + pounds by Christmas! Yes, most twelve months don't gain an ounce a day but Maggie is catching up big time. And I'm adding fat to her diet wherever I can. She likes apple juice so I offer it all day long! And I will add corn oil to her baby food or just shoot up a syringe of olive oil into her feeding tube. Let's just say constipation is no longer a problem!

Anyways, her pain is much better thanks to Nicole (her old nurse) who came over last week and showed me how to tape her tube up better so it doesn't pull or rotate. She still screams when I touch it so they are starting her on antibiotic's in case there is an infection going on.

I am praying that Scottish Rite gets us in sooner rather than later for the MRI and CT scan. Of course I am anxious to know the results although I am not too hung up on it. I realize it is not in my hands and so why spend energy worrying about it? I have gotten back into the habit of praying over my children after they go to bed and through that the Lord has given me a renewed peace that He is going to watch over my children and help us through whatever we may face in the future.

Thanks for the continued prayer!

Photos

2010-11-07T15:30:00.000-06:00

A few photos from the past few weeks ...Halloween, the sweet party my friends had for Maggie, and pictures of Mary Lawrence as a flower girl last night.

Strawberry Shortcake

and her pink kitty cat

I have the dearest friends ever...

So much fun!

Finally a night of fun for weary parents - although ustin couldn't do many of his signature moves on the dance floor due to his back.

thanks lolly for coming in town to help again!

She thought Whintey, the bride, was Cinderella!

Happy 1st Birthday Maggie!

2010-11-04T23:23:00.001-05:00

Today my mom recounted the story of exactly one year ago when she ran through the labor and delivery doors at Baylor, right past the check in desk, to get to me as fast as she could in my hospital room. The nurse stopped her to make her sign in and she said, "I can't. My daughter is in labor and they don't think the baby will live!" The nurses then hugged her and let her through. She and my dad found me in my worst state- heavy contractions, no epidural, and having difficulty breathing. Maggie's heart rate was dipping eerily low and the doctors were scrambling. As a mother she must have felt so helpless, watching her daughter being rolled into the O.R., not knowing what would transpire inside.

She said my dad, my sister, and her waited for what seemed like eternity in the waiting room until finally they couldn't take it any more and my dad went and begged a nurse to check on our status. My mom said he walked back in the waiting room crying (which is a rare sight, if ever). She thought his tears meant Maggie didn't make it. But she was wrong! They were tears of joy. Maggie was born and she was alive! God heard our pleas for her life. He gave us a miracle in plain sight, for all to see and for all to know that He is the true author of life and that He is not bound by what He created.

So on this very special day I want to glorify God for what He has done. There is no medical explanation for why Maggie has lungs after 15 weeks of little to no amniotic fluid, but she does. And when I wake up in the middle of the night and hear her rhythmic breathing, I am reminded again of those quiet nights in the hospital when I would pray for just that very sound. And one year later, the very sound of her breathing moves me to tears.

Thank you for all the birthday cards, emails, calls, gifts. It means so very much. Thank you to my dear friends who threw Maggie a little party because her mother was too exhausted to do anything. Thank you to my family and husband who have held me up through this past year. And thank you to all for the prayers for Maggie. No doubt it's been a hard week, but what a reminder I have today, on her first birthday, of God's faithfulness and goodness. Happy first Birthday to my Maggie! We are so proud!

- Posted using BlogPress from my iPhone

Prayers and Praise

2010-11-03T20:51:00.001-05:00

Our visit to Scottish Rite was not what I had hoped for. In fact, I was shocked when the doctor told me that her torticollis was not a muscle issue. What?!! So you mean to tell me that all of this stretching, therapy, and torture of my child has been for nothing? The doctor believes that Maggie's torticollis is due to either a neurological issue or a skeletal issue. Either way, it is much more serious than we thought. He didn't elaborate on either but ordered a CT scan and MRI, which we will have in the coming weeks.

Of course I am beyond upset. I called her pediatrician/neonatologist first thing today and discussed it with him. He reminded me that Maggie did not have any brain bleeds as a baby, and cognitively she is right on track. Yes, her gross motor skills are delayed in that she can't sit up or roll over. And that's why the Scottish Rite doctor was worried about something neurological. But it just seems like someone would have noticed something before now. And maybe I am in denial - and someone tell me if I am - but I just feel like it is really hard to sit up when your head is off balance. And it is hard to do tummy time when your stomach has a valve coming out of it that hurts constantly for some reason. And doesn't it seem logical that not gaining weight for six months would have something to do with weak muscle tone?

I am just beyond frustrated. And my heart just aches. I love my baby so much and I don't want there to be anything wrong with her. I don't want her to suffer. And knowing that I've probably been hurting her for all of this time kills me. Here it is her first birthday tomorrow and I want to celebrate, but I have this worried feeling deep in my chest. And I don't see any relief in sight.

So I am asking for praise and prayers tonight. Again, I don't know why I feel bad asking for prayers. Like I am hogging people's prayer time. But Maggie is so dear to so many people and I know that many of you love praying for her so this is what I humbly ask:

Praise for her life, that she is here on this Earth with us, and praise for how far she has come in the past year.

Prayer that she does not have anything seriously wrong with her brain, spinal cord, or bones. That this doctor is wrong and that whatever she has can be fixed easily and painlessly. Pray that Maggie will have a normal childhood and healthy life. And that God will be glorified through it all.

Thank you.

A wreck

2010-11-01T09:59:00.002-05:00

Yesterday Justin had to go work for a few conference calls (yes, Sunday morning conference calls). I felt physically awful because I have a bad cold/cough and couldn't sleep well. Maggie's screaming had not been relieved by the new button. It was 11 am and all I was thinking was, "how am I going to make until nap time?" I know every mom has days like that where you nerves are just shot and you think, "I'll just load the children up in the car and run an errand just to get out of the house." I mean, either she's screaming in the house or in the car, might as well get something done, right?

Well, Maggie's crying escalated due to fatigue and Mary Lawrence had a meltdown because I wouldn't buy her a toy. As we are driving home, I am at the end of my rope. I just want to get home and put them down for a nap so I can have some peace. I don't remember much of what happened next, except that I was trying to talk to ML about why we didn't need another toy and then the next thing I know we are in a bad wreck. The road curved and trees line the street. I guess I had turned to look over my shoulder at Mary Lawrence right when the road started curving and my car grazed the curb then lost control and went up on right into a tree and then kept going and hitting the other trees. Or at least that's how I remember it.

The next thing I know people are running up to the car and asking if we are okay. I didn't realize how bad it was until I got out...

Just when you think you can't take any more....

The rest of the day I felt so guilty. I still do. I have always been a good driver and never gotten in wreck. I could have seriously hurt my children and I would never have forgiven myself. I am just adding to my husband's stress level - like the constant medical bills aren't stressful enough?

We moms in our big SUVs think we are invincible, trying to drive while reaching back handing our children toys or talking on the phone (which I wasn't!). I thought if I wasn't texting then it would be hard for me to get so distracted that I would get in a wreck. But I was wrong. Like we've all heard before, life can change in an instant. Never again will I take driving my children around in the car so lightly. And I will always try to avoid driving in the right hand lane when there are potholes and trees so close to the street like that. That tree came so close to Mary Lawrence's door. I am just so thankful to God that are all safe and were not hurt. But I don't know if I will ever be the same in the car again.

As for my mental state (because I know you all are wondering!) I pretty much sobbed all yesterday afternoon. Poor Justin is probably regretting his decision to marry such a basketcase. (He was so sweet and understanding about it all, he even brought me flowers last night when he got home from working). Anyway, you know how celebrities check themselves into the hospital for "exhaustion" and "fatigue"? I'm sure that's probably Hollywood code for "drug overdose," but right now it would be really nice just to check into the hospital and just sleep! An have someone else take care of me and everyone else.

Obviously that's not going to happen. I just have never felt at such a low point of helplessness and exhaustion in my life. Maggie cries the majority of the time she is awake (although last night trick or treating she did pretty well- I think distraction is good for her!). But at home the only thing that makes her somewhat calm is to be put in her bed. It's like she knows no one is going to mess with her in her bed. Frankly it's just pitiful and it makes me feel like I am neglecting her, but I don't know what else to do. I said earlier in the Spring that I don't know how I would deal with all of her medical issues if she was a fussy baby and how thankful I was that she was so sweet. Well those days are over. I felt like I handed the doctors my sweet, happy, but malnourished baby, and they gave me back an unhappy, miserable, and still malnourished baby.

I have never been more frustrated in my life. I don't care about the car, I don't care about anything material at this point. If we have to sell everything and move into an apartment I would do it if it would mean having a stable, happy, normal, and healthy family.

This is the tree that I hit. It is hard to believe that a medium size tree like this one could do that much damage to a Tahoe, espcially when I going less than 30 mph. Imagine what a tree could do going 75 mph...If your children are screaming, so be it. It is more important to focus on the road and get them home safely...let this be a lesson to all of us moms.

A little swticheroo

2010-10-27T21:44:00.002-05:00

We spent two hours at the GI doctor this morning. Maggie screamed the whole time. Now, usually this would really stink. But I was actually glad the doctor could see her misery in action. I told him that she cries constantly. And it all started after we got the g-button two months ago. I told him that (thankfully!) the vomiting has stopped since we put her on a new formula at a 24 continuous feed. And he told me that her barium fluoroscopy test from yesterday came back normal.

So we brainstormed for a while as to why she could be in pain. My instinct is to think her esophagus must be horribly burned after such terrible reflux, but he thinks the Prevacid she's on should prevent that. He suggested that he could do an endoscopy under anesthesia so he could look down her throat and see if he sees any problem issues or an ulcer. But as we were talking, I told him that every time I touch her button, she winces and cries. And she refuses to do "tummy time," I assume because it hurts her. He told me that a button should not hurt and, after inspecting it, suggested we try a different sized button.

So you would think after all I have seen and experienced over the past year I could handle him casually popping out her current button and putting in a new one. But I have to say, I really thought I was going to hit the floor when I saw through the corner of my eye what it looked like. I know it doesn't bother some moms, but it just makes me so weak to see a perfectly round hole in my daughter's stomach. It sounds strange and awful but it looks exactly like a little bullet hole that's not bleeding. And, is it just me, or is it really strange that they can just pop those things in and out like so routinely like that? Seems like they would at least need a nurse in there to assist (especially in the case of a fainting mother!).

So the plan is to keep feeding her continuously and hope that the button replacement helps her pain. If not, we will do the endoscopy. He agreed that with all of her medical issues we cannot assume that she is just going through a fussy phase. Thank God for good doctors who promise to keep trying to help your children until they get it right. It means so much to me. And they are going to order a portable feeding-pump-in-a-backpack (lovely!) so I don't have to lug around that tripod thing.

I just hope that I can have my happy baby back soon. Although I did tell him as we left that I can deal with anything - even constant screaming - if my struggling child would just start gaining weight...

Morning Surprise

2010-10-22T19:56:00.002-05:00

Well Maggie has been screaming pretty much any time she is awake the past few days. I know she is teething, but is it something else, too? It is hard to know. The GI ordered another test that puts barium into her tube and sees where it goes, to find out if there any kind of blockage or something else. That's on Tuesday and our GI appointment is on Wednesday.

As for her feeding, she did great on the pedialyte for 48 hours. Yesterday we started a new elemental formula at 15 ml (or half an ounce) an hour through her feeding pump. I slowly worked her up to 25 ml an hour by eight pm and thought she was doing great. Well about two am she started vomiting and wretching again like she was doing before- the whole episode lasted about 10 minutes and was really scary. And it looked like she spit up a gallon of milk so I don't know where that left us with our daily volume count. Frustrated, I turned off the pump and decided to let her stomach rest until morning.

The thing is, Maggie needs to eating a lot more in order to gain or keep any weight. So here we are fighting to keep less than an ounce down, knowing that is not sufficient. But as someone said, "baby steps." So my plan since then has been to go back to 20 ml/hour and just go up little by little. Although this means she has to be connected to the pump 24 hrs/day in order to get as many calories in her as possible, meaning I have to carry the pump with me anytime I go out. As I was jamming the tripod-like contraption into my car this morning, holding the carrier in the other arm with Maggie screaming as I accidentally tugged on the tubing, I thought, "Haven't I been here before? Oh yes, 8 months ago when I was lugging that oxygen tank and monitor around...". It wasn't until after a couple of times getting in and out of the car, I realized it was probably easier to temporarily unhook her from the pump, rather than trying to lug everything at the same time and risk dropping it or her and then rushing to the ER because it pulled her button out. Duh!

But there has been some good news, and I need to always include that because prayers are being answered and I want everyone to know. First, Maggie got accepted into Scottish Rite as a patient for her neck! We go in two weeks and I couldn't be more excited to have the best ortho docs come up with a plan for her. Second, Maggie has been saying "Bye Bye Bye" and "Da da da" which is so great because that's what a typical nine month old would be doing verbally. And she's getting her first tooth! These little things mean so much to us - anytime she does anything "normal" we have reason to celebrate!

Anyways, thanks for all the encouragement over the past few difficult days. I read my emails and blog comments this morning after I woke up to find that Blue (our huge labradoodle) had thrown up five times during the night in Mary Lawrence's room. Not only that, but you know how dogs eat grass when they are sick? Well, since Blue couldn't access any grass, he just ate big chunks out of her PB Kids rug. I mean, seriously, Blue? I wanted to just go back to bed and pull the covers over my head. Instead I opened my computer to send some emails and laughed so hard at my friends who made comments to that same effect. Like, "Really, Lee, how do you get out of bed anymore?" I had a good laugh at the ridiculousness of it all, too, And I am so glad that people can be honest and say, "Your like really stinks right now"! It's true. There is no sugar coating it.

I say all of the time, but it's only by the grace of God that we are able to laugh amidst our circumstances. Without His strength, I promise I would not get out of bed in the morning!

Unbelievable

2010-10-20T14:33:00.001-05:00

I wish I had more time to record the happenings of each day. The absurdity that fills our days sometimes would make a great movie or book. I mean, no one could make some of this stuff up.

Take yesterday, for example. As I wrote that last blog post, ML was laying in my lap because all morning she had been complaining her stomach hurt. That's nothing new with her bc of her potty issues, so I just kept encouraging her to go relieve herself. But when the complaining turned into screaming I decided to call the pediatrician's nurse line. She said to bring her in immediately in case it's appendicitis. So we rush to the doctor. Mary Lawrence is screaming hysterically the whole way because she hates the doctor and she feels horrible. We get there and she continues to scream uncontrollably. It's obvious she's in pain and so sick and I have a gut feeling she's about to throw up. So I ask the receptionist if we could please be taken back to a room because I fear any minute she's going to explode. The lady basically ignores me and I watch as she checks out three families with bouncing, healthy newborns. Tears creep into my eyes as I, myself, am about to explode with frustration.

So there I am walking around the sick waiting room holding my screaming daughter, her legs wrapped tightly around me and her head in my chest. Then it begins...five rounds of vomit in between bouts of screaming. People watched in horror as ML soaked the both of us- all down my shirt, pants, shoes and everything she was wearing. Horrible, just horrible.

Thankfully, some nice nurse took us back and cleaned her off. We stripped her down and since they didn't have any blankets, I had to hold my feverish child against my soaking wet clothes. And we waited, and waited, and waited for the doctor. For an hour!!!! The whole time I'm thinking about how I need to get home and take my other baby to her doctor bc she too is suffering.

We finally saw the doctor, who confirmed the stomach bug is going around. I carry my naked daughter out of the office and drive her home. Run to CVS to get supplies. Drive home and pick up Maggie (thank goodness I have help on Tuesdays!) and took her downtown, sobbing the whole way there- really, this is just too much. I mean, it just broke my heart to leave my sick child at home with a babysitter when she needed me.

Anyway, Maggie's doctor is stumped about why she is unable to keep anything down, but we are going to try a few things over the next few days. One thing we are trying is 48 hours of just pedialyte to let her stomach rest. She did lose weight and I about broke down when I told him that the whole reason we got the darn g-tube in the first place was so we wouldn't have to worry about her eating. She may have a valve in her stomach, we thought, but at least she's going to turn into a chubby, healthy baby. Wrong!

So on the way home we stopped by CVS to get pedialyte. As soon as I walked in our back door, it hit me. Yes, I also got the stomach bug. Within minutes ML and I were in her bed throwing up in the same bowl. She'd throw up, then it would make me throw up. Justin later said it was like a mini version of that scene in "Stand By Me." Like I said, you can't make this stuff up!

About 4 o'clock I called and begged my mom to get on the next flight to Dallas. I just can't do this alone (poor Justin can't help much in his condition). Thank God she came immediately and we are so grateful because ML was up all night delirious with fever and, yes, screaming constantly.

Today we are feeling a little better, just weak. We're happy Maggie is keeping down the pedialyte and hoping that she can keep the formula down tomorrow.

- Posted using BlogPress from my iPhone

Suffering

2010-10-19T10:16:00.001-05:00

It's been a really hard few days. On top of everything we are dealing with, I got the news of another pprom baby who passed away. I did not know her mother; I began following her blog after she posted on a pprom message board. Our stories are similar - pprom very early in pregnancy, bed rest, NICU stay. Except her daughter had a much harder fight than Maggie. She was in the NICU seven months and on the ventilator the whole time. Every day was an up and down for this family - desatting, oxygen scares, infections - nightmare after nightmare. Well, a few days ago I saw an unexpected and heartbreaking post - their baby girl died in their arms at the hospital after contracting a virus her tired body just could not fight.

How I sobbed for this family I don't even know! It is not fair that I have Maggie, and they don't have their Natalie. I can see how so many people love Maggie who have never even met her. Praying for someone creates a love and connection that is so tangible.

Since hearing this news fear has overwhelmed me, reminding me that we are not promised any amount of days with our children. And seeing Maggie so sick scares me. We are dehydration watch at our house. Maggie is not keeping anything down. She looks sickly and pale - and we are counting her wet diapers. If we don't get 4-5 each day, we have to go to the hospital. We have tried so many different things and nothing is working. Her GI doctor is out of town for another week; and he doesn't want to prescribe anything else until he sees her. We are going to see her pediatrician/neonatologist today - perhaps he can give us some answers. Maggie is crying nonstop - what happened to my happy baby? She is suffering and I can't bear to watch it. I can't bear for her to lose weight, although I know that's a given. Not having any body fat coming into the cold/flu/rsv season scares the living daylights out of me. She has no "reserves" to help her fight anything like that.

Justin is still hurting; he looks like an old man hobbling around the house . I know he is suffering, too, but is going to work and surviving on pain medicine. He is getting a second opinion hopefully this week.

Thank you for your prayers, emails, and thoughts.

Starting Fresh Each Day

2010-10-15T10:45:00.001-05:00

Well we had some "firsts" around here yesterday: the first time I let my daughter leave the house to go anywhere with her pajamas on; the first time I gave her candy for breakfast ( I had forgotten to give her breakfast when we left the house at 6 am and all I had in my purse was a Kit Kat); and the first time I gave her a haircut because I didn't have time to wait an hour at Cool Cuts only to have them do a horrible job. Well, lucky me, I didn't have to go anywhere for that this time because we had another first: while I went to check on Maggie, Mary Lawrence grabbed the scissors and started cutting chucks of hair away from her head.

Yes, things feel like they are just a little out of control around here. That's why I haven't blogged. I can't stand to complain and always write about what's going wrong in our life. But just in case my friends are wondering why we've fallen off the face of the planet here's what's been happening:

1. On Sunday Justin threw out his back. He has been incapacitated for six days now and is still in excruciating pain every time he moves. He had a cortisone shot but it wasn't the quick remedy he was hoping for. This is very serious and we are not taking it lightly, but I really feel like I don't have much "nursing" left in me. Poor Justin is in so much pain, and it's been scaring Mary Lawrence to see her daddy like this. I hate to be a prayer hog - always asking for prayers for my family - but I just don't know if we can take much more. Please pray for Justin's back to heal and for him to avoid back surgery.

2. Maggie is no longer the happy baby she was before the G-button. It's hard for me to admit that because she is so sweet, but something is bothering her big time because she is constantly fussy. Ever since they increased her feeds (because she only gained a few ounces in the month after her surgery) she has been projectile vomiting nonstop. Even with doing a slow, continuous feed at night, she still wakes up soaking wet from all the reflux. It is quite alarming and I'm now sleeping her in room because I am so scared she is going to choke at night and we won't hear her. At the same time, she has to gain weight. It's not an option not to let her gain weight. During the day we feed her 3 ounces over an hour and she still spits it all up as soon as we move her or put her in the car seat. Of course, this doesn't help her oral aversion. She has completely backtracked and won't even touch the bottle to her mouth. Every time I hear her coughing I just think, "Oh no!" and run over to her to try and "catch" the vomit - literally. It's totally out of control and I can't take it anymore. We have calls into the doctors but she is on the maximum meds she can be on for reflux so not sure what else they can do.

3. As for the torticollis, the therapist told me yesterday that they want to explore other options while we wait on Maggie to get into Scottish Rite. She said there are some other things that can cause her to be off balance - like the fluid in her ears may not be in equilibrium and that may be causing her to tilt. There are some other things she wants to research and it just stresses me out to write about - there's always something for me to stay on top of...

4. Helmet - Guess who needs another one? Although the first one did wonders, there is still a lot that can be done and she has grown out of her first one. I really don't care that she needs another one, I just wish insurance didn't consider it a "cosmetic: procedure. I mean, really, is it her fault that she was smashed up against my ribs for four months without anywhere to move and then flat on her back for two months in the NICU?

I know God is using all of this strife for His good purposes. It's just hard to see what those purposes are when you feel like your family is crumbling apart right before your eyes. Two things are clear: One, God is using me as the glue to hold this family together and, two, I stink at doing it. I cannot do it alone. I need His help to get through every hour and every day. I need His strength, His patience, His gentleness, and His love so I can be a mother whose husband "has full confidence in her" and whose children call her "blessed." (Proverbs 31). Honestly, I don't think they would say those things about me right now. But due to the grace of God I can start afresh this hour and that is what I am going to do....

Oops

2010-10-04T10:44:00.005-05:00

Well, we learned this weekend that the helmet is good for more than one reason: when your three year old pulls your baby off the bed by her feet you are no longer annoyed by that piece of plastic around her head.

Yes, this is what happens when there is major miscommunication between husband and wife. After hearing an awful thud, I ran into the room - my hands covered with raw meat, mind you, because I was making meat loaf - to find Maggie crumpled face down on the floor. (Justin had left her face up at the top of the bed so ML had dragged her down the middle of the bed and then let go as she realized she couldn't possibly hold her).

So all afternoon we dealt with screaming (including me), pacing, worrying, guilt (me), and every emotion in between as we contemplated going to the ER. The sad thing is that if Maggie were a normal, healthy child we'd have probably rushed her immediately to the hospital for our own peace of minds. But because we have frequented so many hospitals, we just weren't that motivated to go. If she didn't have her helmet on, sure, we would have been there in 5 minutes. But after a few bone checks, she seemed just fine. No lethargy, no abnormal crying, so we just shrugged our shoulders and got to talking to ML about the dangers of dropping babies on the floor.

Yes, we opted out of an afternoon at the ER and instead went on a stroll to Eatzi's to get some French bread, Brie, and Pinot. Ha ha- is that terrible? I guess we've learned to enjoy ourselves as much as possible in the short times we have when someone is not either screaming, projectile refluxing, or requiring some kind of immediate attention - which, sadly, is not very often.

ML loves getting in her sister's crib and so was actually trying to do something sweet (or at least that's what she told us!).

This morning before school- she's already excited about Halloween.

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Update

2010-09-30T15:24:00.001-05:00

Well I haven't updated on Maggie in a while because I've been so discouraged this past week about her progress, particularly her torticollis. I have been beating myself up lately for not doing her stretching and strengthening exercises more often. But the more I've thought about it, the more I have come to believe (in my own humble opinion) that a normal child would have shown a lot more improvement after six months of intensive therapy like Maggie's had. Which is why I've convinced myself that her torticollis could is probably more related to how she was in the womb with no fluid. (Perhaps her muscle didn't grow properly as she could not move around much? - I mean, it makes sense to me!). I am just praying we get approved to go to Scottish Rite so we can get a better opinion on that. Perhaps she will need surgery sooner than we think. And the Physical Therapist recently mentioned using Botox as well on her neck muscles to help loosen them up (I know it's the opposite of what you'd think Botox would do!)

The truth is, what we are dealing with is not overwhelmingly serious, but we still have to deal with it. And the sheer amount of time needed to devote to her issues is overwhelming to me. On top of that, in the past month we have gotten a new Occupational Therapist, Speech Therapist and Dietitian. It was very frustrating to deal with that because I spent about a month earlier in the summer figuring out our "Fall" schedule - managing school, Maggie's appointments, Mary Lawrence's dance, doctors visits, and so on. But, lo and behold, that was a big waste of time! In addition to her Occupational Therapist leaving Baylor, insurance issues have forced us to find a new Speech therapist.

I had a poor attitude about all this change at first - I mean, I worked so hard to get the perfect therapists for Maggie at the perfect times! But you know what, it all ended up being okay. Having fresh sets of eyes looking at all these issues has really helped. And these new people are truly motivated and excited to help Maggie. Sure I was discouraged when her new Occupational Therapist told me that in addition to the original issue of torticollis, I needed to start thinking about the problems it is causing in other parts of her body. For example, since she can't sit up yet (because of her torticollis and weak muscle tone) she is not learning how to do the pincer grasp (picking up cheerios). Another issue is her eyes muscles - they are going to be very weak on one side since she is always looking to the left and that could affect her vision later on in life (and I had two eye surgeries as a child for similar reasons so that makes her more at risk). I just don't want to think about stuff like that right now!

But at the same time I'm glad she is aware of these things and helping me to stay on top of working with her. She seems to think outside the box, which I like. She is going to help make a special chair for Maggie that will allow her to sit up while hopefully holding up her neck. She also suggested using a simple Ace bandage to hold down her right shoulder so she can more easily look to the right.

The new Speech Therapist (feeding therapist) I found comes to our house, which is nice, and seems really motivated to help Maggie work her way up to eating more solids. And she is going to work more closely with our new dietician at Children's (who I also love!). We met with the dietician on Tuesday and I was very discouraged to hear that Maggie had only gained 4-5 ounces since her surgery. So she increased her daily intake a lot. Which I am happy about it because I've been thinking she needs more for a long time. But now we are battling major projectile vomiting from the increased volume - ugh! So we are trying to balance feeding her at a slow enough rate to avoid spit up, but not too slow where we never have time to sit her up and do her exercises. Ah, if we were only dealing with one issue it would be so much easier...

So that's about all for now. Sorry for the listing of problems - but I also know people have been praying for us and want to know how Bunny is doing. (Yeah I've gotten in the habit of calling her Bunny (like she needs another nickname!). She's just so cute and little like a baby bunny and for some reason I sing "Little Bunny Foo Foo" to her all of the time, which is probably not a good idea since it is kind of a violent song for little babies!

Continuing Education

2010-09-29T11:26:00.000-05:00

You know, for a long time I felt guilty that I really wasn't using my education for anything that useful. I mean, really, I worked so hard all during high school and college to make good grades and pad my resume with all sorts of wonderful experiences. But for what? To play pat-a-cake and dress up for pretend tea-parties? Don't get me wrong, there is nothing more than I wanted than to be a stay at home mom and do those things. I just find it interesting that women are so groomed to be competitive in school and the work force, but are left feeling sort of confused when they encounter motherhood and realize that in all their studies and testing, they did not learn one iota about what it means to run a household or be a mom.

Motherhood is something most women long for, yet feel so under prepared when they get there. Sure, instinct kicks in for a lot of things, but so many things it doesn't. I can't tell you how many of my smart, competitive friends got so frustrated with themselves because they couldn't breastfeed. They felt like failures when it really had nothing to do with their level or determination or commitment. Why is that? We are taught that with most things in life if your work hard enough, you can succeed. But motherhood is not like that. For example, we have been working for so long on getting Mary Lawrence to listen and obey the first time we tell her to do something. Every day is a battle, and every day it just doesn't seem to get any easier. I get screaming tantrums instead of "yes mommy, I'll get in the bath now." And with the feeding thing, I work so hard, yet it never gets any easier or better. I am sure it will, but results are not as immediate as with other things in life.

But having said all that, while school does not help us at all with some of the important responsibilities of being a mother, it has helped me in several ways that remind me that my education was totally worth it. For one, this former history major has used her research skills to aid in finding out more info about all the medical issues plaguing her family, in order to find the right questions to ask her doctor and make sure nothing is falling through the cracks. And I've really had to tap into my persuasive skills when our insurance refuses to pay for certain things.

Another thing is managing our crazy schedules. I finally switched over from my paper day planner to Outlook so everything is also in my phone. (I have even color coded each child and all their appointments). I have taken over responsibility for all our medical billing and insurance stuff. We probably get 5-10 letters a day regarding this stuff- no joke. No one tells you that when you have a sick child that one-fifth of your day will consist of phone calls and bill paying related to this stuff. Yesterday I felt like I was in college again because I went to Starbucks with my huge bag full of folders and stayed for a few hours. But I was not studying for a big exam like the other students. No, I was filing and typing letters and making phone calls all in regards to Maggie's health stuff. I think that doing it while sipping coffee and people watching makes it a little fun actually:).

Furthermore, it sounds so dumb, but I really think being able to carry on an intelligent conversation with all these doctors make them respect you more and really listen to what you are saying. It's like some of them take you more seriously when you say something half-intelligent. Funny because several times I've been asked where I went to school. "Oh that's great," they say when I tell them, "What do you do now?" Umm...you're looking at it...

So all you moms out there that may be feeling that you're education was completely wasted, be encouraged. You are using your education when you don't even know it. I no longer feel embarrassed about saying what I do. Because I am truly using the skills I learned in school to make my family's life better and more enriched. Sure, the baby years are tough. But I look forward to sharing my learned love of art and museums and culture with my children as they get older. I love sharing my love for the library and bookstore (yes, I am a nerd). I hope that my background in history and french will be of some use to them in the future. And I look forward to nightly homework sessions (again, Justin will confirm that I am a dork because I really do like homework).

But having said all of that, in closing this totally waste of time essay on my life, I would suggest that schools bring back 'Home EC.' Maybe it's sexist, I don't know, but I do believe I would have truly benefited from learning how to sew on a button or how to manage bath/dinner/cleanup/children's fussy time all while staying composed and looking pretty like June Cleaver. Those things would really be helpful in my life right now....

"We will tell of your good works..."

2010-09-20T21:44:00.000-05:00

Margaret Lee was baptized yesterday. It was such a special day; words cannot describe. Let's just say when the choir opened the service, walking up through the aisles singing "We come, O Christ, to you," the tears came flooding out...

On bed rest I remember pleading with God that we would see this day. I envisioned us standing before our church, telling of God's healing, of His goodness, and His power. I prayed - oh how I prayed - for us to hold our baby in our hands and claim God's covenant to His people with her baptism.

Yesterday the minister who visited me weekly in the hospital and prayed over and for Maggie and me was the one who baptized her. This is the same minister who encouraged us to seek God through it all, to trust Him, and to love Him though our trials. He and his wife lost a baby girl of his own a few years back and God hand-picked them to be part of our lives during our whole ordeal. But God is good. Yesterday, in addition to baptizing Maggie, he also baptized his newly adopted precious son. God is faithful; He is good!

We love you, Bunny...

With Mimi (justin's mom)

Wearing the dress her older sister wore...

You are a child of God, Maggie. It is our prayer that we will be able to raise you and your sister to know that. We strive to bring you up in a family that loves the Lord. Our hope is that we will teach you to walk in His way and to seek Him in all you do. God has truly blessed us in allowing us to be your parents.

Update

2010-09-17T07:09:00.001-05:00

It's just a mystery- no weight gain since her surgery. So frustrating because we increased her daily volume and she's now getting everything and not spitting up a lot. I know it seems like we should ignore the dietitians and doctors and just increase her volume by a lot more ( I'd throw in some heavy whipping cream if it's wasn't for her milk allergy!), but we have to be careful about doing that. Too much fluid from too much formula can mean more fluid in her lungs and we can't have that.

It's a fine science figuring out how much she needs, trying to gauge how much energy she is using and figuring out how to make her gain weight at a steady, healthy rate. Hopefully she will start gaining soon and there aren't any other issues we don't know about.

On that note, we are adding one more doctor to the list....her doctor and myself are unsatisfied with the progress of her therapy for her torticollis (what we call "crooked neck"). She's had x rays and the doctor doesn't think she has scolliosis, but now he wants to get a second opinion. Thankfully we have the Scottish Rite hospital here with renowned orthopedic doctors so hopefully she can get in within the next month. Because with her torticollis so bad she will be delayed in sitting up and crawling, etc.because she is off balance. I'm glad we are getting a second opinion because I'm so tired of doing her exercises and stretches all throughout the day and never seeing any results. On top of that, our sweet baby has been so fussy lately and I truly think it's because she's so frustrated and can't do anything but lay there, which she has been doing for 10 months now.

At her post op appointment yesterday they took off all the bandages and we saw the button up close. I almost passed out when she started cleaning all the gunk that had formed around it and pressing her fingers all around it. Now each time we use it, we attach the tube to the button and then take it off when she's finished. Now that it's not taped down she can easily grab the tube if it's in reach- if she yanks it, she will pull the button out. "So you mean she'll just have a hole in her stomach?!" I asked. Yes, she will, she said, and we'll have to put it back in or take her to the ER. I told her I'm not sure I'm cut out for this. You see, having been surrounded by tubes and wires her whole life, Maggie is comforted by them. She can find them so easily, even reaching under her clothes or blanket to find one. So we have to be so careful. I really think I will faint if she does manage to pull it out (which they say is a when, not if). Hopefully I'm not by myself when it happens...

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Do I look like I'm getting bigger?

2010-09-14T13:43:00.001-05:00

I can't tell. We are going Thursday to be weighed. She's not spitting up a ton, but every little ounce counts for her...we'll see!

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Rainy, Happy Day

2010-09-07T15:31:00.001-05:00

The rain came down today in Dallas like is hasn't done in a while. It was so refreshing and a great day to stay inside and cuddle up with my precious girls. I was kind of glad that my babysitter called in sick today. I didn't have to rush around town today trying to catch up on dry cleaning and grocery shopping. My house is a wreck and toys are scattered everywhere, but I don't care. All I have wanted is for our lives to get back to a somewhat normal life and that is what I got today - time just hanging out with my girls . . . making lunch, playing on the floor, and cuddling up to Caps for Sale, Mary Lawrence's new favorite book. It is days like today when I just want to thank God over and over for my children. Nothing gives me greater joy than spending time with them.

Thankfully, Mary Lawrence is back to her normal self and Maggie has not come down with the stomach bug. She is a little sore and cries when you hold her in a way that is uncomfortable to her stomach, but other than that, she is healing great.

Funny thing is that she gulped down her entire bottle the past two mornings, leaving Justin and me chuckling. Really, Maggie, you just had a tube cut into your stomach because you didn't eat and now you decide to eat?!! I'm not really stressing about it because I know she is flaky when it comes to food and tomorrow she probably won't put the bottle to her mouth. Who knows...maybe the stress relief we have all felt with the tube has eased her up a bit. We'll see. I know we made the right decision, though, because of the pure satisfaction that we feel when we are able to pump her full of high calorie formula through the tube. Just knowing that she is going to be a little chubber in a few months brings a smile to my face. And knowing that if she does get sick this winter season, we have this wonderful thing called a g-button to feed her and give her medicines to her.

Poor babies!

2010-09-05T05:41:00.001-05:00

Before I had children I could not function unless I had a good 9-10 hours of sleep. No joke. I couldn't hold my eyes open past 10 o'clock and would easily sleep until 7 the next morning. I remember thinking, "how in the world am I going to survive those first few months of motherhood when my baby wakes up all through the night to eat?" Ha! How naive I was to think that the sleep deprivation only lasted a few months! I haven't slept through the night in over a year. But you know what? I am just fine. Tired, yes, but I'm still able to do my job as a mother. Pretty cool how God really does give women the strength we need to take of our children despite our fatigue. Lord knows most men couldn't do what we do for more than a few days! (just kidding, hub).

Speaking of fatigue, right now it's 5 am and I'm laying in Mary lawrence's trundle bed. She's thrown up about 12 times throughout the night so I figured it'd be easier if I just stayed in here with a bowl at my side so maybe, just maybe I won't have to keep changing her sheets. I am so tired but my mind cannot clear enough so I can sleep in between these 25 minute throw-up intervals. Probably because I am making myself sick thinking about what will happen if Maggie gets this stomach virus. It would be really bad and I'm so mad at myself for not washing Maggie's hands yesterday after ML got home from Little Rock and touched her. I'm usually so good about that. Now all I can think about is how I'm going to keep this three year old quarantined in her room tomorrow. And what I am going to do if our poor baby starts vomiting when her little stomach is already hurting so much.

Praying for a quick recovery for my little angel....and for strength to make it through what's looking to be like a long day.

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Going Home

2010-09-03T10:45:00.001-05:00

Maggie had a really good night and is now taking full feeds through her tube. Her stomach looks really good and she hasn't had any vomiting (something that happens often with g-tube placement). So we are going home this afternoon! I am so thankful for that everything has gone fairly smoothly and now we just have to watch to make sure the area around her button heals properly and does not get infected.

Thank you to everyone who prayed us through this hospital stay. We are so blessed to have such committed friends and family.

More Drugs, Less Clowns Please

2010-09-02T11:18:00.003-05:00

Maggie is doing much better today. Thank you for praying. Yesterday she was in rough shape. I told my mom that it's different when you are watching your baby in the NICU because they are so small they don't really cry or show much pain. Yesterday was much harder. Maggie looked at me in tears as if to say, Help me!" It just broke our hearts to see her hurting.

The only hiccups we've had is that yesterday the NP was really hesitant to give her morphine because of her lung issues, but I kept insisting that she was in pain and needed more than Tylenol and ibuprofen. (They gave her codeine in the recovery room but the rest of the afternoon was just the Tylenol and ibuprofen.) I'm sorry, I know I am not a doctor, but if I had stomach surgery I think I would need more than over-the-counter meds. The child was screaming all day and the NP kept insisting it was just her waking up from anesthesia. Maybe so, but I know my own child and I have learned to trust my instincts and they were right on this one (with a little encouragement from my doc sis-in-law). By four pm I guess I had harassed them enough that they started giving her morphine every two hours and when the surgeon came in this morning he couldn't believe they didn't give her any all day yesterday. So that was upsetting to say the least. But she's happy now and I'm glad that all our hospital experiences have taught us to really stick up for your child, even if you get push back from the staff. Because in the end we were right - she needed more meds. And she was much happier for it!

Second, and this is kind of funny and tragic at the same time, after we met with the surgeon post operation, we were sent back in to the waiting room until we would be called back to Maggie's room. They said it might take 30 minutes or so. But an hour passed and I got nervous and Justin went and asked the person at the desk what was going on. They called up to recovery who told them Maggie had been awake for 20 minutes screaming. They said they sent someone down but since there wasn't any staff at the desk, they didn't call for us. So we rush up to the recovery room and find Maggie writhing in pain. And to make matters worse, standing over this poor baby was none other than the resident hospital clown , who was making silly faces and singing loudly in an attempt to calm her down. I mean, seriously? You can go find the clown but you can't find her parents who are sitting in the waiting room with baited breath? Oh well. If in a few years Maggie screams horrifically at the sight of a clown, we will all know why...

Besides that, this is a wonderful hospital, I promise. Our hospital expereinces have also taught us that there are incompetent people at every hospital and that they shouldn't take away from the really wonderful and talented people that do work there. We have had great nurses and the NP (nurse practitioner) is much better today. Everything is so extremely organized and coordinated which of course I like. They have these wound ostomy nurses that come teach us how to care for her button and how to feed her. And we are very blessed that God led us to such a respected pediatric surgeon. If anyone ever needs a general surgeon for their child, Dr. Murphy is incredible. I can't tell you how many people have told us how great it is that he was our surgeon.

We are near the Troy Aikman wing where there is a huge playroom with video games and Foosball, and a whole hallway of all this Dallas Cowboy memorabilia. Mary Lawrence would love it all but she's in Little Rock all week with her grandparents. And there are these volunteers (mostly endearing old ladies) who come ask you what your needs are and push around a toy cart and hand out toys and activities to the older children. It's really neat to see what all they have going on here and how they serve the families who are going through difficult times. As much as I have an aversion to hospitals, I am so thankful that they are so wonderful to my child.

I took this video a few hours ago - you can see she is feeling much better. She learned how to wave "Bye Bye" last week so she likes to do it all time. I don't want to be an obnoxious mother who thinks every little thing her child does makes him or her a genius, but I can't help being so proud of her. A milestone so insignificant to most is so huge to us: