Monday, December 19, 2011

Merry Christmas!

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!

Tuesday, November 29, 2011

November 29th

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...

Monday, November 14, 2011

Update

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.


- Posted using BlogPress from my iPhone

Friday, November 4, 2011

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!


- Posted using BlogPress from my iPhone

Location:Happy 2nd Birthday!

Thursday, November 3, 2011

Surgery update

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


- Posted using BlogPress from my iPhone

Surgery today!

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.

Monday, October 17, 2011

Nov 3rd surgery

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.

-

Sunday, October 16, 2011

Sunday, October 9, 2011

First steps

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
Posted using BlogPress from my iPhone

Thursday, September 29, 2011

Braces and food

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...

Posted using BlogPress from my iPhone

Saturday, September 24, 2011

Rustic French "Bebe" Shower Luncheon


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.

Thursday, September 22, 2011

Updates

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...




- Posted using BlogPress from my iPhone

Tuesday, September 13, 2011

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.



Tuesday, August 30, 2011

Just playing







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 jalapeƱo sticks...


- Posted using BlogPress from my iPhone

Tuesday, August 16, 2011

Surgery Today

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!

-Posted using BlogPress from my iPhone

Sunday, August 14, 2011

New Developments

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.


- Posted using BlogPress from my iPhone

Thursday, August 11, 2011

Cheetos, Funions, and Saltines

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

- Posted using BlogPress from my iPhone

Saturday, August 6, 2011

Answered Prayer

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

Tuesday, August 2, 2011

Food Rebellion

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 thatMaking 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.

Sunday, July 31, 2011

Wild Goose Chase

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...

Sunday, July 17, 2011

Stream of my thoughts..

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. 

Saturday, July 2, 2011

My new checklist...

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!!!

Tuesday, June 28, 2011

Beach Trip 2011

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)

Friday, June 24, 2011

41 Words

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




- Posted using BlogPress from my iPhone

Tuesday, June 21, 2011

Procedure

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.

Sunday, June 19, 2011

Botox tomorrow - hopefully!

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.

Monday, June 13, 2011

Updates/Prayers

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...




- Posted using BlogPress from my iPhone



Wednesday, June 1, 2011

Pride, Denial, and Some Help from Above

"...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 )



Sunday, May 8, 2011

Pure Joy!

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!

Saturday, May 7, 2011

Happy Mother's Day to Me!

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:

Tuesday, May 3, 2011

Pure Madness

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.



Monday, May 2, 2011

Steps Back

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...