Five Days After Botox....

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!

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

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

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

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

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






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Vintage Movie Night

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

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!

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

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!

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

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

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!

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

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

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

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

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

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

(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

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

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!

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

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!

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

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

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

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

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

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!

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'

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

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..."

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

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

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...

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!