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....