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...

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.


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

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

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


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Location:Happy 2nd Birthday!

Surgery update

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

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

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

Love

Lee


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Surgery today!

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.