I have been so excited about the progress we've made with the GI issues that I've neglected the non-progress we've made with her neck. Here is a recap of all the recent doctor opinions:
Functional Neurologist (Natural Medicine doctor) - He thinks Maggie has a condition called dystonia, which is a neurological condition in which muscles are contorted. Obviously, this is just one opinion and I'm not sure I agree with it. I asked about this last fall at Scottish Rite and the response from one doctor was "dystonia rarely happens in newborns and never in their necks." But this doctor is convinced this is what she has and, even though dystonia is permanent, thinks we can use neurological exercises to retrain or manipulate the brain to hold her head up.
Neurosurgeon - He wants to do another MRI to check for something that would affect her vision, thus her balance. I asked him about dystonia and he doesn't think it's a crazy idea at all. He's going to talk to some other colleagues around the country that specialize in movement disorders like that. Her MRI is scheduled in September.
ENT- Because Maggie has had fluid in her ears several times and has mild hearing loss, the ENT doctor wants to go ahead and put tubes in.The surgery is scheduled for Tuesday. Normally I don't think doctors would be this aggressive with their treatment for fluid, but she thinks we need to do everything possible to help with Maggie's equilibrium. If Maggie has a lot of fluid that can cause dizziness when she tries to hold her head up, and ear tubes help drain that fluid. As she said, we want to do anything we can do to help Maggie's vestibular system get in balance. She is also going to do a more accurate hearing test while under anesthesia (don't ask me how they check hearing while you're asleep but they can!).
Geneticist- I handed her a list of genetic disorders that could cause some type of dystonia or muscle issues. disorders. She discounted most of them, but she did draw Maggie's blood to test for a type of dystonia that's genetic. She also gave me some info on dystonia studies going on around the country that could lead to some expert doctors. This doctor doesn't think it Maggie has dystonia but thinks it's worth checking out. She also ordered a muscle biopsy during her ear tube surgery on Tuesday since Maggie has never had one. (doctors don't like to do muscle biopsies on babies unless absolutely necessary but at this point I think it's time). The biopsy would rule out any dystrophies or other muscle disorders. She doesn't think Maggie has any for the mere fact that Maggie only has muscle weakness in one area (her neck) and it's been consistent since birth. But we're testing to rule everything out.
Therapy - We had a new team of therapists come to our house to evaluate Maggie a few weeks ago (we are always seeking second opinions!). One of the therapists called me afterward and said that she was very concerned that Maggie was stressed out. In fact, she said she had never seen a baby so stressed. This was a little offensive to me as a mother. Nonetheless, I listened intently as she recommended that we cease all therapies for a month and stop all stretching at home. She said that we are not making huge progress right now anyway, and a month could just give her a little break.
In the past I've had other moms of specials needs children say to me, "You'll get to the point where you don't need to do therapy five times a week because it's just too much for the whole family, including the child." I knew we would get to that point, but thought it would be after we figured out what her diagnosis was and how we were going to to treat it effectively.
So it scared me to take a month off. A month of precious time. But after much thought, Justin and I decided that it would be a good idea for Maggie and for her big sister. Though convenient, it's very intrusive for Mary Lawrence to have someone come into her space four times a week and take over the den floor and mess with her baby sister. I can't count the number of times have I had to quiet Mary Lawrence as she screamed at the therapists, "Stop hurting my sister!" Besides, Mary Lawrence has been showing signs of stress, too. Those of you who have followed the blog remember how she deals with stress:).
I did like these therapists, though. And one of the things I am praying for is that they can help us get a brace made for Maggie to wear during the day. All the torture devices made for her so far don't allow for her to move and crawl around. (And it's more important for her to develop normally with a tilted neck than force her in a half-body brace where she can't move with a straight neck.) But Maggie's brain definitely needs to be retrained to know what is "normal" and the only way that will happen is if someone can make a daytime brace orcollar that will hold hear head straight and let her move around. (Any engineers out there up for a challenge?)
Funny that I have been trying to "make" her some kind of contraption for months now. I'd go to JoAnn's, buy some foamy materials and try to put together something. But anything I make she'll just rips off. Recently I asked my friend who's in the design business for some foam rubber from an upholsterer.I am going to cut out something like a collar, and just see if it will help at all!
The good news is these therapists have an orthotics person who may be able to help. Please pray can for this if you can. I know Maggie is uncomfortable tilted all of the time. And the older she gets, the harder this habit is going to break (if it's a habit at all, depending on how the theories I mentioned in the beginning pan out)
The therapist also said that we are doing so many therapists - OT, PT, ST, Cranial, Chiropractor, and Functional Neurologist - that it's hard to know what's really working and what could be negating the impact of another. They suggested that we only do one at a time to see what's really working. it was a compelling argument for sure. And Justin and I are still pondering what to do exactly. I feel like we haven't given the chiropractor enough time to do his job, and same for the other guy. I want fast results, but maybe we are going about it all wrong. Oh, Lord, how we need your guidance and help!
Thank you for praying for Maggie's proceduers go well on Tuesday and that she does okay under anethesia.
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