Thursday, September 30, 2010


Well I haven't updated on Maggie in a while because I've been so discouraged this past week about her progress, particularly her torticollis. I have been beating myself up lately for not doing her stretching and strengthening exercises more often. But the more I've thought about it, the more I have come to believe (in my own humble opinion) that a normal child would have shown a lot more improvement after six months of intensive therapy like Maggie's had. Which is why I've convinced myself that her torticollis could is probably more related to how she was in the womb with no fluid. (Perhaps her muscle didn't grow properly as she could not move around much? - I mean, it makes sense to me!). I am just praying we get approved to go to Scottish Rite so we can get a better opinion on that. Perhaps she will need surgery sooner than we think. And the Physical Therapist recently mentioned using Botox as well on her neck muscles to help loosen them up (I know it's the opposite of what you'd think Botox would do!)

The truth is, what we are dealing with is not overwhelmingly serious, but we still have to deal with it. And the sheer amount of time needed to devote to her issues is overwhelming to me. On top of that, in the past month we have gotten a new Occupational Therapist, Speech Therapist and Dietitian. It was very frustrating to deal with that because I spent about a month earlier in the summer figuring out our "Fall" schedule - managing school, Maggie's appointments, Mary Lawrence's dance, doctors visits, and so on. But, lo and behold, that was a big waste of time! In addition to her Occupational Therapist leaving Baylor, insurance issues have forced us to find a new Speech therapist.

I had a poor attitude about all this change at first - I mean, I worked so hard to get the perfect therapists for Maggie at the perfect times! But you know what, it all ended up being okay. Having fresh sets of eyes looking at all these issues has really helped. And these new people are truly motivated and excited to help Maggie. Sure I was discouraged when her new Occupational Therapist told me that in addition to the original issue of torticollis, I needed to start thinking about the problems it is causing in other parts of her body. For example, since she can't sit up yet (because of her torticollis and weak muscle tone) she is not learning how to do the pincer grasp (picking up cheerios). Another issue is her eyes muscles - they are going to be very weak on one side since she is always looking to the left and that could affect her vision later on in life (and I had two eye surgeries as a child for similar reasons so that makes her more at risk). I just don't want to think about stuff like that right now!

But at the same time I'm glad she is aware of these things and helping me to stay on top of working with her. She seems to think outside the box, which I like. She is going to help make a special chair for Maggie that will allow her to sit up while hopefully holding up her neck. She also suggested using a simple Ace bandage to hold down her right shoulder so she can more easily look to the right.

The new Speech Therapist (feeding therapist) I found comes to our house, which is nice, and seems really motivated to help Maggie work her way up to eating more solids. And she is going to work more closely with our new dietician at Children's (who I also love!). We met with the dietician on Tuesday and I was very discouraged to hear that Maggie had only gained 4-5 ounces since her surgery. So she increased her daily intake a lot. Which I am happy about it because I've been thinking she needs more for a long time. But now we are battling major projectile vomiting from the increased volume - ugh! So we are trying to balance feeding her at a slow enough rate to avoid spit up, but not too slow where we never have time to sit her up and do her exercises. Ah, if we were only dealing with one issue it would be so much easier...

So that's about all for now. Sorry for the listing of problems - but I also know people have been praying for us and want to know how Bunny is doing. (Yeah I've gotten in the habit of calling her Bunny (like she needs another nickname!). She's just so cute and little like a baby bunny and for some reason I sing "Little Bunny Foo Foo" to her all of the time, which is probably not a good idea since it is kind of a violent song for little babies!

No comments:

Post a Comment