Tuesday, October 16, 2012

Hope update!

Hope had her 18 month half-birthday on Sunday. I know it's been a while since I've given you an update, so I took some pictures of her during one of her sessions with a therapist today to give you an update with.

Hope is doing very well. She is continuing to make forward progress, although it's slow. She learned to crawl this summer, right around 15 months. Because her muscles are so low-tone, the quality of her crawling is not great. Her legs do the splits more than the should, and she has a hard time lifting her head while crawling to see where she's going. That said, she is a master of figuring out shortcuts for these problems. She will crawl a little ways, then sit up so that she can remember what she was aiming for, go back down on all fours and keep going. She has also mastered this funny little swim-with-her-legs move, which the physical therapist hates. It involves putting her legs in directions they should not be able to go, and pushing with them, so that she really looks like she's swimming with her legs. It's hilarious, unless you're a therapist. Then it's alarming.
She can now pull up on furniture, and is working on her balance on her feet. We are hoping that she walks sooner rather than later, as that will put an end to her swim-crawl, which really is not good for her ligaments and joints. She has not needed any intervention other than therapy to this point to help her mobility. She wears these funny constricting pants (or she's supposed to, but mom is sometimes lax in enforcement) that help keep her legs in the right position while crawling and climbing. In the coming months, though, it looks like she will need little ankle and lower-leg braces to help her walk. Her muscles are just so loose that her ankles kind of fold over on themselves. A brace will help build those muscles up correctly, so that hopefully she would not need braces forever.
Cognitively, she is also doing well. Her receptive language (meaning her ability to understand and respond to us) is very good, almost up to her age-level. She can obey commands, and understand a lot of what she says. Her communication back, though, it severely delayed. It is actually her area of biggest delay, and it has kind of snuck up on us the last few months. We have been so focused on her gross motor skills, that nobody was too concerned about her speech. Now, we're concerned. She does not make any sounds other than grunting. She grunts with a lot of inflection, though, and is able to make her desires known. Our attempts at teaching her signs have been unsuccessful, as well. She was recently evaluated by a speech therapist, and that hour was very informative for me. The part of her brain that's damaged is her cerebellum, and one of the things that is affected is her ability to plan. With gross motor, this means that her brain can't really figure out all the steps needed to crawl--she's had to be taught them and her brain trained to know what's supposed to happen. We think this is what's happening with her speech. She understands us, her hearing is fine, and she can move her mouth and make noise, but somewhere, all the steps to make the sounds come out in the right order, with her breath behind them, at the right time, got lost. It's called a motor-planning deficit, and that explanation really fits with the way she communicates (or doesn't), along with the other problems she's had. In addition, because her motor skills are poor, it will be hard for her to learn to sign. She one sign she has consistently is "bye", where she will wave. We will probably continue to do some signing just as another way for her to understand us (both visual and aural), but don't really expect that she will be able to sign back. All that to say--we will be starting weekly speech therapy in the next few weeks. The therapist will work with her facial muscles and the motor planning to try to get her to speak, and will work with us to figure out alternative means of communication. In addition, when she does learn to speak a little more, there is a high probability that her speech will be a little slurred, simply because her muscles overall are so low-tone.

So that's the quick version. I feel like that is really a lot of bad news, though, and the reality of life with her is that we are all still completely enamored with her. She so stinkin' cute, and she does the funniest things. She will squawk at Rose for taking a toy or getting too close to her personal space. She'll give kisses. She'll wave bye-bye when she wants to be done eating. She plays peek-a-boo. She greets Dad when he walks in the door. When she wakes up in the morning, she spends a few minutes in bed with me, looking at a book. Then Ellie will come in and get her to go play in the school room. Ellie will pick her up, and wait for Hope to pull the door open so they can leave my room. Hope will wave to me as she goes.

We continue to be so thankful for her life. We will face the challenges in the upcoming months with her, and look for solutions, all the time knowing that she is a gift from God to us, in ways we can see now, and in ways we may only know in heaven.

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