I through away the book, What to expect the First Years. It will only depress you. You read by 2-4 months your baby should hold her head up, the reflex when you put your baby's feet on your lap she will stand. She won't. She's hypotonic, she doesn't have the strength. She doesn't have the muscle. Part of the disorder is that her muscles don't grow and develop like normal babies. The take much much longer to develop and strengthen. I tried to have her stand on my lap and she would just buckle her knees. I kept asking for months before the diagnoses "when are they supposed to stand?" "isn't she supposed to be holding her head up by now?" She's 5 mo. old and still can't hold her head up. 6mo. old and can't sit, and can't even lay on her belly and hold her head up. She's hates tummy time. She's never like it. I can think of a few reasons why. The first, she can't breath. She was diagnoses with a weak diaphragm....again a muscle. When she's on her belly I think her body weight is just too heavy and it's more difficult to breathe. Second, she has a hard time holding her head up so she can only see what it directly in front of her. Dallas likes to see the whole party, she likes to see what's going on and when she can't it frustrates her and she whines then cries.
Because her lungs....another muscle, are weaker than the average baby her cry is very very quiet. When she was just a newborn you could hardly hear her. In a way it was great for our eardrums but it was a constant reminder of how weak she was. Also, if she was in a distant room, without a baby monitor always near us we would never have heard her crying. Even now when she babbles it's still very quiet. I understand her though because I myself am a very quiet talker. I have to actually concentrated and think about it if I want talk louder. I deal with geriatric patients with my job and they don't always hear so well so sometimes our communications struggle but it helps me so that I can try to learn to raise my voice naturally.
She smiled when most babies smiled but she didn't and still doesn't smile often. I don't know if this is part of her personality or the MMD but I've read that it affects the facial and expression muscles. She doesn't smile wide like normal babies she open her mouth wide as a smile. I'll try and post pictures or videos of this, once I find out how! She's laughed when she was supposed to but not often. She was about 6mo. old when she could finally hold her head up on her own. Otherwise it was very very wobbly. She was about 9 mo. old before she could sit up on her own without back support. When she is on her tummy at the age she is now almost one, she'll last almost a minute before she gets frustrated that she can't move or can't see and begin to whine and cry. I'll even put her in a crawling position and she'll rock back and forth. I can't tell she wants to move she just doesn't know how and she doesn't have the strength in her limbs to hold her up.
We exercise her muscles daily and try to show her ways to get back up after falling over and ways to move around. Her neurologist these congenital babies usually will scoot around to get around versus crawling because its easier and doesn't use as much strength. We just have to be patient with her. Something that take a normal kid a month to learn will take her twice to three times if not more to learn. Or sometimes she'll just pick it up. She's recently been clapping and she'll mimic us. We'll clap and say "yay" when she doesn't something on her own. When she falls over and picks herself up, or reaches for a toy and gets back up without falling over we'll clap and say "yay" or just say it without clapping and she'll start clapping. It took her a weekend to learn what clapping is used for and that clapping and "yay" are associated. I was very proud of her for this. It was just this past weekend she picked up on it.
As for me with adult onset MMD I noticed the first symptoms back in High School. Probably when I was 16 to 17 years old. It could've been early but this is when I remember it the most. During school sometimes my hand would lock around the pencil, or open bottles of water or soda and not being able to get the cap of because my grip wasn't good and then my hand would lock into the circular position for a good 5-10 seconds. I would joke with my friends and call it "the claw" which I conveniently stole from the movie Liar Liar. I noticed all this was abnormal but it wasn't a big deal to me. I just thought it was part of the CMT. My brothers started to open up about it and noticed that it was happening to them also. As time progressed it started to occur more frequently, worse in the winter, and it would lock up for longer amounts of time. When the diagnoses came and we read about it online all the pieces fit. It started with my hands then it moved to my feet. Only once in a while my toes will lock up its kind of a wierd feeling. it feel like a charlie horse is coming but it never does. That's probably one of the great things is that a stretch in the morning of my calves and toes which used to give me charlie horses don't anymore even though it feels like its going to.
I notice little things more and more every day that degenerate in me. It's funny watching me get weaker and watching Dallas get stronger to know that when she's older she may be like me and get weaker. It's kind of sad to thing you slowly get stronger to just get weaker.
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