Thursday, May 16, 2013
some more photos of Dallas growing up
5.16.2013
Currently Dallas is walking doing well. However, since she has little and very weak core muscles she walks with her belly sticking out. Her back is very arched and her belly muscles are stretched so they unable to be used much. She's got brand now braces that have a wedge on the heel that makes her lean forward so that her knees are not hyperextended. The PT thought that caused a lot of the problem with her walking like that. I have noticed these new braces are a little harder for her to walk in. The wants to walk with her knees like that but these braces won't allow it and so it's taking time for her to get used to these new ones. I will post a picture of them. they go all the way up to her knee but I got to shop for some cute kicks to go with the braces. The orthotics specialist that made these braces say they can order shoes to go with them through a company called "keeping pace" they make wider shoes but they run about $50. So I went to journeys for kids and looked at DC Shoe company, Vans and ended up with Osisris shoes. All skate shoes, but they tend to run wider than other shoes and fit well over the braces. The wedge on the back made it a lot harder to find a shoe that fit but I found one with a high top so her braces wouldn't fall out the the shoes as easy upon walking.
her cute new braces, the wedges are made of cork they are a little hard to see
these are the osiris' her braces fit right inside
Her weak muscles also create another problem. Mouth weakness. She has a very hard time talking. She can't pucker her lips so all those sounds are very hard for her to create. She is in speech therapy to help her talk. Being almost 3 years and hardly saying any words or intelligible words is a bit frustrating. We have a lot of communication frustration. Sign works really well and if classes are available for that go for it!!! However, she prefers to talk I just can't understand more than half of what she's saying and we only know a few signs. She loves the therapist they play games and practice sounds, name pictures she has a ball. They also teach me how to teach her so I have a little homework to do every day but she's making progress hope we can get her talking by kindergarten!!
She's on disability medicaid and have some insurance through her dad's work that cover the speech therapy. With all the appointments we have we are sooo grateful for the disability medicaid. There is no way we could afford all the Dr's bills. She stills sees specailists, therapist's of all sorts several times a month and I don't think that will slow down anytime soon.
Her weak muscles also create another problem. Mouth weakness. She has a very hard time talking. She can't pucker her lips so all those sounds are very hard for her to create. She is in speech therapy to help her talk. Being almost 3 years and hardly saying any words or intelligible words is a bit frustrating. We have a lot of communication frustration. Sign works really well and if classes are available for that go for it!!! However, she prefers to talk I just can't understand more than half of what she's saying and we only know a few signs. She loves the therapist they play games and practice sounds, name pictures she has a ball. They also teach me how to teach her so I have a little homework to do every day but she's making progress hope we can get her talking by kindergarten!!
She's on disability medicaid and have some insurance through her dad's work that cover the speech therapy. With all the appointments we have we are sooo grateful for the disability medicaid. There is no way we could afford all the Dr's bills. She stills sees specailists, therapist's of all sorts several times a month and I don't think that will slow down anytime soon.
Standing and Walking Hooray!!
We stayed with her "papa" in September before moving up to Idaho this is when she started to do more standing she wouldn't stand on her own but she got on her feet and while being stabilized by holding on to something for support she would and could stand. We had a walker provided by Early Intervention brought in to try and encourage her to walk. There were a few times we would see her stand all by herself and you could see it in her face her debate whether to take a few steps or not. We were about to see her a few times take several steps without any support it was sooo exciting!!!
We got her in the walker at first she absolutely hated it and would have nothing to do with it. It is one where she drags the walker behind her instead of pushing it forward. It worked out quite well when she got the hang of it. We had to coax her with various items to get her to use it only then she would walk about 2-3 steps using it before ditching it and revert to crawling. We would take her outside and she would walk on the sidewalk a few times, looking at the flowers was a great incentive. When we got up to idaho we found an identical one on Ebay and had it shipped to us. It was about $30 was all. She didn't use it a whole lot it just ended up being pushed to the side. The other kids, her cousins, had fun with it which encouraged her on some occassions. We tried to be diligent and get her in it and have everyone in the house just praise and praise her. She used it more and more doing a few more steps finding linoleum is great to drag it on. One day we got home from running errands and she got inside of the walker and started cruising all the around the house....everywhere doing circles in the kitchen absolutely loving it. I think she got fed up with not being about to get anywhere fast and the lack of independence having to hold onto furniture to walk. The walker hasn't been put down since.
Then the walking came. Another afternoon I had put her braces and ugly shoes on after not wearing them for several weeks and we again came home from running errands and i set her down on her feet. She stood for a little bit and then took off walking. No assistance from furniture no walker just all on her own. This was late march 2013. My jaw dropped. I got out my cell phone and started recording thinking I've got to send this to everyone no one will believe it. So i posted it on facebook so all her distant family could see it. I was sooo excited for her I shed a few tears and praised and praised her. She was so excited she had the confidence to walk all by herself!!!
Now whenever we go out she'll walk on her own but I insist on holding her hand to give her support so she doesn't completely wear herself out. Early intervention insists on her still using the walker so she can walk farther longer so she won't fatigue as fast. I notice when she's really worked out that day she'll take about a 4 hour or so nap just to re-couperate and then she'll be ready for sleep at night about 3 hours later. Otherwise her naps are around 2 hours. Her physical therapist mentioned that overworking her muscles may actually be breaking them down and once they break down they don't come back. I just am not sure what to do the fact that she knows she can walk on her own makes her not want to walk with a walker. So its a win/lose.
We got her in the walker at first she absolutely hated it and would have nothing to do with it. It is one where she drags the walker behind her instead of pushing it forward. It worked out quite well when she got the hang of it. We had to coax her with various items to get her to use it only then she would walk about 2-3 steps using it before ditching it and revert to crawling. We would take her outside and she would walk on the sidewalk a few times, looking at the flowers was a great incentive. When we got up to idaho we found an identical one on Ebay and had it shipped to us. It was about $30 was all. She didn't use it a whole lot it just ended up being pushed to the side. The other kids, her cousins, had fun with it which encouraged her on some occassions. We tried to be diligent and get her in it and have everyone in the house just praise and praise her. She used it more and more doing a few more steps finding linoleum is great to drag it on. One day we got home from running errands and she got inside of the walker and started cruising all the around the house....everywhere doing circles in the kitchen absolutely loving it. I think she got fed up with not being about to get anywhere fast and the lack of independence having to hold onto furniture to walk. The walker hasn't been put down since.
Then the walking came. Another afternoon I had put her braces and ugly shoes on after not wearing them for several weeks and we again came home from running errands and i set her down on her feet. She stood for a little bit and then took off walking. No assistance from furniture no walker just all on her own. This was late march 2013. My jaw dropped. I got out my cell phone and started recording thinking I've got to send this to everyone no one will believe it. So i posted it on facebook so all her distant family could see it. I was sooo excited for her I shed a few tears and praised and praised her. She was so excited she had the confidence to walk all by herself!!!
Now whenever we go out she'll walk on her own but I insist on holding her hand to give her support so she doesn't completely wear herself out. Early intervention insists on her still using the walker so she can walk farther longer so she won't fatigue as fast. I notice when she's really worked out that day she'll take about a 4 hour or so nap just to re-couperate and then she'll be ready for sleep at night about 3 hours later. Otherwise her naps are around 2 hours. Her physical therapist mentioned that overworking her muscles may actually be breaking them down and once they break down they don't come back. I just am not sure what to do the fact that she knows she can walk on her own makes her not want to walk with a walker. So its a win/lose.
Dallas' new found hearing loss
We've now moved up to Nampa Idaho and have been quite busy soooo much has changed and happened!!
In December we took her to an ENT and they put tubes in her ears to help all the fluid drain out. They repeaeted a hearing test on her and she failed again in her right ear. We had to take her in to do another ABR which is done under sedation it took her surprisingly about 3 hours to full sedate and fall asleep. They found just mild hearing loss so in her right ear everything sounds like a whisper; her left ear is just fine....thank heavens!! We got her a hearing aid and has been wearing that since mid-march 2013. I am not sure if hearing loss coordinates with muscluar dystrophy or not some say yes other say unkown.
In December we took her to an ENT and they put tubes in her ears to help all the fluid drain out. They repeaeted a hearing test on her and she failed again in her right ear. We had to take her in to do another ABR which is done under sedation it took her surprisingly about 3 hours to full sedate and fall asleep. They found just mild hearing loss so in her right ear everything sounds like a whisper; her left ear is just fine....thank heavens!! We got her a hearing aid and has been wearing that since mid-march 2013. I am not sure if hearing loss coordinates with muscluar dystrophy or not some say yes other say unkown.
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