Diary Entry - 4th January 2007
Asher had his first appointment with his Physio today to see how well he is progressing. The prognoses wasnt that good but all we can do is keep helping him with his excercises. She observed him and played with Ash for an hour. She said that he had improved slightly but was still weak. She said that he seems to have muscle weakness as well as low tone and she has written a letter to his pediatrician saying that further investigation is needed. She suggested that they do a muscle biopsy to see if it shows up anything.
Anyway we see the pediatrician on the 6th of February so I'll be able to ask him some questions and maybe they can give us some answers after testing. Ash also starts hydrotherapy swimming at The Childrens Hospital on the 31st of January.
I asked the physio when she thought he would walk and if she thought he would ever walk and she couldnt answer that. I think she couldnt because she cant say unless they know for sure what is wrong with his muscles. She did say that whatever the outcome the treatment would remain the same. So for now all we can do is help strengthen his muscles.
I mentioned about him standing on his toes and also that his ankles roll in. She said at this stage she wasnt to concerned about standing on his toes as long as he was standing and cruising furniture. Shes not entirely sure why he stands on his toes. Its a bit strange because when he is on his toes he's standing up straight but when he is on flat feet his ankles roll inwards and his bum sticks out and he leans over. She said both the toes and the ankles can be converted later on with splints. The physio has also leant him a brace which goes over both his legs like a mermaid. It gives him resistance and also helps him balance etc..
There is so much stuff to remember it seems things just continue to become more complex. Im feeling a bit sad and upset about the whole situation but I have hope that things will turn out positive in the end. Its just hard not knowing and also having a baby due any week now. I dont want ash to miss out on the time he needs because of it. I wish I could help him more or he could tell me how he is feeling. Im also sick of people telling me he's gonna be okay when I know he's not okay.
Diary Entry - 6th February 2007
Ash saw the pediatrician again today, Dr M. He is such a good Dr, I am so glad that Ash has him for a pediatrician.
Anyway he said that because Ash was progressing, although slowly, it was a good thing and that more tests were not yet needed. He said that the physio was good but he was better and that Ash was doing well. He said that the other tests were invasive and in order to do that it requires a general anesthetic and so that wasnt a good option and one that wasnt needed as yet.
He said Ashers ankles roll because he is floppy and that this winter they would put him in ankle boots to bring his feet down. Usually they dont put them in shoes until they have been walking for 3mths but in his case he could start wearing them sooner to support his ankles. He also said that Ash is intellegent and reaching his other milestones even if it was a bit slow. He said that Hypotonia is fairly common and because Ash has benign hypotonia that its just the pick of the draw when in comes to having it.
Ashy
