September 21, 2010
This weekend was fair, we saw some progress in Ian, and tremors were not as bad. He was able to do a little bit of self feeding himself. Wanted to sit and play ball, one of his current favorite things to do in the house…sit on the floor and roll his little blue ball around. On Friday, I spoke with Dr. Raymond and we kept Ian’s medicine at 1.5 teaspoons for his morning does and 1 teaspoon for his other 3 doses. We did not restart the KUVAN. I spoke with Dr. Raymond yesterday morning, Monday, to let him know we saw a little bit of improvement over the weekend. Ian did some self feeding. He tried to walk holding my hands but was not able too, his feet were all over the place and you could tell how hard he was working to try to get them to move the right way. He was able to play balloon with one of our friends and could get his arms to hit it.
Late yesterday I received an email from his PT at school and she was pleased with his of his spirit and determination. She stated that she knows he always puts forth his greatest effort. She said he appeared much less fatigued and very "playful"/happy yesterday then he was last Thursday when she saw him. He was able to hold his head up well when he was sitting and he had improved trunk control in sitting in the wheelchair. We did attempt ambulation in the PT/OT room with my assist and then with the assist of the rolling walker, and both ways remained difficult for him. His knee extensors continue to remain weak, and his legs easily buckled on him when attempting to weight shift to bring a foot forward. We therefore worked a lot on sitting trunk control and head/neck control (while sitting on the large swing and lying on his tummy and propped on his elbows). We had fun while working very hard! He also sat in the bean bag chair on the floor (to provide some support) while reaching for and catching different balls. He was trying to assist with all of his functional care (putting his seat belt on/off and locking and unlocking the wheelchair brakes), which implies that his stamina is much greater than it had been last Thursday.
Slowly we are making gains but we do know that for every gain there is the potential of setbacks…one day and one step at a time.
Hope for tomorrow begins today.
Late yesterday I received an email from his PT at school and she was pleased with his of his spirit and determination. She stated that she knows he always puts forth his greatest effort. She said he appeared much less fatigued and very "playful"/happy yesterday then he was last Thursday when she saw him. He was able to hold his head up well when he was sitting and he had improved trunk control in sitting in the wheelchair. We did attempt ambulation in the PT/OT room with my assist and then with the assist of the rolling walker, and both ways remained difficult for him. His knee extensors continue to remain weak, and his legs easily buckled on him when attempting to weight shift to bring a foot forward. We therefore worked a lot on sitting trunk control and head/neck control (while sitting on the large swing and lying on his tummy and propped on his elbows). We had fun while working very hard! He also sat in the bean bag chair on the floor (to provide some support) while reaching for and catching different balls. He was trying to assist with all of his functional care (putting his seat belt on/off and locking and unlocking the wheelchair brakes), which implies that his stamina is much greater than it had been last Thursday.
Slowly we are making gains but we do know that for every gain there is the potential of setbacks…one day and one step at a time.
Hope for tomorrow begins today.
Hi Marcie, I'm just getting caught up on your last couple posts. You guys are so inspiring and I know the feeling of two steps forward, twelve steps back! All good thoughts and support to you in this new year! xo
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