A few days ago I was on the phone with a dear friend. She began to tell me a story of being out with friends for dinner the night before. They asked her how Ian was…she said he was doing great…I said really you think so. Well she proceeded to explain to me how she saw it…compared to last year and when he first got sick in July of 2009, he is doing well. Back then he was not able to hold himself up on the sofa, not able to feed himself or give himself a drink from a cup, he could not hold a pencil/pen to write. As she put it, he was a wet noodle. He is now able to hold himself up and sit on the sofa, at times he is able to feed himself (sometimes we will feed him as it can take him hours to feed himself), he can pick up a cup and take a drink. One of his favorite pass times is to write... There are some other things he can do now that he was not able to do back then or when he was at his worse. If you look at him now compared to where he was before July 2009, then no he is not doing great. He is not walking, can’t hold his balance…he is now wheelchair bound (we have gotten him his own set of wheels, Zippy, as he calls it), we have to stand behind him when he is standing to brush his teeth or use the bathroom. I thanked her for her view as I would not have seen it that way….so thank you. If you ask me how Ian is doing, he is doing great….one day at a time and holding his own.
Our next steps…it’s official we are going to see the specialists in Utah. They actually want to see both kids…we will be there for 4 days in and out of the hospital. We are not sure what the trip will hold for us but we do know that Ian needs to have another spinal tap before we go. The reason, they want to be able to compare last years to now…when he had it done last year he was not on any medicine it was just to see if there was a dopamine deficiency. Once these results are in, they will be able to tell what the medicine is doing and making any chances if needed, which we think there will be. As for Becca, we are not sure what they are going to do…reason for her going, we have had an initial test done on her (prolactin level) and it was elevated…what does this mean, we are not sure except there is a possibility she has a dopamine deficiency as well…she does have some other signs as well. At this point they say Becca does not need to have a spinal tap however at some point and time she may…we just have to wait and see. Here is some information on why Utah
The Pediatric Motor Disorders Research Program, under the direction of Dr. Kathryn Swoboda, is focused on a group of disorders characterized predominantly by defects in motor function, with onset in infancy or early childhood, including:
• neuromuscular disorders, including spinal muscular atrophy, congenital myopathies and neuropathies and muscular dystrophy
• neurotransmitter deficiency disorders and childhood onset dystonia
• alternating hemiplegia of childhood.
Academically both kids are doing great....thriving in school.
So we are looking forward to our next steps in our journey…