Monday, January 16, 2012 6:17 PM, CST
I did not realize it had been so long since I have updated; there has been a lot going on lately!
Zackary had an amazing Christmas and we were all very happy to see a lot of family that we don’t get to be around very often! We were bragging about how much more awake Zackary has been lately, so of course he had to make us look like liars J . He decided to sleep the whole time we were around anyone, but would wake up in the car or as soon as we got home. But he did wake up to welcome in the New Year with us. He got up and stayed awake just long enough to watch the ball drop on TV and get some Happy New Year kisses, and then went right back to sleep!
Other than the holidays, we have been busy with lot of “Zackary stuff” lately too.
At one of Zack’s eye exams he was diagnosed with a Cortical Visual Impairment, which the doctor said was likely a result of his seizure activity. Basically the structure of his eyes are good, so he can see, but he can’t process what he sees very well. We don’t know a great deal about what this means yet, but we are learning more as we go. We have been referred to and evaluated by CCVI now, and we will have a Special Instruction teacher coming out to the house each week to help us understand and work on his vision. We have also been able to increase our therapy through First Steps to having his PT come once a week now and we FINALLY got the approval for OT to come twice a month also.
We also go to an OT at Children’s Mercy every couple weeks to do feeding evaluations and other OT type stuff. We added thickener to his formula to help his coughing and raspiness after eating, and it has worked like a charm so far! We are working on getting a special chair for Zackary to sit in while he takes his bottles since he’s getting so big and needs to be at a certain angle. She has also helped us get in touch with the right people for a new car seat and stroller options.
We finally met with a Genetic counselor about Zackary’s condition and also what the possible recurrence rate might be. We learned that there are only about a handful or two documented cases of children who have the same genetic mutation as Zackary does, so needless to say, there is not a lot about it that they know just yet. They did tell us that because of the limited number of children reported with the STXBP1 mutation, they do not think that it is very likely to occur again, which made us feel better.
Things with our little man have been a little busy, but he has been doing very well for the most part. He has been showing us more and more of his gummy smiles and has been working really well on his head control! We have not noticed much of an increase in recognizable seizures, and we have even been able to cut the dose of one of his last two seizure meds in half. Sometimes he makes us wonder if there are some seizures going on that we aren’t sure about, so there may be an EEG in the near future. Either way, we are reminded daily of how far Zackary has come in the last few months, and for that we are counting our blessings! We finished 2011 out on a positive note, so here's to a 2012 full of even more hope and miracles!
Zackary had an amazing Christmas and we were all very happy to see a lot of family that we don’t get to be around very often! We were bragging about how much more awake Zackary has been lately, so of course he had to make us look like liars J . He decided to sleep the whole time we were around anyone, but would wake up in the car or as soon as we got home. But he did wake up to welcome in the New Year with us. He got up and stayed awake just long enough to watch the ball drop on TV and get some Happy New Year kisses, and then went right back to sleep!
Other than the holidays, we have been busy with lot of “Zackary stuff” lately too.
At one of Zack’s eye exams he was diagnosed with a Cortical Visual Impairment, which the doctor said was likely a result of his seizure activity. Basically the structure of his eyes are good, so he can see, but he can’t process what he sees very well. We don’t know a great deal about what this means yet, but we are learning more as we go. We have been referred to and evaluated by CCVI now, and we will have a Special Instruction teacher coming out to the house each week to help us understand and work on his vision. We have also been able to increase our therapy through First Steps to having his PT come once a week now and we FINALLY got the approval for OT to come twice a month also.
We also go to an OT at Children’s Mercy every couple weeks to do feeding evaluations and other OT type stuff. We added thickener to his formula to help his coughing and raspiness after eating, and it has worked like a charm so far! We are working on getting a special chair for Zackary to sit in while he takes his bottles since he’s getting so big and needs to be at a certain angle. She has also helped us get in touch with the right people for a new car seat and stroller options.
We finally met with a Genetic counselor about Zackary’s condition and also what the possible recurrence rate might be. We learned that there are only about a handful or two documented cases of children who have the same genetic mutation as Zackary does, so needless to say, there is not a lot about it that they know just yet. They did tell us that because of the limited number of children reported with the STXBP1 mutation, they do not think that it is very likely to occur again, which made us feel better.
Things with our little man have been a little busy, but he has been doing very well for the most part. He has been showing us more and more of his gummy smiles and has been working really well on his head control! We have not noticed much of an increase in recognizable seizures, and we have even been able to cut the dose of one of his last two seizure meds in half. Sometimes he makes us wonder if there are some seizures going on that we aren’t sure about, so there may be an EEG in the near future. Either way, we are reminded daily of how far Zackary has come in the last few months, and for that we are counting our blessings! We finished 2011 out on a positive note, so here's to a 2012 full of even more hope and miracles!
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