My heart is breaking for another family. I have followed their blog for a little over a year now...I don't always comment, but there has not been a day that goes by that I don't think about what they are going through. I have been touched by sweet Gavin. Gavin has mitochondrial disease and has been such a fighter. His parents are amazingly strong and are facing the unimaginable today. Please say extra prayers for this precious child and his family. I am just at a loss for words and pray for peace for Gavin and the Owen's family.
gavinowens.blogspot.com
Friday, November 6, 2009
Thursday, November 5, 2009
No more viruses please!
Jackson is doing better! We have had a crazy couple of weeks. He was sick with another virus for 7 days and he was out of school for 5 days. We thought it was H1N1, but he tested negative. He missed Halloween altogether! I was so sad for him, because his class had a party and went trick-or-treating and he totally missed out! We did force him to get into costume just for pictures, but he wasn't too happy about putting on the tiger costume while sick.
We were so worried, because all he did for 6 days straight was sleep all day. However, he has snapped out of it now and getting back to his normal self.
Once he was better, on Tuesday night we had a scare. He climbed up on our dining chair and before we could get to him he jumped off and tried to land but he fell and hit his forehead on the floor. It was so scary and we felt like the worst parents for not getting to him in time. He had this HUGE whelp on his forehead and cried and cried. We called the pediatrician and she recommended us take him to Texas Childrens Emergency room for a Cat Scan to make sure there was no internal bleeding. So poor Jackson had to go the ER with all the swine flu kids and wait from 7pm until 3 am....luckily everything was fine, but it was quite the scare.
On the seizure front...it's better. We are seeing less as we go up on the Keppra. Last week we had his levels checked, they were STILL not to a therapeutic level and I think we are 10 weeks into treatment. Why does it take so long?!?!? Good news we are seeing improvement. However, with being on a high dose of Depakote, high dose of Pheno, and getting to a high dose of Keppra pretty much equals dosed up, sleepy child. We don't like that at all! I can't stand it...it reminds me of the way he was before surgery. So tired all the time! His school even was concerned, so FINALLY his neuro is allowing us to wean the Pheno. Thank goodness! I know we will see a huge difference when he is off that medication. I guess we have to do a slow wean over 2 months as he can have withdrawl symptoms coming off. I just pray everything goes smoothly. Even though we have just started the wean down, he has already had much more energy.
Jackson is also doing well in school. We get daily reports telling us what he did or enjoyed, etc. He is now sitting around the table with all the other kids and stays in his chair when he is supposed to! Since starting school he is almost self feeding with a spoon and fork on his own...he needs very little assistance. He has been feeding himself with his fingers for a long time, but would always throw his spoon when I tried it with him. However, some of our therapists that have worked with Jackson for a very long time, now go to the school to see him. A few have commented that they do not think he is getting enough one-on-one throughout the day. They think he could be more challenged than he is. In the month of October, he has come home with so much art work...(I have 19 pieces of elaborate Fall/Halloween art...a little excessive for 1 month). While I absolutely love the art and think it's good therapy, I just don't want to be paying for a ton of time spent on art work that Jackson may slightly help with...I would rather them work on him holding a crayon and coloring on his own first. Good thing is the school is having a conference day tomorrow so we can go over our expectations and theirs. We will also get a better understanding of how they incorporate his goals into his day. Now I do have to say they are good about addressing his behavioral issues and staying on top of it and making sure we are all consistent with our reactions. We do really think this school is good for him and his teacher is so caring, but we just want to make sure everyone is on the same page. Tomorrow is the parent/teacher conference so I guess we will!
Jackson is still taking more and more steps on his own. Getting more confident in his walking. Cognitively he is doing so much better too. He really understands more and more. He also loves giving high-fives now and playing patty cake.
We were so worried, because all he did for 6 days straight was sleep all day. However, he has snapped out of it now and getting back to his normal self.
Once he was better, on Tuesday night we had a scare. He climbed up on our dining chair and before we could get to him he jumped off and tried to land but he fell and hit his forehead on the floor. It was so scary and we felt like the worst parents for not getting to him in time. He had this HUGE whelp on his forehead and cried and cried. We called the pediatrician and she recommended us take him to Texas Childrens Emergency room for a Cat Scan to make sure there was no internal bleeding. So poor Jackson had to go the ER with all the swine flu kids and wait from 7pm until 3 am....luckily everything was fine, but it was quite the scare.
On the seizure front...it's better. We are seeing less as we go up on the Keppra. Last week we had his levels checked, they were STILL not to a therapeutic level and I think we are 10 weeks into treatment. Why does it take so long?!?!? Good news we are seeing improvement. However, with being on a high dose of Depakote, high dose of Pheno, and getting to a high dose of Keppra pretty much equals dosed up, sleepy child. We don't like that at all! I can't stand it...it reminds me of the way he was before surgery. So tired all the time! His school even was concerned, so FINALLY his neuro is allowing us to wean the Pheno. Thank goodness! I know we will see a huge difference when he is off that medication. I guess we have to do a slow wean over 2 months as he can have withdrawl symptoms coming off. I just pray everything goes smoothly. Even though we have just started the wean down, he has already had much more energy.
Jackson is also doing well in school. We get daily reports telling us what he did or enjoyed, etc. He is now sitting around the table with all the other kids and stays in his chair when he is supposed to! Since starting school he is almost self feeding with a spoon and fork on his own...he needs very little assistance. He has been feeding himself with his fingers for a long time, but would always throw his spoon when I tried it with him. However, some of our therapists that have worked with Jackson for a very long time, now go to the school to see him. A few have commented that they do not think he is getting enough one-on-one throughout the day. They think he could be more challenged than he is. In the month of October, he has come home with so much art work...(I have 19 pieces of elaborate Fall/Halloween art...a little excessive for 1 month). While I absolutely love the art and think it's good therapy, I just don't want to be paying for a ton of time spent on art work that Jackson may slightly help with...I would rather them work on him holding a crayon and coloring on his own first. Good thing is the school is having a conference day tomorrow so we can go over our expectations and theirs. We will also get a better understanding of how they incorporate his goals into his day. Now I do have to say they are good about addressing his behavioral issues and staying on top of it and making sure we are all consistent with our reactions. We do really think this school is good for him and his teacher is so caring, but we just want to make sure everyone is on the same page. Tomorrow is the parent/teacher conference so I guess we will!
Jackson is still taking more and more steps on his own. Getting more confident in his walking. Cognitively he is doing so much better too. He really understands more and more. He also loves giving high-fives now and playing patty cake.
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