So the big news of the day is that we have gotten word back from his Neurologist regarding all the testing we had done in Birmingham. Allison talked to the Neuro nurse and all of the test came back normal. Neuro transmitters are fine and there were no genetic abnormalities. What awesome news and we give God all the praise for this. I guess the only problem is that we STILL dont know why he is having seizures. To my knowledge, we have just about ruled out every possibility there is. We are anxious to talk to the Doctor herself to see what she thinks could be the reason now.
We were instructed to take him off of the Keppra, which by the way, is the only med he enjoys taking. He loves that stuff and drinks it down like candy. We are also supposed to go back to Huntsville for another EEG April 21st. This is after he has been on Topamax 50mg morning and night for one week. Thank goodness this wont be another one of those 24 hour deals. I don't know if we can handle another one of those. Instead we will go in, get him all hooked up, wait for him to fall asleep ( yeah right) and after he wakes us they will take the leads off and send us home.
Speaking of sleep, he did take over a two hour nap today while at Grandmom's house. Slept all by himself without waking. That is a VERY VERY long nap for Dawson. We were glad he finally got to take himself a decent nap.
Today has been a little worse as far as seizures go. Especially this evening. He has taken several of his little short 10-15 min naps and has had seizures after waking from each one of them. I know I have said it before, but I have really grown weary of watching my son have these seizures. Without a doubt I KNOW God is at work here but some days the Father in me just wants these things to stop. The up side of this is that we have gotten to witness miracles in Dawson's life. Watching Dawson fight through these seizures, and despite the diagnosis, watching him excel and grow has been the most inspiring thing I think I have ever seen.
We praise God for the great things he has done in our lives and look forward to whatever tomorrow brings. I have no idea how people with no faith cope with something like this. Our faith is all that we have and what more could we possibly need.
We still remain overwhelmed by the amount of people praying for Dawson. We wish there was a way to put into words how much we appreciate it but there is just no way to do it. We do thank you for your prayers.
We love you
Jeff and Allison
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3 comments:
What great news that is!!! That's what we've all been praying for. You definitely have somthing to celebrate. I guess it's mind-boggling (?) to everyone as to WHY he is having the seizures. But, I guess it's one of those cases where no (bad) news is good news?! Right?
You guys hang in there and keep doing the wonderful job that you are doing!!
We love you!
I don't want to discourage you, because the news you just got is very positive news and from everything you've mentioned about Dawson, I don't think he has a genetic disorder causing his spasms (a genetic diagnosis is usually not a good thing because while they can treat the symptoms, there's generally nothing they can do to "cure" it). But we asked Reagan's doctor the same thing...she's already been tested for everything...it seems like just about everything has already been ruled out! He informed us that there are more tests (genetic and metabolic) than Reagan has blood! And those are just the syndromes/diseases that they have identified...there are millions of genetic mutations yet to be discovered and if that's what is responsible for all of Reagan's problems, then she may always remain undiagnosed!! Genetics is still in its infancy...(here's an analogy the geneticist gave us) imagine an entire set of encyclopedias, there are many books, each book is filled with paragraphs, and within each paragraph there are many words, and in each word there are letters. It's possible that the genetic mutation is just one wrong letter within the entire set of encyclopedias...and that one wrong letter is causing all of the problems!! Imagine trying to find that one wrong letter...it's impossible (unfortunately there is no spell check for your DNA). So they try to test for 1)diseases that are treatable and 2)mutations that have already been identified and associated with specific diseases related to the issues your child is having. At this point (unfortunately), that's the best they can do.
Dawson looks great in the vid! So happy & curious! Love it!
We met w/our Geneticist this week & she said that you can tell a lot about the baby just from that *spark* in their eyes...so I think that's exciting & hopeful!
All the best to you guys...
...danielle
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