Monday, January 5, 2009

Update

Mike called back, and said that the lady from ECI came, and they evaluated Jude. It seems that when someone comes to see us, or Jude they always come a bit unprepared. Mike said she was a very nice woman, but that she didn't have any idea the extent of Jude's case. They went through all of his diagnoses, what he can do, the effects of the medication, and the seizures. By the end of their session her tone was "Jude will qualify without any doubt, and free if need be!". It's great to hear, but it's sad that he qualifies because his abnormalities are so great. I don't think ECI is that difficult to get into (I am not sure), but it sounds like she was still pretty taken back by Jude's information :(. I am hoping with early intervention though Jude can have some sort of learning capabilities. I believe they only come out once a month, but it's help so that's nice. I am hoping to still find him more therapy through the Cooks network once we visit the doctor at the end of January.

I have done a lot of research lately on pediatric stroke awareness. We have been told by the doctors that they are "pretty sure" Jude had a stroke. They say this because they are able to see "old" dark blood on both sides of his brain. This indicates a prior hemorrhage, which the original neurologist we saw believes was ruptured vessels. His explanation was that their little blood vessels are easily "fryable" because they are so fragile. It sounds morbid, but it was a really good explanation. Sometimes babies can overcome this without any issues, but sometimes we have Jude's circumstance. Anyway, the point is that there needs to be more research into infant strokes, and bleeds in the brain. There has been an indulgence of research into adult strokes, but children have not received the same amount of research. There may not be much they could do for Jude, but we will keep faith that his brain will rewire in some way. Although, maybe another child could benefit from the research, the stimulation of other non affected part of the brain, or electrical therapy. So I am now on a new campaign, and I plan to participate in the walk a thon for pediatric stroke awareness. It seems they make a ribbon for everything, and this is the PSA ribbon and their colors are Blue/purple.

Image and video hosting by TinyPic

I am also ever more convinced that with our documentation, notes, films, and more we could help a doctor performing research on infant strokes. Jude's first MRI was done at 19 weeks in utero. I have full lab work on myself, him, sonograms, MRI's, and more. I am also even more convinced that my platelet issue had something to do with his issue. Since this started so early I really think Jude can intervene and help some other baby. He may just help another couple deciding on what to do, or he may give someone hope eventually. We can hope for the later ;)

6 comments:

Mara said...

We are working with ECI too ! I hope they can help ! they can get you OT and PT and tell them to put you on the list for respit care !!! hugs

~The~Wacky~Whittons~ said...

I am going to take your PSA ribbon and post it on my blog if that is okay? I have been reading your blog for a while now and you are such a blessed family! My prayers are always with you, Mike, Em and Jude.

Cjengo said...

Of course!!!!!!

Nicole James said...

My son had a stroke in utero. Don't let ANYONE tell you what your sweet babe will or will not do! Understand? And I mean this...your boy will surprise you, just watch!

Check out www.CHASA.org. It is my lifeline, and you will love it there!

Thanks, and what a cute little boy you have!!!

XOXO

Nicole
nicolejames1@verizon.net

Nicole James said...

Oh, BTW, my son is in 6th grade, and you would never know he had a stroke. Look into HBOT as well. It's expensive, but right now is when you want to do it. It is expensive, yes, but have an online fundraiser if necessary! Really, I just want to hug you for hours and ensure you that everything will be okay. PROMISE. :)

XOXO

Nicole

Holly Mackerel said...

Hey, our family would love to get involved in the PSA thing with you in any way possible. Keep me posted! ANd I miss you!