Wednesday, May 7, 2008

EEG results

It totally slipped my mind to post Brooklyn's EEG results for those of you who read my blog!

We saw my favorite Neuro last Wednesday *inserts sarcasm* to discuss her 24 hour EEG results. The visit was short and I still dislike that place with a passion. She read a bunch of medical stuff off which made no sense at all. She left the room to go talk to the Dr. and when she returned she said they looked at her MRI images again and her scan was consistent with her brain abnormalities. They said she has Static Encephalopathy which means permanent and unchanging brain damage. They did not detect any seizures so that is good news. It's confusing to me though, when you Google the term it basically means Cerebral Palsy which is what I thought she had in the beginning but that Dr. told me she did not have it. Now that is the diagnosis based on her EEG? I just don't get it. I'm anxious to speak with the Neuro in Boston to see what she says. She also said she felt strongly that she did have a form of Rett's Syndrome. We did test for it and it was normal but there are so many variations of it that often times the tests do come back normal even though they do have Rett's. I've been feeling down about hearing once again that my daughter is brain damaged. After talking with her PT about it on Friday she said "static" is actually a good thing, meaning she won't regress or get any worse. She said the brain is an amazing thing and that she has seen many cases where the brain overcomes areas where it is compromised and that B has made such tremendous progress already in areas where she was behind. She said it was good news rather than bad. Easy for her to say huh?

Also, her PT told me on Friday that she wanted to hold off on getting braces for her legs, in fact she said she may not need them at all. We've been working hard every day at standing and she is needing less and less support from me and seems to not try and bounce like she used to. She will still require a lift in her shoe though once I get out and get her a pair. I pray she walks someday though I know it's probably years away. She's almost 1 ½ and still isn't crawling. Oh, and that is another thing the PT mentioned was getting a crawling assistant. Not sure what sort of equipment that is but I'm sure it supports her body weight as someone physically moves her arms in a forward motion. Moving her arms is the only thing stopping her from crawling. She is strong enough cause she is up on her knees all the time, it's just figuring out what she needs to do with her arms.

We have a meeting with her team of therapists in the 13th and I've been pushing to have therapeutic riding added to her therapy plan. Her PT agreed that it is highly beneficial and that it helps children improve their skills in all areas, PT, speech, motor and trunk control etc. I really would love to see her be able to do that! Flying Changes is located right in Topsham too so that would be perfect for us!

She will begin speech therapy again and thankfully she will be coming to the house. We meet this morning at 9:15. Between her and Devin we have 6 sessions a week! Crazy, crazy, crazy!


AnnD said...

I hope that things keep getting ruled out in order to solidify a diagnosis. I also hope that she does nothing but continue to make gains! That person was right about brain injuries and how many people will overcome brain problems and trauma. There is just so much we don't know about the brain and how it works! We love you B!

Kitty said...

I think riding therapy would be awesome! It really sounds liek the PT is giving you some great advice-thank god for her.I hope you don't have to return to this neuro again! I just love B and would love to see some more pictures *hint hint*

Karen of Sillymonkeez said...

She can't combine the two sessions into one long one? That's what they do for the twins at EI.

Let us know how the speech therapy goes today.

Rebecca said...

Trying to figure medical stuff out is the pits. Hang in there...