Monday, June 16, 2008

Let me try to catch you up . . .

Well, in my head I have been writing. But the reality is that I have not. Let's start with what I thought would be a great title "The tick, the hives and the neurologist" A bit like a badly written teen horror flick, but in reality another week in our lives. The Tuesday after my last entry I found a tick behind Kath's ear while giving her a bath. Before Roger parked his car I was yelling for him to come up and get the tick out. :) Brave mamma. Then that Wed and Thursday I woke up and began having hives. Not really bad ones, just enough for me to say, "Hey, why am I suddenly scratching my skin off? Ohhhhh . . ." Then Kath had her follow up neurologist appointment. It began with the doctor coming to call Kath (love that he does it himself!) and not realizing which one was his patient (Alex or Kath). He watched her play and was amazed at her progress. I asked him about 1000 questions and he patiently answered them all--even when the nurse came in and began to hustle around to rush him "There are more patients." He maintained focus on Kath and would not allow himself budged and for that I will forever be thankful and sure I chose the right neurologist (aside from the tons of other things he says and does "don't read the internet, it will only freak you out," "I can't give you a diagnosis, no one knows how kids respond and heal from a stroke; don't underestimate her.")

So, he told me that her stroke affected her left paritial lobe, possible brain stem IF hearing has been compromised, but he did not think so. She has something called pachygyria-there is an area of tissue that didn't receive oxygen and that has a potential for epilipsy. That area has a tissue loss that now contains fluid. When he read the report from the MRI, he said the technician/reader saw possible 'mirror damage' on the right side-which would indicate the stroke impacted the right side of her brain as well. He quickly assured me that he didn't not see that. He gave me a script for bloodwork--to see how likely she may be to have another stroke. I can get a copy of the MRI on CDROM from Albany Med (eish). He said that even though her risks for seizures are 10x more likely than another kid, he is not worried and therefore I am not to either. He suggests that we see a doctor of Physical Medicine and Rehab about the possibilty of scholiosis.

Chris has come home from school and will be getting his wisdom teeth out Wed.

Nick is on his way home from Tennesse from Bonoroo a music festival.

Alex is doing great. (More later.)

Kath is mobiling around and starting to work on more speaking. We have been spreading 40 yeards (may not sound like much but let me tell you!!!) of dirt and creating a garden. She is all over the backyard with us, walking and falling and getting up and chasing after us. We have started to take her on walks up the driveway/hill and around the circle. She loves it! Doesn't want to hold hands, wants to turn and go where she wants. She is a hellion with shopping now. She has started to say "ice" for ice pops (she wants those for breakfast, lunch and dinner). She is saying "yes" and signing it and nodding her head. She is also saying a couple of other words which escape me right now. I don't think anyone else would recognize them as words except Alex, Liz, Sue and I. Maybe. :-)

She had hippotherapy the Friday before this last one. After the initial freak out of the helmet, the belt and the getting put on a large animal, she loved it. Liz (horse/physical therapist, not to be confused with Speech therapist Liz) allowed me to walk next to her and hold her leg as she walked around on the horse. She wouldn't put her hands anywhere near the animal at first, then she used her RIGHT hand to hold on! Then she actually began to pet Marc (the horse) and tell him to Stop and Go. She bounced in her seat too. Alex got to ride too and she was thrilled.

The whole weekend anytime I asked her if she wanted to play--Kath would sign "horse." Now when she wants to make me laugh she signs 'horse' and I say, "No! There's no horse here!" She laughs and signs it again.

Today she managed to grab a magic marker. She used to play with them and work on her fine motor skills by taking the top off and putting it back on. Her hands would be covered but it was great fun. Well, I stopped her from playing with them because she wrote on something she shouldn't have--don't remember (who had the stroke??). Today she found the marker and disappeared into the playroom. I found her standing in the doorway working the cap on and off. She realized I was there and had the guiltiest look. I realized then that this lil girl is possibly even smarter than I thought-she knew I didn't want her to have it, so she hid it!!! Funny, funny.

Next week is her 6 month evaluation for early intervention--all team members will gather and we will make our plans for Kath for the next 6 months--PT, Speech and now OT. Sue and Speech Liz have already told me that as they looked at their first evals they are so amazed-that it is like looking at a different kid. Sue finished her test today and said that Kath was at about 12-14 months developmentally now. She has shown remarkable progress. She is an amazing girl.

School will be crazy for the next two weeks so I may not be as good as I should be--but I have 5 rolls of pictures waiting to get picked up-of the hippotherapy and assorted gardening and so on. Kath starts OT tomorrow with Laurie and then speech in the afternoon. Wed she has a hearing test at Albany Med. Thursday speech. Friday hippotheray. I have been having car problems--car is in the shop getting a new axle and something else, who knows? Brain stuff is easier to understand! And mostly covered by insurance. (gulp)

1 comment:

Madelyn said...

Hank kept saying all Sunday afternoon how great Kath looks, how happy he was to see her walking. Just imagine what she'll be doing in 6 more months!