Sunday, February 22, 2009

We visited Dr Foster on Thursday. It was a week (vacation) of Roger being sick and me watching Kath like she might explode. I took the girls to the State Museum on Tuesday and we had a good time. This is part of my 'Baby-Brain-Boot-Camp.' Alex loved learning all, seeing all. We had to rush through and we never made it to the second floor or the carousal. We will be returning. Then Friday Roger came with us when we visited the Children's Museum in Saratoga. Both girls LOVED the playing--Alex said it didn't feel like a museum. And it didn't--kids were running around like crazy playing--which is what the idea was. There was a firetruck and fire station, a construction site, a bank, market, diner, trolley. It was a lot of fun. We also had a couple of therapies this week, even though it was vacation week. We had lots of play time, too.

Back to the neuro on Thursday. Turns out the polymicrogyria that Dr Rivkin (Boston)( told us is the same thing as the pachygria Dr Foster (local) told me about 9 months ago--just that well . . .they are different sounding words . . .and each doctor put a different emphasis on different parts of it. So --yes we need to be aware of seizure possibilities and we left with a prescription to fill for 'just in case.' We also will be going for another EEG so we can start monitoring her more closely for any problems she might develop--so we can head them off. Because of the injury to her brain she is more likely to develop seizures, but we are hoping she is spared this.

Dr Foster does believe that she did have a stroke--he hasn't moved away from that. Which is too bad since I was starting to feel better and move away from the picture that I have in my head of her having a stroke in utero and me not knowing it. If she hadn't had a stroke then it would have crossed off the chance of her having 'another' but that comes back on.

The damage is on both sides of the brain--only time will tell how that will impact her.

Thankfully we have witnessed her blossoming this week while we have been home with her. She is playing like a 'normal' two year-old. She role plays--gave two dolls two different voices when playing. Cares for her babies-feeds them, talks to them, holds them . . .and tells us to be quiet since they are usually going to sleep. She brings books to me and if I don't sit and read she becomes very insistant. Very. She pulls my hand and pushes it so I sit down. Tonight I was watching something on TV and she took the book and REPOSITIONED it in my hands and said "Book!" She also saw Alex playing with a little Barbie I-Pod that came in a book (Alex thinks she is hot stuff listening to excerpts of classical music on her I-Pod!), so when Alex put the I-Pod down, Kath ran over, grabbed it and RAN into the playroom with it. She was even trying to put the ear pieces in her ears. When Alex came home from dance class on Saturday, Alex performed her dances for me (Roger took her to class) and Kath stood slightly behind Al, watched her and repeated the steps . . .and 'sang' too. She is doing some pretty great stuff. I took out one of my children's book that I put away a year ago because it shows you where your child should be developmentally and she was SOOO far behind it broke my heart. But now I can see how she is delayed--but progressing. It is very motivating for our baby-brain-boot-camp. :D

I have also been able to wrap myself around the new info from the past week in a better way. Whether it is due to the sunshine--too bad it is snow again!--the vitamins--or power of intention--I have decided I will not live in fear and I won't have the family hovering in that place either. We are in a good place. We are mostly well--Roger is feeling better :-). I seem to set the tone--not to brag--but moms might know what I mean--and if I am stressed and cranky I am not only not able to think and be creative in different ways that could help Kath, but I make everyone else stressed and uptight. So, I am going to try to keep the positive feelings going and hopefully attract the good and positive. I will write more about Australia another time. "Australia??" you say. Yes, another time. :-D

There is a boy from the list-serve for Hemikids that did have a pretty serious seizure and he was on life support and is still in the hospital--since
last week, so if you could send some prayers that would be great.

And my friend Donna's Hope is still in the hospital. She developed a clot and has been working on fighting that and her protein deficiency. Please keep her and Donna and their family in your thoughts. A 14 year-old in the hospiatl is not an easy thing.

I was just painting--have some more school and writing to do--it's only 11:41PM. :-D I hope this finds you all well.


Suelle said...

It' sounds like you're doing a really good job staying positive--that's hard to do! The sun does help, though, I've noticed that myself.
You have to juggle so much, I don't know how you do it! I've only got 1 kiddo & I feel so overwhelmed sometimes I just want to give up. But, giving up isn't an option for us, is it?
Hang in there V!

V. Gaboury said...

Thanks! Some days . . .ugh. :-) Thankfully there are ups as well, huh? LOL