Did you ever see the movie "Groundhog Day" with Bill Murray? He plays a man who has to relive the day (Groundhog's Day) until he gets it 'right.'
We must be in need of learning some lesson. I say that in an almost "I'm kidding" way.
A year ago we were told that Kath had survived an in utero stroke, had CP and assorted other issues.
This Thursday when we went to Children's Hospital in Boston we were told she may not have had a stroke, but may have something called polymicrogyria. We were also told the damage is on both sides of the brain. Dr. Rivkin said he would not be surprised if when we talk to him in 6 months we told him Kath had several seizures. He said she would probably struggle with math (so do I!). . .have a heavy ILP (need aides) . . .and he alluded to, but didn't say (though the web sites have no problem saying it) mental retardation. I asked if she would ever do his job and he said it was unlikely.(Thanks to cousin Jenn for coming with us and watching Alex while we went in for our appointment.)
That being said he also said he hoped he was wrong and we call him names in a couple of years. (ad libbing)
We are trying to understand this new info with the realization that on Thursday we will return to our local neurologist and ask him a whole bunch of questions. And possibly need to sort through more info. They also took 30 mls of blood to do genetic and other tests.
We have gotten a couple of emails from moms on the hemikids list serve who told us how their children are doing. One mom has a a fellow 2 year-old and another's is a nine year-old who is part of the gifted and talented program at her school and has never had a seizure.
While we are trying to understand this new country we have opened a door to, we look at the same little girl we held Wednesday and we know that nothing on any MRI can truly tell us Kath's limitations and expectations.
That is easier to say at certain parts of the day than others. I have struggled with hives for the past week--the pre-Boston anxiety and now the post, I assume. The week before I spent a week in a neck brace with a 'pulled' neck muscle. So, I am trying to find meaning, measure and peace.
Chris returned to school for his final semester at Bennington College yesterday. We had a great day today with the girls. We created our After Christmas/Valentine's Tree. Our live tree made it from Thanksgiving to--well, it is still with us. We brought it outside yesterday after we took off its Valentine decorations and today we decorated it for the birds and squirrels. Paper towel rolls cut in half and toilet paper rolls were lathered in peanut butter and bird seed with bright red yarn strung through the centers, then hung on our tree that is now residing on our back deck. The girls loved making the bird feeders for their feathered friends and we have bird seed every where. We played outside, made ice cream sundaes, drank cocoa, read, colored and played. It was a good day.
Kath had therapy with the teacher for special ed--Stacey. Stacey said that although she notices that Kath cannot always point to objects when requested and struggles with puzzles, she wouldn't deem her mentally retarded . . .especially when Kath tries to outsmart Stacey for her doll!
Apparently last week and then we saw this week, Kath was playing with a really cute doll Stacey brought that moves her arms and talks, laughs, cries. Last week when it was time for Stacey to leave--Kath hid the doll and then began to point to the dog or something else--to distract. This week she tried to keep saying no and then came over and hugged me. She really wanted to distract us from remembering the doll. Hmm... mental problems?
Dr. Rivkin mentioned memory problems, too. Well, as soon as I told Kath that Stacey was coming she was thrilled. When Stacey showed up, she immediately started to ask for the doll. Mind you, Kath sees Stacey once a week. And she also has OT. Speech. And two PT visits a week. Plus as I said a trip to Boston. Hmm... I think Kath will be breaking many expectations.
That is my prayer.
I also ask you to pray for my friend Donna. Her daughter Hope is in the PICU of Albany Med with a variety of issues that sprouted from her body forming strep viruses and since she has HLHS (hypoplastic left heart syndrome)it is a serious matter. They are both amazing people.
I hope this finds you well. Enjoy the sun!