So bright and early this morning I met with Lily’s teacher, the counselor, her OT and ST for Lily’s IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it is so obvious how involved her teacher last year was and how much she knew Lily. It was like I wrote the report. Her new teacher seems very loving and well skilled and I think it will be a good year. Even better if we can get these seizures back under control.
This past weekend we went to Pine, AZ. It is about a 2 hour drive from our home straight north. Andrew had a couple friends and their girlfriends join us and we did some fresh water swimming at Fossil Creek which was fabulous! The water was a little too chilly for princess Lily so she sat and watched, I got some gorgeous pictures of her (check out my Flickr)! Andrew’s friends were so awesome in helping getting Lily down and up from where we camped. It was not an easy endeavor and I was gracious that they were so willing to include Lily. But although the weather was cooler and the air was so much cleaner, Lily still had 4 seizures that Saturday and 3 that Sunday. Could be the elevation? I am not sure. But then we came home and she was back to one a day, which we can handle since the study drug has about all but cured her drop seizures. But since we went to see neuro on the heels of that weekend I asked for change, but I guess unless I see her go out of control again, I might just delay the change. This is what he proposed:
1. Weaning Topamax, a joint decision, she has been on that since 18 months old! I don’t think it has ever done much for her, but because it is safe we haven’t messed with it. So we will wean that first. He says cut it in half for 10 days then stop. I am far more conservative than him and will take about a month in getting her off.
Study drug: Stay the same, a nice low dose that seems to be warding off the drops
Keppra: Lower just a bit, but keep her on
Dilantin: Add. Sigh… I will if needed, but ugh, a new drug….well new old, she tried that one when she was itty bitty and it worked then it stopped working.
And to keep in mind trying again the Ketogenic diet. It has been years since we tried it and I suppose I’d be willing to give it another shot if it meant getting her off so many meds. I don’t know… It is a lot of work and Lily is so motivated by sweets, I would hate to take away her one true love in life. We will see. I am praying that the answer will be easy for us to make. No answers seem to be easy, but maybe just maybe this one will be.
So that is our update for now. Oh I had an u/s on Friday checking for down syndrome and all looked well and they didn’t see any signs of DS. But the tech said she was 95% certain that I was carrying a boy. I won’t believe it until our 20 week appointment, but I was looking online at how factual determining the sex this early with the u/s we had and it was about 90% right at 13 weeks. So maybe we will get to find out all about snails and puppy dog tails.
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The pictures of Lily are just beautiful. What a face.