Monday, August 20, 2012

Cleveland Clinic: Day 5

08/17/2012

After having a bad day yesterday, today was the best day!! This morning Philippe was on one of his 10 minute breaks playing in the toy room when Princess Belle showed up!!



She must have thought she was Santa Claus because she had a wagon full of toys! I asked her if she would come in our room and meet my daughter Belle. She said 'Of course!' I was so excited I only got a quick picture, but there was a professional photographer that snapped a few shots and said he'll mail them to us. They also gave Philippe and Belle each a toy and a book.



Right after Princess Belle left, Jenny came again to do music therapy. She let Philippe and Belle each play with a maraca, and she sang songs and let Philippe play the piano. My kids LOVE music! :)




After all the morning fun, it was time for our appointment with Dr. Prihk. 
He ordered some genetic and metabolic tests to see if that might be the cause of Philippe's seizures. We won't know those results for 4 months. On our way back from the appointment I took Philippe to see the fish. It's his favorite! 



When we got back to our room we had a child psychologist come and watch Philippe play and ask me a bunch of questions. She said Philippe has PDDNOS, basically, he's not 100% on the autism spectrum, but he has a lot of "quirky things" he does that are characteristics of autism. This really doesn't mean anything new for our family, just that we'll keep on going with physical, occupational, and speech therapy. We will also add a behavioral specialist to the mix of people we see. 




There's a large group of people that volunteer in the Cleveland Clinic called "Family Life". They bring toys, movies, and snacks for the kids that can't leave their rooms, and sometimes they just watch the kids so the parents can take a break and walk around a bit. One guy named Tom likes to stop by and see Philippe. On his visit today I asked him if they have any Mickey Mouse Clubhouse movies Philippe can watch because it's his favorite. He took me to the movie closet and they had 1! When we came back  to Philippe's room Tom gave him an awesome toy that he gets to keep! It was so nice of him! Philippe loves it and he was so happy. Then I played the movie for him and he was SO happy!! He was playing with his new toy, watching the movie and giggling. It was great!

Philippe dozed off and Crystle and I were chatting for a bit. I crawled into the bed to snuggle with Philippe and go to sleep, but I accidentally woke him up. HE HAD A SEIZURE! All week long every time he fell asleep I'd think "maybe he'll have a seizure when he wakes up", and every time he woke in the morning or after naps I'd have the button in hand ready to call the nurses if he seized, but all week, nothing. Now Friday night at midnight he was having a seizure and I was completely unprepared! Crystle and I scrambled around and couldn't find the button. I flipped on the light and threw the blankets off of him and stepped back so the video could get a good visual recording of his seizure, but I still couldn't find the dang l button! Crystle found it and pushed it, which puts a marker in the EEG and the video to mark the seizure, and it simultaneously calls the nurses into our room. 

We watched him seize a few minutes and the nurses asked how long it usually goes. I said "it always lasts 20 minutes". One of the nurses (who watches kids have seizures every day) looked like she was going to be sick and said "there's no way we'll let it go on that long". Then they asked me how often he has them. When I said "one to three times a week" another nurse looked like she was going to cry. Then one of the nurse went and got a medicine and put it in his IV to make the seizure stop. 

Finally I could relax!!! He'd had a seizure and it was recorded. Amen!

1 comment:

  1. Candice, I am so, so glad yu were able to get a recorded seizure! My heart goes out to all of you and prays you will finally find your answers.

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