Sunday, April 4, 2010


It's me again. I had a pretty good week again, almost 3 weeks out of the hospital! The beginning of the week was a bit rough with more seizures than normal including a grand mal seizure on Monday, which I haven't had in a year. With tweaking my meds, we were back to normal by Wednesday.
I went down to Children's to see Dr. E & Dr. C this week, and they both can't remember when I looked this good! Dr. C showed mommy a movie of me a year ago, and boy did I move a lot! I think we all had forgotten how bad my movement disorders were. I had tons of smiles though, tons! My mom was also impressed with my neck control a year ago.
Dr. C asked if we're taking a vacation this summer. My mom asked: "with or without Jacob?" Thank god Dr. C is looking out for me, she definitely felt it should be with me! So, mom and dad are looking at going up to the mountains again as soon as Sarah gets out of school. Yippie! This time I am coming along.
Dr. E was also happy to see that I had stayed out of trouble as she was out of town, and really felt that I looked good! That is something we haven't heard for a while. She was even ok to let me go unseen for a month. That hasn't happened all winter long.
Mommy had a good week too. She organized the 3rd meeting for parents in the Special Care Clinic. The group is growing, and they had a great evening at Rock Bottom this past week. She told me that it's one of those times where you don't want to miss a single conversation around the table, since they are all so relevant to us! The big topic was sleep or rather the lack of it. I seldom see such an engagement around that topic! They truly have found each other, and I am very happy for my mom.
She also got the official go ahead to start the Sibling Support Program at Children's Hospital! The Director of the Butterfly Program is really excited that she will do this, and we're all hoping to have it up and running by the summer. Now, the actual work starts, so I am sure my mom will be busy!
Today, it's Easter. The day started out with Shannon coming over to the house with Easter baskets for Sarah and me. It was great to open gifts, and hang out with her. We then went to the park close to our house. I love to get out again, and the extra plus today was that my classmate Mara was at the park! We were both excited to meet up again, and she loved my cool sun glasses, and insisted that my mom took a picture of our sun glasses (not us). You can see how great they both look!
We're soon going to go over to friends' house for Easter dinner.
We're ALL going! Mommy and daddy say I look well enough to go, and we're close to home in case we need anything. I'm very excited as well as the rest of the family!
Happy Easter to everyone!
- Jacob.

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