Tuba has an appointment tomorrow with his pediatric neurologist. He and I will go together and have a nice one-on-one afternoon together. The seizures have been terrible...50+ a day. The only good thing is that he isn't too bothered by them. They come and go and he goes about his day. Mr. P and Busy Guy both alert us when they see a seizure. So great...little guys watching over their big brother. They will stop and put an arm around him or rub him.The Make A Wish people are coming on Saturday to meet our family. I'm really excited. It's hard for Tuba to understand the concept. We have talked A LOT about what Tuba would like to wish for. Cam and I listed all of Tuba's favorite things:
Water
Fire
Things that spin
Rides
Beach/Ocean
Swimming
We talked about the possibility of his wish being a trip either to Disney World...or a Beach trip...Hawaii. I want to help Tuba make the right choice. I want the trip to be perfect for Tuba. After MUCH talking...mostly by me...trying to sort out my own brain...I think we know that Tuba would most enjoy the Hawaii trip. He would LOVE to see the Fire Dancers perform!!!!! Those of you who know Tuba know how much he LOVES fire....."FIIIIRE"...as he would yell it. The beach....the swimming pool...a boat ride are all things he LOVES. We will see what the volunteers say on Saturday. We are so thankful for this opportunity for Tuba...and our family. Make A Wish is a GREAT organization. Check out their website and read some of the stories of wishes granted.
One person suggested that he wish for another Holy Week! LOL...our priest is probably cracking up reading that one!
So sweet and precious. Isn't it wonderful how kids understand kids.
ReplyDeletefrom aunty chris I read your blog almost every and have loved to fallow along. I have even shown your blog to friends that are far from home for they families. One friend even has family in Bethlehem. Did you ever figure out how to make a books out of this for the kids?
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