Monday, December 13, 2010

The weekend update

So I am still getting over the worst cold ever, but luckily it seems to be getting much better. Saturday we took the kids to see Santa, and everything went fairly well. Luckily Santa seemed to be well educated on special needs children. I walked up to him with Jude in my arms, and explained he had had a stroke, and couldn't hold his head up well. Santa said he understood, and willingly took Jude in his arms. With some coaxing Emily joined in the picture, and she helped with Jude. Suddenly they snapped the picture just as Jude's head fell, and the cerebral palsy over took his tiny hands. His hands began to ball up into fists, and his head slumped forward. Mike walked over to better position Jude, and they snapped this picture.

It's a keeper, and full of memories. I tried not to feel down that Jude couldn't enjoy Santa, but you can't help feeling a little down. I figured that Jude probably enjoyed Santa in his own personal way. Santa then asked Emily wanted she wanted for Christmas, and she told him her items. After that he turned to Mike, and asked what Jude would like. The conversation went something like this.

Santa: and what would this little guy like
Mike: Robot legs (way to post Santa up with the impossible dear hubby)
Santa: I wish I could give them to all the kids that needed them
Mike: How about just a wish that all the kids in the world could be healthy
Santa: and especially this little one.

Santa gets an A+. I thought about jumping on his knee and asking for a car that will house a wheelchair and has a working horn, but I figured we had given him enough unfillable requests. So I let poor Santa be.  After the pictures Mike took Jude home, and as Emily and I were walking off I saw another couple hooking up a feeding tube to their child. I smiled, and made a point to walk to them and chat. I nodded at the bag full of formula, and mentioned how we just switched back to the Kangaroo pump. The mom seemed grateful someone related to what she was doing, and said how she loves her Entralite. We chatted for a bit about how to prime the pump, and noise reduction, and then I scooted on my way.

It was then time for Emily to go on her Angel misson, and man she had an amazing time. First she picked out her two Angels. She searched the tree, and read over all the names. She settled with a 13 year old girl, and then picked a "precious angel". The "precious angels" are for the children that are left over, and not picked off the tree. So she picked a generic 4-6 year old female to insure they would have toys too.

We went through the stores shopping for the items requested on the Angel cards, and I think Emily was very touched. She mentioned how grateful she was to everyone who donated, and how she really needs to send thank you notes. She mentioned how nice has been to her, and how supportive he has been of her causes. Then she said she wanted to adopt ten angels next year, and give up her Christmas to make that happen. Um, not sure she will uphold that, but we will see.

Today Jude had his neurologist appointment. The doctor said overall he thinks Jude looks very well, and even said that Jude's seizures may have changed. He thinks the "spasms" we are still seeing may be simple startles that a normal child would experience but enhanced due to Jude's condition. He wants to do another overnight sleep study on Jude some time after the holidays.

So even with my illness it was a good weekend. We felt defeated Jude couldn't sit in Santa's lap like the other kids in line, but thrilled he wasn't in the hospital. I was very proud of Emily for all she did this weekend, and overall we felt very blessed.

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