Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Tuesday, September 27, 2011

Grouchy, Grumpy, Wimpy

We all have those days and Willem had one yesterday. This does not mean progress was not made. It was.

He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)

Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.

He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".

Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.

Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.

Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.

He received his weekly chemo at midnight through his port so we will see what the day brings.

Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"

Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)

Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!

Thanks to all for thoughts and prayers- he needs them all.

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