Thursday, August 7, 2003

Day -7

Today Max had another strong, busy day. He's still got a pretty good appetite and his strength is holding up. It's amazing to think about how his body is taking to the chemo. When the nurses bring it in, they wear full body coverage and face masks. I asked them why all the extra protection, and they told me that if it was to spill it could give them leukemia. So they're worried about a couple of drips, and they're putting full vials of the stuff into Max every 6 hours. Yikes! We've been told that things really get nasty on the next chemo and then he gets some stuff called ATG which will really mess him up. So stay tuned!

He had speech therapy and occupational therapy but both times the physical therapist came by he was napping. The physical therapist told Margaret that after Hurler kids learn to walk they lose the range of motion that they have now while they walk with their arms raised holding onto Mom and Dad. The muscles in the shoulders are more constricted in Hurler children. Who knew?

I've been under the weather for Max's first week so Margaret's been bearing the brunt of the hospital time. I must have caught Grace's little bug but it finally seems to be moving out. So that means I'll be moving into the hospital soon enough. Today, Grace got to play with Julia, a Child Life Specialist. She gave Grace a doll with a Hickman catheter in her chest (like Max) and some medical supplies. Grace named the doll Abby, and had a great time with it. She knows how to screw a syringe into the catheter to administer "pretend chemo" and also a new medicine Grace created called "femo." We hope Grace doesn't ever try this on Max! Also, while I've been down, Grandma Chick has really stepped in and tonight was able to cover Max so Margaret could come back for Thursday night BINGO with Grace. Tonight's winnings: a new set of LEGOs.

In other news, both of my sisters are driving up tomorrow so we should find a way to get Grace and Grandma (and us?) out of Ronald's House for a getaway. Also, Max turned 13 months today (8/7/03 Thursday). A year ago he was still in the neonatal intensive care unit and we were so scared. It seems like he's been around so much longer because he's been through so much. But he's still our little champ and we couldn't be prouder of him.

Sadly we also witnessed another family grieving and leaving the home here after the loss of their daughter. We've been told we're going to see a lot of that. There are so many tough cases here and so many hopeful parents and so many sick kids. We must hope that Max will be one of the lucky ones.

Keep on staying positive and keep on checking in. We really appreciate the notes from all of you.

Good night from Minneapolis,

mike

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