Well we bought ourselves an extra night's stay at the hospital after Coleson spiked a fever (100.7) after his last round of chemo 2 nights ago. It was in the morning and we have to wait 24hrs. after a fever to get released. He was feeling back to "normal" yesterday and was a ball full of energy running around his hospital room. He later took a 3 hr. in the early evening and thus stayed up to 1:00am. He thankfully though slept until 9:00am so I was able to catch up on some much needed sleep. His blood pressure is running high which it typically does in Hurler's kids but it came down after a dose of BP meds. Oh, and we discovered during his line dressing change that he slightly pulled out his line exposing the protective cuff that is supposed to prevent the line from coming out.
Todd - I thought of you and Ethan, although after an x-ray it is still in position thankfully.
Tomorrow he has to be sedated for his intrathecal (spinal) injection of the Enzyme and an ABR and hearing aid fitting. It will be a tough day of sedation so please send your love our way!
Peyton is having a lot of fun in Michigan. She is playing with cousins and friends, swimming, washing pigs (my nieces and nephew show them at the county fair this week), jumping in the hay bails, and attending a George family Reunion yesterday. I heard she hung out with cousin Rob, caught 2 fish, played with Caden explaining they were cousins and wanted to jump off the high dive (I think it's like 20 ft up?) Again, Tenacious P! She misses her brother and wants to know if his "owies" are gone. I hate to keep telling her "not yet".
Here are our addresses, please feel free to send us cards, letters, etc. Peyton loves to get mail!
University of Minnesota Amplatz Children's Hospital
2450 Riverside Ave.
BMT Ward 4 - Coleson David
Minneapolis, MN 55454
Ronald McDonald House
(Our Name) RM 441
621 Oak St. SEMinneapolis, MN 55414