Journal History

Click here to go back to the main page.

Wednesday February 6, 2002 3:04 PM CST

Well, we went off to the clinic yesterday and Elliot's white blood counts were still over 10,000 and platelets were 42 (needs platelets for any number under 40). So for our visit today we went ahead and ordered the platelets, but when they did his labs this morning his platelet count had gone UP since yesterday.......you know what that means?
HE IS MAKING PLATELETS ON HIS OWN!!!!!!

Elliot is starting to eat like a little piggy again but he chokes easily so I have to sit right with him and give him more soft foods. He got so spoiled in the hospital eating ice cream, pudding and basically anything I could get into him, he is still not eating enough to come off the evening tube feed. He loves orange Hi-C which I never would normally give him but he has gone through more than any little kid should so now I give him what he likes and sneak in the "good" stuff. He is also in the habit of yelling at me...they tell me that the steroids make the kids really cranky and he says "no" to everything, like now he is yelling dadada to me and signing "more" because he wants another cookie. He sure does love to cuddle though and he giggles when I put on his mask because that means we are going for a ride in the stroller. Well, that is it for now, no clinic until Friday.

Monday February 4, 2002 9:27 PM CST

Well, we made it out! It was a busy day with Doctors, Social Workers and Nutritionists and then came the medications. This whole time I have not felt as overwhelmed as I did when I sat down with the Pharmacist as she handed be a brown grocery bag full of 20 or more medications. When we returned to the Ronald McDonald House the home health nurse visited us and brought yet another 2 grocery bags full of supplies and our tube feed pump. The real heart attack came when I had to give 11 medications at 8pm, well needless to say I had to start drawing them up at 6:30 and literally panicked the entire time. Well, Elliot has been sleeping since 8pm (nice thing about the tube feed, I don't have to wake him for his meds-just shoot them down the tube) and I think he may sleep through the night, well I hope he does. Good Night, clinic all day tomorrow.

Saturday February 2, 2002 11:27 PM CST

Elliot received a "get out of jail free" pass today! after 52 days in the hospital we were able to get out for about 3 hours. Nothing exciting, just laundry, however he took one look at all of his "things" in our room at the Ronald McDonald House and started to get back to his old self. I have never seen a child be so excited to have his shoes on and giggle at the site of his Jammies. He sat and ate golfish crackers, walked with his walking toy and did the stairs-rehab would have been very impressed! We should be discharged in the early part of the week, and then as we all know the busy part begins.

Thursday January 30, 2002 11:36 PM CST

Well, we are still in the hospital. Elliot started to get a little Graft vs. Host disease on his arms and belly (rash), they had found that his CSA level (med that decreases GVH) was too low. Level started to get low when he began taking his meds by mouth so we needed to change some back to IV. So at this point everything still looks really good, he has been 100% engrafted since day 21, this means he now has all of his Daddys Bone Marrow and the Docs now say we will be going home (Ronald McDonald House) by the weekend. We recently have been going to another part of the hospital for all PT, OT, and speech. Elliot loves to get into the wagon for the ride through the hospital and has been doing a fair amount of walking when we get there. Lately he loves nothing more then to sit with Mom and cuddle!

Wednesday January 24th, 2002

Elliot continues to amaze everyone, he went from dialysis last Saturday to going home this Sunday. Today we went into the hall, and holding one of my hands he walked about 40 feet before turning with both hands in the air for Mom to lift him.
We are saddened for the loss of our little Alexis today, and love her and her whole family very much!

Click here to go back to the main page.

----End of History----