Day +36

Posted: September 29, 2010 by Kat in Uncategorized

After spending the weekend in the hospital because Creed’s hemoglobin was extremely low, we were able to come home on Sunday. While there, Creed received blood on Saturday and Sunday. Monday we had clinic to see how he responded to the transfusion. Hemoglobin was better, but not great, so we had to return to clinic today for some more blood!! We’ll see tomorrow just what his hemoglobin is. The good thing…we made it clinic TWICE and didn’t get admitted!!! Tomorrow will be our third trip, lets see if we can make it.

Creed and I are getting cabin fever now and really really want to go home. Hanging out at Ronny’s house is nice, but we just want to go home. Yesterday after we left clinic I decided that we were going on a little field trip home. We pulled out of the hospital and headed home. Creed was soooo excited!!! Our plan was to stay there for maybe an hour, but with Creed’s hemoglobin being low, he gets tired easily and he needed a nap. He crawled up in HIS bed, snuggled down and out he went. At 6:15 he came and woke me up. Oops!! Both of us had a much needed nap and rested in our own beds. I’ve asked when we’ll be able to return home for good. My answer was once the doctors know how his body will respond to the blood transfusions that will help them judge how often he will need them. As long as we have to go into the clinic 3 times a week, we’ll have to stay at Ronny’s house. Please pray that his hemoglobin goes up…and stays up!!!

On a funny note… the doctors want all caregivers to get the flu shot because these guys are at such a risk of getting the flu. His doctor mentioned it to me yesterday, today when we went in he asked if I wanted to get it today. Of course not!! I’m not a big fan, but it’s in Creed’s best interest so I did it. Creed thought that was hilarious!!! Mommy has to get a shot, not me!!! He was so pumped about that. Liz, the nurse, told him she was looking for the biggest and longest needle she could find. I even got a bead of courage that will go on Creed’s necklace. I’m so proud!! For those of you that don’t know what Beads of Courage is, check it out at http://www.beadsofcourage.com. It’s a really cool program!

We also had a special helper with us today, Gogo. She came in town to help out and spent the day with us lending another set of hands. Thanks Gogo!!

Tonight at Ronny’s some high school kids came in to help the kiddos make tye dyed tshirts. Creed, Jon, Gogo and I went down to start having some fun. It was a little cold for the Creeder so he and Gogo went upstairs and watch Jon and me from the window. I’ll try and remember to post a pic of our masterpieces. Jon dyed Creed’s and I did one for myself.

Oh!! I almost forgot!!!
This weekend I was fortunate enough to go to A Tribute to Silent Heros. This is a fundraiser for Cure Childhood Cancer. We as moms were honored as silent heros. It was amazing!! You don’t stop and realize what all you do and know until you have a chance to slow down. The program started with Chris Glavine reading a poem about being a mom to a child with cancer. My sweet friend Shelli, who is also a mom to a child with cancer sat beside me. It was great to be able to have someone by my side that actually “got” what this life is like. We laughed at times and cried at times. It was just a really special day and I’m glad I was able to spend it with her. My mom and other friends were there, but there’s just something about having someone with you that without saying a word, knows exactly what you’re saying. Thanks Shelli!!!

I’m so excited that this update has been a light one. We haven’t had a lot of crazy things going on. We’ve been in and out of the hospital 3 times in the last week, but all in all it’s been pretty good. Creed hasn’t been “sick” and that’s been a blessing. He is tired and his energy level is pretty low. He sleeps a lot right now, but the better his hemoglobin gets the better that will be. He continues to amaze me. Never thought my hero would be a five year old little boy.

Love,
Steph

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