Wednesday, June 16, 2010

The Countdown: Day -9 complete!

In case your wondering about the "day -9": At this hospital, once the chemo starts, they mark each day leading up to transplant with a negative number making transplant day "Day Zero". Each day following transplant is a positive number (ie: "Day + 28"is 28 days after transplant).
First day of chemo is complete and we are so excited to say that Daylon is still his same happy self!! They told us that the chemo that he's started out on can make you nauseous about 20 minutes after it's given. He's been fussy at times, but I think it's more him being irritated about people fussing over him with all their white jackets. Daylon has a bit of an issue that we joking call "White Jacket Syndrome". He has learned that the jacket means pain and thus, the fear was created. :) He has really been a trooper though. He's on soo much medicine! All the wires he has coming off him is ridiculous! Like any 11 month old, he's tempted to pull at them, but I've tried to keep them hidden under tubifast and snappy pjs. :)
Yesterday he met with the Physical Therapist and worked on "Bench Sitting". It's supposed to help him stretch his hips and learn to put pressure on him feet so he can stand at some point. She wanted us to buy him a pair of Crocs to help with gripping the floor. I'm not a fan of the shoes but they're supposed to be gentle on EB kids, so it's nice to have a shoe option. I pray that they won't blister his feet. His feet are doing pretty good right now, but they can become two giant sores attached to his legs super quick. I'm sure it will all work out though! Well, that's it for now! Hope everyone is having a great week!


Jan's Blog said...

Thanks so much for the update. I think of all of you constantly and updates are a blessing. Sending you love and prayers!

Mom to Many said...

We are anxiously following your updates and feeling attached. :o)
You are in my prayers.


I hope the crocs work and dont give him blisters!!! He sure is such a handsome little guy!! So happy that the Chemo went well today. Your in our prayers Daylon!!

Sara said...

Hi :)
I am friends with the Ringolds...and had to check on Daylon. Praying for all of you!

Anonymous said...

Thinking of you all and keeping up with the blog. Thanks for the updates. Love and prayers are with you :-)

Kristyn said...

Thinking of you guys all the time .. thank you for being such a good writer Jennifer. Some blogs make me smile and some make me cry. We love you . Hang in there! Love the De La Cerdas. Kristyn, Tony and Family. Praying for you night and day.