Day 115, Mom’s Birthday!
My present was already given to me on July 11, 2008. A second chance for Hayden to live a long, normal life. Thank you UW Children’s Hospital for that wonderful gift! You really think twice about material things when you face medical issues like this.
Hayden is spending these warm days with Grandma JoAnne and Cassie (chihuahua) at our home. She has come to help out with Hayden until Wednesday! Today it is 70 degrees out so they have probably been on 2 walks already today. More to come this afternoon. Hayden just sits back and looks around with his little mask on. He loves it and it tires both Grandma and him out!
Hayden’s hair is also coming back nice and thick. It doesn’t appear to be real red, more darker, but that can change yet. He has facial hair too, but we won’t worry about that-that and the eyebrows will go away once the Cyclosporin goes away.
Hayden has some visitors this past weekend, Uncle Kyle and Aunt Katie stopped over to see Abby and Hayden. We can’t wait to be able to go to the zoo with Uncle Kyle and Aunt Katie once Hayden is better!
This week we didn’t have a clinic appointment, his levels came back normal last week except for the BUN, which was at 36, very high, so we continue with fluids at night and push liquids during the day. His T-cell count was climbing nicely which controls the immune system.
We are watching his teething again, he gets a stuffy nose, usually while he sleeps and then he wakes up cause he can’t breathe well. So once again I am up alot at night responding to his needs. Little noses vicks rub clears him up a bit plus an eyedropper of tylenol for the pain.
Rick will be solo in caring for the kids this Saturday to Sunday, while I enjoy a little get away with the St. Phillip girls to Galena, IL. where we will leave the children behind but probably talk about them the whole time. It will be lots of fun!
For Halloween Abby went as a princess witch and a princess (changed twice) while Hayden helped hand out candy at the door with Daddy. Hayden wore a black shirt with a skeleton and a little red heart on it. His Haloween socks lit up as he moved around too. We had the hospital gown, mask, stethiscope and blood pressure props on deck, but we didn’t need them this year as Hayden didn’t go out.
November 6th, 2008 at 7:33 pm
Hi! My name is Paige and my husband and I have a beautiful 4 month old boy who was diagnosed with Wiskott-Aldrich Syndrome about a month ago. Even though he’s most likely on the least severe end of the spectrum as far as severity (all he really deals with is low platelets and eczema), they’ve initiated the search for a bone marrow donor just in case, and we really feel like that’s the direction we’re headed. I’ve got to tell you, I’m absolutely terrified. It’s nice to read that your sone is doing well. I’d love to keep in contact with you if it’s ok with you. My email is HisLoveSvs@yahoo.com.