Sunny Monday!
The week has started out well! Hayden’s platelet count is at 43k which means we don’t have to get platelets until Wednesday afternoon. It is nice to not have to start the week by sitting at UW getting platelets. Hayden is enjoying the day with Grandma JoAnne, who came last night to watch him for 2 days. They have a long walk planned for today plus a few naps and of course lots of food!
We tried yogurt for the first time this weekend, he LOVED it. Rick was leery about giving him yogurt since it is dairy. We were both reassured when his stool looked normal and he had no reactions all through Saturday and Sunday. Since it was months ago when his dairy and soy reactions occured, I thought at almost 9 months of age, his digestive system should have matured to be able to break down the enzymes-so far so good. We just never know what to expect with Wiskott-Aldrich syndrome. Digestive issues are a factor in WAS.
Another thing that we learned at the MN visit is that another WI family visited Fairview Hospital recently for their son with Wiskott-Aldrich Syndrome. They are from GREEN BAY, my hometown! This is eating at me, I really want to find the family so I can see where they are planning to go for their son! Just one more mission I have!!!
***If you (GB people) know of anywhere we can find this information out, please yell and email us at: kami.blatter@gmail.com. We think they might be at Milwaukee hospital since we haven’t heard anything about another WAS boy at UW. Afterall, we are there a lot, there would have been some mention of it without breeching patient confidentiality.
Wednesday we are scheduled to get platelets for Hayden and then we will hopefully meet with Dr. Desantes (BMT doctor at UW) for answers to a few more questions. The decision of what hospital to choose is enough to give us both grey hairs! I wish our insurance would NOT give us a choice. Either place, we are looking at about 1 month for this to all start. Our poor Hayden, he is soo happy right now, I feel so terrible making him sick and in pain from the Chemo. I just cry when I think about it. We have to think of the outcome right?
kb