Wednesday, July 21, 2010

Back in town

Camp Sunshine was AMAZING! We were so blessed to get to spend the week with other DBA families in the beautiful state of Maine. We learned more about DBA than we ever thought possible and FEAR is no longer the word I would use to describe this journey. We start our steroid trial Friday and we are praying for success. Steroids can be a very good road for these kids. I am ready to get started. Here are just a few of the many many pictures we took last week.

After Maine we moved on to the state of Kentucky for a wonderful 90th birthday party for Grandpa. Almost all of James' family was there to celebrate the life of Grandpa Tassie. You could see the love for this amazing man and I am so glad we made it. We also got to see Grandma and Pawpaw which is always a good time. This was James Thomas' first time to Kentucky and he was great. I am so proud of our little guy because he traveled perfectly.

While in Kentucky we got to see the Hutcheson family. This was a special treat. I have prayed for Kashiku and Lemlem, seen pictures of them, heard numerous stories but to meet them in person was priceless. We had an awesome lunch and the kids played with James Thomas. I have known Karen a long time and to sit with her and John Mark and watch our kids play was awesome. I wish they lived closer. Here are some pictures from our great lunch!!!

Friday, July 2, 2010

Caring Bridge Page

I decided to set up a Caring Bridge Page for James Thomas. Lots of other DBA families have them and they are awesome when it comes to following all these kids through their medical journey. For the past 8 months we have really been in what I call the Honeymoon phase of DBA. We go in for our bimonthly transfusions, meet with our Hematologist, and monitor James Thomas closely for fever. I have gotten very accustomed to clinic, the ER, and all the staff at Texas Children's. Our hematologist feels that James Thomas is needing transfusions too frequently and so she is moving up our steroid trial. We originally wanted to wait until he was 18 months old but that is not going to be the case now. We wanted to wait until we got back from most of our travels. We leave on Friday for our dear friend Richard Duge's wedding in Austin, from Austin we fly to Maine for Camp Sunshine, then we go to Louisville for Grandpa's 90th birthday (and we are going to get to see the Hutcheson family WOO HOO), and then back to Austin. So our big date is July 23rd! I am super nervous about this entire process. We want James Thomas to respond with minimal side effects. It is also time to start our IVF stuff too. We had the most amazing consult with Dr. Hughes and he said everything is ready in Detroit. With all this said it was time for Caring Bridge! I am still going to update this blog. It will be more of what is going on with our day to day life. It will be my place to post fun pics and record all the great things James Thomas is doing each week!

Thank you for following us through out this journey. Your prayers have been heard and we are doing so well. If you think about us in the next week or two say a little prayer for all our travel. I do not LOVE to fly and we will be doing lots of it with a 13 month old!