The NIH

What a fascinating place! The children's Inn was incredible and the boys didn't want to leave. Thank you to everyone who helped us get there. Thanks to Grandma Gunn for coming with us and sacrificing so much for the boys! The boys were able to be evaluated by a dozen different MD's and were enrolled into a second protocol as well. They are now in the Periodic Fever Protocol with Dr. Kastner and his team along with a specialized protocol for Undiagnosed Diseases relating to White Blood Cells. The second protocol is cool because it only takes 500 people and will look at how white blood cells react with different stimuli and over time. If new diseases are discovered and relate to the boys chronic infections, we will be notified and offered treatment options. They will keep the boys labs and DNA on file for as long as we choose and use it to compare and contrast their problems with the general population. It might take a couple of months to get the results back and even then, we might not know for sure- but at least we are giving it our all. As far as their TRAPS are concerned, Dr. Kastner wanted to wait and see what the specialised labs show before making decisions on how to proceed. Since their cases are more intense, they wanted to rule out other possibilities first. It was interesting to meet everyone involved in the discovered of their genetic condition and hear what they had to say!
The plane ride home was a little tricky- Davin's stomach started to swell and got bright red, he had to run to the restroom several times in flight. The people on the plane didn't understand and I was too overwhelmed to explain everything. Ryan's mild red ear turned into a puss filled ear infection so he has been a little grumpy to live with and Tyler is now in the middle of a full blown Asthma attack, so instead of being able to get home and relax, we were back to the doctors. Seriously, is anyone else out there going as nuts as I am????? It would be nice to worry about not so important stuff again! In reality, I can't complain, I feel blessed to get as far as we have and to be surrounded by so many wonderful people. There is so much we don't understand about the human body and so many people that suffer in silence, I'm just grateful for those people in our lives that are concerned about the welfare of my children. We would be in a much different place if it wasn't for them!!! So thank you from the bottom of our hearts:)