Welcome Liberty Rose!

We added one new member to our family last month! I figured it was about time for Tyler to have a dog. She is cute, but a lot of work, as puppies are. She is a Miniature Schnazuer, but finally another girl in the home~ I keep thinking that now I have 5 things in this house that don't listen to me... I must be an expert by now!

Update

We heard back a little from the NIH last week. They are still not sure what else is going on with the boys, but it seems that they have something else besides their TRAPS disease. Davin's kidney results were off, his platelets were low and still did not respond to the immunizations. Ryan has an IgG def., which means his immune system is not responding well. These issues could explain why their TRAPS disease, which is an inflammatory disease, is spiking so often. It means they are actually getting sick easier than most kids, but when others start to get better, their TRAPS flares. The great news is so far the full strength antibiotics that they are on is keeping things at bay. With less full blown infections, their TRAPS disease is not spiking as often. We still have not heard back about the NEMO disease results, so our ped MD wants us to put Davin on a Gluten free diet and see if that will help him gain weight and grow better. I'm supposed to be on it as well, but, I find myself having one excuse after another not to start. I'm kind of hoping that we hear back from the NIH with some more definitive answers and an action plan that makes sense. Is this asking too much? The past 5 years have been so intense that I think I deserve it- right?

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:)