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:)

They are growing up

It hit me today that they boys are really growing up. Tyler is over 5 feet tall, Davin is completely potty trained and Ryan is speaking in full sentences. Next year Tyler will be in Jr.High, Davin in kindergarten and Ryan in pre-school. To be totally honest, the baby phase was not really my thing. Don't get me wrong, I love babies, I just don't want them to be mine 24/7. I really enjoy the more self sufficient child that can tell me what they want- even if it includes the word no now and again.

I'm Drowning

OK so I'm not really drowning, but it sure has felt like there is not enough hours in a day!!! This is why it has taken me so long to post. The kids and I were able to go to the Navajo reservation in New Mexico and visit some of our dearest friends. We were able to take all the generous donations to their school to help those families with supplies. Thank you to everyone who gave of yourselves. It was so appreciated. It was such a wonderful experience, the only regret is that Trevor was not able to come with us. I also started my new job this week, and all I can say is the training is the most intense training I have ever been in. It is fascinating and I'm sure once I get the hang of it, I will be easier. We have one month of full time in class room training then two months of dispatch training. Then 6 months of probationary training until we are able to move to the level 1 position. They teach us to speak in codes and manage, multiple phones- 3 computer screens- several radio channels- two keyboards and multiple agencies/cities at the same time. I had no idea it was this intense. I am so grateful to my mom and friends who have helped me with the kids. It has been hard for me to not be in contact with them whenever they need me. You know the "poof what do you need, poof what do you need" scenario. Anyways Trevor and the boys are surviving and Tyler is doing a great job taking on more responsibilities around the house. At any rate, things will get better once I learn to swim!

National Institute of Health

So we just received word that Dr. Kastner and Dr. Holland want to see the boys at the Fever Clinic at the NIH the beginning of next year. We hope that this will give us some more detailed information on how to manage their disease. We have taken them off the Enbrel shots and both boys are now on Septra to bring down their T-cells and hopefully pull their immune systems back in line. Also, we think that Davin can build white blood cells to immunizations. So far the data is not conclusive, however, we think that he just might require more immunizations to get his titers to a protective level. We will find out in a month if it works. Hopefully he will not need a surgical port and monthly IVIG treatments. Right now we are hopeful that he will be able to attend school in the next year or two without issues. At any rate this is all good news:)

Processed Foods

Our one child who has re-defined the food guide pyramid to include chocolate, sugar, over-processed, over-refined and microwavable. Seriously how he can get as big as he is and insist on the food he does is beyond us. Our other children love their fruits, veggies and homemade foods. This one, well let's just say the more processed the better. Good thing we love him:)

Chasing Rainbows

A couple nights ago, Davin and I were out shopping when a fairly large storm hit. After 20 minutes of heavy rain, there was enough of a break to make it to the car. As I was loading up the car, Davin noticed a large rainbow that looked close to us. In his excitement he said we should go find the end of the rainbow. I figured, it wouldn't hurt. So off we went chasing the rainbow. As we crossed a main intersection, Davin noticed that the rainbow appeared to be touching the top of a book store building. He insisted that we stop and go in to investigate. No sooner was he out of his car seat than was in the store. He went running in saying "there is a rainbow in your store, a rainbow" then insisted on finding it. As I explained what was going on to the nice clerks, Davin started yelling "I found the rainbow". I thought to myself, kidding me? Next thing I know. He found a Noah Ark book that really looked like a rainbow was actually caught in the book. So excited, he asked the clerks if he could buy the book or if they needed to have the rainbow in the store. Of course they told him he could buy it, so I pulled out a gift card to that particular store that I won a couple days prior. Amazingly, it was for the exact amount. So to make a long story short, we are now the proud owners of a rainbow that we found. I guess it is out little pot of gold.