Joseph’s Health Update

Dear Friends,

We wanted to give you an update on Joseph. Last Tuesday morning was our most recent appointment. We are more encouraged than we have ever been about his health. We LOVE our team at National Jewish. Our primary doctor is from Germany, and our secondary doc is from China. Our nurse is a kind, older American woman. What are the odds were that God would give us German woman and Chinese man at a Jewish hospital to help us find answers for Joseph? We  love their countries and love that they are helping us.

Here’s the summary. I would happy to provide more details if you have further questions.

LUNGS:

1. His lung function numbers have improved since we arrived. He was first tested on November 17th. Fully medicated, he is breathing within normal ranges. They cut his medication in half as of Tuesday night to see how he does.
2. His next asthma appointment is March 9^th.  They are going to test him with and without medication.
3. They are going to do a test in March that will test his overall lung health.  They will irritate his lungs and see how he responds.  The test that they did on Tuesday and in November is a very detailed measure of the amount of air that he can blow out.

GROWTH:

4. He has grown 1.5 cm since we arrived. (We are saying 1 cm to be conservative, but they use a very high tech device to measure him, and it showed 1.5 cm)

GASTROENTEROLOGY:

5. It looks there is a high possibility that he has am auto immune disease called Celiac Disease.  This would explain his growth issues, GERD, tingling extremities, irritability, stomach pain, etc…Rich’s father has dealt with similar issues throughout his life and recently began a gluten-free diet. He has been pain-free abdominally for the first time in his life.
6. The reason we haven’t seriously considered this before is that CD is the #1 under-diagnosed genetic condition in the US. It takes the average person 9-11 years to get diagnosed. 10-30% of folks with CD have really overt symptoms that are blatantly life-threatening, but the majority live below the water line–living with chronic, but seemingly manageable issues, or slowly deteriorating and eventually having severe issues.
7. The gold standard test for Celiac Disease is a biopsy of the small intestine.  Since Joseph has had so many procedures and this one would again require general anesthetic, we agreed with the doctors that we would remove gluten from his diet to see if his symptoms improve.  Because there is a significantly greater chance of having Celiac Disease if you have a family member with it and symptoms are often silent, it is also possible that Rich, Rich, and David could have it.  So, as of yesterday, our entire family has embarked on a G-free diet (Gluten-free). This is not for the faint-hearted, but since we are used to reading labels for milk ingredients, we aren’t totally freaking out by the learning curve.
8. The great news about CD is that removing gluten from the diet is the only treatment that there is. Once gluten is removed, the small intestine begins to repair itself and body starts absorbing nutrients again. In children it can take as little as 3-6 months to see a remarkable difference. I read one author who said that most people with a life-threatening illness would be thrilled for the doctor to tell them that the only thing that they need to do is to remove one ingredient, albeit an ingredient that is extremely prevalent, and their body would heal. This has deeply encouraged me and shaped my attitude about this potential blessing. We would honestly be so thankful if he has Celiac Disease as this would explain SO many things and hopefully prevent the need for growth hormone therapy.

FUTURE:

9. We have an appointment with a Gastroenterologist at the end of February (1^st available appointment at Children’s Hospital)
10. We have our next appointment at National Jewish on March 9^th.
11. We have an appointment for a second opinion with the Endocrinologist on March 24^th.
12. The six month plan from our doctor is that she would like to figure out for sure if he has Celiac Disease and if not, what is going on with his GI system, get his lungs in the best shape possible, and make a final decision on whether or not he needs growth hormone therapy. Then she would like for us to return to Orlando and see how he does in the fall with his breathing. Obviously, it looks like he is thriving here lung-wise and it very much points to the humidity in terms of his asthma. However, her hope (and ours) is that by addressing the other issues, it would improve his asthma, and he would be able to live in Orlando, Denver, or wherever God might take him in the future.

We are greatly rejoicing. I wept on Tuesday night as I was shopping for Gluten-free food in Whole Foods and getting Joseph’s lower-dose Asthma medication at Walgreens. I feel like we have been fighting for our little guy for so long, and now we have tracks to run on. Thank you for walking through this season with us. David and Rich are doing really well. All three boys start basketball tomorrow morning and will be Jr. Nuggets through the local YMCA. I am sure that Rich’s Facebook page will be flooded with proud daddy pics by noon!

 Blessings,

 Kourtney