Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As you all probably know, Kyle was born April 28, 2008 with Down syndrome. Shortly after, we were told that he had transient myleoprolific disease (an early form of leukemia). We spent many months going back and forth from Hopkins closely monitoring him. His immune system was very weak and we were not able to immunize him for the first 6 months of his life. After that, his leukemia resolved (this can happen in down syndrome folks) and we begain his journey of development. I never thought Kyle would sit up, let alone walk. Today he is into everything - Praise God! Each year we take Kyle to an array of doctors - Ears, Eyes, Endocrinologist, Immunologist, GI, Down syndrome specialist, pediatrician, etc. About 2 years ago, we realized Kyle was severely anemic. At the time, I was going through breast cancer treatment, so we treated him with oral iron and his anemia improved. After my treatment was complete, the pediatrician ordered some more blood work on Kyle and we found that he had an extremely week immune system. After a lot of blood work (read human pin cushion), it was determined that Kyle had Chronic Variable Immune Deficiency. In a nutshell, he doesn't have the immune system you or I have and therefore he was getting sick very often. We also found that he had protein losing enteropathy. Enter more tests - colonoscopies, egd's, biopsies, ct scans, trials of steroids. We have been unable to locate the source of the protein loss and this is most concerning, because we can't treat it. The GI doctor at hopkins is at a diagnostic end. So we are praying for direction.
In the meantime, Kyle has a cyclic vomiting syndrome - possibly abdominal migraines. We have some meds to prevent - but they don't seem to be working. He loses many days of school due to the vomiting and it is not fun from a laundry perspective.
As for the immune deficiency, we give him a weekly infusion of gammaglobulin at home. This involves placing two small needles in his belly and pumping in the fluid. As you can imagine, he does not like this and does not understand why we are hurting him. He often says, "Dan's turn," and "You bad" when we stick him with the needles. You can imagine a momma's heart when she hears these things.
Add to all of this the daily challenge of raising a special needs child.
We have many faithful friends and family who are helping us on this journey. Friends who go to blood draws, pick him up from school when he vomits, attend appointments and help with infusions. We truly could not do it without the love and support of these people.
Please pray for wisdom and direction going forward and for daily mercies.
Thank you and may you be blessed by joining us in this journey! Candie and Bob