Saturday, February 8, 2014

Overdue Rare

     Wow, this post is beyond overdue! Like months overdue. There is a lot to catch you up on, so bear with me as I attempt to do so without writing a novel. And hopefully I will be better at getting back to blogging.... well, here it goes. Our adventure over the past few months.

     RARE. Rare, you say? This word dominated most of our May-September 2013 (yikes, it has been a long time since I have written.) No, we did not eat an abnormal amount of steak over those months. If only that is what RARE referred to... rather, it had to do with Kristopher. If you have been really out of touch with us then you might be confused as to what I am talking about. We found on Easter 2013 that something was off with KG medically. He had a surgery and a battery of test run in the UAE. All had the same result. "Uh, that is really strange. I've never seen anything quite like this." -all of the drs who treated KG. April and May were long, hard months as parents. We felt so helpless as we watched Kristopher bleeding from sores on his body. Some days were better than others, but everyday there was blood. After a particularly bad day we crossed back across the border to the UAE and KG was admitted into the hospital. He was given Factor VII to force clot his blood. It was hard watching my little guy get poked with needles. But he was so brave! After staying the night in the hospital they were able to slow the bleeding but the Drs. told us there was nothing else they could do for him in the UAE and that it would be best to return to the States. His condition was too RARE. Our Company quickly came to the same conclusion, that we would be able to get answers in America. SO, we had 4 days to pack for the trip, say see-you-laters to a few friends, and find lodging in Augusta, GA. We chose to return to Augusta because there is a top-notch pediatric hematologist at the Children's Hospital of Georgia. (Our families were thrilled that we would be so close to them!)  He agreed to see KG right away and was very interested in his case. The plan at this point was that we would return back in three weeks...
Surgery and Overnight in the Hospital UAE

     Our first appointment at the Children's Hospital was totally different than any we had experienced in the UAE. The rooms were designed for kids and the staff was amazing at relating to kids! Alexis loved this part! There was even a pizza party! After this first exam the Dr. again told us this was a strange case. He ordered so many test for Kristopher that they had to take my blood too because it would have been too much to take from a baby. We had to wait two weeks before we got any results back so we enjoyed our short time we thought we would have in the States. Went on vacation with my parents to Hilton Head, and spent time with Hans' sister and her family. KG's bleeding had stopped a little, but while on the trip to the beach we noticed another sore. We called the hospital right away because we were scared that this would lead to another bleeding episode. KG was then seen by a few more specialist in their fields. And again we heard, "wow, this is weird, strange... let me consult someone on this. Man, I've never seen anything like this." This is NOT what you want to hear from a doctor about your baby!! After this appointment we extended our time frame of being in America for another few weeks.
Hilton Head trip (Memorial Day Weekend)

Hilton Head

Gunter Time
Fourth of July

      We were not really that close to an answer but our time to fly back was closing in... we had all of our bags packed and tickets ready when we were told by the medical dept. within our company that we were not going to be cleared to return until we found out exactly what KG had. This was a huge blow! One of the pediatric doctors told us it could be up to 10 years before we knew what this was!
At this point we were pretty broken. Our little boy was still sick and we had no idea what was wrong. And on top of that we had to figure out how to get back to our house and pack it up. Thankfully an amazing couple stepped up and provided the funds needed for us to fly back and pack our home! It was a huge blessing! Hans and I spent 5 days totally packing our things and trying to say good bye to some of our dearest friends. It was one of the hardest weeks of our lives. We had a yard sale- the kind where everything must go, and I broke down when we sold KG's crib. I mean he never even had a chance to really use it! It was crazy waking into our house and seeing it all set up as if we had just been there! Lexi's little shoes were still by the front door, and the kids rooms were filled with all of their things. Let's just say it was really really hard. There are moments even now that I still get sad about the abrupt ending to things there. Alexis still talks about her home, and tells people that is where she is from...

Saying good-byes that week
Could not have done it without our great friends
We celebrated our 5th anniversary that week

       Back in America we were in a state of totally transition, only we didn't know where we were/what we were transitioning to. So we focused all of our efforts into figuring out what was going on with Kristopher. By this point the test came back negative for any hemophilias! Praise Him!! All the Drs. agreed that it had to be auto-immune. This brought us to a pediatric rheumatologist. She was fantastic, and within a few appointments with Kristopher she came to a probable diagnosis; Bechet's Disease. Now let me explain a little bit about what this meant... She was NOT happy about telling us that this might be what he has. Most people are diagnosed with this in their 20's, very rarely in childhood, and NEVER in infancy. Bechets causes ulcers in the genital regions and in the mouth. They are painful and can bleed. Check he had those... And the third qualification for Bechet's is swelling of the eyes. This will eventually cause blindness. KG was a champ at this intense eye exam! Thankfully there was no swelling at that time. It can happen up to three times a year, so we are supposed to watch for it. Bechet's is rare in America, as it is found mostly in the Middle East/Asia. It is also referred to as the Silk Road disease. We were put in contact with a Dr. in Turkey who is the world's leading physician on the disease. She was very interested in KG, as he would be the world's youngest patient to be diagnosed with this. She referred us to one of her colleagues at Emory in Atlanta, GA. He, along with the Turkish Dr., are on a committee that is rewriting some of the older research on Bechets. At this time they are saying Kristopher has Complex Aphthosis because he doesn't have the eye swelling. We will observe KG over the next several years and watch his symptoms. IF they progress then we will know its Bechets. But for now, we will rest in saying its Complex Aphthosis (this is very similar to Bechets, it just doesn't have eye swelling as a symptom and all the other horrible things that go with Bechets are not an issue!) So for now Kristopher is on a medicine that he must take daily. Giving a pill to a toddler has it challenging moments for sure. This medicine can be really hard on his liver so he has to have blood test every couple of months to check his levels. So far so good. He also has to have a round of steroids when he has flare-ups. Thankfully he has only had one. :) Oh, and I forgot to mention: we found out all of this in October. So it has been a long road to figuring out what was going on. We are thankfully for God's protection of him. If you didn't know he had this, you would never know by hanging out with him. He is SO full of life and energy. He loves to explore everything! He has no fear, and really he is our Hero!
{taken by Brett Seay Photography}
     Gosh, sorry this has been really long. Are you still reading? I know that was a lot! But all of this has been a life changer for us! We found out in Nov. that we were going to have to resign from the IMB for medical reasons. KG's condition requires him to be seen by a pediatric rheumatologist, a specialty that is rare in the Middle East. We were crushed at the news that we would not be returning overseas anytime soon. But God is faithful. We said all along that we felt like KG's medical stuff would send us somewhere we had never thought of... and the next day after getting the news that we would not be going back, we received a call from the North American Mission Board about working with Muslims in North America, specifically in Toronto, Canada. Nope, that was not on our radar. LOL. After praying about it and consulting with many friends of the Faith, we felt that this was in fact something God was calling us to. We will be moving in March to Canada. I will explain more later in another post. Mostly because this one is SO long already. Hope this fills you in on the last 6 months or so.

OH, and WE ARE GOING TO HAVE ANOTHER BABY!! Tie-breaker coming in Aug.!

I will go back and write a few blogs to fill in blanks. Like KG's 1st Birthday Party, Lexi's 4th Birthday Party, Christmas, snow day, more about this pregnancy, and more about Canada!