So just to keep everyone in the loop...and also because I don't have the energy to explain everything to everyone right now, I figured I'd post a little update on our sweet Kai-boy. As most of you know, it's now been 4 weeks since our re-draw of Kai's blood as the first round got tossed due to "not enough blood"...more likely which means someone in the lab dropped a vile or two of his blood, but in any case, the process of waiting started over. Thursday afternoon, I got a call from the geneticist at Duke. My heart jumped to my throat faster than you can imagine, but at the same time, I just wanted to know answers so it was a relief to see her phone number come up on my phone. The call turned into 3 separate 1-1 1/2 hr conversations that afternoon with her and 2 other doctors who they have now added to our team of genetic researchers at Duke as well as our neuro-muscular specialist in Charlotte, and another 1/2 hr conversation Fri morning. I will try to put in all in a nutshell, as a lot of it was over my head and I can't re-explain it very well, but basically they said the tests that they had done for Ataxia Telangiectasia (AT) had come back inconclusive. They were not able to confirm or negate the diagnosis as they were hoping to, because his genetics testing came back with 2 specific gene abnormalities that they had never seen before so don't know what they are linked to. They have ordered additional testing on those 2 specific abnormalities, in the hopes that the further examination of them might show what exactly those abnormalities are linked to, but this means another 2 weeks of waiting before any more answers on that labwork. Then, assuming that doesn't show anything, they will also do bloodwork on both Kevin and myself to compare our genetics with Kai's to see if we both carry these specific abnormalities. For it to be AT, BOTH Kevin and I must have the same genetic abnormalities as Kai...so we'll continue to wait.
As much as I feel a tiny sense of relief that they are thinking it may NOT be AT now due to the tests not coming back immediately confirming that disease, they have still not ruled it out so it is still a possibility, and we are still left hanging with a lot of unknowns. They have scheduled Kai for an MRI of his brain and spine on Dec.9, as well as a muscle biopsy for Dec.15. We would VERY much appreciate continued prayers for some clear direction and answers from these tests, as the muscle biopsy is a major procedure with a sm 7 yr old child, and will most likely take quite a few months to recover from :( We also may be calling on some of you special friends here in town to help us out with our kiddos, as the MRI is an all day thing, and the biopsy will mean Kai will be spending 2 days at Duke Childrens Hospital...and because it's such short notice, Kevin will most likely be traveling for work both those weeks.
BUT, THANK YOU sooo much each of you who have called, texted, emailed, posted little notes, mailed fun encouragement packages, and most of all prayed. We have SO needed and felt each and every one of your love for us. It's been an incredibly challenging year to say the least, and it's still far from over for us. But God has been faithful, as He always is, and we've made it this far...taking it just one day at a time. There's SO much that seems to overwhelm us .... so we have no choice but to try to just keep giving it over to Him, the ONE who created my sweet Brayden Kai and wove every fiber of his being together when he was in my womb, and HE knows what is wrong with my boy and He's got him in His arms, which I'm so thankful for every day I watch Kai fight through another challenge. We are facing a MAJOR insurance issues come the end of December too, so we are trying not to stress that just yet... one day at a time :)
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