Soooo many of you are asking for updates, and I don't even know where to begin, so just wanted to write a brief one here and then ask for some prayers...again!
So a few weeks ago now (3 to be exact), I took Kai back to his geneticist at Duke. After a 3 hr appt, the dr looked at me and said "ma'am, you need to understand it will probably be 20-30 years before we have any answers on your son because his case is so unique." Talk about discouraging! 20-30 years?!?! Yep, that's what he said. See, I thought drs went to years and years of school to only dream of having a case that should be on "House" come through their doors, but apparently not. I have figured out the majority of them just get comfortable with the easy stuff that they can just do a checklist for and diagnose from the text books, and the rest they don't feel like taking the time or effort to research and figure out! So, we left Duke, pretty discouraged and upset that this dr, who is supposedly one of the best in the country in his field, was basically giving up.
This past week, we were scheduled to go back to Charlotte to see our Neuro-muscular Peds specialist there. She's the one we have seen once before, and really liked. She took her WHOLE day with us last time, and set up TONS of follow up tests for Kai last time to be done at Duke so we wouldn't have to make the long trip back and forth every time. Then, we followed up with her this past week for another eval and to line up more tests. Long story in a nutshell, once again she was wonderful and spent 2 full hrs with us. She did some lab work while we were there, which she told me would take 2 weeks to get results from, and that she was also lining up some more MRIs of his brain and spine, and then would be scheduling a muscle biopsy to find more clues to point to what was going on. That was Tues when we saw her. I got a call Thurs afternoon from the dr herself, and she started off the conversation with "do you have a few minutes to talk"...so I got a sick feeling right away. She went on to ask a bunch of "odd" questions, all of which I answered but couldn't make sense of why she was asking. Then she said they got Kai's lab results back that they did Tues (which she had told me would probably take 2 wks!). She went thru all these ones that came back normal, so I was starting to think it was just another conversation leading back to "we just don't know what's wrong with your son" like I've had every time with every specialist over the past year...but then came the curve ball. One of Kai's tests, his AFP, came back 5x the normal level. In pregnant women, this is the test that is used to determine if you have a possibility of having a Downs baby, but in kids and others not pregnant, this is big in determining specific "diseases". In Kai's case, they were looking at this to point towards some specific types of Ataxia diseases. With his SO extremely elevated, they are very alarmed and concerned. This is pointing towards Kai having "Ataxia Telangiectasia" (don't worry, I had to google it too)...a very rare condition that is extremely progressively deabilitating and usually ends life early. Needless to say, we are beyond broken and terrified right now. I'm trying not to be anxious, as they haven't confirmed it for sure yet...those tests are ordered "expedited" now...they usually take 6 months to get results from but they have ordered them on an "expedited emergency" order and should have results in the next 3 weeks to confirm or disprove this diagnosis. But we are needing prayer. Please join us in praying for clarity, and for miracles to happen and that this diagnosis for our Kai would come back false. I know we are praying for answers, and we are still desperately praying for those, but we are also begging God to not put this as the final answer for our boy. And if it is, we will need prayers for strength for each day to be able to accept this and move forward, knowing that God loves our Brayden Kai SO much more than we could ever love him. HE already knows my boy inside and out, and HE knows what we can handle. So thank you in advance for your prayers! I wasn't going to post this at all, but just feel like right now, the more prayers the better, and if you see us just having a "bad" day...you will understand a bit of why our anxiety levels are through the roof right now :)
My boys :) kai just finished a 1.5 mile run...thayne cheered him on proudly
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