MICHELLE SAID....
I know it’s been a while since our last update…my apologies for that! Our family made a big move to Chapin last week so it was crazy but we all have a place to sleep and a place to eat now so I consider that progress! It has also been an eventful few weeks for Kayla Reese! In late May we finally had the opportunity to meet with the geneticist and were eager to hear what she had to say. Honestly it was pretty uneventful…because Tetrasomy X is so rare, everything she had to tell us was straight from literature she had read…the same stuff we had already read! We talked a lot about her potential learning difficulties, her need for further tests such as an echocardiogram, renal ultrasound and vision screening, as well as hormone challenges she may face. The geneticist said she had never seen a case of Tetra X before but was going to work with us and follow us for the rest of Kayla Reese’s life. In addition to the geneticist, we also had to take Kayla Reese to the hospital twice…the poor child knows the hospital all too well! The first trip was for sedation for an MRI of the brain. A few days later we visited the neurologist for those results which were fair, not great, but not horrible. He said her brain was not growing at quite the rate it should, and that there wasn’t as much fluid flowing as she needed. BUT it wasn’t so severe that he saw a major issue with it. The plan is to repeat the MRI in December to see if there are any changes and go from there. The week following the MRI we took her back to the operating room – this time to get her adenoids removed, ear tubes replaced, and a hearing test which actually tested her hearing through the nerve in her bone. Surgery went well and hearing test results were pretty good too. The nerves in her bones were functioning perfectly, but she does have some conductive hearing loss, more in her left than in her right. I am waiting for the follow up to find out exactly what she can and can’t hear, but knowing her nerves are great is fantastic news!
Enough medical stuff for ya’? Kayla Reese is really progressing well. Just in the past few days we have seen her bear weight on her arms and even try to move her knees in the crawling motion!!! VERY exciting news!!! We’ve also discovered she LOVES the water and it is good therapy for her legs, so the doctor says mommy and Kayla Reese MUST hang out by the pool all summer! (wink wink!) Otherwise, we are busy working to find therapists in our new town to cover speech, physical and occupational therapies. The good Lord has already provided us with a wonderful Speech Therapist and I trust in Him more good therapists are in our future. We are also waiting on dates for her big tests – the echocardiogram, renal ultrasound and vision screening. I’ll keep you posted on those dates as they draw near – prayers are always welcome and greatly appreciated! Oh, and prayers that I will actually be able to run the 13.1 miles this half marathon requires would be nice too! John and Susan are kicking my TAIL!!! But wow, what an inspiration they are!!! And don’t forget to buy a shirt! Can’t WAIT to see them all over town!!! (DETAILS COMING SOON!)
