Here I am, finally getting around to an update on all the testing we had done back in early October.
Bronchoscopy One of the things they look at during the bronchoscopy is placement and fit of the current trach. As of now, all looks well. At some point we will need to increase the length, but that comes with an increase in diameter. While he currently has room for a longer trach, he does not have room for a larger trach. The hope is that by the time he truly NEEDS the greater length he will also have room for the larger girth. While a custom trach is an option, it's something we would like to avoid as they are far more difficult to obtain. For now, things look good! There are a couple areas of granulation - not uncommon - that will be watched but which currently pose no danger. ABR (hearing test) As with his previous hearing tests, this test showed profound hearing loss. The good news is he has great bone conduction. This means we can use a bone conduction hearing aid to allow him to hear better what is going on in his environment. Those of us who are with Ki every day feel he hears better than what the tests indicate, but the audiologist says it is not uncommon for kids with hearing loss to find ways to compensate for their loss and even allow them to appear as if they are hearing when they are not. She herself has a completely deaf child who she says, if she didn't know better, she would believe can hear based on his responses/reactions. I was able to attend an appointment earlier this week to choose a hearing aid for Ki. When we are able to actually GET the aid will depend on how long it takes for everything to clear insurance... could be a week or two, could be several months. Ki's ear canals were still too small, and apparently his ear drum is at a very severe angle to the canal, making tubes a non-option at this point. MRI (brain and spine) These scans show stability and even some improvement from previous scans. The new shunt which was placed this summer is doing its job well! ****** All in all, it was a good day with good reports! Follow up for most things is six months to a year away. It was also the least "eventful" trip for Ki. He traveled well! I hope this is a new trend... ;)
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I know I owe an update from the previous testing... and we’ve had another appointment since. Not sure why I struggle so much just getting it done! I will try to do better... Short story is that we’ve had good news. So, yay! I’ll get to the details in another post... eventually. I hope this pic makes up for the delay, at least a little! ;)
Tomorrow (Monday) we head to Children’s for some “routine” testing. Mind you, it’s not routine for most, though it is for Ki.
On tap for our day (all under sedation): brochoscopy, ABR (hearing test), full brain and spine MRIs. Additionally, if his ear canals are now large enough, he will have tubes placed. We’ve been told to plan for 6 hours of testing. Please pray the day goes quickly and without complications. Many of you may not realize that after Tim’s job at Calvary ended in May the job he had lined up fell through. He spent the summer, unemployed, submitting applications to various electrical companies and hearing over and over again that they just didn’t have the work available.
The Friday before he was to begin his second year in the electrical program at SCTCC a job became available at Ryan Electric. He submitted his application and tried to call immediately to see if they would work with him around his school schedule (they were looking for a FT employee). His call went unanswered. The following Monday he went to his first day of classes. Both instructors indicated they would be attempting to squeeze as much as they could into the first four weeks as they suspected school would end up being online after that. Learning a trade isn’t the easiest through online education as the labs/hands-on work are an integral part of the education. When he got home from school he called Ryan Electric, explained the school situation, and let them know he would much rather do his learning in the field than behind a computer. Within the next couple hours he had a face-to-face interview with the owner, and came home with a job! His next call was to the school to drop out of the program... in the world of electrical work it only pushes his timeline to the Journeymen test back by about three months, and this way he GETS paid for his education rather than paying FOR it. :) All summer we experienced an unexplainable peace about his unemployment. He wasn’t eligible for unemployment payments so we were without an income, yet we felt secure in the knowledge that God had our circumstances in His hands. We are thankful for the odd jobs he was able to do over the summer. This job has been such an answer to prayer! Tim is happy, and enjoying the work. Thank you, God, for supplying our every need! This was loss number 2 and 3 for this girl but required some help from mom. She may have cried a bit but got over it quickly, and now she has a cute little lisp. ;) There *should* be a fourth one out, but if you look closely you can see a tooth that came in behind a baby tooth (bottom right - your’s, not her’s). It was the same with the other bottom tooth but I managed to get that one out while it was still manageably loose. Unfortunately, she refuses to wiggle the other one and it will likely not come out until its neighbor gets loose as well. *sigh*
As a side note... if you like lettuce, we have plenty to share!
Not only do our nurses love Ki and take great care of him, but they are quite accommodating to his siblings as well. 😊💗 This particular style was courtesy of Phoenix and Tempe.
Sitting up in his Squiggle like a big boy! He’s pretty proud of himself, and he loves the animals on the toy bar.
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AuthorHi. My name is Kristin. I am wife, mom, friend, Christ-lover. Thanks for stopping by and sharing in our story! ArchivesCategories
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