Here is a link to my post from one year ago today…
https://louckslife.weebly.com/blog/grateful I got quite tearful re-reading what I had written then, just one day after nearly losing him. We are still so very grateful for the gift of life for Hezekiah. He is growing (not so much physically, but in other ways) and changing, making slow but steady progress. It’s exciting to watch as God continues to work out this miracle. I know I don’t post often… to be honest I wonder how many actually read, so it makes it hard to put the effort in. And now that I’m not on FB and don’t have an avenue for sharing when I do post I’m not sure anyone will read! I mentioned before that I had an idea for making sure those who are interested get notified when I post. Perhaps over the summer I will find time to put that together… In the meantime, if you’re here reading please drop a line in the comments!
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We’ve had two appointments added to our schedule for this week... both semi-unexpectedly. The second appointment we added was for his hearing aid and will occur on Wednesday. When I met with the audiologist last month to pick out the hearing aid she couldn’t give me any kind of timeline regarding when we might get the aid ordered. I was told it could be a few weeks, or it could be several months. Everything was dependent on insurance. So, we were in standby mode. Late last week I got the call that his aid was in and ready for fitting! I tried to get that appointment for Thursday, as that’s when his other appointment was already scheduled, but the audiologist is in surgeries on Thursdays and unable to meet with us then. It will be interesting to see if/how his vocalizing changes when he can hear more clearly. It will also be interesting to see how overwhelming his sibling noise will be once he can hear their true volume. ;) Our Thursday appointment is for a quick brain MRI to check his ventricles, followed by a meeting with the neurosurgery team to go over results. During his last visit with the neurosurgeon it was mentioned how nice it is that his fontanel is still open as it gives us kind of an indicator to monitor inter-cranial fluid pressure. Well, in recent weeks the fluid there has not been fluctuating as much as normal, and it’s begun bulging more. There have been other minor “symptoms” that tell us it’s time to get things checked out. While I’ve been praying against it, I have a sense that this is an indication another revision is needed. Of course that will entail a hospital stay. *sigh* So, on Thursday I will pack a bag and hope not to need it!
Pray for Ki, boldly asking God to fix the issue with the shunt so we don’t need another surgery. Pray for our travel in the morning both Wednesday and Thursday; clear roads, little traffic, and no complications from the littlest passenger (he likes to delay our departures and keep trips “interesting”)! While you’re praying, please include our friend Esther. She is a precious one month old with TD and could really use some miracles. Her story is found on Facebook here: https://www.facebook.com/estherroselea/. I had the privilege of meeting Esther’s mom In person when I went (alone) to the hearing aid appointment last month. You can find pictures of that meeting on Esther’s page. :) 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... ;) 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. 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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