Sunday, December 9, 2012

Still Here!

We are still here, despite the lack of blogging activity lately. This time of year is always insanely busy, and our activities in real life have precluded my ability to keep up with this blog.

I have also reached the maximum photo limit for this blog. I'll have to start a new one if I want to upload any additional pictures. Nolan looks exceptionally cute lately - you'll just have to trust my written word on it! *Update - I broke down and paid for the extra storage. See? He's really cute.

As for updates, Nolan's eyes are doing really well. His amblyopia continues to improve and we are happy to have a six month reprieve from the pediatric ophthalmologist's office. I do need to get his new prescription filled, so we will do that next week.

We also had his follow-up appointment via the ENT. Things are going well with regard to his ears. He's been infection-free for a month, which is fantastic. We will have to discuss the possibility of another airway surgery in the spring - we have another appointment in February to make the decision. In the meantime, he's going to have another sleep study/C-Pap titration in January. Since Matt often snores, we're having a sleep study done for him at the same time. Killing two birds with one stone.

We are also going to get aided testing via a different audiologist, since our current audiologist simply refuses to do aided testing with hearing aids. It's beyond ridiculous, so hopefully this new audiology group will perform that testing on a regular basis. They can't do cochlear implants, so if we decide to go that route, we will need to find someone else. Our area isn't the best for medical or audiology care.

His stomach issues are still frustrating - he's doing really well with the overnight feeds, but we aren't seeing any progress with his daytime eating. We'll take it as it comes - as long as the overnight feeds are enough to maintain growth, we're golden. Our ENT did mention a gastric pacemaker as an option if his stomach function ever declined in the future.

We've been having a lot of issues with our insurance company and getting replacement Mic-Key buttons. Our insurance company only allows a new button to be issued every 91 days. Unfortunately, not every Mic-Key lasts a full 90 days. Nolan had a balloon burst on one in September. We replaced it and he had a good one from September - December, when we had to replace it due to clogging and sheer age (the balloon developed a slow leak). Our insurance company told us we couldn't get a new back-up until January. Fortunately the Home Healthcare Company sent one in our monthly shipment (there was a lot of anxious whining on my part to get them to send one). We're three hours from URMC and we don't really have a lot of options if it falls out and we don't have a back-up. Our insurance company will get to pay for surgery instead of a button if it happens.

I am REALLY glad the HHC sent us a backup button, because Matthew started screaming, "Nolan's button is GONE and his tummy is bloody!" Yep. Another Mic-Key failure. The balloon burst on this one, too. The same lot number as the one that burst in September. I am so frustrated. I was very glad to have the backup, and we managed to get it into his stoma (with a bit of a struggle - the stoma starts to close up very quickly).

I'm starting to wish we had gone with a Bard button. It has to be changed in the OR, but at least it lasts a year or so!

I have to start thinking about getting a new blog - if I do, I'll link to it from a new post. Pictures are sometimes necessary!


Angela K. said...

You could set up a flickr account and use that to post pictures from. That's what I do. The free account only lets you upload a certain number of pictures per month, but you could check it out.

dlefler said...

I'll have to try that - or pay the blogger fee. I think it is relatively inexpensive. Worth a try, anyway!

Kyla said...

I am definitely the exception to the rule, but I LOVE our Bard. We did have a year where we got a couple of duds, but even the "duds" lasted several months. Her current one has been in almost a year at this point. Changes are a hassle, but I think it minimizes stress at home and in her daily life not to worry about bursting balloons.

dlefler said...

I did call Kimberly Clark and there are problems with his model of Mic-Key - they're sending two replacement buttons in the mail (overnight). I'm very grateful - we're going to send in the broken ones so they can do an investigation. Both broken buttons are from the same lot, so I suspect there is a weakness in all of those balloons.

Eleanor Jones said...

Nolan is an adorable little guy! I cannot understand why the audiologist will not do an aided hearing test. Hope you guys get everything straightened out soon!