Blog, what blog?!

Oh...this blog, the one I should be updating more often!!  I know, I suck!  I guess I'll start off by updating everyone on Maddie and the latest with all her medical happenings.  I think I mentioned sometime in December that Maddie had another sleep study and the results were quite improved from her last one, this time showing only mild sleep apnea vs severe sleep apnea as the previous ones had shown.  We met with Maddie's ENT, Dr. Passamani, in early January where I was hoping to hear he was satisfied with her sleep study results and that we could talk about decannulation (taking her trach out), of course things did not go the way I was hoping, but then again they rarely do.  So there is one number in particular they talked about in her sleep study called the Apnea/hypopnea Index (AHI) which this time around was 3.6.  I believe the doctor explained that 5 and under is considered 'normal' for adults, but for children they don't have a normal range.  It's not like they submit random children to sleep studies so they really don't have a baseline to go off of. 

Solution to improve her obstructive sleep apnea even more is taking her tonsils out.  Problem is that her mouth still does not open wide enough for Dr. Passamani to get in there and do the surgery.  We have seen progress since her surgery in December and her mouth opens about 10mm vs the 3mm it used to open.  Dr. Passamani talked to our Oral Surgeon, Dr. Edwards, and we met with him earlier this week.  He said our best bet is to stick with the DynaSplint (see pic below) and try to be as hard core as we can for the next 3 months, and by doing this he is hopeful we could see her mouth opening increase by another 10mm.  At that point we'll follow up with both doctors and see if surgery is an option at that time. 




Drum roll please...Introducing The Dynasplint in all it's glory!



Buzz looking less than thrilled to be doing the dynasplint.

So, I am going to do my best to be consistent with Maddie and make her do her Dynasplint for at least 30 minutes a day, but I know it's not going to be easy.  I am feeling very overwhelmed lately and am having a hard time finding and sticking with a schedule.  Also, Maddie is at the age where she challenges everything I ask of her which is not helping.  She is fighting me on everything from brushing her teeth, doing speech homework, doing her dynasplint, as well as everyday things such as picking up her toys, taking a bath, etc.  This too shall pass...or at least one can hope, right?!