Nolan's usage of the C-Pap is increasing - his "short" nights with the machine end at about 2:00am (he wakes up irritable). His "long" nights last until 7:00am (or later) - which means he is sometimes getting 11 hours of clear breathing.
The results are incredible. We have never seen Nolan with so much energy and life. The fatigue issues have disappeared, and he has energy through the entire day.
Sometimes he has TOO much energy
He also has rosy cheeks, and a happier attitude. He doesn't cry all. day. long. He giggles, plays tag, and can actually walk through the store without having to be carried.
At this rate, he is going to grow like never before. His little body is finally able to produce the right amount of growth hormone, and he is getting the proper amount of REM sleep (and oxygen) at night. I can't state how much I love this.
He does have a chronically runny nose and some chest congestion, but the trade off in energy is well worth it. Grow, Nolan, Grow!
As a side note, we did get his microarray results about a week ago. I was waiting for the official written report in the mail, because over the phone they told us that it was "normal, but with copy number variations (duplications) of unknown clinical significance." The report came in the mail, and it simply says, "normal." So essentially, his chromosomes look fine and aren't the cause of his problems - though this doesn't rule out a point mutation or other genetic issue below the chromosomal level. And those duplications may prove to be "problematic" in the future (i.e. they may find another child with the same physical issues and the same duplications, which would give the duplications clinical significance).
Since Nolan is healthy at the moment, we don't care about the "cause" of the problems as much - we feel like we have found our solution to his apnea and fatigue in the C-Pap therapy. Hopefully nothing new will pop up - and if it does, we'll just take it as it comes.
In the meantime, we are celebrating and loving life with our energetic little boy!
8 comments:
Has Nolan seen a cardiologist at all?
He saw a cardiologist last year (because of the severity of his apnea, they wanted an echo to see if he had an enlarged heart or if he was developing cor pulmonale). No issues were found on the echo or the EKG, so we had a nice, happy normal appointment with that last November.
The geneticist heard a loud murmur (and the pediatric resident heard it, too), but no one has heard it before or since. So who knows? His echo from last year was clean and our ENT can't hear the murmur now, so we're just watching and waiting. If the murmur returns and becomes more constant, we'll take another look-see. The geneticist thought it was mitral valve prolapse from the location... that is normally diagnosed in teenagers (although it is a congenital condition, I guess it manifests later in life). We'll take it as it comes. It wouldn't surprise me if he got older and that issue comes back to say "hello."
Grow, Nolan, grow!!! So great to hear good news! He must be feeling so much better.
That is awesome! Glad he is doing so well!
Knock on wood!! Good news on that one ,grow quick Nolan.Glad to hear about it.Congrats.
Oh, my gosh, that's wonderful news! So glad to hear it for y'all!
love the photos!happy to hear that he's doing so well now.There's nothing cuter than an energetic little boy.
GOOD NEWS!!!
Julie
Post a Comment