Monday, November 9, 2009

An overdue update plus pics

So I've been skimping on the baby updates lately... Shame on me. We've had several appointments so I'll start at the beginning and work my way forward...

You've already heard about the ever-so-helpful eye appointment, so I'll spare you that one... It was on a Friday. That following Monday both boys had well checks at the pediatrician.

Tyler went first. The doctor called him boring other than being "too fat to get health insurance in Colorado." :) He was approximately at the 50th percentile for height and head circumference, and 100th percentile for weight. He's meeting all his milestones right on target and looking great!

Daxton was next, and she also said he was becoming boring. You have no idea how magical those words can be!

She was particularly pleased with how appropriate Dax's muscle tone is... It's perfect. With all the brain issues he has that's nothing short of a miracle!

He's fallen back off the growth chart for his actual age (19 months), but is still hanging out on the low end of the growth chart for his corrected age (15 months.) Other than that, she remains amazed with how well he is progressing!

The following day Daxton had a cardiology appointment. (We absolutely adore our cardiologist if anyone in the Nashville area is on the market for a pediatric one.) She completed the exam and echo and all looked great. The pulmonary hypertension remains controlled and his ASDs are a tad bit smaller. She's going to allow Daxton to continue outgrowing his Viagra rather than increasing it as he gets bigger, and once it's determined to be obsolete she will DC it all together. She said the plan now is to continue letting him grow and watch his ASDs to see if they close on their own or we will close them when he is older if no problems arise with them in the meantime. Soooo, no procedures to worry about in the near future!

And we don't have to go back to see her for THREE months :) I'm so proud of him!

Daxton and I went to the pulmonologist the following Tuesday, which would be last Tuesday, and we got another good report there. The doctor recommended not weaning Dax's O2 aggressively at this time, but rather just taking our time and not pushing the issue. He's off his O2 all day now and only wears it when he's sleeping, but he still seems to need to need his nightly fix. He's only getting a measly 1/16th of a liter of flow, so we'll feed his little O2 addiction as long as we have to...

They talked about weaning his FloVent inhaler, but the doctor was a little hesitant since Dax does have a chronic cough. They're going to wait until we get the results from his next swallow study (which is this Thursday) to see if the cough is more reflux or lung junk, and then we'll proceed from there.

And then after the swallow study we get to go pick up Dax's much anticipated goggles :)

And that brings us to today's visit to the pediatrician with Mr. Ty. He apparently gets jealous of all his big brother's appointments, so he opens his own bag of tricks so he can have some too.

This time we have a bleeding mouth. It didn't worry me at first because I figured it was related to teething, and we've had a few other signs that he might be working on some teefies... But Sunday night his mouth bled more than usual, and so this morning I called the pediatrician to see if it was normal. Of course, you couple bleeding gums with a history of easy bruising and the doctor wanted to see him.

The doctor completes an exam and asks a few questions, then he turns to me and says...

The good news is there are no scratches, lesions, or sores. His gums look good, there are no teeth breaking through, no signs of any viral infections causing the bleeding. The throat looks fine.

The bad news is his mouth is bleeding, and we don't know why or where.

Yay.

He said that sometimes kids with platelet issues bleed from their mouths just because saliva makes it harder to clot than it is with the rest of our body. He doesn't know that we for sure have a platelet problem, but he says there are other tests the hematologist may be able to run to check for other issues she didn't test for before. So at any rate, we're supposed to keep an eye on it and if it gets worse they're going to send us back to the hematologist sooner rather than later. Hopefully it will just go away. I'd prefer option 2!

Moving on to milestones, Ty is so big and strong... He's pushing all the way up on his hands when he is on his belly, rolling from belly to back, and trying to become forwardly mobile, although he looks more like a beached whale than an agile baby.

Super, super cute though :)

Daxton is still refusing to walk, but he is standing a few seconds on his own. He's making more and more noises, but still no "mama" or "dada." Lots and lots of squeals though! On a super-exciting note, he's FINALLY started to clap his own hands (he's been clapping ours for months.) It's in super-slow-mo and he misses sometimes, but it's very cute. He's also starting to mimic us a little better. He's discovered putting balls/blocks/whatever he can find into bowls/buckets/cups/whatever he can find is way fun, and throwing objects over his gate and crib is the best game ever.

It's progress... Slow, but steady...

So, phew, now that all that is over, I can get on to the good stuff... Pictures!

First, here's The Demon in his Halloween costume...

How precious, and how appropriate!!!

And here's Big Brother dressed up like his BFF, Clyde.

Sweet little monkeys!

And just for posterity, I feel the need to throw in a few pics from last Halloween. Daxton had his g-tube placed and his hernias fixed on Halloween day, so we had to play dress-up a little early... He was awfully cute though :)

On the vent for a while... Very few treats, but I had a few tricks up my sleeve!!! Thankfully Clyde stuck with me through it all :)

Even Superman needs a nap every now and then!

Yes, I was a little stinker... 30 calorie formula + the max amount of human milk fortifier will do that to a boy!

Hope you all are doing well!

4 comments:

Melissa said...

I remember Dax's costumes from last year. I loved his air freshener costume, and i love his monkey one from this year.
I am glad that he is doing well.

Daxton's Personal Assistant said...

Thanks :) He's awfully cute no matter what he's wearing!

melbhaber said...

Hi there - does Dax get sedated for his echos? Daphne is getting another sedated one in January, and I dread keeping her npo for 6 hours. She then finds a way to gag the sedative and wakes up mid-procedure. We are also outgrowing the Viagra and keeping the O2 at night. So glad Dax is doing so well.

melbhaber said...

I'm so disgruntled about the sedation! Our cardio says D is too feisty and if she moves they can't adequately measure the flows. When she had the big VSD, I could understand that, but now it is patched...I was stupid enough to take her for a blood draw after the last one and being npo for so many hours affected her kidneys. I may have to plead before the next one ;-)