Friday, January 16, 2009

Friday's appointments

Hullo,

So today was awesome! We had pulmonology first, and the nurse and doctor both seemed to be very pleasantly surprised at how well Daxton's lungs sounded. They both commented that they would have never thought two months ago that he would be doing so well, and in such a short amount of time. The doctor went on to say that, though he and the cardiologist had talked about him completing a bronchoscopy (to look at Dax's airway) at the same time Daxton's cardiac cath is completed in March, that he feels there will be no need to do so as long as Dax continues to do as well as he is doing. (This surprised me, as it seems most everyone wants to run as many tests as possible... Dax has had every test but the bronchoscopy and a pap smear!)

So that was very good news :)

Left there for neurodevelopmental clinic... Dax had on his sleepy pants and didn't over-perform by any means, but he got to see a lot of his old friends and got "oooohhhh-ed" and "aaaaahhhhhh-ed" over a little. The clinic felt Dax is making progress, and that's good, and they feel he's getting all the services he could need and they're happy with that. They did chart his growth, and, guess what? Our little man is right smack dab in the middle of average as far as his height and weight for his adjusted age, and that is fantastic news... It wasn't too long ago he was only at the 25th percentile...

Oh, and the geneticist stopped by clinic to see us and saved us a trip to her office... She was also pleasantly surprised at how well he is doing, and again reiterated how Dax has no chance of having that genetic syndrome the neurologist from Tuesday wants so badly for us to have.

(I'm still fuming about that ^%#&$#!*&... Oh, nevermind. Deep breath, Mollie. Deep breath...)

I have to step back at times and try to look at Daxton, not as a mommy, but as an outsider, and try to make sure I'm not ignoring issues some of these doctors want so badly for him to have... And I almost always feel that if they would take an hour to spend with Daxton and see what he can really do instead of focusing on what they feel he cannot do... Then we run into doctors who have been following him, like the geneticist, who actually look at the patient, and they remind you that there ARE doctors who DO see the big picture and CAN see past charts and tests... Doctors that will look at the child and say, "You know what, I don't care if the test says he can't do it... He's doing it right now!" And Daxton seems to have a tendency to do just that... He likes to do what they say he can't or won't (great right now, probably not so much when he's walking and talking...) We know there are issues, we're not denying that, but come on now, just look at him!

So that's that. We did hear "Oh my goodness, you're so chubby!" a lot at Centennial today from all Dax's old NICU friends. That's all well and good, but some of the were looking at me at the time. Grrrrr. ;)

Looks like naptime at the Sheppard household... Hopefully for all of us! Love you all, and have a great weekend!

BTW, he's on about .3 liters of flow on his oxygen right now, satting 100%. (That's the lowest he's EVER been! HOLY CRAP!!!) He spent 12 hours on .6 yesterday with his sats staying above 94%. We're getting there!!! (Not too bad for a kid who had a doc say about 2 months ago that she'd never seen lungs that bad breathe without a ventilator... :) My stubborn, rotten, amazing little stinker. Gotta love him!)

4 comments:

The Snyder's said...

ALLL THINGS ARE POSSIBLE!!!!!! YEAH THIS IS SO EXCITING... JUST LIKE WHAT I SAID ON FACE BOOK THIS AM.. WITHOUT HOPE WE GAIN NOTHING BUT WHEN WE HOLD ON TO HOPE WE HAVE EVERYTHING TO GAIN!!!

Mollie,
YOu just don't realize what you and Dax have done in my life.. I will forever be greatful for you two.. May God continue to strengthen you both. I will continue to keep u guys in my prayers.. Have a great nap and blessed weekend!!
Love ya,
Tiff

dana said...

.3 Daxton! Way to go! I know ya'll are very excited to see him down to that. He is proving everyone how strong he really is.

Laura (speaking for everyone!) said...

Way to go Daxton!!!!! I'm glad he's amazing people- I hope this is what he does his whole life!

Catherine said...

Yeah!!!
That streak of "better in person than on tests" will be fun when he gets to high school!!!!
Enjoy every minute!