Friday, April 24, 2009

Weekly Update

Hi all,

Sorry it's been a while since my last post. It's been an eventful week for us! We'll start with the main man, Mr. Dax... He's doing really well! He's had a bit of a snotty nose for about a week, but we're blaming that on the weather/sinus/etc... as there's no fever, just snot. Lots and lots of snot... I'm so thankful for the hospital suctioning machine we have... It can suck boogers from his toes, I swear, and there's something so reinforcing about getting out those big super-duper ones... Or maybe that's just me! (BTW-Never in the history of my life did I think sucking giant boogers out of a kid's nose would be the highlight of my bedtime routine...)

Our little maniac is doing some really fun stuff this week :) His new found ability to commando crawl is very neat, even though he often leaves a slug-like trail of snot and slobber everywhere he goes... But he's GOING :) Always the underachiever, he'll have a 10-second burst of speed and adrenaline and crawl 100 mph towards his goal, then... Stop. Lie down. Suck the thumb. Contemplate. Repeat. So the trip across the living room might be quite a commute, but he does get there, just on his own time. That's our boy.

He's also rolling over and over and over and over... especially during diaper changes :)

We have a new PT now and she's been out to see him several times. She seems to be excited abut how well he's doing and how quickly he learns new skills. She feels that all his motor patterns right now are completely normal, just a little delayed. That's exciting for us, as inappropriate motor movements could be indicative of neurological issues, but he's doing everything the way he ought to, or at least a very close approximation of it. (We have reciprocal hip movement now, Yum-Yum!) She also did a tone assessment to check for inappropriate levels of muscle tone, with too much or too little being another indicator of neurological issues. The tone assessment revealed NO abnormal tone :) Take that, crazy Dr. Suchandsuch who told us the only reason Dax could sit and hold up his head was his hypertonia. Daxton: 10, Crazy Dr.: 0.

As far as speech, we now have our home health speech therapist coming out 2x a week to work on speech and swallow. He's only seen her a few times, but we're hoping for good progress quickly. Dax is quite a bit behind in his verbal skills but he's coming along slowly but surely. He, just this week, has begun to say what I interpret as "YAY," as he's smiling and proud of himself when he says it, but it comes out as more of a "aaaaagggghhhhh" in the voice of an old man who chain-smoked for 40 years. It's still ridiculously cute.

We ordered a Baby Signing Time video for Dax at the ST's request, and Dax seems pretty taken by it. We've been working on baby signs off and on for a long time, and hopefully he's actually old enough now to put 2-and-2 together. He's already starting to make the hand motions for "daddy" and "mama" a little more frequently now. And before you ask, yes, he'll be able to talk eventually, but baby signs are always a good place to start.

And just to prevent Dax from getting bored on the one day a week he doesn't have therapy, he'll soon have an occupation therapy eval :) We'll be getting home health OT through the same company that supplies his ST and PT. Can't wait to get started!

So, as excited as we are that Dax is finally getting teeth (!!!) I was a little discouraged today to find his cute little tooth coming in is a not-so-cute shade of brown. After freaking out a while I finally talked to his pediatrician, and she told me it's not uncommon for sick preemies to have discolored teeth, but it's even more likely that the discoloration was caused by the high levels of bilirubin when he was so jaundiced for so long. Not only can a baby's skin become discolored, the developing tooth buds can also be stained, and that's probably what happened. There is no fix for it until his baby teeth fall out and his permanents come in, and in the meantime we need to make sure to brush his teeth twice a day as he's at a higher risk for cavities. It makes me sad, but I guess in the grand scheme of things, and after all the narcotics and viagra he's been on, having the teeth of a meth addict probably makes as much sense as anything else! It'll go well with his chain-smoker's voice!

And just in case you forgot, he was REALLY jaundiced, for a REALLY long time...

Hmmm, and finally, of course next week is the much anticipated cardiac cath. We'll meet with the doctor on Tuesday to go over the specifics, then Wednesday we'll go in for the cath and spend the night for observation. That's when he'll get his ABR hearing test and have the tubes put in his ears, too, so it's going to make for a long procedure, and of course he'll be sedated and intubated for it... Please keep him in your prayers this week!
Oh, and one more thing... Dax is going on his first boat ride tomorrow, and he's taking his fishing pole! We'll be sure to get some pics of him reeling in his first fish :)
Okay, so on to me... Or, more importantly, Mr. Ty. I had my OB appointment today and everything still looks fantastic. My cervix, placenta, uterus... everything... looks great. He has been moving and shaking in there and the ultrasound tech got a picture of him today yelling... Although she preferred to call it yawning. I know better... It was definitely a yell.
As for other news, Shep landed a new job this week, and we're very excited about it :) Couldn't have happened at a better time, either, since it looks like we're getting our house! We haven't accepted the bank's offer yet, but we probably will, and pending no more hi-jinx from their side we will be in a new house soon. Best-case scenario, we can take the next month to paint, clean, move, etc... and then close on June 1st. That, being best-case scenario, will never work out that way, but it's nice to dream. Oh well, will keep you posted!
On to Baby Payton now... Thanks so much guys for all the prayers for her. The cardiac MRI last Friday went better than expected, as I already told you, and then the docs scheduled a cardiac cath for this week. Afterwards they told Payton's mom that the cath surprised them all... The heart actually looks much better than expected, and they'll soon start trying to wear her meds, eventually get her a mic-key button, and then one day, maybe 3-4 months from now, they expect her to be able to go home. It's been the first time Payton's mom has heard that wonderful "H" word in a long time! So please keep on praying for Princess P to get better and stronger and be home by her birthday!

I think that may be all for now? This post has been long enough... Hope you enjoy your weekend, and if you're out on the lake be on the lookout for the cutest boy in America and his Sponge Bob fishing reel :)
Love y'all!
Oh, and here are a couple of pics.....

This is my observant, intellectual look.

This may look like a sweet picture, but Mommy was actually thinking about throwing me in!

Family photo op. Not sure what Dax is looking at?

Yummmmm... Lola thinks the ducks look delicious!

Until this picture, I was 100% sure Shep was Tyler's father. Now I'm wondering if maybe there was a drunken night with Pac-Man or The Joker I forgot about?


Jennifer said...

That is a hilarious u/s photo!!!

And WOW- congrats on all of Dax's accomplishments. I am so happy to hear that he is developing like that! God is so good!

Catherine said...

Isn't it GREAT when you're RIGHT!?!?