Friday, July 9, 2010

My "once-weekly-but-now-I'm-lucky-if-I-write-it-monthly" update

Sooo, the boys are in bed and I'm eating apple pie a la mode (in a bowl, since my friend Brenda says nothing "round" has calories, and this is the best I could do ;) and I'm going to see if I can belt out an overdue update before I pass out on my laptop! We've had a busy month or so, and that includes the TWO WEEKS I was finally able to take off of work for my first real vacation time in years that didn't revolve around a medical appointment or procedure or pushing babies out of my hoo-haa. So, it was niiiiice.

The boys are doing great! They're both just turning into little men right before my eyes, and it makes me so happy and so sad. Every now and then, I'll think, maybe it would be nice to have another itty bitty baby around the house... But that thought passes, and it passes FAST! :)

So here's the scoop:

I took Dax in about a month ago for his procedure to have his tubes in his ears replaced, you know the one I was so excited about because they weren't going to intubate him... Well, after anesthesia looked him over they told me they'd changed their minds and they were going to intubate him, after all. I understood their reasoning, but after all was said and done he had a really tough time coming off the vent and became very agitated as the sedation wore off, and it ended up being one very long, very un-fun afternoon. In the NICU, parents get very accustomed to seeing their child turn blue... But I was way out of practice on that one! During one of his bad episodes I was holding him up on my shoulder trying to get him to start breathing again, and I managed to catch his Mic-Key button on something and yank it out, subsequently leading to the emptying of all his stomach contents (which the best I could tell included mostly fluid and blood) into my lap. Thankfully, after about three hours he had calmed enough for me to change my undies and soon after he was keeping his sats high enough that I could cart him on home. It wasn't a majorly disastrous day, but it definitely wasn't the picture perfect procedure I had hoped for.

On a brighter note, the ENT vacuumed all the mud out of his ears and popped the new tubes in, and Dax then passed his ABR. Perfect hearing :) That's my boy!

Right around that same time, Dax starting going to outpatient Speech and PT at a local therapy center. We've been really happy with the new ideas and suggestions they have for us, and we look forward to starting OT at that same center soon. Five therapy sessions a week will keep us fairly busy, but we're already seeing so many improvements!

We're still seeing a vision therapist once a month, and she has great ideas for getting Dax to maximize his functional vision. (I still think ALL men need a vision therapist :P "Where's my socks? I've looked everywhere!")

We also started both the boys in a blended early intervention preschool. It's only two days a week, and the boys both seem to be doing really well with it. Dax will only be able to stay there until he turns three, but luckily we have several more months before we have to cross over that particular bridge.

Other than those major areas, Dax has had several recent and uneventful doctors' appointments... We followed up with the ENT, who said the ears looked great post-surgery. He and I did talk about Dax's paralyzed vocal chord a bit, and we're going to continue giving Dax a few years to give his body time to try to compensate, but once he's more medically stable there is a surgery the doctor can perform that will bring the paralyzed vocal chord over a bit so Dax will be able to talk louder and swallow better... But for now we wait and see.

We had our regular visit with cardiology and Dax's echocardiogram looked great; the pulmonary hypertension is still well-controlled and his ASDs (holes in his heart) are continuing to grow smaller in size. So, do we have another heart surgery in store for us next year to close it? We wait and see. In the meantime, we stay on the same Viagra dose until he outgrows it and see if he can continue to keep the pulmonary hypertension at bay.

We also had our regular visit with pulmonology, today, actually, and they're still happy with where Dax is. We had to turn up his overnight oxygen following his recent surgery and subsequent crappy lung episode, but we've now weaned back down to where we were previously and will continue to try to wean him slowly over time. Seems to be that slow and steady is everyone's approach when it comes to Dax, and I guess that is how it should be.

And, I'd much rather hear "no change" than "we'll try this new med now" or "it seems to be getting worse." Oh, yes, we'll take all the "no change" we can get!

And I guess that's all the technical stuff.

As for the regular developmental stuff, this is where we are:

Dax is taking 9-10 steps at a time. He doesn't do it all the time, and they're not always very pretty, but they're beautiful to us :)

Ty is cruising away, and bridging the gap between two pieces of furniture. He'll let go very, very briefly at times, but that's rare. He can hold my hand and walk with me now, and he crawls all over the place and up and down the stairs. Absolutely amazing to me, how he does all this without any formal teaching :)

Dax is really making some progress with his signs, more so than he is with speaking right now. As far as spoken words, he does say a few inconsistently, but we have a consistent, functional use of the signs "up," "Mama," "Dada," "play," "eat," more," "drink," "I want," and "bye," and an inconsistent, but occasional use of "love" and "all done." I have seen him actually sign "More I want eat" which is a pretty decent accomplishment for him, and tonight while we were eating I asked him what he wanted, and he signed "More love." :P Yeah, because that kid is seriously underloved!

TyTy can also sign "more" and "eat" but only when he is competing for what his big brother is eating :) Ty has several babble words in his repertoire, but my favorite new word of his, and the one he repeats most frequently now, is "deux."

Yes, "Deux." Not "do" or "dew," "deux." How do we know? Because it is said with a perfect French accent. We haven't yet figured out if it translates into some random "d" word, if it's actually meant to be translated into "two," or if it has something to do with poop. We'll keep you posted on that one.

Dax is branching out a lot and eating a whole variety of new foods. Among his favorites? Green veggies, especially broccoli and spinach, and today's winner: green tomato casserole with fresh green tomatoes from his grandpa's garden. Among the things he will not touch? Fresh fruits. Goooo figure. We're still using the g-tube for the bulk of his calories and to keep him hydrated. Still no thin liquids by mouth.

Ty... Well... Ty has yet to meet a food he doesn't love. And that includes bugs, chalk, and lemons. Escpecially if they're covered in ketchup! And we FINALLY convinced him that sippy cups are not so bad, and he now only gets an actual bottle every other day or so, and the rest of the time it's sippy cups only.

And I guess that brings me to weights and measurements...
Dax is sitting steady at 24 lbs, and he measured 32" tall today.
Ty... I'm not honestly sure how tall he is, because we haven't had his one-year checkup yet, but as far as weight, it looks like he's about 25 lbs give or take a poopy diaper.

Which reminds me... Ty will be ONE this month. How did that happen?!


And I suppose that's most of the high points.

It was really nice to get to travel to MS to visit family over my recent days off. It's fantastic to finally be able to get out and take a fun trip that isn't rushed, especially now that Ty is getting older and can ride in the car for a bit without screaming. the. entire. time. It was fun to see the family and parade my handsome little men along with their cousins through my hometown's 4th of July parade (which I refer to as "The Parade of Grandchildren.") Mom's been wanting us to bring the kids down for that since I was pregnant with the twins in 2007, and I'm glad I was finally able to get them down there for it. Fun times! Hopefully over the upcoming months we'll be able to get out and do some more visiting before we end up in cold, flu, and RSV season again. (It'll be here before we know it!)

And here's a couple of pictures of my little guys, purely for your viewing pleasure :)

Dax, drunk as a skunk before his surgery.

TyTy's favorite lunch: Ma Mills' homemade cookies!

                   Petting Uncle Jon's "donkeys." (Don't tell him they're horses; he loves making donkey noises!)

Seriously, blocks are his FAVORITE toys now!

Sleepy TyTy

TyTy hanging with his Great Grandma Mills

Night, all!

1 comment:

mwmills said...

We are so glad that y'all are now able to travel to our house. Be glad when Shep can make the trip with y'all...but when he does then I won't have an excuse to meet you for a little shopping. But I win either way. I was really glad and the proud Grandma when all the grands were in our little parade. Can't wait til Ty and I can work on our sign language again. They are both too cute. It really makes me feel good for them to recognize us now. They are just precious. Great to be a Grandma!