Saturday, March 28, 2009

Weekly Update

So, another week draws to an end, and all is well. It was pretty hard for us at the beginning of the week as Aubrie and her short life were at the forefront of our minds, and we rehashed all the questions that we'll never learn the answers to. We did spend a lot of time talking to Daxton about his big sister and how we'll celebrate her birthday when he is older and better able to understand it.
Towards the end of the week we had our typical run of doctors' appointments, starting with mine on Thursday. Everything still looks great, and there's no reason to think Tyler won't be staying put for a long, long time.

I can't help but laugh when people tell me maybe Tyler will be our "easy" baby, as I can already tell he'll be our busy child. You know, if you take away Dax's medical crap, he's such an even-tempered, happy baby. He cries when he's hungry, or if we wake him up, and has a whine he has perfected (sounds like "nnnmmmmmmeeeeeeeeeeaaaaaaaahhhhhhhhhhnnnnnnmmmmmm and means 'Beth, hold me!'") but in general, he's so EASY. As opposed as I am to baby leashes, I'm already calling Tyler my leash baby... He's already running laps around my uterus... Thankfully it's all fenced in!

While I'm thinking about it, a number of people have already told me that we can't follow a name like "Daxton" with a normal name like "Tyler." We actually had Tyler picked out if both the twins had been boys, but we plan on calling him Ty for short, if it makes y'all feel any better (not that we care, particularly;P) We always thought "Dax" and "Ty" sounded good together, as in "Dax and Ty, those Sheppard boys." The big plus side? Short names to learn to write!!!

So, moving on, Dax had a pulmonology appointment on Friday morning, and they remain super happy with how he's doing. He hasn't made any big gains since our last visit, but he continues to sound clear and remain on a low amount of oxygen. They made no changes, and we'll continue to try to wean his oxygen as he lets us. We thankfully still haven't been sick, and that's such a miracle. We won't go back to see them now until after Dax has his cardiac cath, etc on April 29. In four months time, we've gone from seeing pulmo every 2 weeks to every 6 weeks. Very exciting!

From there we stopped by the Vandy NICU for a few minutes to visit with some of Dax's old nurses and therapists, and he drooled and smiled appropriately while they talked about how big and handsome he is. We saw Payton's mom while we were there and I ran back to see the princess for a few minutes. I can't believe how big she's getting! Over 9 lbs now, and she looks great with her trach. She's supposedly blind, but sure does love looking at herself in the mirror an awful lot for a baby who can't see. It IS possible that she's just that big of a diva, but also possible she's going to continue to be a "prove them all wrong" baby. Y'all keep on praying for her!

Payton's mom is hoping they'll be able to get a g-tube placed sometime in the near future, and then after that, it's just weaning off meds and going home. She's still got some significant pulmonary hypertension issues, so keep praying for that to improve as that's one of her biggest hurdles at this point. I'm including a pic of her... So sweet!

By the way, Baby Kinsley has been back in the hospital again, too, since Monday, and is thankfully on the mend. Please keep on praying for her and her lungs, and that she can have a few months with no bugs! Here's a pic of her, too, just so y'all know who you're praying for! How cute is she?

So, back to Daxton, on Friday we also had the baby stress test. Dax had to get stuck a couple of times before the IV took, but he didn't even shed a tear with the first few tries on his left hand. There was some wailing and gnashing of teeth when she moved to the other hand, but he still calmed down fairly quickly. I do have to brag on the ACTH test nurse... She was PHENOMENAL with him, and knew all his favorite songs and made him coo and smile the whole time she worked with him. She definitely has a special touch. At any rate, they drew lots of blood and we'll find out sometime next week if Dax creates enough cortisol under stress, although I'm not too worried about it. I think the ACTH test nurse was more stressed than Dax throughout the test, though... No matter how she secured and wrapped his IV, he was able to get to it within moments and rip off the adhesive. Not bad for the kid we were once told would have issues with purposeful movement :)
As for the hormonal panel drawn last Friday, everything came back normal. *Big sigh of relief.*

So, in addition to that we had a couple of PT sessions this week and Dax did fine. The PT continues to work on skills that are a little ahead of where he is, as he seems to be learning so fast that we have to stay a few steps ahead. They've been working hard on transitioning from lying to sitting, and sitting to crawling, and sitting to standing, and all those reversed, as we try to get Dax to loosen up those hips. They're also working on crawling appropriately instead of scooting backwards... but what's the fun in that?! We also continue to work hard on Dax sitting for longer periods and balancing himself better, with one of our bigger obstacles being that he prefers to be standing up all the time rather than any of these other ridiculous activities.

On a sad note, our PT is officially leaving us for a position in outpatient therapy. (Thanks, crappy economy and budgetary cutbacks...) We're going to miss her terribly but plan on keeping in touch with her as she's part of our big, extended, colorful, wonderful family Dax has helped us accumulate in the past year. Please keep her in your prayers as she undergoes knee replacement surgery soon and has to get therapy of her own :) Let's hope her PT is as good to her as she has been to us! Maybe they'll put her in boot camp, too :)

We will have another PT starting with us, and we've met her and I like her too. Many of you know what a creature of habit I am, though... So hopefully I'll adjust quickly!

On a different note, we will finally be getting in-home speech and swallow therapy soon! We head in for a swallow study at Vandy in a couple of weeks so we'll have a good baseline going in. I'm thrilled... We've gone 4 months now with no speech therapy, and even though he's made great gains, you always wonder how much more he could be doing... So, we'll keep you posted!

So today I got Dax up and dressed early and we headed into town to get his picture made with the Easter Bunny. My friend Amber is a photographer and she was doing the pics and made sure we were first so we didn't pick up any cooties from other kiddos. Dax refused to smile, but did manage to relieve the bunny of a few chest hairs :) Hopefully we'll end up with a good pic or two :)
We left there and went to the park to beat the crowd and take our first test drive in a big boy swing! Dax wasn't quite sure what to think at first, but he caught on after a few minutes. Luckily there was a place on the swing where I could hang his oxygen tank so it could swing with him... I'm sure that's what the manufacturers were thinking when they designed it :) At any rate... It was very sweet, and he came home, ate, pooped, and took a 2 hour nap afterwards. Been a big day!
Finally, we're so excited that Ma Mills is having a birthday party/coming out party for Dax for all our MS friends and family. Everyone has been so good to us through this past year, and we're so thankful and can't wait for Dax to show off his chubby cheeks and thighs. If anyone wants to stop in at her house on April 11, just let us know! Everyone's invited, as long as you gargle with bleach and spray down with Lysol first :)
Guess that's all our news for now... We love you guys and appreciate all the continued support!

1 comment:

Laura (speaking for everyone!) said...

Whew! That was a long one! Glad that things are rocking right along for everyone- Dax is destined to cause quit a few suprises in his life I think!

I got the same response about naming this baby Conner after having such a "plain, traditional" name like Joel. It's our babies and after all the stress we go through- we can name them whatever we want!

Hope Dax's stress test turns out well!