braces

There they are. Custom-fit ankle supports. As you can see, they just slip into his shoes, and they really seem to work. They keep his ankles positioned correctly so that he will build the right muscles to strengthen them. They keep him from some of the bad habits he was developing before, like gripping with his toes to compensate for his weak ankels.

He seems to like them. I think he likes the added stability. They don't keep him from any of the things he can already do, like scooting or standing up.

So far so good! I'm excited to see how this helps him get stronger.

fun moment

My kids side by side in the kithen gleefully watching fireworks out our back door. Too cute.

CRAWL!!

Athan crawled! :) Not far. And not often! But for the first time ever, he was up on all 4s, and then made a bit of forward progress by moving his right hand and left knee, then left hand and right knee... Then he got tired and returned to scooting. Yeah!

As far as mobility, I will be fine if Athan skips the crawling as a whole "stage" and goes straight from scooting to walking. But as far as his cognitive development, muscle strength, and general skill level, it would be great if he would go ahead and learn to crawl. It is helping him develop his arm, shoulder, and neck strength already.

His crawling attempts are brief and rare, but I'll see what I can do about a video soon...

Athan will stand for Wiffle ball

(mostly) better already

Athan finally got some sleep about 4 this morning after his fever broke. He woke a couple hours later and is eating well. No fever. No more puking. He is Mr. Cranky Pants, but I suppose he's allowed to be today, right? :) Hopefully he will nap well this afternoon. Hopefully I will, too! ;)

uh oh

Athan has a fever. And he threw up once. Poor kiddo. A couple of our friends' kids are sick, so I suppose we should have known. If it's going around, Athan's quite likely to get it, whatever it is.

Thanks, in advance, for the prayers.

graduation

We saw the NICU Grad Clinic yesterday for the last time! After 3 hours of lengthy developmental assessment, Athan was released from the clinic. He "graduated," complete with cheesy certificate and everything. :) No real news to report, just more affirmation of what we already know: He's developmentally appropriate with the excpetion of large motor skills. He's gaining weight. He's got treatment plans to follow from Endo and Cardio for his health challenges. And he's just dang charming. That's our kiddo! :)

trying again

I had no idea how tired I was. Maybe I still don't. But about a month ago, Athan started sleeping. We still have the odd night here and there when he's awake, and fewer when he's awake and screaming. But mostly, he sleeps.

And the whole world looks different. I suddenly have gas in the tank again. I have space I didn't have before. My daughter's temper seems more like a normal event in the life of a 4-year-old instead of one more thing aimed directly at my weaknesses. Laundry seems like a welcome part of my work instead of an avalanche of threatening dirty clothes. Cooking is fun again. Times of reading and reflection can exist instead of dissolving instantly into necessary naps. Conversations are restful instead of taxing.

This week, we had lots of heavy stuff. 3 families moved (2 away, 1 across town), which meant lots of cleaning and packing and loading. On back-to-back days, it meant tears and hugs and goodbyes. Other dear friends are in the midst of crisis. There was babysitting and grocery shopping and therapies and doctor visits and other stuff that happens around here quite often, but there was more of it all, and it all came on the tail-end of a week apart for our family... It was alot, and we were exhausted.

But I also had the reserve to do that for a while. It was a sprint. And now I can sleep again. Predictably. I don't have to live in the fog of fatigue all the time.

I guess I'm writing just to celebrate this for us. Also, to say to anyone going through a time when life requires you to live on too little sleep, you're not going crazy! Give yourself MUCH grace to cope however you need to for a while. And sleep whenever you can. ;)

Shriner's

Yesterday I took Athan to Shriner's Hospital in Lexington. Some of you may remember that we saw them last fall, and they recommended we just come back in a year. Lately, Laurie and I have noticed new signs of weakness in his joints, especially his ankles, so I called and asked them to move up the appointment.

It was a good visit. We really like the ortho guy, Dr. Serey, who follows Athan there. He was pleased with Athan's progress, for sure! :)

Basically, all of us (parents, docs, PTs) were somewhat ambivelent about whether some kind of ankle brace would help Athan. On one hand, some increased stability might help him learn to walk. On the other, too much novelty and rigidity might hinder some of his current skills (like scooting), so he could loose the strength he gains from them.

Still, after Laurie's input, our observations, and the evals by Dr. Serey and the PT at Shriner's, the consensus was that a small ankle stabilizer is worth trying. They took us to the orthotics folks and did little casts of Athan's ankles. We'll go back and pick up the braces in two weeks, spend the morning getting them fitted, and then bring them home.

After our talks, they seemed to trust our willingness and ability to try different things with the braces. We may try leaving them on all day for a few days and see how he does. If he's too hindered, we'll try just putting them on in smaller segments of time. We can play with the timing and see what works best for Athan.

We go back to see them for a follow up visit in 4 months.

tired

Morgan and Ryan had a great trip to Texas/New Mexico. Athan and I had a full, but quieter week around here. I'm trying to find a way to write about life this week, but words evade me tonight. It's good to be back together. I'm going to bed and will try again to post tomorrow.