Wednesday, October 27, 2010

WT rehab

We finally got in for our evaluation by the wonderful folks up at West Texas Rehab. Athan charmed everyone in the room, of course. :) And, as expected, they confirmed yet again that Athan demonstrates developmental delay in large and small motor skills. That's it. Every other area shows him age-appropriate or ahead.

Also, WT Rehab contracts with the schools to do therapy, so Athan sees some of the same folks at school as he will at "the gym" (as Athan prefers to call it). The PT - Jody - is good with just doing sessions at school and evaluating later to see if we need to add some sessions, depending on his progress in the next few months. OT we decided to add one half-hour session every other week on top of what he gets at school.

Jody also referred us over to ortho to get Athan fitted for some new ankle braces. He did NOT like the casting process they did to get a mold of his ankle. They'll call in a few weeks when they're ready and we'll go in for a fitting.

So far, the report from the therapists is that Athan is a joy to work with. We're so proud of his determination and hard work! :)

Wednesday, October 20, 2010

Cardio

Ryan took Athan to Mansfield (near Ft. Worth) yesterday to see our new Cardiologist, Dr. Hackman. She was really good, Ryan says. I think we'll keep making the drive down there to make sure we can see her (instead of going to the clinic here in Abilene where the practice sends different docs from time to time).

Athan's ECHO looked good, and his heart is not enlarging anywhere at a rate that is higher than his normal growth rate. In case you don't remember, he has small leaks in his mitral valve that could cause his heart to enlarge. We have known since just a few days after his first heart surgery (in April 08) that he will need another surgery someday to repair the mitral regurg. Dr. K (cardio in Kentucky) recommended waiting as long as possible to do the repair. Dr. Hackman, however, said that if it was her kid, she would want it done sooner rather than later (as in maybe when he's 5 instead of when he's 10 - ish). So she plans to watch his ECHO (the EKG was a dismal failure - Athan was too wiggly and loud to get any results), and to take Athan's case to her colleagues for more opinions. We'll see her again in six months.

Monday, October 18, 2010

Endo

Athan saw the endocrinologist today. This makes our second visit since the move to Dr. Paul Thornton. He works with Cook's Children's Hospital in Ft. Worth, but they have a clinic here in Abilene that's really just down the street from us.

The first appointment didn't go well for me. Maybe Dr. T was having a bad day and maybe I was, but it was stressful. Plus, who could fill the shoes of the fabulous Dr. Irene?! But today went better. He was nicer. Or I was. Or something.

And Athan is maintaining well as far as his Endo stuff goes. His IGF-I was low on his last labs, which means we go up a bit on his growth hormone dose. Otherwise, all stays the same and we go back to see them in 3 months.

Athan and Ryan just left to drive to Mansfield to see Cardio tomorrow. We won't usually have to make this drive, but this time we just took the quickest appointment we could so he could see a cardiologist. The referral process took quite a while, and I'm anxious to make sure his meds are correct about his heart stuff. After this first one, we can schedule follow-ups here in Abilene, just like Endo.

I'll try to post an update when I hear from Ryan tomorrow.

Saturday, October 9, 2010

the stuff

I've spent much of my creative energies the past few months on 3 things:

1. Helping our kids navigate transition in a healthy way.
2. Entering the life of the congregation at EWUMC in a healthy way.
3. Unpacking and organizing our stuff.

1 and 2 went well, I think, and seem like meaningful pursuits. 3 is... necessary. And in the long run, I know I'll be glad I'm doing some of this work on the front end. But I'm re-heeeeealy ready to stop fiddling with all of our stuff!

Last Saturday was a notable milestone: I unpacked the last box. Woo-hoo! Now all of our stuff from storage (that's been there for the whole 4 years we were in Kentucky), plus all we brought with us in the truck, is "settled in." I know what we have, where it is, and why it's there. Piles of things have been donated. Other piles trashed. Some boxed and stored, and the rest organized. Whew.

Now my gracious friend Missy is helping me decorate (on a tiny budget).

All of this is exhausting and feels kinda shallow sometimes. But I want my home to be a warm, welcoming place. For my kids. Our guests. Myself.

That is the last few months of my life, at a glance...

Thursday, October 7, 2010

Ahtan can climb stairs!

video

So so proud of him! These are the 3 little steps he does each day at school...

Tuesday, October 5, 2010

school - Morgan


I suppose it won't surprise anyone that she's having a great time. :) She loves Mrs. G and seems to be happy to see all of her classmates every day.

One of her favorite things is Wellness Wednesday. Each Wednesday during PE, the kids run laps and get rewards throughout the year for meeting goals and making various milestones. Morgan is loving it. A couple of the parent volunteers have informed me that she cheers herself on as she comes by to mark her card after each lap... :)

It has been a bit difficult for her and for us to adjust to a full day of school. Can I just say that full-day Kindergarten is a bad idea?! It's a bad idea. She gets so very tired. I know she'll grow into it and her stamina will be fine eventually. Probably soon. But I still think it's silly to make 5 year old kids have an 7 hour school day.

But fatigue aside, all is going will with Morgan and her Kindergarten adventures.

Sunday, October 3, 2010

school - Athan

video

Athan LOVES his school. Every day he greets us with a wildly excited "I had so much fun at my school!" It's so good to see him that excited...

So school: Athan qualifies for preschool through the public schools at age 3 because of his developmental delay (all motor delay). So he admitted through the special ed program, and is part of a classroom that is designed for kids with special needs. Abilene ISD is GREAT in that they practice "reverse integration" with their special ed classes. They have allowed any teachers in the school to put their 3-year-old in the program as well. So Athan is in a class of 12 or so (with about 3 or 4 adults in there), and I'd guess about half are "normal" (kids with no special needs or learning delay), and about a quarter of them are kids like Athan (some delay in motor or speech, but not greatly delayed), and then a few kids with many special needs and more pronounced developmental delay.

Athan began the year going 2 hours each morning, from 8 to 10. We just had an ARD meeting and they recommended a longer day. They thought he was ready for a 4 hour day. And maybe he is. But I'm not! I like my kid, and our time together is short enough. However, with the addition of some therapies and such, I didn't want him to miss ALL the class activities. So we've decided a 3 hour day is good for him. He will go each day from 8a to 11a.

The main reason we are choosing school for him right now is for therapies. [Laurie and Emily - you'll love this - same schedule as we had with you guys!]: He'll get PT twice a week, and OT once a week. We're excited to get feedback from the therapists on his progress once they get rolling (this week, I believe).

And, of course, his teachers L O V E Athan. Love him. I think they recommended a 4 hour day just to have him around longer. :) It does my Mama's heart good to hear what they say about him.

Friday, October 1, 2010

as promised... :)

Aaaaaaaaaaaaaand we're back. ;)

Of course today, the day I thought would be wide open space for reflection and organized blog updates, has gone a little differently than planned. Of course. So no organized summaries yet, or even loads of pictures with cute captions and cuter stories. Yet.

For now, 2 things:
1. We have been in "project mode" for the past few months (busy with the projects that come with new place and new season), and I'm really ready to leave "project mode." Thus the return to blogging. It feels regular and rhythmic. I miss those kinds of things.

2. Just random cuteness: