Little Lady Leprechaun

Here you are in your St. Patrick's Day outfit. Look at these adorable socks your Aunt Shanna got for you! I know it's the 18th, but since you didn't get to wear it yesterday, you are wearing it today.

This is the only picture we snapped before you got sick at the dog park. (Oh yeah. You started throwing up again two days ago. You made it a total of 14 days.) Poor little shnook.

Priceless

Audrey. We almost had a major tragedy. We almost lost ALL our pictures. I mean ALL 19,000 if them. It is a long story how, but I deleted every single one off our computer.

But Daddy is our hero. Through the Holy Spirit’s prompting I’m sure, he started backing up our computer files through Mozy about a month ago. So with only a little work we were able to get them all back. Best $5 bucks a month we could have spent. I would have been devastated. The pictures of our little family are beyond value to me.

PMR Checklist

Today was our PMR appointment with Dr. W. This is the course of action we have decided on for now.

*Call The Wheelchair Shop to have your seat adjusted. We discovered your tailbone goes towards the left. So while scoliosis isn’t a problem that needs to be addressed at this point, you look crooked when you sit. This can be fixed by leveling your seat pad accordingly. We also need him to adjust your stander.
*Take a script to Dynamic Orthotics for a hensinger collar (for use in chair to bring head forward), TED stockings (for circulation in feet/legs), a SPIO suit (compression for body awareness and support).
*Gradually shave down incline of shoes as you adjust.
*Look into aquatic therapy and massage therapy.
*Increase your diazepam to 1 ml, twice a day.
*Get a speech eval so that we can seriously pursue switches as your primary communication device.
*Use kenesio tape for positioning of feet and wrists.

I left the doctor with a thick stack of papers and what I felt like I was a huge to-do list. But it looks much more manageable written out like this.

She also explained to me that you have dystonia. It is a neurological disorder that affects muscle movement. No treatment exists other than positioning. But it explains some of your odd movements and behaviors. What I thought was seizures 18 months ago (which led us to discovering your hydrocephalus) is perfectly explained by dystonia. Just good to know.

I am also glad to know about your tailbone. You have always had such a…different….little bottom. During the appointment I mentioned your tailbone to Dr. W, and she sort of rolled her eyes and said, “Ahh, the tailbone. Parents are always worried about the tailbone, and it is almost always fine.”

But in the usual Audrey fashion, when she took a look she had to step back a moment, looked again, repositioned you, and then said, “Huh. This is interesting.” Going toward the left makes sense—now we just have to figure out how to make you sit on your sitting bones, instead of you crooked tailbone.

There is never a dull doctor’s visit with you Missy Moo, that is for certain. Thanks for always being such a trooper. You never complain about having to go into the Med Center, when you have every reason to. Maybe it’s because you know that we almost always make progress whenever we visit a doctor. Or maybe it’s just because you are the sweetest girl ever. Probably that one.

Early Birds

Dear Audrey & Liam—

Please go back to sleep. It is 6:00am which is really more like 5:00am. With the time change, nobody should be awake before 7:00.

Love,
Mom

Days Without Vomit: 12!

Since the Elecare makes you gassy, I have been venting you more often. I think that is the key.

Time will tell.

Exhausting

That is the only way to describe today. I got brave after taking you to the doctor by myself Tuesday, and so tried again. Only this time with Brother in tow. Oh dear.

We had a 9:30 appointment first, so we loaded up and were out the door pretty close to 8:30. Made it there no problem and were called to the back quickly. Mr. T brought out the new AFO’s and tried them on. He wasn’t happy with the left, and said he could have a new one ready by the time we were done with our next appointment. Deal.

So then we headed down Main to TCH for genetics. Nothing really discovered there, although he asked many questions about your recent behavioral changes—most notably the fussiness. He thinks GI holds the answer to that. Right now I blame teeth.

Back to Dynamic Orthotics for your new, new, NEW AFO’s. They fit great! Whoo-hoo! He took a look at your back since I have been considering a back brace. Mr. T thought one was appropriate, and found the shape of your spine concerning. As someone who works with kids like you often, that doesn’t sound good. He gave me an idea of what he thought was wrong, but since we see PMR next week I will wait and explain more then.

We arrived home about 2:30. Since neither of you shnooks took a moment’s nap throughout the day, we all hit our beds hard. And didn’t even consider waking up until 6:00. This was just fine because Daddy had a late meeting and no dinner needed to be made.

Overall, you both were amazingly well behaved. You fussed quite a bit at the first appointment, but did better as the day went on. Liam started out great, but was pretty much sick of his day long captivity to either the car seat or stroller by the last appointment. Y’all are great kids. Even still. That wore me out.

Now I need to begin packing for tomorrow’s trip to Austin. Sigh.

What A Production!

I am SO impressed!! I set up Tom Cat (as we affectionately refer to him) next to you in your bed while I made Liam's dinner. When I came back, I found an email composed with an attachment. I deleted out of it, not knowing what it was. It then took me to the Talking Tom screen and gave me several options including Facebook, email or YouTube. I didn't know what all that was for, so I hit the only button that made sense--play. And then this video started. That means you pressed record, did all this talking and punching, and then tried to email it. You almost sent me an email Audrey! After making a movie! I guess you wanted to make sure I saw your accomplishment.

In the 45 seconds this video plays, you did some good talking and tapping. I think it shows just how much switch toys will play into your future.

Tom Cat does come with emotional hazards. If the phone rings during playtime, it is sure to induce tears. And it never fails to ring.