Wednesday, November 13, 2013

Accomplishments and Outings.

You know the creative juices just aren't flowing when your blog posts are only a recap, or a reminder of everything you have going on. Phew! Bear with me.

On Monday Martha had a Cranio-Cap appointment, which also included Cranio-Cap graduation. Hooray! I have a box of cupcakes to make to celebrate the accomplishment, but life has not allowed baking from a box yet this week. Graduating from the Cranio-Cap means so much to me. You see, it is the FIRST thing we started, and then finished with Martha. It had an end. The first and only thing we've done to this point that I can say that about. There are a few other things I pray that she can graduate from, but for now, the Cranio-Cap is a big accomplishment.

I'm very much looking forward to seeing her dark, curly hair grow.

Remember Paul's curls? Oh my goodness, swoon!

(This is Paul when he's about 16 months)

On Monday afternoon I brought Martha to the doctor. She has had a respiratory infection for about three weeks now, which we were managing at home, and is more or less typical even though it is very tiring. But there was something else "off" too. She was in serious pain, and I couldn't get her to sleep or to stop crying...for the whole day. She had had a low fever for days, but my mind was trying to think of what logically could be going on. The last time I couldn't get her to stop crying, she ended up in an ambulance, so I was worried. Anyway, she has her first ear infection, and is now being treated and will hopefully get the respiratory junk taken care of along with it.

On Tuesday I took Paul and Michael to Mass, which is like... a little bit of a disaster. I always need an outfit and new deodorant after daily Mass on my own with the kids. Wow, they keep me in a sweat while I'm trying to hush them and keep eyes stares at a minimum.

Wednesday (that's today), I had another great outing with the boys, except this time was the library story hour. No sweating involved here. The boys got out of the house for something other than Mass or the grocery store. Check for me.

Thursday is Early Intervention therapy. More on this later. The therapists come to the house. It's a circus in here.

Friday is MORE therapy, except this time we leave the house B&E and drive 40 minutes to a private therapy business. The purpose of this visit is to have Martha fitted for hand splints to de-rotate her hands. They will look something like this.

This will be the second orthosis she receives (the helmet being the first). The splint should help her play, and reach for objects and toys. Mark says it the best when he says that her arms were put on backwards ;-) .

This picture was just taken of her on Monday, and it gives an idea of her natural hand position. When she is reaching for something, they rotate worse. I hope these splints aren't too invasive and can train Martha's muscles to move more correctly.
On a pleasant note, Martha's rosy, high cheek bones remind me of my family of origin. I know she will look a little different because of her syndrome, but lately I have seen a resemblance in her face that reminds me that she is here with me...that I am part of her. It is a small sort of comfort.

I know I'm missing something...or a few things, but I'm wrapping it up for now while I contemplate a Diet Coke.


Elizabeth said...

Every time you post a picture of her my first thought is how stunning she is. She is just beautiful!!

Sarah said...

I completely agree with Elizabeth! She has a natural beauty. I think if you didn't know you would never guess everything she's been through. And she always looks so happy!!!