Thursday, April 29, 2010

More Occupational Therapy @ Home

I'm always looking for ways to foster skills Goldie is working on, yet are FUN for her and her siblings. Goldie has fine motor delays caused by her low muscle tone and her low vision. The hypotonia and nystagmus are always collaborating on ways to trash her eye hand coordination. It's our job to help Goldie get one up on them.

In the March/April 2010 edition of Mothering magazine I read Shannon M. Medisky's fabulous article, "Your Indoor Playground" about creating indoor playspaces. Namely, vertical ones to save space. One, in particular, caught my eye. It was a standing lacing board.

I pitched the idea to my husband thinking he would be annoyed by the addition of one more thing to his honey-do list. Nah. He said it would be no big deal. He picked up the supplies for $6.42 and had it put together in about 20 minutes. It's nice and big so 2 or more kids can play at one time.

Goldie's OT has suggested using pipe cleaner with lacing activities instead of the typical laces. Goldie isn't sold on this idea. She sees her sisters using the string and that's what she wants. I play a game with her by standing on the opposite side of the board. We take turn pushing and pulling the large thread through the holes. For my older kids, they can use longer ribbon to make designs. (if their mother would dig it out of the craft cupboard for them)

I know not everyone wants something like this taking space in their living quarters. We've decided its part of the trade-off because we aren't sending Goldie to preschool. That means its our resposibility to provide educational and engaging activities for her.

If you'd like to read the article send me an email, then I can send you a digital copy of it!

And if you're looking for more OT @ home try here.

Tuesday, April 27, 2010

Goldie the Big Little Middle Sister

Her sisters call her the Little Middle Sister, but she is also one of Hank's big sisters. I think she loves all her sisterly roles. Goldie is almost always nice to Hank. We just have to watch because she will try to take care of him beyond what she is capable of. And I say "almost always nice" because there was the one day she dumped a glass of cold water on his head while he was sleeping. (Baptism - check.) Hey, it works to get rid of the cat.

So here are some pics I took this month of our Goldie girl.

Those are Hank's binkies in her mouth. I just wash them when she puts them down. I figure if we make a big deal out of it, she will too.

Wednesday, April 21, 2010

Where can I get an accurate swallow study done?

When I wrote that last post I was feeling the dread of dealing with the stomach flu over Easter. Well, that went away around 2 am when Goldie drank a cup of juice and kept it down. My husband decided that would be a good time to give me the whole story about what preceded the puking.  He had Goldie with him, visiting the neighbor. She had a little glass and was playing with their water cooler. Filling the glass, trying to drink from it and spilling it all over the place. For most 3 year olds this would be good, clean fun. (Unlike yesterday when she came in covered in tractor grease...) The only problem is that Goldie can't drink thin liquids without choking. Which is what happened. She choked and coughed so hard that she threw up her dinner. It took over an hour to empty her stomach because of her diastasis recti.

WARNING: This next part talks about vomit and you may think its gross.

This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.

My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.

I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments.  Any advice on how to get this done right?

And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing,  despite all the medical loose ends waiting to be tied up.