We got the orthotic inserts!

This is what Arianna got today!

I have no idea what type they are but these are suppose to help her ankle pronation and flat feet and HOPEFULLY the knee pain. They are a hard mold that will hopefully shape her foot over time. We have to break her into them so it's an hour a day, then we add another hour, etc, etc. Arianna didn't seem to be bothered by them at all which was good. The guy from Hanger really liked her shoes so looks like we won't be getting any stylish shoes any time soon. There is just enough room for her foot and the insert and that is the most important thing.

If these don't help the knee pain then I have no idea what we'll do. She was complaining about her knees all day today which breaks my heart. Ibuprofen is a regular in our household now.

On another subject, we have put Arianna's bed back in our room because she is still sleeping in our bed and it's getting rather crowded. I am happy to say she has slept in her bed all night for the past 3 nights. One day when she is ready we will try the big girl room out again but I'm in no rush. I actually sleep better with her in our room. :)

Oh yeah, I can't believe I forgot this. We took Arianna to eat at Quizno's after we got her orthotics today. This was the first time since October we ate out somewhere. Okay, it's not a fancy restaurant but it felt SO good to be doing something normal and outside the house as a family. I was completely paranoid the entire time but it was still nice. She is not eating very well so only ate cheetos.

Then we came home and had our OT come over and work on some eating with Arianna. She is not eating very good at all lately but of course she ate like a champ for Janet. Agh..this girl made me look like a lier. Our OT gave us some really cool cookbooks for preschoolers that we can borrow. The authors are Mollie Katzen and Ann Henderson. The two books we have are "Pretend Soup" and "Salad People." It is so cute cause it gives you the recipe and tips for grown ups and then goes through a step by step pictorial for the kids to follow along. Our hopes are that Arianna will enjoy the preparing of food and want to eat more. She also thought it would be cute if we got aprons and hats so she knows its time to cook THEN EAT when we pull them out. You will not see any pictures of me in those hats so you can stop thinking about it. :)

That's about it for tonight. I have more to share tomorrow.

Physical therapy

We have been blessed with the fact that Arianna has done so well with her gross motor skills that she hasn't needed physical therapy, except on an as needed basis. Since we are looking at losing our therapists we had one more visit with our PT this afternoon.

The past month or so Arianna has complained about leg pains at night. You can recall in my ortho appointment update that he didn't think this was a big deal. Well I have always been concerned about it. Not once did he suggest getting an x-ray or even do a full exam of her ankles. He said as long as she isn't complaining during the day then we should be okay.

Well...the past 2 weeks she has been complaining of leg pain during the day. Anyone with a child that has 22q knows this is a common sypmtom with our children that seems to frustrate many of us. Most of the time it's unknown what causes these leg pains and our children just suffer.

I have felt deep in my heart that something more serious was going on with her ankles that needed further care but I'm trying to let doctors be doctors. (Sorry Mina...you know I love you) However, we already know she has tibial torsion, ankle pronation, flat feet, low musle tone and hyperflexible ligaments (can't think of the medical term).

Seven months ago I asked about getting inserts for her shoes and the ortho said "no" but I could try and find better shoes to support her ankles. We found a place that can put in arch supports on any childs shoe and we got her a high top shoe.

We go back 6 months later and show the ortho the shoes and he tells us, "well she indeed has all of this medical stuff wrong with her and if she doesn't wear the shoes you got her I'm sure she will me in more pain." That irritated me to say the least. Why wouldn't you do more to help my child if you know all this is wrong?!?!?!

So our PT saw us on the news clip the other day and the first thing she tells me is, "So....I see Arianna is still W-sitting. This is really not good for her joints.

This is W-sitting.

I have noticed this week her right ankle pronation (inward turning) is getting worse and feel like no one is helping me on this. She palpated her knees and could feel some creeking going on with her right knee and tibia, which is not a bad thing, but it's also not good. This means she is damaging her joints. So...after everythin she said there are orthotics that can be specially made for children with Arianna's conditions and she is shocked Arianna hasn't already had them made for her. So, she came out this even and evaluated her and wrote up a nice note for me to give to our ortho recommending Arianna gets a Cascade SMO orthotic.

No, the cute frog doesn't come with it!

We weren't suppose to go in for another year but I feel this needs to be addressed or we will be seeing another ortho. We are scheduled for April 1st so we are hoping to get some answers and help then.

I've been trying to get pictures of Arianna with all her doctors and therapists so when I finally get to scrapbooking. Here is a wonderful picture of Arianna and her PT Diane.

You think Arianna likes her?

Besides all of this, earlier we went to a rally today for the Arizona Early Intervention Budget Cuts and got to share our story with them. There is talk that they might not cut this program because of all the fuss we are making. Keep your fingers crossed!!!