Archive for May, 2013

Camp Tatiyee

Friday, May 17th, 2013

So, we are thinking of sending Maria to camp this summer. She gets out of school in a week (!), has 2 weeks off, has summer school for a month, then is off for a month before school starts again in the fall. An opportunity for her to go to camp the last week of summer school (yea, they’re really going to like that…) came up and we’re seriously considering it.

It’s a camp in the White Mountains that is run by the Lions Club for children and adults with special needs. It was built in the 50s, and is going strong and growing, even. They run purely on donations, they’ve never charged anyone for special camp! They go from Sunday to Friday, and apparently the parents are supposed to just drive away.

I filled out the application kind of on a whim, but then when I got the email response, gulp! I spent literally hours this evening filling out the medical evaluation and I’m not done. The application was very thorough, but these forms make that form look like child’s play. They are serious about this stuff! We googled the camp and it’s 3 1/2 hours away. Almost to NM! That even made Manolis gulp a little bit. He’s all for this camp stuff –realizes how good it will be for Maria, but wow. They have an open house a couple weeks before camp that I think we need to go to to check it out. Then we’ll allegedly drop off our precious one for 5 nights.

I think 8 is the youngest they’ll take. She’ll be 9 (!!) by the time she goes to camp. She’s not going next summer – for obvious reasons. So what the hell! I think this year will have to be the year of wild abandon since next summer is going to be……interesting.

Maria got me a Baskin Robbins ice cream cake for Mother’s Day. So thoughtful! And she made me a cute card at school. Her daddy got me flowers and chocolates, the usual and my favorite! I’m so lucky to be Maria’s mom — that’s gift enough for me!

ETA: Andy elbows his way in to add a link to Lions Camp Tatiyee

Maria Finally Gets Some Backbone

Thursday, May 16th, 2013

Maria saw her orthopedic surgeon last week. Cathy told him they have been paying so much attention to her hips since the surgery two years(!) ago that she’s worried they are ignoring the scoliosis. So they did an x-ray…and the doctor came back in looking very grim. Maria’s scoliosis is up to 55 degrees, and 40-50 is where they start looking at surgery. They don’t like doing it in kids under 10, but Maria turns 10 in a year so it looks like she’ll be spending next summer recovering from spinal surgery.

The doctor said there is nothing that can be done to prevent or slow it down, either in the past or between now and the surgery. Cathy and I were skeptical of that but my research backs that up. It’s a common side effect of CP and there is nothing to be done about it. It’s possible SOME types of scoliosis may be helped by exercise, but not CP-caused scoliosis.

As upsetting as it is to consider someone operating on Maria’s spine, the surgery should be less traumatic than the hip surgery was. I’ve always heard about “shoving steel rods in kids spines” but that’s not what it is. The goal is to trigger a few of the vertebrae to fuse together to correct the curve and prevent it from advancing. The small steel rods are there to provide temporary support, much like the hardware they put into her hips. They don’t bother removing the rods later because getting to the spine isn’t easy so it’s safer to just leave them. She will still have good spinal mobility. Recovery is pretty quick–kids who can walk are walking in three or four days! So it won’t be fun but it shouldn’t be as bad as the hip surgery was.

Maria’s First Kiss

Saturday, May 11th, 2013

Manolis and I went to school today to pick up Maria. A sweet little boy who really likes Maria was in the nurse’s office also. His aide told him to say goodbye to Maria, so he went up to her and just leaned over and gave her a sweet kiss on the lips! So 5 or 6 adults were standing by watching, yet powerless to do anything because it all happened so quickly. We all cracked up — even Manolis. I thought he was going to be mad (we all did), but he laughed with us. I say it was cute and sweet and as long as it’s just a peck on the beak in front of 5 or 6 adults, then no problem. But anything more than that? I don’t think so!

We got Maria’s device (Dynavox Maestro) back today. Again. Supposedly they put in a new hard drive and battery (and the cord is new, due to a recall), so it’s basically like a new device (in my mind, not sure about in the real world). 2 more weeks of school, so she can practice a bit more using it. She does very well with it at school; she uses it to make choices of activities or food.

Apparently Maria loves Carly Rae Jepson’s song, Call Me Maybe. She’s reacted to it more than once at school on different days. Elisa (aide) said when it was playing in PE, Maria was smiling. Only that song. The girls in class sing it to her, too. So I downloaded it on my iPad today and played it when she was eating breakfast, and I swear she was trying to dance in her chair! So cute!

Maria got very upset with her daddy a couple nights ago. I was at work, Sue was sick or something. Manolis tried to put Maria in the stander and she didn’t want to be in it, so she was yelling and scratching him! Wow! (Makes me wonder if she was in the wrong position, so in pain?) She was still pissed at him when I got home, a couple hours later, and stayed mad at him until the morning! Now that’s determination! It was remarkable; I’ve never seen her do that before. Our little girl is growing up. Our “little” 57 pound girl!! I think she’ has gained 15 pounds in a year. Is that good? I have no idea.

I signed up to be a parent mentor for Feeding Matters (children with feeding difficulties) and Raising Special Kids. It’s primarily mentoring other parents on the phone. Each ‘gig’ is only supposed to take 2-4 hours per month. We’ll see… I’m working all the angles trying to figure out what i’m going to do when I retire. However, I have to do something that pays, so volunteering won’t be it, but might lead to something. I’d like to find the right partner and invent special needs stuff that doesn’t cost a crapload of $$.

In school, Maria made me the sweetest Mother’s Day card with a little pocket on the inside in which there was a coupon for a hug and a coupon for a kiss. Best. Gift. Ever. So cute!