Adult Day Care

A few weeks ago we looked at another adult day program. This one seemed to have a better program and a smaller client to staff ratio (smaller than the last place we tried--the one that told us not to bring her back after three days. She required more supervision than they could provide.)

We are going to see if this place will have room for Kimmie over the summer. Hopefully we'll get our foot in the door for year-round when Kimmie finishes school in two years.

The one thing that always strikes me when we tour adult day programs is that they are adults. It is so hard for us to think of Kimmie as an adult. She's such a "little" girl in so many ways--her toys, her interests, her size.

Sometimes I wonder if she will fit in. But she's with adults at church and she does ok. She's actually more sociable with adults, even developmentally disabled adults, than she is with youth or children.

A new phase for us.

--Mom

What a Day!

What a day.

Took me an hour and ten minutes to drive to work. A drive that is normally 10-12 minutes. Hadn't even gotten my coat off when Kimmie's teacher called. Kimmie had picked her nose until it bled and bled and bled. She (Kimmie) was hysterical.

Fortunately Kimmie calmed down while I talked to her teacher, and I didn't have to go back out on the ice to get her.

And we have ended the day with another major nosebleed, right at bedtime. Hope we can get some sleep tonight.

--Mom

Baseball

I've written about how cute Kimmie is running around with her football under her right arm and her left arm out in front to knock down anyone in her way. Since I've written about football, I thought I should write about baseball. Baseball is actually her favorite sport.

She gets her bat and she gets into position to bat. Amazingly, the part of baseball that she is the best at is working to dig a hole for her back foot to rest in while she is batting. She works and works her foot attempting to dig a hole in the family room rug. We're not sure how or why she fixated on this goofy, idiosyncratic part of batting, but she spends most of her time working her foot on the rug. I suppose she has seen this on television, but we don't watch baseball very often.

When she finally "swings" (not sure you can really call what she does a swing, but she does move the bat) at the imaginary ball, then she has to stop and tell us that she has hit the ball. She drops the bat and runs. Her running is more of a back and forth pattern rather than a circle-the-bases type movement. Sometimes in the middle of her running the bases she catches the ball, stops and declares herself the winner.

I don't think she quite understands that one team bats and the other team catches the ball, and then they switch.

But she sure is cute and funny.

--Mom

PS. She received a full size football for Christmas. She thinks she's really big now when she plays. Her little arm sticks almost straight out with the bigger ball under it.

Perspective

I think I've written something like this before, but it bears repeating.

One of the benefits of spending time at the children's hospital is the perspective it gives us about our lives. As big as the surgeries felt to us, they did not seem so big when we looked into the faces of other families at the hospital dealing with so much more.

Kimmie's surgeries were a rough time we had to get through, but once through, we were pretty sure it would be something that we could put behind us. Some of the families we met at the hospital were facing challenges that may never be resolved.

We were especially touched by the little boy in ICU in the bed next to Kimmie. He had just celebrated his 4th birthday, in ICU. He, and his parents, had been in the hospital, mostly in ICU, for 31 days. That's right, 31 days, an entire month. We didn't get the whole story, just bits and pieces. Evidentally he collapsed while running, was revived and brought to the hospital. I almost felt guilty when we were moved out of ICU after just 24 hours, knowing that Kimmie was quickly recovering and in a matter of days we would be home and life would return to our normal routine. Their lives will probably never return to what was normal before.

All we have to do is take our eyes off ourselves and look around, and we are reminded of how lucky and fortunate we are.

--Mom

Boxing Gloves

When Kimmie was in the hospital for her surgeries, she of course had IVs. In October she just had one in her right hand, but in November she had IVs in both hands. Kimmie doesn't like being hooked up to anything, especially IVs and blood pressure cuffs.

To keep Kimmie from pulling the IVs out, the nurses put diapers on her hands. They stuck her hand in the diaper and wrapped it closed around her wrist. When she wanted to, she could pinch through the diaper and get at the other hand, but it slowed her down considerably.

Kimmie has always had trouble straightening her arms all the way. When she is laying down, she usually keeps her hands close to her chin. The diapers looked remarkably like boxing gloves and the way she kept them close to her chin really emphasized the effect. Everyone commented on it.

Kimmie didn't have a lot of fight in her through most of her hospital stays, but we all know she normally does have a fight in her. Especially when it comes to getting her way.

The "boxing gloves" did create one problem. It's kinda hard to sign through a diaper. Most of the time she was too out of it to try to sign, and, amazingly, we were able to understand some of her signing in spite of the diapers.

The diapers were necessary, but a bit counter productive, too. We really wish she could understand the need to tolerate some things, but I don't know if she will ever reach that point.

--Mom

PS. Kimmie still has spots where the IVs were in her hands. She is always showing them to people and telling them how she cried at the hospital. If you see Kimmie and she starts pointing to her hand, she's trying to tell you all about it.

8-weeks Post Surgery

It has been almost eight weeks since Kimmie's scoliosis surgery. We are starting to feel like normal has returned.

Kimmie started sleeping better at the beginning of January. At first she just wanted to sleep on the couch and did not sleep well in her bed, but the last two nights she has slept in her bed.

She went back to school last week for three days and then was out for a snow day. She is back in school this week. The first day she came home really wiped out, dragging her feet, and immediately laid down on the couch. But the following days she seemed to be fine.

Kimmie is eating well. She has not gained all the weight back that she lost, but she is eating and we think the weight will gradually be put back on. Some days she is almost ravenous.

She still has some trouble picking up a book or flat object off the floor. In fact she has fallen at least three times trying to squat down to pick up an item. If it is something that sticks up a little, like a stuffed animal, then she can reach the paw or nose and get it. The flat stuff is what she can't quite manage . . . yet.

She figured out how to get her socks on. It requires her to sit on the floor with her legs bent a certain way so she can reach her feet.

She's figuring it all out on her own . . . how to do what she wants to do when her back doesn't bend that way any more.

The hump is mostly gone, unfortunately her shoulder blade on that side is still out of place. It gives her back an asymmetrical appearance. She still likes to have her back rubbed, so I'm always trying to rub across that shoulder blade in the direction it needs to move to be in the right position. Don't know that it will do any good, but it's all I can do.

--Mom