I am still surprised

Yes, I know Jimmy is 'all grown up'. I know he is 23. I know he has completed college, has a full-time job and supports himself. I know he is now a Little League baseball coach. I know he has his own bills that he pays every month. I know he lives far away, independently, from me. I know he has his own front door now.

But, no matter what, I see my blonde boy as this:



and this:



and this:



and sometimes even this:




So, tonight is Halloween. And Jimmy is chatting to me online about how he got the wrong size candy bars to hand out(too big) so now he doesn't have enough for all the kids that will come to his house. So he just called his roommate and asked him to pick up more on his way home from work. And suddenly I felt very disoriented. How is it that my firstborn is now handing out candy for Halloween from his own place? Like a responsible adult? When did that happen? How can he be old enough? When did he grow up?

I remember him in all HIS costumes through the years. The first year he was a devil, then a ghost, then a ninja turtle, then a pirate, then dracula, then a hockey player....he was always so enthusiastic! Running from house to house, yelling for 'poor John' to hurry and keep up with him :)









AND... not only is he handing out candy like an adult but he is running a Halloween party in Wash. D.C. A party for 175 people all in costume at a hotel that used to be a funeral home. He is IN CHARGE. Of the whole event.




I CANNOT keep up.

To the point of failure

Sarah has theraputic riding every Tuesday. Each week is a different experience. Sometimes she is enthused, sometimes cranky, sometimes tired before we even get there, sometimes geared up and ready to go. This week she was in a great place. Ready to ride. So off we went.
We decided to have her ride outdoors rather than in the indoor ring as it was such a beautiful day. She was into it. Smiling. Chirping. Laughing. As it was going so well, the instructor suggested we go on one of the short trail rides through the woods. It was a little more bumpy(translate: more work) than Sarah was used to but she loved it. Finally, we emerged from the trail and took one more walk around the track before heading into the stables.....
Well about 30 yards from the dismount area, Sarah's trunk muscles simply gave out. They had nothing left. She started giggling to let me know 'something' was happening and the next thing I knew she was leaning more and more to her right and was heading straight down. I was trying to push her back up from that side and the instructor was trying to pull her up from the other side. What a sight we must have been!
There was no way we or she could get her back up into the saddle. What to do? what to do? She was going down unless we took her off the horse. So while she was leaning and giggling, we released her feet from the stirrups and I had no choice but to drag her down from the horse. Slowly.
And there I was in the middle of a field holding a totally floppy 68 pound child. I started laughing and that was not good! I still had to get her to my car which was quite a ways away. I could have layed her in the grass and waited for someone to bring her wheelchair but it is no easy feat to get her up from the ground! As I already had her in my arms, off we went to try and make it to the car. I was successful and we both were amused.
So today, the 'day after', we are both a bit sore. Sarah, because she exercised to the point of failure and me because I carried her to the point of failure. Tylenol is on our agenda today :)

Ewwwww...

There's a mouse in the house
Or mice in the hice
Mia the cat is thrilled
I am not
Up from the basement
she darts
twice
mouses in the mouth
Ewwww
I scream
So down go the traps
peanut butter
as bait
smart little mice
eat the snacks
yum yum
traps remains intact
no snaps
they are getting fat
on my appetizers
I call son Jimmy
Help!
he offers his trap tips
I will try again
tonight
if no results
new traps will be tried
wish me success
Ewwww

A question from John

"But mom, WHY is Sarah going to be so small? Is it because IF she has cerebral palsy, THAT makes her small? Or is it because 'whatever she has' is making her small?"

Very good question. If Sarah stays the size she is, she will be the size of a typical 10 year old girl for the rest of her life. Does this qualify her as a 'little person'?

I just looked it up and a 'little person' is no taller than 4'10". Interesting. Sarah is 4'8".

But, I digress. The issue is, what contributes to Sarah's petite size? She is a very good eater. Very healthy. No medical issues. I find most people with cerebral palsy to be larger than Sarah in adulthood. Of course, I speak in the dangerous world of generalities here. Shall I just say, I don't think that CP is the answer in Sarah's situation.

I am inclined to say that whatever Sarah 'has' is responsible for her small size. It is part of the 'undiagnosed diagnosis', being one of its many unusual features. I am aware that girls with Rett syndrome tend to be on the small size.

One day soon, I will do a post showing which traits Sarah has that fit the Rett category and those that don't. That would be kind of interesting.

So John, there's your answer. In a round-about way.

Sweet Saturday

12 year old checkup

Sarah had her yearly checkup today. She was so good about it. Even through the flu shot. She is in the 10th percentile for height and 5th for weight. Her BMI is fine. The doc called her a 'petite princess'. He thinks her growth is done. She is 4'8" and 68 pounds. That is probably all she will ever be.
We went through all the typical health issues and she is deemed 'healthy'. Looking fine. Sarah is rarely sick. The only time we run into trouble is when we start fiddling with her muscles and bones and then she goes down like a stack of dominoes.
There is no sign of John's mononucleosis. A couple more weeks and she will be out of the woods for that.
So, all is well. I am glad. I need a break. So does she.

Wordless Wednesday

What SHOULD be crammed into a day

Sarah has a lot of things that I am supposed to do with her every day. Here's the list:

1. Two hours in her stander
2. 1/2 hour academics
3. Two hour-long rest periods with leg brace on
4. 1/2 hour computer time
5. 1/2 hour spine work---therapy ball, tummy time
6. Continually offer choices

There are the things she LIKES to do:

1. Take a stroller ride around the neighborhood
2. Watch her music DVDs in her rocking chair
3. Sit at the kitchen table with her book and listen to music
4. Go to the mall
5. Eat
6. Do errands in the car

This is all in addition to meals and a bath(which takes an hour).

It takes a lot of planning to do the 'should' list while still giving her things on the 'fun' list.

This does not include the days she has theraputic riding, doctor appointments, OT at school or the 2 days a week that I work. Those days it mostly all goes out the window.

I'm just saying.

The Orthopedic Visit

Sarah looks shell-shocked after all her xrays!!

So Sarah had an appointment with her orthopedic surgeon and her physiatrist who works with him. I went in thinking we were going to focus on her tight left hamstring and we ended up discussing her spine. We did hip xrays and spine xrays.
It was quite a feat getting the xrays done correctly.
The doc wanted them weight bearing(standing) but Sarah can only stand on her right leg, and then only for 15 seconds or so.... So....it took five people to hold her properly. One on each foot and knee, then we had people under her arms, another holding her chin up....we had to do this 4 separate times to get all the pictures.
The first time she protested loudly and carried on but after that she gave up and was silent and cooperative. Xray rooms are difficult for her--lots of loud clicking as they move the machines around, doors slamming and them lots of people's hands on her.
And the results? Her hips are still in their sockets. YAY! Her hip surgery was 6 years ago and it is still holding. Whew! I wouldn't want to repeat THAT again.
And the spine...it has a 'C' curve of 20 degrees. Apparently that's considered mild, but she didn't have it 2 years ago. The doc is not concerned at this point about it.

The issue is the kyphosis(slouching forward) that she has. She has had it to a degree all her life but it is more apparent now. The doc says it is flexible-meaning she is not stuck that way, but she is not as flexible as she used to be(in my little opinion). The kyphosis is due to her low trunk tone. There was a long discussion with all the docs and PTs there. They brainstormed among themselves on the best way to handle it. The conclusion is that she is to have more time in her stander, time lying flat on the floor, backwards over a large therapy ball and on her belly up on her elbows.

Sarah will love these new activities! NOT!! Anyway, I will give it our best and hopefully keep things from progressing.

Oh, and about the hamstring...put a dynamic brace on that leg when she is napping. This brace stretches the leg out as straight as possible.

Oh, and see you in 6 months.

Wish us luck!