Spring

It's coming. I can tell. Spring, that is. I hear more birds on my walks. I see spring clothes in the stores. It's not in the 20 degree range outside anymore. My oil isn't burning up quite so quickly. I bought pink sweatpants. Ha!
So I decided it was time to bring a little spring to Sarah. I picked up a few bright, cheerful tops for her to wear. And I found a pretty design for the wall next to her bed. This afternoon I put it up. I really like it. It's sweet. Here are the results of my efforts:



We had a great weekend. Sarah is finished with her antibiotics, which is a good thing as they were starting to do a number on her GI system. I got her out both days, which is a little miracle for me :) She's been eating pretty well, but feeding her definately takes longer because she just is not as hungry as she used to be. So it goes more slowly.

Still waiting on Jimmy's surprise for us. And as for John? He is due in this coming Friday!!! Can I BE any more excited? I have got to go food shopping for all his goodies :) He will be home for a week for his march break. He says he is looking forward to it. So are we. So it's back to Providence on Friday to meet his train. A trip we love to take! I am praying for good weather.

In closing, just a picture of the missy from today. She's in bed now and I hear her happily singing her little song.

The Eyemax

And so on we go. We are trying out the Eyemax by Dynavox. It is not going so well. First of all, the touch screen is not sensitive enough for her light touch. Secondly, it is very heavy. I cannot rest it on her knees because I am afraid it will hurt her thighs. Thirdly, when the eyegaze is turned on she tends to move around a bit and the machine loses her 'eyes' so when she does make a choice with her eyes, oftentimes she is not able to be registered by the device. Also, when you turn it on to use it, it takes about 4 minutes to warm up and get ready, which means you have to know ahead of time that the child wants to say something. You cannot leave it on all the time near her because the battery will run out. I suppose you could keep it plugged in.
What do I like? The software is good. Clear and simple enough for her. Large enough font. I like the voice output and the way the eyegaze works. But it has a loud click when it recognizes a choice and that startles her every time. So much so that she is reluctant to choose again :(
So that's where we are so far. We will have it for 3 more weeks so that's good. The more information the better.

Otherwise, she is well. And happy. She didn't gain any more weight this week, but maybe next week....we keep going.

Her brother Jimmy called and said he is sending her 'something' in a big box and to watch for a delivery. Fun. Fun!!!!

Pills, soakings and calories, oh my!

It has been a busy week for us in Sarah's arena. She sure keeps this Mamma on her toes. I noticed this past week a red area in her groin. Under the skin was this huge lump. Owwww! So off to the pediatrician we went and she clearly has an infection. A wound culture was done and she was put on antibiotics. Huge capsules. In case it was a MRSA infection. MRSA is one bug you do not want to have.....Hmmmm.

She does not take liquid medicine, just lets it dribble out of the corners of her mouth. So she has taken pills for years. I just put one in a bite of food and down it goes. Chewing the pill is not an issue because she can't chew :)

So I am giving Sarah these large green capsules twice a day. And holding my breath each time I watch her swallow one. I cannot believe she can get them down. It is amazing. Really.

And what else do I have to do, this one being three times a day? Warm compresses on the red area, after which I am instructed to drain some of the infection. Well. let me tell you, this is not fun. First of all, she doesn't lie still, the best way to do this is put her in her shower chair and put the flowing warm water right on it. For 20 minutes, while we sing songs. Fun. fun. I have never had a cleaner child.

So how's it coming? Well, the lump is smaller. Yay. It doesn't seem as painful to her. Yay. The wound culture shows simple E-coli, no MRSA. Another yay.

And the best news of all? She gained another whole pound this week! Go Sarah. We are halfway to her goal of 71.5 pounds.

So, we have to continue this antibiotic for another week, continue the warm soaks and keep loading her up on calories. But all is going in the right direction. Yay:)

As for me? I need a vacation.

The HAIR

Well. Today took the cake. This morning when Sarah got up...Well... YOU look at it. There really are no words to describe this mess.





She goes to bed with it all brushed and pretty. During the night she likes to rub her face back and forth on the sheet. And this is the lovely result of her efforts.



I just wanted to share.

Is it Tuesday again already?

Another weigh-in and I am happy to report she has gained another 1/2 pound. So, let's review, shall we?

She lost 4.

She gained 1/2.

She stayed the same for 2 weeks.

She then gained another 1/2.

So we are creeping in the right direction.

Creeping being the operative word here.

Another tuesday...

...means another weigh-in for Sarah. And she still remains at 68 pounds. I guess I should be happy that she is not losing. She is eating higher calorie foods, she just doesn't have the hearty appetite she has been famous for.
I'll keep going. And weighing. And worrying. And watching. After all, that's what mothers are famous for. So I guess it works.

In order to make my concerned self feel better I plugged Sarah's height and weight statistics into growth charts made specifically for children with cerebral palsy. Sarah is considered in the Group 4 in regards to her limitations. And suddenly I feel much better! She falls in the 75th percentile for weight and 80th for height. Her BMI is a shade under average for girls with "CP" like hers. So this isn't too bad. She's doing OK. As long as she doesn't go back to losing pounds.