Showing posts with label Rett syndrome. Show all posts
Showing posts with label Rett syndrome. Show all posts

Tuesday, July 6, 2010

146.6 Aren't you glad you can self sooth.

Maintenance going well, just need to have my body realize
that this is where the thermostat needs to stick.
It has to become a metabolic habit for it, if that makes any sense.
Little guys soothing technique.
Journey Beyond Survival: BOO

Jer has a binky and we try and try to get rid of it, but you see it's all we could put in his little mouth for 7 months before he was allowed to eat. Now I have days I would like to be rid of it especially when he loses it for the night and cries and cries that he needs it so much. It gives him a soothing factor now and back then when the needles poked and the tubing came undone or the noise was unbearable he sucked it. It was the one thing that he knew they would always give him when Mommies arms or Nana's or Daddies or Papa arms were not there to hold him, he could suck that thing so hard it pushed away his little fears. It kept his mind occupied on doing something else besides hurting or fearing that he would not get enough air. I guess I can keep waiting to be rid of that soothing little item if it means he is a happier baby.

First Photo as a newborn in NICU with his little tiny purple hospital binky.

5 Months old with Tracheostomy still living in the NICU.
9 months old and finally in our own home. Feeding tubes sat monitor lines and oxygen tubing very much our friends everyday but no Tracheostomy.
Our many binky trials until we found just the right one that he liked again after the trach was removed.
Picture taken just last week when I tried to take the binky so I could get a photo with the cute clean teeth. Not happening as you can see it is going back in the mouth to do it's soothing job at 4 years old.
Please go vote by clicking the link on my right top side called Rett syndrome do it for this little baby who's only means of escape sometimes can be her little binky. At least you are able to push the button and make a difference for her when she can not do that for herself. Go read how she relives her stress in a traped body.

Wednesday, June 16, 2010

146.6 Looks like this is my bodies settle point, the 46 number.

PLEASE VOTE FOR THE RETT SYNDROME RESEARCH FUND MATCH ON MY SIDE BAR IT WILL HELP MY VERY GOOD
I awoke to the most horrible headache at 5 o'clock. I could not go back to sleep at all. It will not go no matter what I have done. Took aspirin, ate food, drank water, took potassium, magnesium, calcium, B12. Can't find the blood pressure cuff today. That's the last possible answer to whatever my problem is this long drawn out morning unless I am getting one of those dang head colds that seems to be going around.

I had so wanted to go for a long run but to pound in the feet and the top of your head is not a friendly kind of idea to my body I don't think.

Breakfast: Orange juice, apple, apple Laurabar and an egg scrambled.
Lunch:Part of the burger off a hamburger. My little guy decided to eat it and I gave it away willingly. Got a grilled chicken, ditched the bread lids and ate the lettuce and tomatoes as the lid.
Dinner:Ate my leftover of the yummy hamburger casserole stuff with quinoa I made earlier in the week and put away in freezer for a later date.
My headache finally left late in the afternoon and I went to bed early. I want to run in the morning.