Tuesday, June 16, 2009

Still walking...

Yes I'm still getting up at an ungodly hour to go and walk around the lake four times. This should be 3.6 miles, according to city workers. It seems some mornings like it's 36 miles!!

Then I come home and help Steve mow the church yard. Since we have only 2 push mowers this is a daily job in order to get it all done in one week. If anyone would like to give us a riding mower we'd be so happy!

And you wonder why I've not been posting,,,

By the way I've been killing myself yet gained 1 pound! Oh the joys of being over 40! And I hate when I hear people say " Muscle weighs more than fat" Ok that is just stupid. A pound is a pound! Usually very fat people use that argument!!

Peter's Anomaly and Peter's Plus Anomaly

My son Sam was born with Peter's Anomaly. It is a very rare eye condition. Currently the medical info suggests there are only 50-100 cases worldwide. It's so rare that the NORD National Organization of Rare Diseases lists it but has no info on it...

The most common symptom is a cloudy corneas which makes it impossible for the child to see out of the eyes. The cornea is basically the wind shield of the eye. If you can imagine a dirty windshield, that is basically what a child sees. There are other problems related to the eye- size, pressure etc.

Our son had corneal transplants which he rejected and now has corneal implants which has given him alot more sight. It is hard currently he has to have 32 eye drops a day!

Peter's Plus is the eye condition plus learning delays, short statue and a host of medical problems. We feel Sam has that also. There is not a chromosomal marker yet so it is not confirmed but he has about 75% of the symptoms.

It's very hard to find info about this condition. I plan on setting up a website to try and help other parents. It was a shock when we found out and no one was there for us so I'd like to be there for some other families.

Saturday, June 6, 2009

Ok I'm in the exercise mode...3 days walking 3.6 miles each morning and eating low fat. Boy I feel good about it! We usually eat low fat because Jon's family history is filled with folks who have had heart attacks, by-passes etc...so he'd like to stay off the operating table! But in my 40's diet alone is not enough. I stay very busy with the children but that alone is not enough to lose weight. I believe walking daily will do it for me. I have to admit it does make me feel good to be out early and sweating:)Plus I know the benefits to my heart and my body. I want to live a long healthy life so I need to continue on this track!

I worry about getting old, having health problems and dying.I guess we all do to some degree but having Sam makes me worry about his future. He will always need someone to take care of him and I want to be that person! Life is different when you have a child with handicaps. Other people don't understand the terror that can grip your heart when you think about that child not having someone who loves him to watch over him. That is my only real worry about the future. I recently was talking to a friend about this matter and he just didn't get it. (of course this guy doesn't even have kids...) The guy was saying things like "Sam would be fine..." I've had other people tell me things like that but not parents of children with disabilities!!!! We all share that particular burden and concern!

So in looking towards the future, that is my biggest concern...I really hope the rapture takes place before I get old!!!

Thursday, June 4, 2009

Exercise and diet

I recently (last night ) decided I HAVE to diet and exercise...so today I walked 3.6 miles and ate a turkey sandwich for lunch and a salad for supper...I have a goal to lose 20 pounds by August 4! We have our church's General Council in Orlando and we'll see lots of old friends and I want to look good! So wish me luck!!!!