So raise a glass...have some fun...and when you have a moment....say a prayer for our angel Kelly.

So I know I haven't posted in quite a while and I've got good reason, as we all do....LIFE.
I posted that they were considering Kelly to have Donnai Barrow Syndrome...well while looking at that,
genetics was able to confirm she does have Rett's Syndrome and probably has a second syndrome, maybe Donnai or another that they might not be able to confirm.
Having a diagnosis is good in that it can make sure we are following up on areas of Kelly's health that could become a concern in the future that may not be causing her a problem now, like heart arithymias (sp), seizures and scoliosis.
The flip side of the coin is all that could go wrong and not knowing, all that other children and women are going through and visualizing these things happening to Kelly. It's easy for others to say, you can't compare or don't worry yet....please....
you can't help but worry and its only human to compare.
Its new years eve and while others are celebrating the possibilities, I'm terrified of them. Of course, this diagnosis is new to us and we are still trying to deal with it and how we are to live our lives and raise our other daughter Sabrina...Sorry for the grim
or some what negative posting. I needed to vent a little.
So raise a glass, have some fun and ...when you have a moment....say a little prayer for our angel...Kelly...

Donnai-Barrow Syndrome

I know this is not a medical blog but just wondering if any one out there has had experience with Donnai-Barrow Syndrome.
It's a very rare genetic syndrome. Only one person in 200,000 in the US is estimated to have it. My daughter might have it
and there is not much info out there. With only five people in million with this syndrome. Not too many people knocking on congress' door to fund research.
Right now it's a toss up between Donnai-Barrow Syndrome and possibly Rett's Syndrome. Either way Kelly is a happy beautiful little girl who loves to climb on chairs and tables just to keep me on my toes.

Oh and her twin sister who has no medical issues just went poo poo on the potty today......YEAH for all those moms going crazy out there eventually it will happen... Of course she made a mess in her night night diaper. Every day is an adventure. : )

Neck spasms suck

Back in February, I woke up with a sore neck...thought I slept wrong on it....this happened for a few days in a row.
My neck would get stuck in one place, like if I held my cell phone by my neck or read a story to my daughter while she sat in my lap. I would push my chin with my hand until it didn't hurt.
OK....so after six months of this..I developed a burning sensation in my shoulder...so I thought the strain was getting worse...I guess I'm not so swift.....my body telling me something for quite a while and I need it to yell at me before I do anything.
Went to the Doc.....He shot my neck with litacaine.....that did not help at all.
He told me to stretch the muscle, have my husband massage, take advil and heating pads.

THAT SO DOES NOT WORK!!!!!!!!!!!!!!!!!!!!!!

Any one have experience with accupuncture or know of a type of specialist I should see. Its hurting now as I type this and it hurts when I feed my daughter at the table. Lifting arm at weird angle up and over... or somewhat twisting causing throbbing...

owwwie sniff sniff....so sad

Life goes by....

So I know everyone is so enthralled with my blog that you've all been dying for the next installment.
My little niece Jennifer turned 19 yesterday.....I miss her lots.
Kelly is out of school for the rest of the summer. We'll be going to LBI on Wednesday for a few days.
Sabrina has some class next week, digging for dinosaurs or something like that.
I'm waiting for my final delivery of drapes from JC Penney so I can pick out a paint color for my living room.
and my husband is still asleep.

Friends of ours are on a cruise in the Caribbean this week. They flew into Puerto Rico and there's a category 4
hurricane in the area. We can't reach them by phone and I don't know exactly the name of their cruise line.
We're hoping their vacation won't be ruined.

What's up with everyone else?

Great Date

Hi everyone. Guess what? Finally my husband and I were able to go out on a date....and it was wonderful.
We went to an Italian restaurant we used to go to all the time. It's been about three years since we were last there.
The food was still great. Then we went to hang out at my friends house....Hi Sue!!!...
Hope all you other parents out there get to go out on date's with your significant other too.

ho hum

Ok today is Sunday and my husband was paged into work. I'm home with the kids and should be going to a block party in about an hour but the only people I know who were invited aren't going to be there. yuk. I hate going to parties when I don't know any one. With any luck, it'll thunder storm and we'll come home but that will be just as boring. If I have to play Barbie dolls any more I'll go bonkers. Kelly just wants to climb on me and bite or pull hair. Sabrina wants to play Barbies. I want to read a good book but I haven't had a chance to do that for a while. The only time I can is at night and the girls are getting up early so I try to go to bed early. Ah yes, the nonsensical ramblings of a bored housewife.

Last night I spend over an hour making photo copies to apply for DDD benefits for Kelly. This should help now with respite care and a small stipend to help defray some out of pocket costs. Mostly it is for when she's over 18 years of age and we need help with additional vocational training as an adult or some type of housing. Let's pray for a miracle that she learns to talk and won't need special education in the future. I know its a big stretch......but if I can't hope for it who will?

Bear with me and please read

I know I haven't posted in a while but things are busy just like everyone's life gets sometimes.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.