Healthy little sick kid..

Next week the whole family seems to have doctor appointments, not just Kelly for a change. Daddy goes to the surgeon to check on his shoulder...we think it's healing nicely. He had a torn Labrum? Sabrina and Kelly go for their four year check up. Mommy goes for her mammogram. I think my family alone is keeping the medical community rich. Kelly also goes for an EEG at CHOP on Thursday. She always seems to get the same review. She's doing well see you again in 3 months, 4 months, 6 months or a year...depending on the specialist.

The I have to schedule dentist appointments for all of us. Haven't found a good one that I like that takes our insurance yet.

I bought a pair of ballet slippers and a pair of tap shoes for Sabrina today. She's starts dance class on the 29th. Its not very formal. 15 minutes of tap, 15 minutes of ballet and 1/2 hr in the gym doing balance bar, uneven bars etc. She had an intro class this week and did not stop smiling from ear to ear the whole time. When I took her to preschool the next day, we pulled into the school which she also loves but said "I want to go to ballet!" Daddy was hoping for a female Tiger Woods but I think we may have a female Barishnikov.

Hey I gotta date...

Lief wanted some romance in our lives...read time to ourselves....so I got a baby sitter and we're going to brunch.
OK so its not much but its a start. I even put on perfume...woo hoo.
He's having his shoulder operated on tomorrow so he'll be laid up for a while. Arm in a sling for 10 days.
No lifting Kelly....bummer...at least his arm will stop hurting or at least it should....

Reflux better????

Well, thanks to a wonderful thing called Rett Net I was in touched with many people who have Rett angels in their lives.
I spoke over two hours with a wonderful woman named Dawn who also has twins, one with Rett's.
She mentioned that she took her daughter off of wheat and milk and that she's stopped spitting up. Well I thought, let me try something, so today Kelly had no wheat......and today Kelly did NOT spit up at all!!!!!!!!!!!!!!!!!!!!!!!
Now watch,,,,I just jinked it but slow and steady. Now the thing is to come up with lunches for school that don't have wheat.
Kelly usually eats Gerber Graduate lunches or Campbell's soup or chicken nuggets or jelly sandwiches....all have wheat.
Today I gave her tuna with mayo no bread and pears....Any suggestions for easy portable lunches would be GREATLY appreciated. Can't give her tuna every day....probably some baked chicken...??? I'm not coming up with much else. She's not into cold cuts which is probably a good thing.

Sabrina helped me put away the christmas decorations....she loves to help...Now we are going to play with the Polly Pockets Sue gave her for Christmas...way to go Sue...she's been playing with them all day.

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?