Saturday, January 26, 2008

"Ma ma" sweetest words in the world

Kelly is saying "ma ma" again. It's been about 2 1/2 years since she said it. thanks for all those prayers. Keep 'em coming.

She is in her crib now, laughing and what I have to call growling. she just started that new sound last night. OH BOY. she was up at 1:30am yesterday from a dirty diaper and would not go back to sleep. Hopefully she sleeps tonight.

Sabrina has been an angel too. She has been so good, playing with the neighborhood kids, sharing better. Doing great with trying to write her letters. Can count to 15, knows her colors and shapes. Can spell her first and last name and knows the name of the town we live in. I'm going to start on the street address next. Little Miss Trump....wonder what she'll grow up to be....any thoughts...She loves princesses, Barbie, fairies, dressing up in dresses. She always wants to be first. Loves to paint, loves books. She loves Buzz Lightyear. Loves to run. Loves to have her picture taken. Loves her mommy, daddy and little sister...All in all a great kid.

Tuesday, January 22, 2008

Armbraces and Birthday Cakes

I'm about to order armbraces for Kelly, restraints to keep her hands out of her mouth. I've been thinking about it for weeks but waiting to talk with her OT before commiting. Kelly is always biting her right forearm and already had one staph infection on her finger from keeping it in her mouth. It almost feels like I'm giving in but I know that many of the girls with Rett Syndrome experience a calming effect from the braces.

The other thing on my mind is birthday cakes. I wanted to get a cake for the girls 4th birthday but it would be over $50.00 to have a half a sheet cake made with decorations of princesses and blues'm making it myself. I figure I make one sheet cake the bottom. Make a second sheet cake and cut down one third of I can have a base, a second level and small third level...then try to decorate it like a castle. need to check party stores and dollar stores for items that are castle like..Sabrina has a few knights in shining armor and princess the right size but she plays with them all the time. I don't want something on the cake Kelly may have bitten. I thought I'd make the bottom layer, blue like a moat top two layers to look like a castler with a draw bridge??? and turrets. of course they'll be princesses for Sabrina and a blues clues dog for Kelly. Of course I'll have to do all this after the girls go to bed the night before the party. well as make cupcakes for the kids party that afternoon....lot of baking ahead.

Saturday, January 19, 2008

Let's get Rett Syndrome on Oprah

I've been trying to get the attention of the producers of the Oprah Winfrey show to do a segment on Rett Syndrome. If everyone reading this emails them with the request and asks a friend to do the same, maybe we can get some national attention. Just trying to jump on the coat tails of the American Idol contestant who was featured last week during try outs. Angela Martin from Chicago has made it through to Hollywood. Her daughter has Rett Syndrome as does mine. For more details about the syndrome please check out or

The website for the show request is

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.

Sunday, January 13, 2008

Hey I gotta date...

Lief wanted some romance in our time to 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 least his arm will stop hurting or at least it should....

Saturday, January 5, 2008

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.