Turner Syndrome......

This is a sort of difficult post for me today, not exactly sure why, but here goes. We have decided to bring you all up to date since y'all are a part of our support system. Most of you do not know but Mikiah was diagnosed with Turner Syndrome about 4 days after birth. We had a few indicators at birth to have the genetic testing done, one being edema (swelling) in the hands & feet and her slightly wide spaced nipples. Turner syndrome (TS) is a chromosomal condition that describes girls and women with common features that are caused by complete or partial absence of the second sex chromosome. TS occurs in approximately 1 of 2,000 female's born and in as many as 10% of all miscarriages. For more in depth info here are the basics.

Mikiah has a few of the physical characteristics but for the most part her case is fairly mild (if you could call it that). She is missing her second sex chromosome on all of her genes which could lead to her being of smaller stature, average girl with TS is 4'7'', and she will have premature ovarian failure/infertility. Estrogen replacement therapy is necessary for breast development, feminine body contours, menstruation and proper bone development & Fertility without assisted reproduction therapy is rare (less than 1%). So MJ will most likely not be able to bare children with out medical intervention. We will also need to continue to keep a close eye on her Heart, Thyroid, Kidneys and will be testing for diabetes.

The reason I am catching you all up on this today is we just had her first Endocrinologist appointment. We drove to Texas Children's Hospital in Houston and learned a bit more about the next course of action. We had a good appointment with our new Endo Doctor. We will be going to see her every six months for the time being. The main thing we are watching for is her growth pattern, she is currently in the 33% for height, so she is still plotting on the normal growth chart. Once she begins to fall off that growth chart we will begin discussing growth hormone therapy with our Endo doctor. Most TS girls start growth hormone therapy around age 4 (we would like to avoid it if we can but also want the best for MJ and if it's a few more inches then we will choose to do it). Before we head back in August we will be running a few baseline labs for Diabetes including glucose levels and Insulin testing. She will also be doing a few more labs and blood work. We will be going over the results of these labs in August. So more to come later.

MJ was great today and enjoyed her appointment, although I think she was a little nervous as Texas Children's is HUGE, but super colorful and fun! She's a trooper!!

Busy, Busy Thursday......

My Thursday was a active one.....We got took dad to work and then got ready to head to HEB Plus! (a grocery store similar to Fred Meyer)....Down here there are H-E-B grocery stores and SuperWalMart/Super Target no other chains exist down here, no Kroger, Albertsons, Safeway/Randall's or QFC.....took some getting use too but I LOVE H-E-B......So anyway the girls had a Moppets Play date at the H-E-B Plus! store (Grocery and Home Goods all in one).....They got to tour around, learn about Produce, Cheese and Milk....they even got to touch a Lobster....it was super fun. I think all the kids favorite part was seeing HEBuddy and tasting the Mootopia Chocolate Milk (and HEB milk that is lactose free and boosted with protein)!!!

After the play date we headed home so I could get my work done and then it was time to get ready to head out for the night for me. I put on a little black dress and headed out to COCO Chocolate Lounge and Bistro w/Sarah for her birthday party with the girls. It was super fun all of Sarah's friends are really nice and very sweet. The food (well I didn't eat dinner) look good, their desserts were amazing and the Chocolate Martinis were good. I had the Bliss Martini Flight which included 3 small tasting martinis: Chocolate Dipped Strawberry, Macaroon, Chocolate Sin.....So yummy! The atmosphere and decor were pretty cool.....Very cool place especially for chocolate lovers like myself.....I will be honest I was a skeptic of the martinis....but man they were pretty good....So good that I may have to hit the gym once this weekend!!!

First Full Day....

So today is President Obama's first full day in office. Whether you like him or not yesterday was an amazing day for our Country!!! I was glued to the TV coverage yesterday, hence the lack of blogging.....I am so positive and looking forward to where Obama is going to lead us.....It isn't going to be easy but I have never felt so emotional and inspired for us as a nation as I was yesterday....What a historic day!.....I love the Obama's! Loved that the girls wore J Crew and that Michelle always picks for the most part little known American Fashion Designers......They are so normal.....True American Family......

Beside watching the coverage yesterday, I also babysat the neighbor girls from down the street. It was fun for all the girls....a bit crazy having 6 girls under one roof, running around, girly screaming and having a good time.....It was great the twins loved having their friends over.....

Well I just got back from the gym, I think I am finally on track with being back there everyday....Hopefully I can shed the fat and continue to build my muscles again.....I am off to get the morning going!....

Sunday, Sunday......

Ahhh so it is Sunday night....I am always amazed at how fast the weekends truly go by. We didn't do much this weekend, stayed home mostly. Saturday we cleaned the whole upstairs, including cleaning out all the girls old clothes and stuff that they do not use anymore. We also watched Danielle (9) and Tim (6), our neighbor kids while their parents attended a wedding. The girls loved having them over, they pretty much smothered poor Danielle, I have learned that I need to teach the girls a little more about personal space......but they will get there. We did bbq burgers and ice cream sundaes, always a big hit with the kiddos....So fun! I think Tim played his DS pretty much the whole time, poor guy, its hard being the only boy sometimes.....I was surprised that we were able to get all the girls down pretty much on time, while Tim and Danielle stayed up until their parents came over........and it was nice to have Danielle read some Fancy Nancy to the girls!

Today we walked the 'hood, and washed the car.....it was so nice a sunny/breezy 76 degree day.....the girls helped with the car which was fun and wet!!! As it should be I suppose.

Washing the Car Jan 2009

We are looking forward to the week ahead and Barack Obama's Inauguration! As you know we are big supporters and can not wait to see what the future holds for all of us! We watched the concert on HBO today, so awesome and amazing to see so many different artists and actors and everyday people all in one place.....I Love America!

Bloggers Block....

I suppose you could call it that....I hope to be back, revived and inspired soon!.....With pics of course.....Sorry to all the faithful!

She's a free spirit.....

So Miss Lila has taken to taking her clothes off and staying nude as long as she can.....it started with me bringing out the potty chair, it has been out for a month or so.......Now when we change her diaper she asks to go potty (we are not training yet, just letting her experiment).....she has gone a handful of times.....Anyway she has learned how to take off most of her clothes......and even her diaper on occasion.....she probably gets nude at least once sometimes twice a day.....she LOVES it.....I suppose I can not blame her......she is hilarious too, lounging or dancing or singing....all in the buff.....she certainly keeps us laughing....

Back to an empty house.....

Well of course not empty....But the Harper's headed out early this morning. We enjoyed having them here and all had a wonderful time! Our last few days with them were spent on kids projects, house projects, card games, and GREAT food! I must tell you the BBQ is worth its weight in gold! Everything we have cooked on it has been 'Spectacular' as MJ would say (thanks to Fancy Nancy and her fancy words). Last night we did pizza's on my stone on the grill and they were so goooood! Direct on the grill would have been good too....

So Shawn got a Home Depot gift card for Christmas (Thanks Joe/Victoria!!) and took advantage of after Christmas sales to get us a new light fixture for the upstairs sort of hallway and a new outdoor light for above our garage doors....it matches our light outside our front door. Good thing Grandpa Harper was here to help install the outdoor light it was definitely a two manly person project mounting on the brick plus we wanted to make sure we did the wiring correct and to code.....It looks awesome and they were so good that they connected it up to my front door light so the both go on together and off together! Love it. First shots are of the upstairs and the last ones are the outdoor project....

We managed to get the tree and all the holiday decorations down including the outdoor lights. So sad to see Christmas be put away, but I am sure it will be back here before we know it. I guess I now get to look forward to our Valentine's Date with the girls, burgers and shakes....Suppose I better get looking for a place to try......

Anyway I hope everyone had a Happy New Year. Shawn, the girls and I did. We went to our neighbors house and rang in the new year with the twins and our wonderful neighbors and friends. I am surprised that the twins made it that long.....I did have to take Lila home around 11.15pm and put her to bed. She rang in the new year sleeping as did Nanna and Grandpa! Too cute!! The New Years Angel came sometime after new year.....We all awoke to stuffed stockings...an ol' family tradition on my side. It was fun for all....and we all got stuff we needed!.....