Wednesday, June 29, 2011

Geneticists, Nutritionist, and Endocrinology

Monday we were at Doctor appointments all morning. It was a really long day. We had to be up at Primary's at 8:00 for Savannah and Xander's Geneticists appointment. Savannah didn't want to take off her shoes not her princess crown to get her weight and height. But, she was bribed with lots of stickers. The appointment went good. I'm so glad I broght the I pad for Savannah! We just went over everything that the kids have and, he was making sure that we are seeing all of the specialist that they need to be seeing, and checking them for all of the basic BBS stuff.

Then we saw the nutritionist. We went over the kids weeks worth of food log that I had made, and I felt like a horrible mom for not doing all of the extra steps to make their food healthier and for giving them snacks, and so much milk. She is going to put together a calorie diet for both of them. They will be able to only have so many calories a day. It will be hard, but it will be good once we get use to it.

The kids had to get their blood taken and urine samples. Poor Xander had to have a bag, and Poor Savannah had to go in a cup. Neither happened. I finally got Savannah to go today. I don't know what they will do about Xander. I really am a bad mother. This is one of those things that I really don't ever want to do but, I do it because I love them and I have to.
They need Savannah and Xander's urine and blood samples to make sure their kidneys and liver are working right.When they took Savannah's blood, It took two nurses and me to do it and hold her while she was kicking and screaming. I was trying not to cry. Then, another nurse came in and blew bubbles for her to try and get her mind off the needle. It didn't work. When they were done, they wanted do put a band-aid on her but I told them Savannah would freak out even more. She doesn't like things like that on her. All of the other times she had to have a band-aid did not turn out so good. They wrapped her arm over the gauze. She didn't like that. Did I menchen, they put hospital bands on them and Savannah really didn't like that. She tried to run away. The nurse took Savannah to pick out a blue play dough while Xander had his blood drawn. She really saved the day! I felt so bad for Savannah and Xander and for all of the nurses who witnessed the seine and tried to help. It was scary.

Then, we went to the Diabetes Center for Savannah's Endocrinology appointment.Savannah screamed the whole way there. Savannah ran away down the hall a few times, and they gave up on trying to take her blood pressure and they were the second ones to try to take her princess crown off and give up for trying to get her accurate height. Savannah is 52 pounds. I was so afraid that she was going to tell me that Savannah has gained way too much weight and that she has diabetes. I was so suprized when she said that she was amazed at how well Savannah is doing with her weight and that on her weight chart she has a flat line from the last time. She is staying in the 97% for her weight, and that is really good!She said," whatever we are doing to keep doing it!" I don't know what that is but, okay. Savannah got a cute little bear. She loved it!

Savannah and Xander bot fell asleep in the car on the way home! They had a really long day. I wish I could of taken a nap too!

Sunday, June 26, 2011

Xander is walking!!!

Xander is 14 months old and he is walking!!! Yea Xander!!! He dosn't do it all of the time, just when it is convenient for him. LOL
Savannah started her first day of summer school last Tuesday. This is Savannah's favorite tree that she loves to hide in!
For the most of two weeks Savannah has had to wear her princess crown, even to school. It makes her happy so, I let her! She is a princess after all!

So cute!!!
Savannah had a sleepover with her cousins this weekend! It was so much fun painting nails and doing all of the girly things!
I made a homemade facial mask. "Eatable" I knew Savannah would have to taste it, and we all did!
Yogurt Oatmeal and Honey Mask


1/4 Cup Plain Yogurt or Buttermilk
1/2 Cup Oatmeal
2 TBLS Honey
Finely grind oatmeal in a food processor or blender. Set aside.
In a small bowl mix together honey and yogurt.
Add Oatmeal.
Mix together until a smooth paste has formed.
Smooth over face and neck. Leave on for 15 minutes. Rinse with warm water.
Gentle enough to be used daily.
I had to put on the mask too!
Savannah wouldn't let me put it on her. She said it was "YUCK"! LOL
Savannah is trying to figure out what is on her cousins face.
We also made Kool Aid Pop Corn and watched princess movies! It was so much fun, and so yummy!!

We made Grape and Pink Lemonade. We all liked the pink lemonade the best! The grape was a little strong. If I use grape again I would only use half of the grape kool aid packet.
Kool Aid Pop Corn

12 cups air-popped corn
1 cup sugar
1/2 cup butter (one stick)
1/4 cup light corn syrup
1/4 teaspoon baking soda

Over medium heat, combine sugar, butter and corn syrup. We were brave girls, doubling this recipe as we went along... it worked out well and if you think this will be enjoyed as much as we do, go for it. Try not to stir the mixture too much while you bring it to soft crack (260 degrees) on your candy thermometer. Remove from heat and stir in the baking soda, one package of your desired Kool-Aid mix and some drops of extra Wilton gel if you like your colors bold and bright, like we do.

Toss it quickly! This is why it is best to work with a partner, right Sassy? Things can get pretty sticky pretty fast. Once the popcorn is lightly and evenly coated, turn it out onto some shiny side up tinfoil and let it cool until you pack it up.

Savannah loved watching the pop corn pop!

This last week I've been recording everything Savannah and Xander eat and drink for the Geneticist and Nutritionist on Monday. We also have an appointment with the endocrinologist Monday too. It's kinda scarry how much milk they drink, and I really shouldn't give Savannah snacks to bribe her to be good for me at the store and places we go. I feel like such a bad mom. They have the same thing for lunch almost every day. They either have a peanut butter or a cheese sandwich and a fruit every day.
Saturday, my friend put pink hair and two feathers in my hair for me! I LOVE it! It's so much fun and just something different for me!

Saturday, June 18, 2011

Team Two Little Reasons VisionWalk 2011

It was a perfect day for the VisionWalk!This is amazing team! Thank you for coming out to support Savannah and Xander! Unfortunately, Some of our team weren't able to make it. We missed all of you! Maybe, next year!Our team Two Little Reasons T shirts were blue because that is Savannah's favorite color right now!They have Savannah and Xander's hand prints on the front. Xander's little hand print is with his sixth finger. I love how they turned out! Thank you Erin, Rob, Becky, and Rob's very kind friend who made the shirts for us. Thank you so much all of you!
We finally got Savannah to exchange pink shoes for her rain boots!
Savannah loves her cousins!
My Sister-in-law and mother-in-law came to support us! They are awesome!
Savannah and the kids enjoyed playing in the bounce house!
Poor Savannah always had a long line of kids behind her and kids trying to get past her, but she was having too much fun to notice!
Savannah's sticks and leaves!

One of the many times she decided to go take a nature hike by herself. LOL

Thank you everyone, for all of your love and support! It truly does mean so much to us. It feels good to do something for such a great cause! I know that everyone has struggles in their life's. This is very dear to us and I just feel that I need to do all that I can and, we need to fight for Savannah and Xander and others like them. We need to fight for our children with all different kinds of special needs. They need us to fight for them. We are the ones who can give them a better future! We can't wait to do this again next year! Thank you again!!!

Savannah saw the ducks and ran off just after the walk started. I stayed with her because she wasn't going back.We ended up feeding dirt to the water and walking around the pond for the first half of the walk.
Yes, I let Savannah have some cotton candy, and a blue snow cone. I am guilty!
But, How can you say no to that? I did eat most of her cotton candy though!

It was so nice to be there surrounded by close friends and family!

This is what Savannah did to her glasses in the car because she was board. I almost cried!

I am so thankful that organizations like the Foundation for Fighting Blindness exist. They give us hope for the future for our precious children like Savannah and Xander. They give us hope and an abundance of amazing people that you never would have met. They bring your family and friends closer. It is so incredible to think how blessed Savannah and Xander are by all of the love and support by so many people all around them and to know that no matter how bumpy or dark their road ahead will be, we are all here to guide them.
We love you Savannah and Xander, ALWAYS!