Friday, July 30, 2010

Summer Update

Well, I would say it is about time I updated! It has been a fun but very busy summer! I have really enjoyed being home with Grace this summer. She is getting so big and changes everyday.

Doctors and More Doctors:
So we took Grace to the eye doctor and found out that she has good eye sight. Normal for her age...and let me tell you, not many doctors ever use the word normal when they talk about Grace. But what is normal anyway :)! It was still good to hear. We also made our way to the kidney clinic, which is alway scary because Grace always has to get blood work and a urine sample (they use a catheter, not fun). Neither went well, as they could not get the blood from her. They tried both arms while she screamed and looked at her mom for was a horrible day. We had to go back the following week and they finally got her blood in the first try. The good news is that Grace's blood work showed that her numbers for her kidney function are still stable, which means no transplant for now, we just hope they stay stable for a long time!  The kidney doctor is a little worried about her growth pattern. They feel that her growth has slowed down and that she is small for her age. This may be due to Emanuel Syndrome, but can also be linked to renal failure. So she may set up an appointment with Endocrine, which could lead to giving Grace hormone shots daily (we are saying lots of prayers that we don't have to go down that path!)  We also saw the orthopedic doctor and found out that Grace's left hip is dislocated and her right hip is also nearly out. It amazes me that she is not in any pain with this and that she still kicks her legs.  After talking with the orthopedic surgeon, we have decided to leave them surgery for her. Grace doesn't tolerate surgery well so it is really the last thing that we would want to do. So for now they will just keep a close eye on her hips. The doctor made us feel better about this when he told us that people with dislocated hips can still do everything that anyone else can do...but it may take longer. We are used to that, so for now, no big deal.  Grace had a great visit to her genetic doctor. We have known him ever since we found out that would be born with Emanuel Syndrome. He has been there through it all! He was so pleased with how well she is doing. His words "There were many times that we didn't think she would make it. She has come so far." It is always good to see him.

Some Awesome Firsts!
The first week of summer Grace learned to roll from her side to her back! It was a very exciting moment.
Grace also had her first haircut...which only took about 5 minutes, but was very fun for us!

Sitting Pretty
Beautiful girl!
She also has been very busy teething, which is not fun for anyone. She now has three teeth. Two on the bottom and the newest one on top! Yeah Grace!

FUN this Summer:
Grace's favorite thing by far this summer has been going up to my parent's place on the lake. She loves to watch the trees and enjoys swimming in the lake and the pool! Mommy bought her bubbles and she loves watching them. You can tell she is spoiled because now she has about 2 gallons of bubbles!
Happy 4th of July
Swimming in my pool
Uncle Jared, Cousin Mac, and Grace
Grace and Grandpa John at the lake

The summer is far from over and I am sure we will have many more fun adventures!

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