Archive | December, 2010

Second weight check

Gabi had her second weekly weight check at her pediatrician and she gained, drum roll pleez…. a whole pound!!  One pound in one week!  Of course, this now could be too much weight.  There are 453.59 grams in a pound, which means she gained almost 65 grams a day.  The ultimate goal is for her to gain 10 grams a day.  BUT, if they have to tweek her food intake, I so don’t care.  This just confirms that they didn’t miss anything related to her cardiac function and it will prevent the docs from doing any further tests to see why she wasn’t gaining weight.  They were thinking possible celiac disease or crohns disease.  But with this success, they will rule those out! And she even has a cold and she was throwing up more often because of the mucous… I was really worried.

Gabi is our Christmas miracle!  I am finally able to look at her and not see a sick child. For the past 18 months of her life, I would concentrate on memorizing her face and her movements and her expressions and her babbling.  I wasn’t sure how much time we were going to have with her and that’s all I could think of. And the thought of her ever forgetting how she smelled or the sound of her laughter was just too much to bear.  Yes, I have accepted that she may live a short life but that doesn’t make it any easier.  I make certain her quality of life was the best I could possibly give her.  If this was her short life, I wanted her to experience happiness and love and nothing else!  I know that is impossible, but it was my goal.  I thought for a long time of quitting the therapies because I thought who cares if she isn’t strong enough to crawl… I didn’t care if she was “low tone”. It is so natural to plan for the future whether it be in many years or just a few months, but with a sick loved one, to enjoy the moment and enjoy every day is the goal… Gabi is our Christmas miracle and she brings unbelievable blessings to our home…

I truly hope everyone has a wonderfully blessed Christmas season and a Happy Happy New Year! And I pray everyone can find a Christmas miracle in their home, because there always is one. Sometimes you just have to adjust how you view something or someone.

With  much love and relief,
Teri

This is at Arlington Pediatric Therapy. Gabi and Ethan Jr. receive therapy there and this was their annual Christmas party. It was very cute.

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Doing great!

Just wanted to let everyone know Gabi is doing great! We go in for a weight check on Friday and I will let you know what her current weight is.  She is getting better at eating orally, but we still can’t count any of the calories from food because most of it just drools out.  Sheila, our speech therapist explained that she holds it in the front of her mouth because she doesn’t have the strength or the coordination to move the food to the back of her mouth to be able to swallow it. It is a mess when she “eats!”

I hope everyone has a wonderful Holiday Season and a very Merry Christmas!

These are pics from her most recent hospital stay!
Love,

Teri

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Heading home

Gabi is doing great and we are headed home! Just waiting for paperwork and to schedule follow ups. They upped her food intake and we will get weekly weigh INS at our pediatrician. If she doesn’t gain weight from this, they will run more tests for things like celiac disease. My instinct telling me she is just fine and just needs to get more calories.

Thanks for all the prayers and well wishes. And thank you to our wonderful neighbors for all the help with babysitting and driving! We are so blessed.
Love,
Teri

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