Wednesday, January 20, 2010

A little update...

Playing in her saucer a few months ago. She is such a happy baby despite what she is going through.
Ellie on Christmas Day!! She has gotten so big and notice how good her eye looks.

Ellie had her echo this month and for the first time in a while, we heard something hopeful from her Dr. Ellie's mitral valve was leaking severely but now is slightly leaking and her left ventricle is slightly smaller than her Oct. echo. Barely, but it is a good sign. Dr. E said we can hold off on the cath until we see it get worse. We still have yet to see function change at all. But I guess if it's not getting worse, than the longer we can hold off on that cath.

We also saw her pediatrician today who said she looked really good. Only I had my heart sink when we put her on the scale and she weighed 18 pounds 8 oz, which is what she weighed last time!!! A month ago!! At her cardiology apt. she weighed 19 pounds 6 oz. two weeks ago. I am not sure if she lost weight or what happened, but with these heart kids it is so crucial that they gain every ounce and not loose any. My only thoughts are that she has been moving around more and she has been eating less. She is snubbing her nose to more foods that she used to just snarf down. If you have any suggestions for some good 13 month age food, let me know. We are still feeding her high calorie formula, but her bottles are getting fewer and farther apart.

She also had her Synergis shots today. Ouch!! Those things are brutal. And Ellie was a champ today. We thought she was going to pass out from the length of her cry, but she managed to catch her breath and not pass out. The nurses are very aware of Ellie so it's cute to see how they come up with new tack tics to soften the blow. She won't cry when they walk in the room until they are holding that metal tray with the shots on it, so this time they blew up a glove and drew a face on it and brought it in so it was hiding the tray. She grabbed the balloon and gave it a kiss on the mouth. It was so cute! Then she spotted the tray and started to wail. It was a good try.


  1. I am so happy that things are looking better and you can put the cath off a little longer. Synagis is rough and I would love a trick to keep their minds off it too. You are all in my thoughts and prayers.

  2. I'm so glad the echo showed some improvement! One thing to think about that i had a problem with in the beginning is that the scales are probably different at each dr office. Compare her on the same scale if you can.. Anyway, hope all goes well in the next while. :)

  3. That's so cute that she kissed the balloon! You know, it's funny that you mentioned her eye looking better, I had totally forgotten that it was ever droopy. Love that cute mug! Glad that you had a good doc. appt. Thinking of you guys always!!!

  4. So glad to here there in a little improvement, I think of you guys all the time. As for the Synigist shot they are horrible, this is the first year Whitnee did not get it. I love knowing it is not costing me 5,000.00 a month or more this year. Good luck I love that liquid gold!!!!!

  5. I think that Uncle Brent and Aunt Ree Ree need to take her for ice cream!! Lots of yummy calories.