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Jagger is doing great he has not had one set back since I took him home 10 months ago. He hasn't had a cold the flu or anything (crossing my fingers). I have been super lucky that he is a healty little boy. He is going to be turning 1 in 23 days. I keep thinking where did that time go? He has been walking for about a month now he really really wants to run but hasnt figured that out yet ( I give is a week). He says a few words like Mama and Dada, Nana and Papa. He is just AMAZING and I am so proud ...
My little girl is 19 months old and we found out yesterday that the surgeon will have ot go in and take out the initial repair (done at 1 day old) as her body is rejecting it. Seems like it wouldve happened sooner however its not the case. They will be tearing the old repair out nad replacing it with muscle taken from her shoulder......anyone else have this happen?
Our Left Sided CDH Survivor Son (Charlie) and Daughter-N-Law (Kelli) just announced that they are Expecting Twin Girls in July 2013.. Please Join Us In Our Celebration !!! Debbie & Gerry Freed
The doctor called about 45 minutes ago. The Chromosome tests all came back normal. She has a fighting chance now. I feel free and hopeful for the first time in a week. I'm emotional about it, still wanting to cry just from sheer relief. But now her chances of survival have increased again. I wait another week to go back to the doctor and then I WILL take a list of questions. I want to know where we go from here. I know we still have a long road ahead, but I feel her kicks getting stronger everyday ...
Well, Tuesday's appointment did not go as I had hoped. We got more bad news. Her CDH is severe. They can't tell how much lung tissue she has on her left side because the liver is blocking them from being able to see. Also the left side of her heart is quite a bit smaller than her right side. The doctor was unsure if its just because its crowded or if its another defect caused by a chromosome problem this time. So we are doing the DNA testing thing. I was devastated to hear this because of what happened ...