Wednesday, July 15, 2009


So we had Faith's appt. with Shriner's, on Monday. They said that alot of children, like her, have osteopenia. They didn't seem that concerned about it, but they did say that we really needed to have the gastrox release surgery. We have been putting it off for several months, trying to get her closer to 6. So we decided to schedule it for Nov. She will be in double leg casts to her knees and knee imobilizeres, too for up to 6 weeks. I am DREADING it! But I guess it's better to get it done before we start school, next year. If anyone out there has been through this surgery, contact me, would love to talk!


Cjengo said...

Just found your blog. I am sorry you are dreading the surgery, I would be too!!

Amy Genn said...

I know what you mean! I've finally realized that this is a journey....for a lifetime. There will always be new stages to deal with. I thought the first couple years were so hard dealing with the reality of having a disabled child. Then as all Eli's friends started turning 3 and he was still like an infant...I entered a whole new phase. It seems to be getting harder on some levels, and easier on others. I love him so much. I want him to experience life and enjoy things. I want to introduce him to the world.
But the world doesn't quite know what to do with kids like Eli.
I'm on a mission to educate the children in his life. Eli's 4th birthday is in August. We are having a Safari Treasure Hunt. (I go all out each year for his party, as it's the only thing I do where I feel like a normal mom). I'm going to have all the kids sit around me holding Eli and tell them about him. I keep it simple by saying "when he was born his brain got hurt and he can't move and do things like you can." I'll let them ask questions, show him a bear we have that has a feeding tube, and then ask them to help Eli on the treasure hunt.
I want the kids to feel comfortable around him...not scared of him. I'm excited to see how it goes! :)
Hang in there....and grasp tightly to God's word. It's the only thing that keeps me going. :)

P.S. Email me and I'll send you the giraffe button. I made it. I design blogs, too. :) Let me know if you'd like your own custom button for Faith!