Bag of Me

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Evan's first homework assignment this year was Bag of Me. He had to come up with 10 things that represented his likes and dislikes, his personality, etc. and they had to fit into a brown paper lunch bag. He then had to write about each item. I was determined not to help him and honestly, he really picked most of the items on his own. I suggested the cat toy to represent Kali! The item that moved me the most was the hospital ID band. I knew one of his items would be a Lego, a picture of the family, a video game, mention of his love of history. I never thought he'd include something that represented his medical issues. It kind of took my breath away when I saw the band and read what he wrote. I guess I shouldn't be too surprised since we've always told him that his scars represent who he is and without them he wouldn't be here. This will be one of those homework assignments that I will keep forever.

I have alot to blog about

but it's not going to happen tonight! I've been so tired this week. I think it's just the combination of jet lag and a big dose of reality. Evan being sick, back to work, school beginning. Just one of those weeks. I thought I was going to be energized after having such a wonderful vacation but obviously it wasn't enough!! I will say this. How can it be that Evan is now in 4th grade?? I was just stressing over where he was going to go to kindergarten. I now get to start worrying about middle school!!

A piece of good news

When Evan was born, the geneticist talked to us about VATER/VACTERL Association. It's called an association, rather than a syndrome because while all of the birth defects are linked, it is still unknown which genes or sets of genes cause these birth defects to occur. Each child with this condition can be truly unique, with defects being different from any other child. At present this condition is treated after birth with issues being approached one at a time. So, when Evan was born the TEF/EA (the TE in the acronym) and an extra thumb (L for limb anomalies), they immediately checked his vertebrae (V), his anus (A), his heart (C for cardiac), his kidneys (R for renal). While they didn't find any glaring issues with his vertebrae at birth, we knew he was at risk for scoliosis. His pediatrician noticed some curvature about 3 years ago and we've been seeing an orthopedic surgeon every year for a check. Last year the degree of curvature was 13 degrees. Of course I have worried about this-the last thing my kid needs is to wear a brace with everything else he's gone through. So, our yearly check was Thursday. Evan went off for his xrays and then we waited for the doctor to come in. When he did, he gave us some wonderful news. This year there is NO measurable amount of curvature. None. His spine is straight. We don't have to go back for two years and then if no signs of any new curvature, then maybe once when he's a teenager. He told us how to look at his spine and he showed us that because Evan had a thoracotomy when his esophagus was repaired, the top of his back can look like his back is curved. He also told Evan to make sure he tells us if his back ever hurts. I was and am so incredibly happy. And no, believe it or not, I didn't cry!

More on VATER/VACTERL:

www.cincinnatichildrens.org/health/info/heart/diagnose/vacterl.htm?GRAB_ID=30434850\&EXTRA_ARG=\&HOST_ID=1\&PAGE_ID=743\&HIWORD=VATER%2B