Abby Williams

This page is to help our friends and family keep up to date on Abby's progress, growth, and general activities! Abby has been diagnosed with Fanconi Anemia (see www.fanconi.org for more information), born with an absent thumb, pelvic kidney, missing permanent teeth, and most recently - she has tethered cord syndrome. We appreciate you taking the time to visit our site, and we hope you sign the guestbook!

Journal

Wednesday, January 7, 2009 9:27 PM CST

Our family is on vacation this week, and having a great time just being 'away from it all'! I'm feeling bad about not updating the site, been thinking about it a lot, but feel like there just isn't much to tell.

Abby seems to be doing well. I still worry about her daily, but on the outside we put that happy face and say that she's doing well. Because, well, she is doing better than so many other kids with and without FA. We're having some behavior issues with her - and I struggle with that. I think Trent was such an angel that we didn't know how good we had it! HA! Mostly she just likes to get her way, and her will power is stronger than mine (can you believe that???).

Mike and I think the behavior thing is mostly fatigue, since it's generally evening time that she acts out; but is that just our way of making excuses for her? Not sure.

When I first came home from the hospital with Trent (as an infant) I couldn't believe all the things that I worried about. Now, at age 9, I worry about different things, but very little - he's a good kid. Abby, on the other hand, brings so many other things to worry about.

For example, she's tired, so it is a problem with her red cell counts? She's crabby, so is she in pain? She's getting a bit of extra weight on her, is she having endocrine issues I should watch out for - or am I just not feeding her well enough? She's just a bit of an anomaly to me at times.

I'm sure it's normal to worry - but I wish I only had to think about the normal stuff like cavities and making friends. Not 'how is she handling the teasing at school?' and 'does she have enough support at school?' or any number of medical questions.

I know I'm complaining - venting - whining - whatever. But as we enjoy our vacation, I can't help but think how we changed our plans today because we knew she didn't have the energy to walk as much as we needed her to, and we knew she'd be too tired to do late day activities. I'm very glad we did make the changes, as tonight she is much happier and calm than she was yesterday at the same time. Quiet evening in with her favorite show the Backyardigans.

Anyway - Christmas was wonderful, as is to be expected - New Years was great, we were able to enjoy our visit with the Agre family. And, now we're on day six of the vacation - one more day here, then two in Arkansas, then back home. AND amazingly we are still a happy, loving family! (smile)

I'll get some photos loaded of our trip to butterfly palace once we get back home, hopefully!

Kim

Hospital Information:

Children's Minneapolis

Minnesota!!

Links:

E-mail Author: mkta1996@gmail.com

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