Katy climbing the stairs

When Months Simply Disappear

August 5, 2010

A lot has happened since that last post of Katy walking in the water:

I’ve found myself dealing with stresses and problems I’ve been trying to maneuver around for five years. And unfortunately, there is a lot of misinformation that has gotten thrown around for far too long. I have no interest in airing my dirty laundry to the world, but I have decided that this needs to get taken care of head on. I just hope I’m strong enough to deal with whatever falls out from this.

We found out our entire Mayo Clinic appointment was canceled. Evidently, the doctors within the Pediatric Developmental Delay department relocated and somehow that voided our entire visit. Thank God I called to find out why we still hadn’t been contacted. They evidently sent us a letter, but we never received it (and believe me, any letter that said Mayo Clinic would have been opened immediately).  So after another bout of massive frustration, I went back and redid the entire application again. Now we finally have our dates: October 18 through 23. In fact, a package just arrived yesterday for us to have Katy’s genetic test redone. The test has improved drastically in the last two years and they want to find out if anything is different than what we were originally told.

We were featured on exceptionalfamilytv.com in two separate episodes: 1st was Michele and I; 2nd features Maggie and Bryan (okay, limited Bryan – he hated being on camera here).

Katy was also featured in the August issue of Exceptional Parent Magazine. I’ve put up the articles in the media section of this site. For the full magazine, visit: http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008/

And, throughout all of this, Katy has continued to grow stronger and achieve more and more. The video below shows the kinds of things we’re dealing with now on a daily basis:

{ 5 comments… read them below or add one }

Aunt Pat August 7, 2010 at 11:41 am

Well, this is very encouraging. Katy seems to be doing better & better!

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Nana August 7, 2010 at 4:45 pm

Wow, Katy! You’ve had quite a summer!!!

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Marcia Behr (ra-ra) August 12, 2010 at 2:15 pm

AWESOME! I am so lucky to have been a part of Katy’s life for a little while. Best wishes and God’s blessings to a truly wonderful family!

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Sara Ladd August 17, 2010 at 11:33 am

Hi there! Thanks for the information on this blog. My son is only 10 days old and was diagnosed with 6q deletion. We’re in the stage of trying to get as much information as possible as the doctors have told us they don’t know much. Further testing is needed to find out exactly which genes are missing but he’s so medically fragile right now that taking the blood needed for the test is not appropriate at this time. I’m just looking to talk with someone who has gone through this similar situation. Thanks. Sara (Lincoln, NE)

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Todd August 17, 2010 at 11:45 am

Sara- I wish all of our best to your family and to your son during this time. We’ve been there before. My wife and I more than happy to talk to you anytime you like. Please e-mail me directly at oswald.todd@gmail.com. We’d love to help however we can.

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