Tonight we went Trick or Treating with all three of our kids. They were all cute as buttons. Kyleigh- well we have already seen her poodle outfit. Owen was a dinosaur and Ross a shark. Tonight walking up and down the street I realized some things. I find myself thinking about bigger, deeper things at [...]

Here are a couple more pics courtesy of Sarah Ulrich- Uniquely You Photography from this weekend! I am just tickled pink… this is why everyone… even us pros! should hire a professional to photograph their kids! I was so overcome looking at these that I just cried. Its so incredibly special to see her up [...]

Its about 6 am and we are headed back to Kentucky. We have a session at 3 pm that I am hoping we do not have to move back. I cannot believe that Troy would schedule a session today… what a dingus! I wasn’t going to do anything again until Friday! Oh well… live and [...]

I am sitting here in Kim’s quiet house realizing that yet another month of our life is gone. Another month spent riding the Kyleigh Coaster and waiting… up and down and everything in between. We have been here in Springfield since Thursday and it just doesn’t feel like its been long enough. Troy and I [...]

We are enjoying some much needed time away from Lexington. We are here at my best friend, Kimberly Smoot’s house in Springfield, IL. There are about 12 photographers from all over the country. I was so incredibly privileged to have a dear friend of mine, Sarah Ulrich, of Uniquely You Photography in Lincoln, Nebraska photograph [...]

The answer is simple. Three health care coverages is how you pay. Kyleigh is covered by our primary Blue Cross and Blue Shield, then by Medicaid Waiver, and then by Kentucky Commission for Children with Special Health Care Needs. With all three it means that we don’t pay anything over our monthly premiums for Kyleigh’s [...]

In navigating the waters of our medical care for Kyleigh one thing has become abundantly clear…. the world needs VACTERL doctors. First off each VACTERL kid is as unique as every human. No two kids have the same exact diagnosis. None need the same exact pathway of care. But all of them share multiple congenital [...]

Warning: this is kinda long so grab something to snack on. Yeah this is Troy. Haven’t posted in a long time and just wanted to give my two cents about our family, the situation, and my hopes and fears. Here is the timeline from today. 9:08 Arrive at front door already 8 minutes late.9:38 Registration [...]

GREAT NEWS!!!!!!!!!!! Two docs worked together after Ky’s VCUG and were able to removed the screw through her stoma. No cutting needed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sounds like the bounty hunt worked! I will have to send them something neat to say thanks… I hugged the poor doc… I think his name was Josh. I was just in shock [...]

In the words of Matchbox 20…… its 3 am I must be lonely! LOL Or sick. Yes. So at 9 am Kyleigh will have a VCUG to test how her bladders empties and see if there is an refluxing into her kidneys. She will also have a barium enema x-ray to see if a) we [...]