Welcome to our CaringBridge website. We've created it to keep friends and family updated about Colbie and Lleyton. Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
This website is our way to share with you everything from their latest accomplishments to their most recent appointments. We are still without a diagnosis and we hope this website may also network their story. We feel incredibly blessed to have both Colbie and Lleyton in our lives and they are lucky to have people like you that love them so much as well.
Colbie and Lleyton both have global developmental delays. They both have hypotonia (low muscle tone) which is the reason why they cannot sit up, crawl, or walk. Hypotonia is not a diagnosis though...it's a symptom of something bigger. We have yet to find that diagnosis. The delays don't just stop there. They are both cognitively delayed as well. Neither of them can self feed or talk and both are still in diapers. We have taken Colbie through multiple hospitals, doctors, and tests. She has been through Univerity Hospital of Cleveland, Cleveland Clinic, Johns Hopkins, and the Children's Hospital of Philadelphia, and both were in the Rare and Undiagnosed study at NIH. All along the way we have met wonderful professionals. With every test and appointment the results have all come back "normal or negative". While that sounds wonderful...it's also confusing and frustrating. (With all the negative results we decided not to put Lleyton through many of the tests that Colbie went through.) We realize our children have special needs and we manage that everyday. We have been taking them both to therapies since they were each only a few months old. Each time we go to a new doctor we always have that hope in the back of our mind that we will finally reach a diagnosis. A diagnosis that will help us reach out to other families with similar children. In the end we are trying to do what is best for our children and to help make them the that they can be.
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