Tuesday, December 4, 2007

Merry Christmas from Ched!

Quick update on my man, Ched!

He is doing really well right now. We have watched him really make progress since his colostomy in July. Ched is now gaining weight and developing well. He has actually caught up in all areas, except speech which is slowly coming along. While we are currently treating a bacterial infection in his gastro system, Chedner is actually eating, drinking and sleeping better than he has since coming to live with us a year ago. It is so hard for us to believe that he has been with us an entire year already! Wow, time with him has just flown by. Chedner is no longer a little baby, but now a full-fledged toddler. He is a joy to watch as he explores, plays and basically enjoys life to its fullest.

Although we'd like to just rest on our laurels, that is not Ched's path. In January, Chedner and I will travel to Johns Hopkins University Hospital in Baltimore, MD for his next surgery. It will be a 6 - 8 week stay in Baltimore, but we feel it is the best decision for his future. Since summer, I have mentioned to many people that I did not have a sense of peace about Chedner's next surgery. It is so huge and there are many future issues riding on it's success. Because I was so uncomfortable with our tentative plan, I decided to ask the exstrophy clinic at JH for a second opinion. I like and trust the doctor's at UVa and they have helped us so much this last six months; however, there were a few questions that we needed clarification on before moving forward. Our appointment there in October went really well and after leaving, Jay and I decided that we wanted the doctor at this clinic to do the surgery. So in January, Chedner will have the surgery to have his bladder placed deep inside his abdomen and will have his abdominal wall reinforced. He will continue to leak out of two urethras for quite a while still as he will need more reconstruction by the time he is four or five to help with continence. At this point, we do not know if he will be able to be continent, but there are some hopeful signs. A test they will run prior to January's surgery should also give us more answers to this question.

The other half of the surgery is to reshape his pelvis. They will break it in four places and pull it together in the front to reinforce the abdomen and bladder repair. This will also pull his hips & legs forward so that they will no longer be externally rotated. To keep the bones in place until the heal, Ched will have a halo traction devise on him for at least 6 weeks to give the bones time to fuse. I have to admit that it is hard to watch him happily running, climbing and wrestling and to know that soon he will be immobilized for all those weeks. Ched has worked really hard to figure out how to run and play with his pelvis as it is, but he will be more stable after the fix. The docs said once we are released, it will take another 2 months or so for him to figure out how to do all those fun, physical activities again. We think with his brothers' help he will be moving sooner than that!
Our plan is to enjoy the holidays and to give our worries to God. It is hard to think of him having to undergo yet another surgery, but we know he must. We feel blessed to be the family to care for Chedner and are beginning to see where his future may be heading. God surely loves this little boy and His plan is always perfect. We'll keep the blog updated on Chedner's progress. Thanks for all of your prayers and support for this special guy!


Kim said...


Chedner looks so good and so happy. I'm glad to hear that he is doing well. I'll be praying for successful surgery and recovery.

Our Chad is doing well too. No more seizures after almost four months of treatment.

Praise God for these little ones!

Fran said...

Hi Kim!
Great to hear from you. I am so happy to hear that little Chad is doing so well. I have thought of you all this Fall and wondered how he was doing with the new treatments. Amazing progress!
Keep in touch,

Troy & Tara Livesay said...


You're doing great!!! God sees and He cares for you and Ched and your every concern.

We love you!