Saturday, June 30, 2007

Chedner's on the mend again.

Chedner has just had his third surgery, this last one in Virginia. He has multiple congenital anomalies seemingly caused by Caudal Regression Syndrome, a rare birth disorder. He needs a number of major repairs still, but this surgery was small by that scale. Ched had three hernias, one of which was getting stuck and causing problems. Last Thursday, the doctors fixed two of them and completed a few tests which attempted to map his anatomy more clearly. The good news is he is recovering quickly and is back to his smiley self this morning. The hernias were complicated, but the docs feel they have a good fix in place. Without significant stomach muscles (he didn't grow many in utero), they had to figure out how to keep the hernias closed. Ched will eventually have bladder revisions and the surgeons will attempt to reinforce the muscles that he has there. The tests showed he has a bladder of sorts and we are chosing to be optimistic in hoping that it will function correctly. Surgeries to revise his urinary system will begin in next fall. Not so good news....his sphincter muscles are not working well and the strongest one isn't in the correct location. Basically, this means he is incontinent and will most likely remain so. We meet with the surgeons in a few weeks for a post-op check and discuss surgery for the colostomy before the end of the summer.
Thankfully, Chedner remains a happy, easy-going boy most of the time and we are enjoying watching him grow. At 16 months, he has a sense of humor and a temper, is talking a bit and can crawl all over. He does know how to stand up, but due to a malformation of his pelvis and bilateral hip dysplasia, he isn't walking. We don't know when or if he will walk unassisted, but a visit to the ortho doc will hopefully give us some guidance on in this area. We are hoping to get him a walker sometime soon so he can get up and chase the other boys around.
Please keep him in your prayers as we go through the summer and into the fall. It is often hard to believe that one small body can have so many problems, but at this point, it appears I care and worry more about that than Chedner does. He is just enjoying life!!

Berny & Guillain-Barre Sydrome

Hi Everyone,

Little Berny who has been here through AMH several times for his cleft lip & palette repairs, is now back in the US. Vanessa traveled to Haiti over a week ago to bring several children back (reunion pics coming soon) and to meet with a few folks. The day she arrived, she heard from Bernard, our wonderful Haitian friend who helps us with the medical visas, that Berny, his son, had woken up that very morning unable to walk or even move his legs! He was fine when he went to bed the night before, but the Haitian doctor feared he may have hurt his back and had sent them for an x-ray. Unfortunately, over the course of the next few days, the paralysis ascended to his arms and his hands. Vanessa found an American doctor to take a look at Berny and she diagnosed him with Ascending Paralysis or Guillain-Barre sydrome ( This is a strange sydrome caused by a virus and causes on-going paralysis until it runs its course. The immediate problem for Berny and his family; however, was the short-term concern that if it reached his diaphram and his lungs, Berny would not be able to breathe. There are no facilities to provide children with this type of urgent care in Haiti. If the virus reached his lungs, he would need to be put on a ventilator quickly in order to save his life.

Thankfully, Dr. Tracee was able to write the letter soon after she examined him and Vanessa was able to get an emergency visa for Berny to return with her for care. A hospital in Roanoke, Virginia agreed to give him care and he did well on the trip. He was put in PICU for a number of days and given as much medications as was able for this disease. Fortunately, the paralysis did not reach his lungs and he has some use of his arms at this time. He was released a few days ago and is staying with Heather and her family for the time being. Our prayers are now for his recovery and that he will be able to learn to walk once again. The doctors in Roanoke said that Berny is the youngest patient they have ever seen with his disease and they are unsure of how to predict his recovery. Most patients do recover all or most of their full functions after a period of time, so we remain optimistic for Berny. Please keep this little man and his family in your prayers.

Saturday, June 9, 2007

Many Updates

Apology First! I want to say sorry for the long delay in any updates to you all. Our family has had a stressful month and I have been unable to spend much time on the computer. We lost my husband's father shortly before our daughter graduated from high school last week. In addition, Chedner has had numerous tests, doctors visits and has been struggling with his malfunctioning digestive system. We are headed back to the hospital on Monday to make a plan that may include a diverting colostomy for the time being.

We have a few updates for you:

Christy and Nelson are doing wonderfully and they will be returning to Haiti with Vanessa on June 14th. I can't wait to see those reunion pictures as I know this has been an eternity for Christy's Dad.

Achemine is being escorted back to Haiti in the next week and is doing really well with her new shunt.

Angelo is doing much better now that his mom has arrived from Haiti. He has been moved to a regular room and they will remain there throughout the duration on his radiation treatments. After those are completed at the end of June, Angelo and his mother will move to PA and live with his aunt until they return home in August. Unfortunately, Angelo has suffered some effects from both the tumor and the surgery to remove it. He is now permanently blind and is struggling to learn to walk & talk again. We are praying that the radiation will help to reduce the portion of the tumor that was inoperable and that this will help with his recovery.

Ruthlande has had her surgery and is living with a host family in the Chicago area. She is taking some antibiotics to help prevent any infection. There is talk of placing a shunt put in place to prevent any further build-up of spinal fluid in her lumbar area. I am not sure how long her stay here in the US will be, but it is such wonderful news that this strong little girl finally has a hope for a future.

Kensley is finally here in the US for surgery on his cleft lip. This is the little guy that refused to get on the airplane when I flew back to the states with Angelo, Christy and Nelson. I will update when we know more.

I will try and post some more pictures of the kids when I get some more recent ones from the families.