Ched - Week 2 plus 2 days

What a difference a day makes....I don't know who said that but they were incredibly astute.

Chedner is on the warpath. He has decided that his work is done here in Baltimore and its time to pack up the toys and go home! And he literally tried to sit up and get out of bed...even in traction and pins! While I am making a joke, the last 48 hours have not been funny at all. Ched is moving constantly and is throwing tantrums hourly. He should be seriously sedated, but is merely laughing at our efforts to put him out. He fights closing his eyes if at all possible. At first he just was wiggling in bed alot but now he has taken his dissatisfaction to greater levels and has begun "levitating" off the bed. Despite emergency calls for more help, Ched chewed through two more medication choices today. We have maxed out all the routine meds they normally use and we've moved on to other stronger drugs. I knew two year olds (and this two year old boy in particular) have strong wills but I am amazed at his endurance.

Please say some prayers that this last medication will calm him a bit and keep things quiet. The concern is the more medication we give him to put him out, the higher the risk that he will stop breathing on his own and need assistance. That situation would mean we would need to return to the intensive care unit where we truly do not want to be. We have about four more weeks of traction to get through and I think I may be to the point that I'm going to start insisting on some of that medication be given to me!

Ched - Week 2

The docs keep telling me this is a marathon adventure. I need to pace myself, get rest, take breaks, talk with others outside of these four walls, etc. Man, are they right! What do you mean this is only the 2 week mark!?! I thought we must be much closer to 4 or even 5 as it seems like Ched and I have been here forever already. Ethan (my 8 yr old son) says he can't remember the sound of my voice...okay he is being melodramatic as we do talk on the phone, but still, I miss his sweet face and funny 3rd grade sense of humor. And I miss catching Gabe wear 12 pairs of underwear and 6 shirts at once (remember he has Down syndrome and obviously a unique sense of fashion)! I also miss my Pierre hugs and kisses as I accustomed to getting many each day. Also, talking about soccer and boys is more fun with Caitlin when we are both sitting in the same room!

Alas, after waking this morning and checking the calendar...it is only 2 weeks that have passed.

But, Chedner is doing okay and we are figuring out how to live with him lying flat in a bed, in traction, with pins in his hips and on serious medications. He is awake for a few periods on time each day. It seems like he sleeps most of the day one day and then the next he is awake for most of the day. Mostly he is calm and content to lie in bed watching Wiggles or another movie. He doesn't want to read many books, play with ANY toys, or talk on the phone to anyone. He does want to hold my hand, get lots of kisses and have his head rubbed. He is patient with all the docs and nurses who come by to poke and prod him each day. He already has favorite nurses and jabbers to them as they work at his bedside. The nurses really are great.

Dinner and a Movie...question: how many times can a grown person watch the wiggles before going completely insane???

While eating pizza on your back may be good in theory, it is very difficult. Especially when your hands aren't too coordinated due to sedation. This was the only nibble he managed but he did enjoy holding it for quite a while.

As the recovery progresses, the only troubles we are having at the moment are issues concerning his GI tract. His exstrophy surgery sites are healing well and his pin holes (where the bones are being held in position) are also doing well. Unfortunately, Ched has a miserable GI tract. Nothing seems to work right with it and the surgery plus being immobile is wreaking havoc. Top that off with morphine and other medications which slow down your gut and the result is a distended abdomen. His ostomy is working, but every time he eats, his belly gets big and hard. The urology docs decided to call the GI docs for help yesterday. I talked with a very nice fellow last night and he confirmed what we have been thinking (and our gastro doc at UVA was also thinking) that Chedner has chronic malabsorption and mobility issues. Even with the ostomy, the whole system just doesn't work correctly. Apparently, there is a continuum for these issues with Short Gut syndrome being at the worse end. Ched isn't all the way to that end, but he is close. Fortunately, he has been growing this past fall and therefore we know he is getting at least some benefit from the food that flies through his system. The sad part of this is the foods that Ched (and most 2 yr olds like to eat) are the very foods that are contributing to his problems. No more fruit juice for the boy...actually nothing with much sugar at all. Someone is gonna need to get me an approved food list as he said this is a life-long issue. Eventually as an adult, Chedner will figure out what foods make him sick and which foods don't. For the moment, that job falls to us. Considering the fact that the boy is a juice-a-holic, he will not be happy with this latest news. He will also need some additional meds to help things. I will find out more later today.

Well, that is the latest on Chedner "Fabulous" Fab. His docs tell me he is their new poster child for exstrophy as he is handling all of this remarkably well. His nurses have learned valuable lessons on the dangers of opening "over-full" ostomy bags. And I am once again amazed at the resilency of children to adapt to whatever comes their way.

Thanks for all your support and prayers!

Fran

Pharah is here for surgery!

Some of you may remember the little girl I mentioned back in October who has hydrocephaly and her head circumference at that time measured 38 inches around. She was amazingly alert and her mom was doing a tremendous job caring for her. Little Pharah (pronounced Sarah) is now here for surgery and will finally have the terrible pressure released off her developing brain. We are so happy that we were able to find her and arrange everything for her to travel. She has a great host family to care for her during her stay in the US. Thank you!

Thanks also to Ben & Jen for bringing her on the plane with them, along with another little one, Cindie, who will be having some heart procedures done at Hershey Medical Center in the next few weeks.

Chedner after One Week

Chedner has moved from the PICU to an pediatric intermediate care unit. He still has to be monitored and has nurses around him at all times. They are using lots of sedation to keep him still, but so far things look good with the surgery sites. He was able to drink from a sippy cup yesterday and hopefully will get a bottle of milk sometime today. As long as he eats, he won't have to have that yucky NG tube put back in. He will talk to us at times and watches a movie or reads a book with me for a few minutes, but mostly he is sleeping. The object for the next five weeks is to keep him very still...not an easy task for a two year old!

Thanks for all your prayers!
Fran

Care Needed...

This is Widline Pierre...a little girl only 2 1/2 months old who was born without a rectal opening. She has not grown since birth and still only weighs 5 pounds & is 19" long. She requires surgery ASAP and we are looking for a pediatric surgeon to help her.


Christella is a 10 month old little girl with a VSD that needs to be repaired. We have an echo tape of her heart defect to share with doctors. She seems to be developing alright in other areas and can now crawl to get around.

Judnel is 11 years old and one of three children being cared for by a single mom. A cuban doctor who saw Judnel said he believed he has a VSD, but we are working on getting an echocardiogram done to confirm that diagnosis. Judnel will need surgery to repair this defect if he is going to live a full life.

Lovensky is a handsome 8 year old with a long-time dislocated shoulder. It appears that there may be nerve damage now due to the injury never being reduced. We have x-rays. Lovensky is in the second grade and loves to play soccer. We would like to help reduce this young fellows pain and allow him better use of that arm. A doctor who saw him felt that surgery and therapy could give help. We are looking for a pediatric orthopedist who can help.

While we are blessed with doctors and facilities around the country that help us with many children, we do not always have care available when families come to us in Haiti. We are always willing to help any child that we possibly can, but sometimes have to depend on others to help us find the doctors and facilities who are willing to donate the free medical care. If anyone out there knows of any doctors who might be willing to talk with us and perhaps help one of these children, please email or call us.

Thank Goodness for Blankies...

...they can truly shut out the world. Ched is doing better. The first night was quite bad and the doctors were calling him a sedation nightmare. We seem to have found a happy spot and he is calmer. They are truly giving this boy enough drugs to sedate a large Anheiser Bush draft horse, yet he is still occassionally opening his eyes and asking me to pick him up. He is now off oxygen though is quite congested still and requiring some suctioning. His turn in isolation will continue through next Thursday which is a pain for me as I cannot touch him without looking like a space man in an ugly yellow gown and purple gloves. I actually had to lower my mask a bit today just so he could see it was Mommy behind all that garb. After that he seemed to accept that I too was part of this strange new world.

His red blood count continues to drop for some reason and he is only .1 on the scale from needing a blood transfusion. We are hoping it doesn't come to that but won't know until we see the next blood test results in the morning. Right now, he is stable enough to get out of the PICU and into an intermediate care unit, but alas...there is no space. Maybe tomorrow. The nice part of that is that we will be welcomed by 3 other families that have gone through this bladder exstrophy surgery in the past week. I have been told they are anxiously awaiting our arrival so the group of us can go through the next 6 weeks together. It is nice to know that we will have comrades to hang out with while we are here.

Thank you for all your prayers...please keep them coming!

Fran

Chedner

Quick Update on Chedner:
He had his surgery yesterday at Johns Hopkins in Baltimore. The surgery took all day - 8:00 am till 6:00 pm. Chedner did well through the surgery, but started to have some trouble once he was in the PICU. The sedation they were using wasn't strong enough and despite having pins in his pelvis and his little feet in traction, he was thrashing all over the bed. He isn't suppose to move at all so as not to disrupt the work they did on his bladder and his pelvic bones. After many hours of him crying and fighting us, they finally knocked him out and he stayed quiet. They are hesitant to give him the really big sedative drugs as they will have to put his breathing tube back in if they resort to that, but if necessary they will do that. Today, he is not as agitated and is laying still most of the time. He is very sedated with a combination of medications and therefore he is working hard to breathe. It is a delicate balance. To make the situation worse for my boy, he has developed a cold. He didn't have one yesterday, but apparantly it was brewing in the back of his sinuses and has been given an avenue to flourish.
While we are more optimistic than last night about his condition, he is still not doing as well as we had hoped. It looks like as long as a week or more in the intensive care unit. Please say some prayers for our little man. I will send an update again in a day or so.
Fran

Brenda likes Bananas

I received an update from Brenda's host mom, Kim this morning. She is doing well, but is still not eating much. She is finally keeping formula down, but they are using a nasal feeding tube as she is not interested in sucking a bottle. This is a challenge for some of the children we bring from Haiti as they are often breastfed, not bottle fed. Formula in Haiti is very expensive and it is not easy to get safe water. Mothers often have no choice but to breast feed and hope that they are able to provide enough nutrition for their babies. We do ask the families to put their babies on formula before we bring them here, but the results are often mixed. Kim did report though that she is taking tastes of banana baby food, so that is definitely progress!
The doctor reported that Brenda will hopefully have no more problems, but that the size of her head will not shrink, even though the pressure has been removed. Brenda's head is larger than most adult heads, but she will have to grow into it. Kim said her eyes are looking better and she thinks Brenda may be seeing some light. I will ask that they will test her vision before she returns to Haiti.

Kim, thanks for everything you are doing to help Brenda! Everyone please keep Brenda and her host family in your prayers.

Everyone Can be Great...

....Because anyone can serve. You don't have to have a college degree to serve. You don't have to make your subject and verb agree to serve. You only need a heart full of grace. A soul generated by love. ~Martin Luther King Jr.

(Reposted from Feb 07)

We are often asked by people how they can help with such a huge problem as the ones that exist in a country like Haiti. It is true that when taken as a whole, the magnitude of the struggles in Haiti sometimes seem beyond our reach. Problems as big as starvation in Haiti or genocide in Africa confound our brains and can paralyze us making it difficult to see how we can make any difference with the large social issues that exists today. However, as individuals we always have the power to touch other lives. It can be an act as simple as a smile at the right moment, the willingness to reach out and hold someone's hand in a time of need or sharing our resources with someone we know or connected to in some way. While small, these acts are in no way insignificant as they have the power to touch hearts and can even change lives. These acts can make a difference regardless of where we are, but in a country full of desperation and despair, the acts are truly life-saving.

It isn't unusual for strangers who see us with our children or those who learn about our mission in Haiti to remark that we must be extraordinary people to do what we do. They proclaim that only saints or persons of great patience could possibly adopt a bunch of children, travel to a third world country to work or volunteer to care for sick children from Haiti. Well, I'm here to tell you that nothing could be further from the truth! It doesn't take any special skills, great abilities or an endless well of patience to do what we do each day. I guarantee you that no one who knows me would describe me as a saint and my children will quickly tell you that I absolutely do not have boundless amounts of patience. I have learned over the years that individuals who make the choices we have made in our lives have only one thing in common...the willingness to answer God's call.

Many of us feel secure in showing the acts of kindness that I mentioned earlier. However, when God whispers in our ear or nudges our thoughts towards helping those outside our comfort zone, I have been known to freeze. It is too scary to contemplate it or it requires more sacrifice than I am willing to make at that time. I have said "no" far more times than I have said "yes". I easily thought of a million reasons to justify not serving, but in reality I only needed one to accept the call...because God asked me to. He didn't ask me for a resume of my qualifications nor does he care if I have to put aside my agenda in order to do as he is asking. He wants me to stop dwelling on my fear and keep my eyes on Him.

I have come to believe that we shouldn't be scared of the great acts of service that live within all of us. These acts are the ones that cross our minds and we quickly dismiss them as inconceivable or requiring some special power that we surely lack. They are the acts that would require us to take a leap of faith and go beyond the borders of our comfort zones. But what we need to remember is that God knows what we are capable of better than we do ourselves. He calls us according to our gifts and if he says we are qualified, who are we to argue?

Headed to Baltimore

Chedner and I are headed to Johns Hopkins next Tuesday for his surgery. Please keep him in your prayers as he will be sedated and in traction from the waist down for at least six weeks. The blissful ignorance must be nice for him as I think I need tranquilizers about now! In all things, we are praying to have the strength to help him through this and to give our worries to God. I will try and post while I am there to let everyone know how he is doing.
Also if you could throw some prayers up for the rest of our family that would be wonderful. This will be a long separation for all of us.

Thanks,
Fran

Brenda on the Mend

Brenda is doing well. She is still having a bit of trouble with keeping food down and needs to be able to do that before leaving the hospital. I hope to hear that she is able to go home tomorrow with Kim. Please continue to keep her in your prayers!

Brenda is Doing Great!

Hi All,

Quick update on Brenda...she came through surgery fine and is giving the nurses a run for their money. She will soon be on the mend. They are pleased with the results. In fact, the doctor believes that she has a good chance of not having any more troubles at all in the future!! God certainly blessed this surgeon with incredible skills. This is an incredible blessing for her and her family and we want to thank everyone who is keeping her in their prayers. We will post more updates in the near future!

Loobens is a handsome, young Haitian and the proud host brother of little Brenda. He is keeping a close eye on this little baby and making sure everyone, including Vanessa is taking good care of her.

Brenda Update

Dear Friends and Family,
We want to Thank American Airlines and all the passengers who were with us on our flights to the United States. Especially the people we had to hold up on Flight AA 866 to Philly. It was a very late flight and so many wanted to get home. We had trouble getting Brenda's special seat attached to the seats, as the plane was full and she needed 2 seats to get strapped into. Brenda is a very beautiful special little baby. She will be undergoing surgery tomorrow at 11:00 for her brain surgery. We will update the blog as soon as possible with information and photos. At the present time I am at a service where we can not upload photos. At this time we ask for prayers for Brenda, her special family in Haiti who had to let her come without them, the doctors, hospital staff, host family and all involved in her care. May God continue to bless us all as we help the children of Haiti.
In Christ love, Vanessa

Stephen Joseph

I want to introduce you to a beautiful little man I met in October. This fella is on my heart and mind with a ferocity I rarely feel. His past is mostly unknown, but we hope his future will be bright.

Stephen Joseph is a small boy whom we are estimating to be around 18 - 24 months old. We have to guess at this as we don't know when he was born or to whom. Vanessa, Karen and I found this small guy at in the abandoned children's ward at the city hospital in Port au Prince. We were touring a number of hospitals that day and I asked Karen about visiting this sad place. When we arrived it was quite loud and raucous. Most of the children in this ward are older, disabled in some manner and have lived there for quite a while. Others are extremely sick and not long for this world.

This little man was the exception to that rule. We believe all children deserve loving homes where they will be loved and cared for and this ward is certainly no substitute for that. The nurses are warm and caring, but their circumstances are limited. Many of this children will live their entire, short lives in this ward, others will be moved on to government orphanages. Stephen seemed out of place to me and I asked about his condition. We were told that he had been there for almost a year and was a good baby. Noticing us hanging around his crib, Stephen quickly warmed to our attention and smiled while I played with him. He quickly had us ohing and aahing at him, tickling his toes, talking silly baby talk to him and asking the docs with us to check him out thoroughly. It was obvious that Stephen was suffering from some degree of hydrocephaly. It doesn't appear to have yet affected his development which was actually quite good considering his lack of stimulation. He tracked us as we moved around, vocalized to call us back to him and fussed loudly when we shared food with a few of the older children in nearby beds. The doctors said his examination was good and besides needing a scan so we can determine the cause of his condition, Stephen is in good health.

(Photo above is of the outside play area for children in this ward.)

We told the nurses in the ward that we would be back for him and they just shrugged, telling us many people had promised to help him in the past and no one ever kept that promise. I was determined that we would not fall into the category. God always has a way of reminding me when I make such a promise and Stephen has been firmly enscounced in my heart ever since. Thankfully, with our new program to help children with hydrocephaly, Stephen will now have an opportunity to have a future.

Vanessa returned to Haiti in December and went to work getting him moved from the abandoned ward to a wonderful house that cares for children with disabilities. Although technically Stephen does not appear to have any long-term disability at this time, we were simply looking for someone to care for him until we can get him to the US. When she left for Haiti, I pleaded with her to get him out of that hospital and promised to find the necessary funding for him. The next step is to get his scan and paperwork completed so that we can get him his medical visa. The long term goal is to find a family that wants to make this beautiful boy part of their forever family!!

Please keep Stephen Joseph and all the other children in our program in your prayers as we start the New Year.

Philly Folks...Here's your chance to help an Angel!

(Me with host daughter, Anna Noah; Jan 2006)

We have settled on a surgery schedule for our many children with hydrocephaly. Thanks to the generosity of two hospitals and an incredible surgeon, we hope to have over 20 children (under the age of 2 years) receive care in the next 12 months. With both hospitals being in the Philadelphia area, we will need quite a few host families from that area. The children will be in the US for 3 - 4 months and then will return to their anxious families in Haiti. Host families provide all daily care for the babies and take care of these little ones as though they were their own. I won't mislead you all... it is alot of work at times. These little ones are sick, but the good news is they are here to get the care they need to get better! They are the fortunate few. The hospital and doctors provide all care free of charge and the host family needs to provide all the love and care while the baby is struggling through trauma of surgery. Your blessing comes when this sweet baby finally looks at you and knows that you are the one she can trust to care for her while she is here. When you see her smile and reach for you, you know she feels safe and loved. That is what we hope for her during her stay here in the US.

What an incredible opportunity to show God's love to a small angel and an anxious mother so far from her child. Throughout the child's stay, we ask the host family to provide us with updates and photos so that we can share them with the family in Haiti. You will be able to send some photos or momentos back with the child to her family in Haiti. We know from past experience, that the families are unable to find the words to express the gratitude they feel for the family who took such wonderful care of their baby.

Okay, I didn't mean to sound all sappy. But truly, it is an incredibly rewarding experience. I didn't say easy...I said rewarding. We look at our host families as missionaries. Not everyone can go overseas or to disaster zones. Not everyone is able to run over to help at a soup kitchen or a food bank. It is important to find a way to serve God that matches your talents and your interests. This is another opportunity that may be right for some families. One perk I always found when we host is that it is a mission for my entire family. We talk about it and discuss the pros and cons each time before deciding. Even my little guys see this as a way they are helping someone who has less than they have. We talk alot about our family being "blessed to be a blessing." While they miss their friends when they return to Haiti, each little one has left us with memories that remind us of why God asks us to reach out and help others.

Anyway, if you are interested, please let me know. I'm responsible for coordinating host families and I have the application in a digital format so I can just email it to you!

Sweet Brenda

I'm excited to report that the first little patient in our hydrocephaly program is going to be flying next week with Vanessa into Philadelphia. Little Brenda is a 9 month old baby girl whose parents have been trying since she was born to get her care. Her eyesight is now gone from the pressure of the fluid on her brain. The doctor at duPont Hospital for Children are optimistic that she will do well with the surgery. Brenda will be staying with a wonderful family that has an adopted child from Haiti. Both Vanessa and I have met them while in Haiti and we are thrilled that they want to host Brenda!

Please consider helping one of these little ones by hosting a child or giving a donation to get them here for their surgeries. We need to raise enough money this year to bring over 20 children here for the hydrocephaly program, in addtion to the other children who come to us with different medical conditions. Each child costs our organization around $2000 to pay for tests in Haiti, paperwork, passports, visas and airfare. If you would like to help us in some way or if your church would be interested in a presentation about our program, please give us a shout!

We'd love to come and talk to you all.

Season's Greetings from My Crew

As editor of the blog, I thought it might be okay to put a little personal note on here for you all. I wanted to share our family Christmas card with you all to wish you a Happy Holiday. This card is a bit different as it isn't on paper. Instead, we started a tradition a few years ago of putting together a DVD of our year in pictures. With many family members spread out across the country, we thought the old adage, "a picture says a thousand words" would hold true. So, I thought I would share our video with you all.

You will notice that there are many photos of Chedner in the video. After a year, he is one of the gang. Ched really enjoys the other boys and is spoiled rotten by everyone in the family. My daughters are Kelly (20 yr, 3rd year at University of Virginia), Michelle (19 yr. freshman at the Corcoran School of Art and Design in Washington, DC) and Caitlin (16 yr. at high school junior). My rambuctious sons are Gabe (13 yr. with Down Syndrome from Venezuela), Ethan (8.5 yrs from US), Pierre (6 yrs from Haiti) and Ched (20 months from Haiti). My husband Jay is an incredible man and leader of this rowdy crew. We are a beach-loving group and there are many shots from our vacation last summer at Myrtle Beach, SC. The scenes from Arlington Cemetery that you will see are from the funeral for Jay's dad this past summer. Our beloved Pa passed away only days before Michelle graduated from high school. He was an inspiration to all of us and was sadly missed at the celebration. The service we held at Arlington was the most moving I have ever been to in my life. As a West Point grad (as is Jay) and a career military man, Pa lived his life by a code that directed his life as one of graciousness, generosity, faith and service.

Well, that's all the basics so you at least know who is in the video. My family is so supportive of my work with Angel Missions and I appreciate all their love and help throughout the year. Jay and I are committed to not just making a difference in whatever small way we can, but to teaching our kids that, contrary to many messages in popular culture, it isn't all about us. God didn't put us here to collect the most toys. He put us here to help others and to make this world a better place for everyone, not just ourselves. As I watch my older girls as adults, I think I can say that we are succeeding, at least to some small degree. Anyway, we hope you enjoy all the funny photos and sweet faces. Oh, got to give credit where it is due...the awesome song is "How You Live" by Point of Grace. One of my favorites from this year.

From our family to yours, we are wishing you a very Merry Christmas and a blessed New Year!

Christmas Blessings

Angel Missions' New Clinic in PAP....next door to

St. Joseph's Home for Boys.

Vanessa and I have been overwhelmed by the blessings that Angel Missions Haiti has received in the last few weeks. When we were in Haiti in October, we were once again staggered by the many needs of so many families. Sometimes it is hard to know which direction to turn, but we are learning to listen to God and not ourselves and He has pointed the way for now. One need that was obvious was a small space to call our own so that the many families that are trying to contact us would know where to go. We have been dreaming of starting a small clinic in PAP that we could use for medical missions and as a center for our operations in Haiti. As always money is an issue and we were hesitant to commit to anything to quickly. However, when we also decided that we wanted to provide Bernard and his family with a safe home, the idea really took off. To maximize our resources, we have combined the two wishes and found a place to meet thost needs! When we hesitated due to lack of funds, God quickly provided a temporary means to secure the building. Then a wonderful couple came forward and helped us to make the clinic a reality for the next two years. We have been able to sign a two-year lease and begin some basic repairs. Later that day, we were contacted by an anonymous donor who is going to provide both a generator and an inverter for the building. This will provide our clinic with a steady supply of electricity! We are in awe of our good fortune and thank everyone for their support.

Bernard and Suzie are very excited to have a new home and Berny is excited to have a room of his own to sleep in. Speaking of Berny, he was so thrilled to be back with his mom & dad. He started doing a little happy dance as soon as he saw his mom at the airport, showing off all of his newly learned skills. What an amazing sight for these parents who didn't know if he would survive the Guillan-Barre when he left Haiti with Vanessa last summer. Now to have him back, running, jumping and standing on one foot to show his superman skills! They want us to say thank you again to all who helped their little man get back on his feet.

Of course, when you have a clinic, you need some basic medical items to supply it. We are being shown that when you are on the right path, God will show you the way and give you what you need. Two very generous hospitals here in Virginia have donated a large shipment of durable medical equipment, including exam tables, chairs, desks, filing cabinets, exam lights, a wheelchair, baby scales, freezers & a refridgerator, x-ray light boxes, and many other items. In addition, we have been given not one, but two ultrasound machines! It is just incredible. With our cup overflowing, we will share many of these items with other organizations in Haiti that are in need of these supplies.

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!

The Best Christmas Present

I heard from Vanessa today that we have been given an incredible gift. A doctor named from Philadelphia has been talking with us about providing surgery for a number of Haitian children with Hydrocephalus (excess water on the brain). He is an accomplished neurosurgeon who has actually worked in various parts of the world and has pioneered a shunt-less technique to provide relief for children in developing countries. This doctor is interested in working with AMH and now has two hospitals, Thomas Jefferson University Hospital in Philadelphia and duPont Hospital for Children in Wilmington, that have agreed to provide free care for these children. With this assistance, we hope to be able to provide much needed medical care for up to 20 Haitian children suffering from hydrocephaly! This is just awesome and we have prayed for such a hero. We are so excited to be working with him!

From our trips to Haiti this year, we have already identified a number of children who need this surgery. In fact, we saw no less than six children just in October with various stages of this condition. The worst case we saw was a little girl with a head circumference of almost 38 inches. The amazing thing was that this little one was alert and very interested in her surroundings. She tracked our movements and listened as we talked with her mother. She ever turned her own body & head over to get her mother's attention at one point.

There are many children in Haiti and a number of medical missions have been trying to help. We pray that we are able to raise the funds to bring these children to the US this year for this life-saving surgery. We know that it is in God's hands and it is through his providence that we have the opportunity to partner with so many incredible medical professionals and institutions. Please consider helping our mission in some way. Host families will be needed in Philadelphia and Wilmington. We will need to raise quite a bit of money to pay for the necessary expenses involved in getting each child a visa and for all the travel expenses as well.

Achemine (Mia) had her surgery last Spring in Roanoke, Virginia. She is doing wonderfully now. Mia is happy, alert and developing in all areas. Her father and mother are so thankful to have her back home.Time is ticking by quickly for some of these children and they don't have the luxury of waiting long. duPont Hospital for Children and the doctors are ready to get moving and so are we! As always, prayers are needed and much appreciated!

Happy Holidays,

Fran