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.