Stephen Joseph Update

I have delayed in posting this as it has taken me a few days to make peace with it in my own heart. Since Vanessa and I found Stephen Joseph back in October, he has been on my heart. He is such a bright-eyed little man with a happy nature who was just looking for someone to play with when we visited the ward. Vanessa and I tried for months to get him moved to an orphanage we know would take great care of him until we could get him a medical visa. We have learned over the years, though that our plans are not always God's plans. Stephen did get moved out of the abandoned ward to an orphanage; unfortunately, it was not the one we had chosen. The good news is that he is out of the hospital ward. The bad news is that he is with an orphanage that will not work with us. I am sure they have their reasons just as I am sure that God has a plan for this little boy. My head accepts that my knowledge is incomplete and that I cannot know the big picture all the time (even some of the time, it seems these days); however, my heart is broken that we will not be able to help him. We thank all of you who have written of your support for Stephen and have offered assistance. Please continue to pray for him in the hopes that he may still get the medical care he needs and a chance at a better life.

Fran

Aluckson

This is a little guy we are hoping to get to the states soon. We have care lined up for him through Children's Medical Missions, a great group that helps us find care for many children. We are working hard to raise funds for many of the children, including Aluckson. He sure is a cutie!

Link Addded

Today, we are making an request that everyone please pray for Angel Missions and the children currently waiting for care. We have 9 children that have been approved care and are ready to process their paperwork to get their medical visas; however, our financial situation is tight. The photo above is on of the nine waiting to come. This is a baby girl named Dieunette. She needs surgery ASAP and we have found a hospital and host family in Nebraska to care for her. Unfortunately, we are short of funds to pay for her paperwork and travel.

We have been blessed with spreading the word about Angel Missions being able to help some of the children in Haiti who need medical care. We have also been able to start a small clinic in Port au Prince to serve a boys' home and for the families seeking medical visas to come and meet with us. Most of all, we have been blessed with a number of hospitals, doctors and host families around the country that have stepped forward to provide the much needed care. Unfortunately, our financial resources have not grown as quickly as our program. To continue, we need help!

I have always wanted this blog to be about sharing the stories of the children, their families and all who are working to help them. I have resisted asking for donations or adding a "donation" button onto the site; however, Vanessa and I have decided that, in order to continue to help the children, we are going to have to ask for help from others. We regularly speak at churches and with civic groups to spread the word about our mission and to seek donations. Angel Missions is a non-profit 501(c)3 organization and all donations are tax deductible. A number of individuals have asked us how to make a donation, so I have gone ahead and added a donation button to this site. Please don't feel obligate to use it, but if you do feel so moved, you can make a donation (any amount) directly to our paypal account which then goes directly into our operating budget. Please know that Vanessa and I are volunteers and none of this money stays with us. We use all donations to pay for our program costs.

As always, we truly appreciate everyone's support for this mission. Together we are making a difference in many little lives.

Naphtalie Bazile's Surgery Today

Little Naphtalie Bazile is having surgery to relieve the symptoms of her hydrocephaly and prevent further fluid from accumulating in her head. She will be the fourth little one in our hydrocephaly project to have this repair. Please keep her in your prayers today.

Her host family has set up a link so that anyone interested can track her progress. Here is the the address:

http://www.caringbridge.org/visit/naphtaliebazile

**Note Added**

Naphtalie did wonderfully with her surgery and was released from the hospital the next day. Her host mom, Kim said she was amazed at the difference in her alertness and remarked that she was eating well and smiling at everyone. Her head size has already begun to diminish and we are hopeful that she will continue to do well during her recovery. Thanks for all your prayers!!

Joanise's Laugh

Joanise had surgery just a few weeks ago to relieve the symptoms of her hydrocephaly. She is doing really well and is having a great time with her host family and friends in PA. Before the surgery, Joanise wasn't terribly interactive and didn't show a great deal of interest in those around her. Her head was quite large and I'm sure the pressure was very painful for her. I'm told that since the surgery, she is developing quite a personality and a great belly laugh. Thanks for Chrissy for sharing this YouTube video of Joanise's giggles. What a wonderfully sweet sound!

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Smiles All Around

We've had a good number of children come our way with Cleft lip and palete. We have been able to help some with our contacts and with some collaborative efforts with other groups similiar to our own. However, there were a good number of older children still waiting for surgery. Vanessa was contacted by our friend, Dr. Tracee and we found out that Operation Smile was going to be spending time in Haiti. The surgeries were to take place in the Hinche area. To our surprise, Smile Train was in the area during the same time and also performing surgeries! Together they helped over 100 men, women and children who have been living with the stigma of Cleft Lip and Palete all their lives. Karen and Bernard sent some before and after photos to share. We are always so thankful when other mission groups share their resources to help all of serve the children of Haiti!

Jameson

Jefanor

Noel Micia

Back Home...

Chedner and I are home and enjoying being back with our crew. Wow, that was a long seven weeks. Ched is doing well and is happy to be with out of the hospital. He is unable to sit for long and cannot yet crawl, stand or walk. That will all come back with time. We did remove the brace (see photos) that was around his legs and he can move around a bit better without that! He is eating well and smiles lots. In the hospital, he refused to eat so they had to feed him through an NG tube. The plan worked as he gained over 4 lbs in just five weeks (more than he has in the last 9 months eating on his own)! He has chubby cheeks and outgrew many of his clothes. We've also noticed that he grew taller....either that or the traction really stretched the poor boy. I think it is partly growth and partly the fact that his legs/hips/feet are now basically in the correct position, making him look longer. At least that is my theory. So far he is eating well at home and his belly is responding well to the antibiotics. Eventually, he will see the gastro guys at UVa for a full eval, but neither Chedner nor I have any desire to go anywhere near a hospital for a while. Our plan is to relax, go to lots of soccer games and enjoy the sunshine!

Catching Up...

It has been a very busy month. God has provided for 9 more children to have life saving surgery. We give all the Glory to him, as these are his children and he continues to open doors all over the United States to help. Vanessa has just returned from Philly where she spent the most wonderful time with all 4 host families. She was able to see Brenda, Pharah, Joinise and Naphtalie. All 4 girls are doing so well it brought her to tears. They are all bonded with their host parents, smiling gaining weight. Vanessa said that Pharah has made the most obvious progress. Her head has went down 5 inches. Yes I said 5 inches! She has the most wonderful personality. She is trying to do new things every day. Brenda and Joinise have also had their heads go down a little. What we've seen in all 3 girls is that their personalities are coming out. Without the continual pain, they are smiling and interaction with others. It is wonderful to see. During her visit there, at least 3 different Church 's into our lives where there are wonderful, Christian folks who all want to help the Haitian children in our program in one way or another.

Little Skyline had her surgery yesterday morning to repair her palate and all went well. She was released this morning and is on her way home with Vanessa. Please be in prayer for this little one. She is a little pistol, on the go all the time.

We want to take a moment and thank the wonderful women at Hands that Heal. You can check out their blog at: http://handsthatheal-mk1618b.blogspot.com/ This organization has a mission similiar to ours and has been generous enough to share their energy, time and resources with one of our children. Little Widline will have surgery in Ohio thanks to the work of this group. Rebekah (co-founder) was relentless in working to find care for this girl before it was too late. Widline arrived a week or so ago and Rebekah flew to Virginia to meet Vanessa and pick up the baby. She then flew to IN to meet the host family and hand off her sweet bundle. I have to say I love the photos she took and shared with us. I have included a few here. The baby is doing wonderfully and is now over 8 lbs! A special thanks to her host family for all the TLC they are lavishing on Widline. The photo is a photo taken by Rebekah of Widline after she picked her up in Virginia. Such a sweet, serious face for such a little girl! I think her eyes are compelling...like she doesn't miss anything and knows lots more than we ever will.

Happy Birthday Chedner!

Our big guy turned 2 years old today and as a special gift, the docs and nurses at Johns Hopkins set us free last night! Wohoo!

We are still in Baltimore at the Children's House beside the hospital for a day or so to be sure Chedner is handling the weaning off the medications that were used to sedate him during traction. He is doing wonderfully and we hope to be cleared tomorrow to leave and get home. We had a small celebration just Ched, me and my daughter Kelly as we passed the time today just hanging out and playing. The wonderful nurses and child life specialist that helped us on CMSC 6 asked us to come back and visit for a minute so they could wish him a happy birthday. There were some fun presents to open and a cake to enjoy as well. The funniest gift he got was a small wagon with a sock monkey inside. It was sort of an inside joke from Mary Devon (child life specialist, see photo below) as Chedner loved to roam the halls of JJH propped up in a red wagon, holding onto his blankie and watching others as he passed by. For our own sanity...well mostly mine...we luckily were able to get out and walk a bit the last 7 days and that helped pass the time for both him and me.

A big thanks to everyone who has helped us these last seven weeks!

Little Widline

Here is a small story to hold in your heart:

On our flight to GSO a female AA pilot was sitting one row up and across from me. She said, "If you need a break, I'm happy to help." After a while, I needed to get something out of the overhead bin, so I handed the sleeping Widline to her. They were both so happy--the pilot and the baby. So, I went to the front and started yakking with the Flight Attendant, a girl I know and work with--then came back and started taking Widline out of the pilot's arms. Just as I leaned down for the baby, the pilot blurted, "My husband was just diagnosed with an inoperable brain tumor--holding her has been a religious experience for me." That stopped me right in my tracks and I placed the barely picked up baby back in her arms and said "You let me know when you are ready to give her back." And I sat down in my seat across from her, one row back.I watched as the woman kept dabbing at her eyes, wiping away her tears, while holding the little Widline. I can't profess to know how she was feeling or what she was thinking, but I know that this little baby was a catalyst for good--some how, some way--for the lady. It was touching. Just before landing, I took the baby back, and as we deplaned, the pilot hugged my neck. I told her I would pray that she and her family found the strength they needed for the journey ahead, and she just shook her head up and down, tears once again forming....These children gave so much--just by being. I doubt they will ever be aware of the lives they have affected. Love comes in tiny doses, and packs a big wallop!

This email that I got from the flight attendent shows just how much these children help show God's love everywhere. Please pray for this pilot's husband. All my love in His service, Vanessa

Oh What A Beautiful Morning...

Neyessa is one happy girl! This little one is full of life and I know her mom is excited to be getting her home very soon! Thanks to Children's Medical Missions for their help in getting Neyessa's care and a special thank you to her host family for taking such great care of her these past few months.

Ched's Top 10 Activities to Enjoy While Stuck on Your Back...

Hi,

Its me...Chedner. Mom has been too preoccupied to post anything on the blog in a week, so I told her I would make some time in my busy social schedule to write. I thought I would share my list of interesting activities I have found that can be enjoyed when adults strap you down on a bed and tell you that you are not allowed to sit up, roll over or run down hallways. Let me first say that I do not understand why these people insist I have to stay on this bed...I'm feeling fine...really...

Okay, here is my top ten list:

#10 - I have decided that one of the best toys in this place is a stethescope. They are lots of fun and I have gotten my hands on almost every nurse's stethoscope at some point in the last 5 weeks.

#9 - I spent a lot of time staring at my photo collage and pretending to yell at my older brothers for all past incidents in which they treated me unfairly....this is the one time I get to win all arguments and always get to have the last word!

#8 - Watch "Open Season" at least twice a day and giggle hysterically everytime the bear gets a porcupine stuck to his butt.

#7 - Tatoo my face, head and arms with small smiley face stickers...the closest my mother will ever let me get to body art.

#6 - Swat at hordes of bubbles that are impossible to catch with my currently, uncoordinated hands. My mom seems to think its funny to see them stick all over the hospital room as they are Gymboree bubbles and don't pop easily. This woman seriously needs to take a break and get out more!

#5 - Squeeze and burst any and all styrofoam cups within grasp. This is especially entertaining if I can get a hold of one full of ice water while I am sitting on mom's lap. Always guaranteed to create a flurry of quick action! Mom was too busy cleaning up the floods to take any photos of this activity...

#4 - This is really a treat now that I have unlimited access to my ostomy bag! I have discovered that if I flick open the clip in just the right way, the nurses think that the bag has gotten caught on my external fixator (the pins in my hips) and accidently popped open. This is a fun way to get not only lots of attention, but also I get to be lifted out of my bed for a few minutes by at least three pretty nurses while getting a sponge bath. However, Mom has caught on to the trick and has not been pleased the last few times I tried this one.

#3 - I have a really cool Wiggles videos and a music toy with lots of buttons. Since I personally think that Greg, Anthony, Jeff and Murray are a few of the only truly gifted muscians and entertainers on the planet, I could listen to their work all day long. As an added benefit, I get to see the grown-ups' eyes cross in their head after hearing the first 5 songs.

#2 - Throw your pappy as far and as often as you can possibly manage. I have to say this is one of the most pleasurable activities I have these days. If I am really lucky, I sometimes hit a nurse or even Mom as they walk by my bed. You know the funny thing is...no matter how often I toss these things, everyone always just laughs and picks it up for me. I am rather insistent however on them washing the pappy thoroughly between tosses. You wouldn't believe all the germs floating around a hospital. It is a great place to get sick!

#1 - My favorite game this week has been making laps around the children's unit in a wagon. I have done my best to convince anyone who will listen for six weeks that I want to get out of this place. Mom has tried her best to placate me...she has failed. But, thanks to some incredibly inventive folks at JHH, I have been allowed to lie on my back in a wagon and now get to watch an incredible array of lights flash by as I zoom down the halls. It's not exactly escaping, but I can always pretend. Also, I am determined to do my utmost to make up for my mother's serious lack of exercise these past 5 weeks. Towards that end, I have heard that 17 laps equals one mile, so I have set her goal at 10 miles before we leave. I am cautiously optimistic...

For the serious bored and brave...While this last one isn't in my top ten, it is an option for desperate times. If you are feeling particularly bored and are really daring, you could try pulling any and all wires, tubes or patches that I can get my hands on. Most are taped down to thwart the best of my efforts, but I have managed to get a number of them loose. The best part of it is the crazy noises that start going off all around me. It is like hitting the jackpot in Vegas! Lights flashing, sirens and buzzers blaring and normally sane people dancing around frantically. Unfortunately, I have must post a disclaimer with this one. As my mom has been trying to teach me since I started getting into things I shouldn't....all actions have consequences and some can be quite miserable. I found out the hard way that pulling an NG tube is a very, very bad idea! Sadly, I also learned that what comes out, must go back in...

When all of this fails to entertain me or beat the boredom that often sets in around 4:00 pm every afternoon, I just demand to get up and sit with mom in the green chair. Now that she convinced the docs to let me out of traction, I can get up for short times. Even with my legs in an immobilizer wrap, I have found that nothing beats snuggling and sleeping to escape from the craziness.

Peace Out!

Ched

Enjoying the Snow...

Cyndie has recovered well from her cardiac procedure and has been enjoying the beautiful snow in PA. Her host mom, Colleen, sent us some great pictures! Cyndie will have one more follow-up appointment with her doctor before returning soon to her family in Haiti. We want to thank the doctors at Hershey Medical Center and her awesome host family for taking such great care of this sweet girl.

Status Report and Photos

Pharah has done wonderfully since her surgery. She is back home with her host family recuperating and have a great time with her host siblings. These two definitely look like fast friends!

This is Pharah at the hospital. Look at that sweet face! Thank you Julie for all the pictures you sent us!

Brenda and her host brother Lubens are also having a great time together. Brenda has done well since her surgery, but we are hoping she will begin to eat a bit better. She is still not eating as much as the doctors and her host mom, Kim would like.

Brenda is definitely enjoying all the snuggling and attention from Lubens.


The update on Chedner is a bit better. We struggled most of last week to keep him calm and in bed. He has been fighting all the meds he is being given to sedate him. We switched one on Thursday and upped two that we hoped might help him lay still. The first day or so after the switch, we saw marked improvement. Now, he is beginning to be awake again for very long stretches and is struggling a bit. Time will tell. He still has 2 1/2 weeks of traction before he gets the pins out and we can pick him up. I knew standing beside him and not just picking him up to comfort him was going to be difficult, but I will say I underestimated how difficult it really would be. He is often frustrated and angry at me as I am suppose to be his rescuer and I won't just take him away from all of this. He points to the window and the door and yells, "up, up, up!" or "go, go, go!" and all I can say is not yet. He is definitely at the hardest age for this as he is used to be being very busy and his language is just not good enough yet to explain this whole ordeal to him. He often lays and just watches TV if I am not beside him, but he won't eat anything for anyone but me. To be honest, he isn't eating much for me either. We are now feeding him by an NG tube throughout the day and night. He has definitely lost some weight.

In the end, there truly was no choice about having this procedure and it will be worth the tears and frustrations for both of us when it is done. This surgery is just one of a staged process, but thankfully the others are not as extensive and the hospital stays are shorter. We are blessed that we have been able to be here at Johns Hopkins as they are truly the world's best at this repairing this condition. Dr. Gearhart, his staff and the nurses here are incredible. The support of the folks at the Children's House and Child Life have definitely made the stay easier on all of us.

That's the status report today. Sorry no photos of Chedner as I was too busy dodging the crackers he was throwing at me to snap the picture! Maybe this later this week.....

Message from Vanessa

I am very happy to send this email. It was a hard trip home, but I am so thankful for the detour. My detour took me through PA and this is where Joanise needed to go. We wereable to contact the host parents and see if they wanted to meet us at the airport. Unfortunately, we were very late getting in, so I was invited to spend the night with Greg, Georganne and Gwen. They took me back to the airport the very next morning. Where I found out I had to fly to Charolette before I would then get to Roanoke. (I was not to happy) But went with it. Got to Charlotte fine had my 3 hour layover got on our plane and were taxing to take off when the engine caught fire. Yep that is what I said. So with a sudden stop door thrown open I helped the elderly lady behind me out and away from the plane. We all made it out ok and the Staff got the fire under control very quickly.
The whole time I kept saying thank you lord I did not have Joinise with me. It would have been impossible to get her off the plane with out jarring her head. God was watching out for us.

Joanise arrived in PA has been with her host family since last Friday and they have fallen in love with her. We want to thank the airline personal of American Airlines and US Airways. Joinise was able to make her trips with no problems. She will go for her pre surgery appointment next week and have surgery the week after that.

Cyndie who arrived with Ben and Jen on Jan. 26 had her heart surgery today. She came though the two hour procedure great. I am told she will be able to return home within the next 6 weeks. It is so wonderful that God has opened so many doors for these precious children. Please keep them and all of the children who are waiting for surgery in your prayers. .
Thanks for the prayers
love V

Pharah's Surgery

Pharah had her surgery on Thursday and all went very well. In fact, her host mom reports that she did not even need to spend any time in intensive care, but was able to go directly to a regular room. She was beginning to drink some and seems well on the road to recovery. Pharah had a massive head before surgery and thankfully that seems to be shrinking down some already. The message today was that they are headed home and rest and recuperate!

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