Meet Djemy...

Here is our latest little guy that will be coming to the States for surgery. Djemy is 2 years old and was brought to GLA (God's Littlest Angels Orphanage) in June with the beginning stages of Kwashiorkor.
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Kwashiorkor: Kwashiorkor is a type of malnutrition with controversial causes, but it is commonly believed to be caused by insufficient protein intake. It usually affects children aged 1–4 years, although it also occurs in older children and adults. Jamaican pediatrician Cicely D. Williams introduced the name into international scientific circles in her 1935 Lancet article[1][2]. When a child is nursing, it receives certain amino acids vital to growth from its mother's milk. When the child is weaned, if the diet that replaces the milk is high in starches and carbohydrates, and deficient in protein (as is common in parts of the world where the bulk of the diet consists of starchy vegetables, or where famine has struck), the child may develop kwashiorkor.

The name is derived from one of the languages of coastal Ghana, translated literally "first-second", and means "rejected one", reflecting the development of the condition in the older child who has been weaned from the breast, often as the result of the birth of a sibling.
(Wikipedia definition)
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At the beginning of July, he had diarrhea and refused to eat. A feeding tube was placed to assure that he was getting enough calories. He had the feeding tube in for 7 days. On the 9th day, he developed NOMA on his left nostril. The necrosis developed rapidly. He ended up in surgery, to save his life, but in the process he lost half of his nasal septum and nasal flair. He was treated with 3 VERY strong antibiotics for 3 weeks following the surgery.

This photo was taken after the surgery to remove the dead tissue.
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NOMA: Exact etiology is not known, but noma is likely caused by bacterial infection, specifically by fusospirochetal organisms.[3] Risk factors include severe protein malnutrition (e.g. Kwashiorkor) and unsanitary conditions.[3]

The mucous membranes of the mouth develop ulcers, and rapid, painless tissue degeneration ensues, which can degrade tissues of the bones in the face.[4]

The disease is associated with high morbidity and mortality and mainly affects children under the age of twelve in the poorest countries of Africa. Children in Asia and some countries of South America are also affected. Most children who get the disease are between the ages of two and six years old.[5] The WHO estimates that 500,000 people are affected, and that 100,000 new cases are reported each year. (Wikipedia definition)
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He is doing well now, and is has gained a lot of weight.

We already had a host family lined up for him: Thanks Ralph and Beka! So we started looking in the San Diego area to find him care. God had everything all in His control. The first Cranial Facial Plastic Surgeon's group that I called, accepted him. Thank you to Julie, the nurse coordinator, and Dr. Amanda Gosman, the surgeon, for taking this little guy under your care! The surgery will take place a Rady Children's Hosptial in San Diego, CA, and will be sponsored by Fresh Start. We are waiting for some last minute details to come together, and we will be able to get all of the paperwork together, and FED EX it off to GLA.

GLA was able to contact the birth father, so he is in the process of signing for the passport, ect... This will speed up the process sooooo much!!!!!!!

Please keep Djemy in your prayers and I will update as things transpire!

Update on Shnaider...

Here is another update from Stephanie: This was written Tuesday when they arrived home from the hospital.
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We just returned home a few hours ago from Shnaiders latest surgery. His shunt was leaking from the site inside his back. It seems to be draining the fluid between his eyes again thankfully.

He had an extremely hard time comming out of anestheia this time. We arent really sure what happened, possibly a reaction the the amount of Morphine he had but he was hysterically thrashing, screaming, and crying for 7 hours post op. He was totally out of control. It was difficult and my arms hurt so bad today from trying to contain him. About 8:00 pm he finally came out of it and was fine. He is acting great this morning. He even let one of the nurses and the doctors assistant hold him! Usually he cries when someone comes near him at the hospital. Being his 4th time in he is pretty wise to the whole thing.

The doctor would like to go in next week and fix the bone graph in the front and use a special medication as well that crystalizes when it comes in contact with spinal fluid. It will help to create a barrier so the leak can stop. If all works as planned and the shunt keeps functioning that should be it.
Thanks for all the prayers yesterday. I had a feeling going in that it wasnt going to go smoothly for some reason but we made it through. Shnaider is so strong. I cant imagine having having 4 surgeries between the end of May and now.
We will update as we know more about the next procedure.
Stephanie
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They will go in to see Dr. Young next week, and we will know more about his next surgery and when exactly it is.

Thanks for all of your prayers for this little guy!

Almost 5 months...

It doesn't seem possible that on September 5th, Shnaider will have been here 5 months. Honestly, where does the time go??? He came the the States as a malnourished little boy that did not even have the energy to stand. Now, he is a different little boy! He is everywhere and has the best personality.

I remember the night that Lori and I went to the airport to pick him up. When he cried, it was not even that loud because he had no energy behind it! At church the next day, he just sat on my lap and ate the whole time. He ate all the time for the first couple weeks. He started walking when he was with the Truesdale's. He had such a good time with his host brothers, Carson and Chase. Now, he is with the Mueller's and he is acting like a typical almost 2 yr. old. He will be 2 November 20th. This little guy is so strong, and he is going to do great things for God as he grows! What a testament to God's faithfulness that his life will, and has already shown! Here are a couple pics: The first one is from 4 months ago, and the other one is from today.



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Please keep Shnaider in your prayers as he will have surgery again on Monday to fix the shunt. Here are some pics of where the shunt is, and how the fluid is collecting around the sights. His head has started to swell again too. The shunt should be floating around in his peritoneal cavity, and draining the fluid off his spine and around his brain. Well, somehow his shunt tubing slipped through the fascia, and created a pocket that is not letting the Cerebral Spinal Fluid to reabsorb. They are going to tack the shunt tubing to his abdominal muscles Monday, so it does not slip again, and it should drain properly from here on out. But, if any of you know about shunts, they can malfunction any time for any reason...

Please pray for Shnaider...

Here is an update from Snaider's host mom: Stephanie. Please keep Shnaider, Dr. Young, and his host family in your prayers!
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Shnaider's shunt seems to be malfunctioning. His swelling is back on his face and is swelling around the inscision sites on his abdomen and his back. We are scheduled for an office appointment at 8:45 Mon. morning and they have blocked out surgery for him after that. He seems to have every complication that can possibly happen. Please pray for healing for him, wisdom for the doctors and strength for our family to get him through this.
Stephanie

Witlene...

Please join us in prayer for Marie. She has a tumor on her pituitary gland, and we need to get her over here soon. We started working on her case almost 3 months ago. We have the doctor, and we are just waiting on paperwork from the hospital. With everyone's busy summer schedules, it has been hard to keep things moving! Please pray that all paperwork is final this next week, and that she could travel here in the next month for surgery!!! In the meantime, pray that God gives her relief of her pain and symptoms, while she waits on all of the legalities to be finished up here in the States.

Update on Shnaider...

I don't know how to link to another blog, so I am just pasting what Shnaider's host mom, Stephanie, has had to say over the past couple days. Thank you for all your prayers for this family!!!! They have been felt!!!!!!!!!!!!!!!!!


Day after surgery:
We made it home from the hospital a few hours ago. Shnaider did a very good job. It was a tiring night. He is still sore and not too happy today but he took a long nap and is eating in his highchair now. His bump is about half the size it was. It should continue to drain the rest of the way. We have another appointment the 28th and we will then have to schedule his next surgery to repair the bone piece that has come off from the first surgery.
Nick had 2 good days at school which is a blessing. Our basement is cleaned up now too. Hopefully we are headed in the right direction now. Thanks so much for all your prayers.


Two days post-op:
Shnaider is doing well today. He slept all night last night and is in minimal pain. He has pointed to his back a few times and whimpered. That is all! He is eating and playing some with toys. The fluid has completely drained as you can see in the top picture which is what we were hoping would happen. Now the leak should be able to seal itself without all that pressure built up and we will go in soon to fix the front.

Nick had another great day at school yesterday and seemed good getting on the bus today. We take it day by day. We have noticed he has good months and bad months sometimes it seems to come in spurts. He is still bothered by Shnaiders crying or loud talking and told me yesterday he feels a little jealous. That is huge for him to say what his feelings are and that is an entirely appropriate feeling to have. Im not sure he fully grasps what jealous is or could define his exact feelings about it. We are trying to do as much as possible with the Jer and Nick one on one with either myself or Tom. This experience of Fostering is new to all of us.


Three days post-op:
Shnaiders favorite place to be, I'm convinced, is in the highchair. He loves to eat. Appetite is totally back today and he woke up from his nap very happy. Yeah!!
Nick had another awesome day at school. Praise the Lord!!
The bump is even flatter today (this pic was yesterday too). No fluid at all in it.

Shnaider had surgery today...

This will be short, because I am up way too late tonight! I will give details tomorrow...

Shnaider's surgery to place the Lumbar Peritoneal Shunt was successful. He will be released to go home with his host family tomorrow, (Actually today, since I am writing this after Midnight... :-)

His bone graph did dislodge, so they will be doing another surgery to fix that in the next few weeks.

Thanks for all of your prayers for Shnaider and the Mueller family!

Shnaider has surgery tomorrow...

Here is another update from Stephanie: Shnaider's host mom.

Shnaider is having a lumbar drain placed tomorrow. They have to drain the fluid permanently in hopes of the leaking spot to heal. We will be in the hospital overnight tomorrow. Pray all goes well. He has been on the crankey side I think because of all the pressure built up. My kids start school tomorrow. We have made some major decisions related to my husbands and my jobs and our family life. Our basement flooded a few days ago and many other stressors are happening right now.
Shnaider will most likely need another surgery soon to make another repair as well and will need to stay much longer than we had originally thougth.
We have much going on with our family right now and Satan is taking advantage of the stress. The beginning of the school year is always a huge stress with Nick. Change and something new do not go well with Autism.
Thanks for all your prayers.
Stephanie
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Please be in prayer for the Mueller's! Not only do they have Snaider, who has physical needs, their youngest son, Nick, is autistic. He has done great with Shnaider living with them, but with all of the new changes of school, etc., this can be really hard on an autistic child. School starts tomorrow, and Stephanie will be staying with Shnaider at the hospital. Pray with us that God wraps His arms around this family and that they feel the peace that only God can give!!!!!!!!

To put in simple terms with what is going on with Shnaider's seal; think of trying to patch a pool full of water. The water pressure is going to push the patch away and prevent a good seal. This is what is going on with Shnaider. His first surgery went well, but the patch and bone graph did not have a good chance to heal and scar over before the fluid started building up. So, instead of the body just reabsorbing the fluid, it pushed its way through a "healing patch". So, by placing the lumbar peritoneal shunt, it will drain the excess cerebral spinal fluid, and all of the pressure will be gone and the original surgery sight will be able to heal and scar over, and form a good strong barrier. Then, in about 6 months, Dr. Young will remove the LP Shunt, and the body will resume its job of reabsorbing the cerebral spinal fluid.

Shnaider will probably only be the hospital for a 23 hr. hold. Pray that he does not have any compications, and that he is released as expected!

I will update tomorrow as soon as Stephanie lets me know anything!
We appreciate all of your prayers.

Here is a pic of Shnaider taken today by Stephanie.

Shnaider...

Here is a quick update from Shnaider's host mom: Stephanie:

Just a quick post, he is still doing well. His bump has totally swelled up again to as big as it was before. We are supposed to hear from the surgeon today about potential surgery Wednesday this week. He is eating and sleeping and playing fine. We are praying to get the surgery this week and start moving in the right direction for healing for him.
Steph
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I talked with Stephanie after this update, and after she had spoken with the doctor: they are hoping to get Shnaider in Wednesday. They have 4 surgeries scheduled for that day already, but are hoping to squeeze him in. If not Wednesday, the secretary said that the surgery will be scheduled for Friday of this week.

Please pray for the Mueller family as they make all of the arrangements with their children/jobs, etc., to be with Shnaider during his surgery and post-op. Pray that Shnaider does not start running a fever in the mean time, and that the surgery is successful!

As soon as I hear something new, I will post...

- SHNAIDER UPDATE -

[taken tonight from the host mom's blog]

Shnaider had his big test today. God was with us for sure. He went to sleep for the first part of the procedure and then they let him wake up and we had to wait for 3 hours with packing in his nose and and IV in. He wasnt very happy but a little morphine helped him sleep for 2 of the 3 hours we had to wait. Taking the acutal scans we had to just hold him down crying but he was a trooper and we made it through it. He took a 3 hour nap when we got home! He is a little cranky tonight.

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We hope to have the results of the test and a surgery date soon. Thanks to everyone for all the prayers. I definately had a peace the whole day and Shnaider did great considering everything they did to him. We pray they find the leak and it will be minor to fix.