Ken...

Yeah, another little precious angel has made it to the States for life altering procedures. Ken, like Jerrensia, is from God's Littlest Angels Orphanage, in Kenskoff, Haiti. We started Jerrensia and Ken's medical visa process at the same time and finally Ken came to the US a few weeks ago. He has adjusted to life well in Nashville, TN with his amazing host family! The host family has 3 older children that are spoiling Ken rotten, and from what I have heard, so has their entire town. :-) Thank you Elizabeth and Jason for taking Ken in to your home and welcoming him with outstretched arms and love!

Ken will start his appointments next week for his ptosis issues with his eyes and then he will be seen by a pediatric Orthopedists in the following weeks for his deformed left leg. With Ken's personality, he is going to win over the doctors and nurses and be their favorite patient.


Here is an update from Elizabeth, Ken's host mom:
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On April 9 after ten months of a lot of “hurry up and wait,” Jason and I could hardly believe we were on our way to Haiti to bring 13-month-old Ken back to Nashville. Those ten months included applying for and being approved to be medical foster parents; traveling to Haiti last June on a mission trip with another organization but getting to experience a brief-but-wonderful 30 minutes holding Ken while picking up his x-rays at GLA; being rejected by numerous doctors and hospitals for Ken’s pro bono care; identifying an enthusiastic surgeon in Nashville who championed his case and ultimately secured the pro bono commitments; and waiting for birth certificate, passport, medical visa and travel documents.

Aside from our decision to get married, I don’t suppose that we have ever been able to say with as much conviction that God was calling us to a particular action. But, in this instance, caring for this precious child, this particular child, has seemed from the beginning to be a connection crafted by our Creator. We have also been gratified and overjoyed to watch God work in our family, as Hannah, Caroline and Ben have embraced the idea and the reality. They have been every bit as excited and happy as Jason and I are.

When we arrived at GLA on April 9, Jason and I found Ken on the balcony playing with Emelyne , one of his very favorite volunteers. He allowed me to hold him but looked at me a bit warily, as I would expect any 13-month-old to do, and returned quickly to Emelyne’s arms. As we sat on the floor to play, though, he warmed up quickly and we began to see his winning personality emerge! Though Ken was born with fibular hemimelia (he is missing the fibula in his lower left leg), he can crawl like crazy and even stands on his strong right leg. He also has a ptosis of the left eyelid and seems to deal with strabismus in both eyes, but we were thrilled to find that he seems to see quite well. Every moment felt like a gift after loving Ken for all those months from a distance, not getting to really know him. Soon, we packed up some supplies and headed to the GLA guest house to spend time getting to know Ken better and allowing him the chance to get comfortable with us before our trip home. We were prepared for the transition to be difficult for Ken, but he embraced us with a trust that made it clear he had been well loved during his year at GLA. Soon, he was showing us his huge, toothy grin and darling dimple.

The day we left Haiti, Dixie provided us with perfect, step-by-step instructions for making our way through the airport and immigration so that we faced no surprises on the trip. Ken entertained folks on the flights and in the airports with his beautiful baby babble (or is he speaking Creole?) and, though we arrived close to midnight, he was such a trooper and smiled sweetly at his Nashville siblings. In the days since his arrival, Ken has welcomed so many friends and family here in Nashville who have prayed for him for months. He has settled into our lives as if he has always been here, even attending his sister’s senior prom! This week, we begin the appointments with pediatrician, ophthalmologist, ocular plastic surgeon and orthopedist. Our God has blessed Ken with just the spirit, determination and charm he will need to weather the challenges ahead. Let the healing begin!

Here is a brief update from Ken's host mom on his recent appointments. Thank you GLA for keeping all of your children so healthy!!!!!
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Pediatrician
He has seen our pediatrician twice now, and though below the charts in weight for his age, was pronounced completely healthy. He had lost one ounce at first visit, so returned one week later with a 15 oz weight gain.

Yesterday, we saw both the ophthalmologist and the orthopedist.

Ophthalmologist

The ophthalmologist said Ken’s “good” right eye is completely normal. The left (ptosis) eye has some amblyopia, so she asked us to try patching his good eye for one hour per day, which we began today (see attached picture). No strabismus surgery is necessary at this time so we will proceed with appointment with ocular plastics doctor next week for scheduling first eyelid lift surgery.

Orthopedist

The orthopedist named 7 issues with Ken’s left leg and recommended a combined straightening of the tibia and amputation of the foot/ankle in one surgery, with the heel pad being moved to the stump to allow for weight bearing skin should that ever be needed. He suggested that, if we were interested, we consult with Dr. Dror Paley in Florida who is the leading limb lengthening surgeon in the country. We don’t feel inclined to do that at this point after reading so many accounts of the pain and multiple surgeries required in limb lengthening. The orthopedist said that clearly Ken is happy and active and will learn to walk whenever his limbs allow for it! (He also predicted that Ken will be a famous musical entertainer someday)

Jerrensia...

(Miss J and her two fabulous host brothers...)

Here is the latest on Miss J, as she has stolen the hearts of everyone who meets her! Jerrensia, sweetheart, God has marked you for amazing things and we are all just so very blessed to be a part of your journey!
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It was eleven weeks ago, today, that our family woke up to a little princess sleeping in the room next door. I expected there would be an adjustment period, especially going from 78 degrees in the mountains of a tropical island to 14 degrees and multiple feet of snow in Michigan. In addition to the change in weather, Jerrensia woke up to a new home, room, bed, blankets, toys, kids, grown ups, sounds, smells, food, car seat, schedules, music lessons and gymnastics (for her brothers), school drop offs and pick ups, doctors, physical therapy, occupational therapy, x-rays, casts, cast removal, more casts, surgery, MRI, audiologists, ophthalmologists, and a host of other things. This is a lot to embrace for a kid. I’m not going to lie, I expected this to be extremely traumatic for her. By the grace of God, I was absolutely wrong. Getting in late the night before, the first glimpse Jerrensia had of her new world was when she woke up in her ridiculously wonderful fuchsia bedroom the next morning. Our boys, eight and four years old, could not wait to meet her! We had been praying for this sweet girl as a family since we met her ten months earlier. The part that is still so surreal to me, is that she woke up and seemed to know that she was ours and we were hers (in a manner of speaking). There was no transition period. It was like she had always been here. Everything just fit.

Since she’s been here, she’s learned how to use a spoon and fork, drink from a sippy cup, say ‘mama,’ ‘dada,’ ‘brah’ (short for brother), use sign language for ‘food’ and ‘more,’ and scoot around on her toddler wheelchair. She loves to sing and dance, climb on her brothers who are absolutely smitten with her (the four year old calls her Miss Princess), and play with her Little People Princesses in her brother’s Batman Bat Cave. She’s also been known to play with Batman in the Princess Castle. Fortunately, the boys don’t mind. They’re just as content to play with the princesses alongside Batman.

We jumped right into physical and occupational therapy to begin to assess her abilities, and what areas we needed to focus on. Soon after, she saw the pediatric orthopedic surgeon who diagnosed her with a rare birth defect called Caudal Regression Syndrome. She doesn’t fit all the characteristics but her joints can be described as Arthrogrypotic. Many of them just never fully developed. Current known issues: her hips are dislocated, her knee caps never developed, there is webbing behind her knees preventing her from straightening her legs, toes and ankles are underdeveloped, she has little muscle control, and bilateral club feet with the severe contractions in the middle of her feet. Right now, we’re focusing on her feet and getting them to a plantable grade as well as working on stretching her knees to try and get them as straight as possible.

Next step would be having the prosthetics department build her a standing frame that will help her to become weight bearing on her feet. If she does have muscles in addition to the isolated ones she’s shown us, that will help them to grow and become strong for additional mobility. She just had the Tenotomy done last week which released her Achilles tendon, allowing her ankles to flex, and is in another set of casts which will continue to be replaced every couple of weeks for an indefinite amount of time.

The MRI was done yesterday to begin to investigate some of the neurological issues we’re noticing with the right side of her face. This is still the very beginning of a long road of healing for Jerrensia. She has been very brave with all the appointments but she does have a high level of stranger anxiety that, so far, only the physical therapist and one of her sedation nurses have been able to break through. However, we could not ask for a better medical team to surround her. I’m truly brought to tears by their generosity and the high level of care they have given Jerrensia and to our family throughout this process. Our doctors have the wisdom that so many prayed for and as I mentioned earlier, she’s adjusted so well to life in our home.

But the path from a wheelchair prognosis to one that would include walking is a long and very difficult one, and right now, she doesn’t understand any of it. So our largest prayer request would be for her peace in the medical process, and of course, continued healing. Thank you to all of you who have kept this precious girl in your prayers!

Look Who's Lookin' Pretty in Pink...

Jerrensia was able to start her series of castings last week. And... if you have to wear casts for weeks at a time, you might as well be stylin', and that is the way Miss Jerrensia is going. :-) Since getting her casts last week, she has had to have both legs re-cast. Since her legs are the way they are, her casts can slip really easily and more than 1/2 " of slipping and they have to be re-cast. They are going to try to use some adhesive binder, but it sometimes can lighten pigment. So pray with me that her casts stay on and that if they do use the binder, that her skin stays nice and beautifully brown.

We have 3 kiddos on the docket, ready to come over. Please keep Ken, Sonia, and Michno in your prayers. All of their medical issues are different and they are all in different stages of their medical visa process. Pray that doors are opened and each of these 3 angels gets a second chance to a much more normal life.

Rebekah

Update on Jerrensia...

(Doesn't she look like a young Della Reese?)

Hands That Heal has been so busy lately. We went from no patients coming to the US in 2010, to working on 4 patients, all from God's Littlest Angels orphanage (GLA), all at the same time. God gave us a rest in 2010 to gear up for 2011. God is moving in so many ways it is making my head spin. I can't wait to fill you all in on some of the amazing ways that God is using 'the least of the least of these'!

1 Corinthians 1:26-31 (NIV)

²⁶ Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. ²⁷ But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. ²⁸ God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, ²⁹ so that no one may boast before him. ³⁰ It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. ³¹ Therefore, as it is written: “Let the one who boasts boast in the Lord.”

I love how The Message version of this passage is written:

1 Corinthians 1:26-31 (The Message)

^26-31Take a good look, friends, at who you were when you got called into this life. I don't see many of "the brightest and the best" among you, not many influential, not many from high-society families. Isn't it obvious that God deliberately chose men and women that the culture overlooks and exploits and abuses, chose these "nobodies" to expose the hollow pretensions of the "somebodies"? That makes it quite clear that none of you can get by with blowing your own horn before God. Everything that we have—right thinking and right living, a clean slate and a fresh start—comes from God by way of Jesus Christ. That's why we have the saying, "If you're going to blow a horn, blow a trumpet for God."

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Speaking of a child that God is using for His glory, here is an update on Jerrensia: This is paraphrased from Jen, Jerrensia's host mom! Thanks so much Jen and Jay for taking such good care of this princess...

The first week has gone really well... better than I anticipated actually. Jerrensia seems to be taking everything in stride. She plays really well with my boys and overall seems very curious about her new world. The car seat doesn't bother her though you can tell she'd prefer not to wear the puffy coat. She's eating and sleeping well too. She's still very cautious around men. Jay's parents came to visit yesterday and she didn't want to have anything to do with Jay's dad. She was initially very cautious around Jay but she's warmed up to him in the last couple days too. I can now leave the room when he's holding her and she won't cry! She really doesn't babble too much, but she sings and dances constantly.

In terms of the doctor's appointments, here is what we've had thus far, and what we have ahead:

Wednesday 1/12
Physical Therapy & Occupational Therapy Assessment:

They did a fairly thorough evaluation of the range of motion and fine motor skills. I don't think we really learned anything new in this appointment. Her hips are the biggest issue, of course. She has incredible upper body strength which will be in her benefit should she need orthotic bracing. The range of motion in her knees is extremely limited. They gave us a sheet of exercises to do with her at home to help "stretch" the skin because it's so tight right now. She has something going on in the right side of her body. When she is sitting or reaching for objects, she's overcompensating with her left side which is throwing her spine off center. There is an overall weakness on the right side. In terms of fine motor skills, she's moving food around in her mouth and mashing it at an age appropriate level. They recommend we start her on table foods and she's been doing great with that. Developmentally, she's still around 9-12 months with picking up objects and being able to deliberately put them down in specific places, as well as use her index finger and thumb to pick up food rather than just grabbing it by using her fist. She hasn't worked at developing the fine motor skills because of the need to use her hands/arms for mobility. Her feet are the size of a newborn baby because they're not weight bearing yet. Apparently feet don't really start to grow until a baby starts standing.

Thursday 1/13
Pediatrician Checkup
Our primary care physician did a slightly different evaluation on Jerrensia. Spina Bifida was ruled out, her heart seems perfect (no murmurs), and her lungs clear. She did an light test on her retinas and the right side shows a bit of cloudiness-- not as reflective as the left which she thought was a possible indicator of a level of blindness. The right eye is also "lazy" primarily when she looks up, though I noticed it strayed when she was looking straight at me a couple days ago. Both of her ears tested low (right side lower than left) using a tool that bounces sound waves into the ear drum and measures what comes back. Both her eyes and and ears were enough of a concern that we received referrals for a pediatric audiologist and pediatric ophthalmologist. Those appointments are January 27th and February 1st, respectively. She had initial thoughts on her legs and possible courses of treatment, but I'm looking forward to hearing Dr. Maples assessment.

Moving forward, we have 2 - 1 hour physical therapy sessions every week (Tues/Thurs) and 1 - 1 hour occupational therapy appointment following the physical therapy session on Tuesdays.

In other news, Dr. Maples had a cancellation and will be able to see Jerrensia on Monday!!! Woo hoo!!

Jen Kroll
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So, that is the latest on Jerrensia, and more to come on Sonia, Ken, and Michno soon. If you want to get the latest on Sonia, go here.

Thank you for all of your support for HTH. On behalf of the HTH team, and the precious ones that we work for in Haiti: THANK YOU!!!

Rebekah Hubley
Founder and Director of Hands That Heal

Are You Still Out There???

(Jerrensia and Jen--Her amazing host mom)

If we still have any readers checking on us, we are still here... :-) Being the Founder of HTH, I, along with our nurse coordinator, Stephanie Mueller, keep this blog up. Both of us have had one of the busiest/hardest years of our lives. Both of us have children with special needs, and some of our children have had an eventful year. In saying all of this, 2011 brings us both to a year of healing and moving forward.

We did not have any children come to the US on Medical Visas in 2010, which was a blessing from God. We just had our first medical visa child of 2011, and Jerrensia Charles could not be a more beautiful way to start off 2011. I will be getting weekly or bi-weekly updates on Jerrensia from her host family,and will be posting them here.

Please pray for Michno and Ken, as they are 2 and 3 on our waiting list to get their medical visas. Michno has his passport and is just waiting on one more doc letter and then we can apply for his MV. We are still waiting on Ken's passport and then we will be able to proceed with his case. Both boys have host families waiting and praying for them. Please pray for patients for their host families as they wait. It can be very agonizing as host families to wait, knowing that the treatment is right at their fingertips while we wait on bureaucracy.

Thanks so much for praying for HTH, and for faithfully checking in on us!!!

Rebekah Hubley--Founder and Director of Hands That Heal