Orphans with Arthrogryposis

There are kids with Arthrogryposis all over the world who wait for a family to call their own. Every child should have a Mama and Papa to love them. Sadly many kids will never know the love of a family as they will live out their shortened lives in institutions. The children posted here are from Reecesrainbow.com If you can't adopt, you can donate to their grants on reecesrainbow.com Don't leave them to die in institutions.

Monday, November 11, 2013

Kambry pictures!


Update on Kambry
We have a video of Kambry showing her playing and speaking with her sweet little voice! And with all these pictures it is safe to say that her body works well! Besides what looks like clubfeet and possible curved fingers on the right hand, her contractures don't seem to affect her much at all! (She makes it to AMC status barely, with at least three contractures in at least two areas of the body--clubfeet and fingers on one hand.) Just watching her wave bye-bye in the video or hold her baby doll shows she has excellent muscle control and function. She has plenty of muscle for an AMCer! And she is wonderfully cheerful!
She has Freeman Sheldon syndrome (or whistling face syndrome), a rare type of AMC, but besides the clear facial markers, the rest of her body is relatively typical. At least what we can tell!
This is a very good prognosis!
Let's help her get a family!


Sunday, November 3, 2013

Our focus for November: Kambry!

Meet Kambry!
There are over 400 types of arthrogryposis and Kambry has one rare type called Freeman Sheldon Syndrome.
(Dr. Hall says, "You must remember that arthrogryposis is a symptom, not a diagnosis. There are over 400 diagnoses that can cause AMC." So when you know the diagnosis you can treat effectively!)
To quote the arthrogryposis atlas:
"Freeman Sheldon Syndrome:
This is also called cranio-carpo-tarsal dysplasia, or whistling face syndrome. It
is a rare, autosomal dominant disorder with classic facial features of a pursed
mouth, deep-set eyes, and a small nose. Intelligence is normal. The infant is
often seen because of foot and hand deformities, including flexed, ulnar
deviation of fingers, clubfeet, or vertical tali. There may also be dislocated
hips and scoliosis and small stature."
Kambry is doing really well. She's up and about and it looks like she's walking on her clubfeet, although it mentions she has had them surgically corrected and maybe that's not evidenced by the picture. It looks like she would need ankle braces known as AFOs or possible future casting to straighten them out more. But overall I would not expect Kambry to need as many surgeries as the more common types of AMC. She has good-looking muscles (a coveted attribute in the AMC community) and based on the position of her upper body, it doesn't appear that her shoulders, elbows or hands are affected at all. It's hard to tell from this picture, but it doesn't seem that her hips are affected either.

One of the biggest things to remember about Freeman Sheldon syndrome is that it has very specific and easy-to-diagnose facial characteristics (aka the whistling face). But these are often confused with fetal alcohol syndrome to those unfamiliar with the specific characteristics of both conditions. This has scared some potential parents away, as many are told that fetal alcohol syndrome comes with "distinct facial characteristics." From her picture, all of Kambry's facial characteristics are purely due to her AMC type. Freeman Sheldon syndrome does not have intellectual disabilities or behavioral issues associated with it.

If you are interested in Kambry you can contact Reece's Rainbow by going here.

Monday, September 30, 2013

Our focus for October: Shawn!

Meet Shawn!
Shawn is just a well-adjusted, amazing little boy who is highly functional and mobile! He has all-limb Hall's contractures (arthrogryposis multiplex congenita). He is receiving an education, has a foster family inside the orphanage giving him much needed one-on-one time and he is social and outgoing. Because we can't say it better we're just going to quote the family who has met him outright:
"Shawn just turned 5 this summer and his special need is post-operative congenital Arthrogryposis.   He is a very sweet and very capable little boy who can walk, sit, raise his arm to grab a toy above his head and bend over to pick things up.  I also observed him reaching over to pull on a little friends ear!!!  I honestly didn't think I would have a favorite when I went to China but this little guy stole my heart within minutes...so much so that I asked to see him again before I left on our last day...  If I could've smuggled one child home with me...well it would've been him!

Shawn lives with a foster family in an apartment within the orphanage.  He is receiving his education through Half The Sky's Little Sister program and is described as an optimistic and active child.  He likes to listen to stories read by the teacher and has good language skills.  He understands instructions quickly and expresses his thoughts well.  Sometimes he thinks and explores difficult questions as if he is a "little teacher."  Shawn performs well in class, shares well and likes to play games with other children.  "He likes to play with the bowling ball and electronic piano.  He enjoys coloring and likes to dance with the help of the teacher. He is kind and will comfort others when they are sad."

Go here to find a video of Shawn!
Please email JCandRebecca@Yahoo.com for more info!

Sunday, September 1, 2013

Meet our focus for September: Tavin!

Meet Tavin!
Tavin is 21 months old and a doll!
Several people have already discovered Tavin on the Reece's Rainbow website and asked about him!
No commitments yet though!
Tavin appears to have joint contractures in his left leg. It's hard to tell if anything is affected in his upper body since his wrists look so good and all limbs are pretty straight!
For those of you familiar with arthrogryposis, we're talking easy medical stuff.
Easy transition since he's young.
Adorable kid.
It wouldn't be surprising if he had a family before this month is up.

Thursday, August 1, 2013

Meet our focus for August: Danika!

Originally we were going to write about Danika last year, but Russ*a put the ban on US adoptions and that stayed our hand. But since one of our Bring Hope members lives in the UK and we know the UK as well as Canada may still adopt this girl then that leaves some hope she'll be adopted.
But she must be adopted with her little brother who has no special needs. 

We've been using "Danika" and "Abrehem" to refer to these children, but we have no idea what their actual names are. Any adopting family can change their names anyway. All we know is that they are in Russ*a, and they cannot be adopted by Americans even though they are available for adoption and desperate for adoption.

Danika was born in April 2008. She has brown eyes and dark brown hair, although based on her picture I would call it light brown hair. She is said to have astigmatism and Hall's contractures (arthrogryposis). She is described as "communicative and friendly."

Abrehem was born a year later (April 2009). He has gray eyes and a calm nature.

Would you share this post with any Canadian or UK friends who are considering adoption?

They were listed as being in "Region 13." Even though they are no longer being actively advocated for on Reece's Rainbow, their profile is still there and that's where to get a bit more information on how to continue with the process. Go here for their profile.

Obviously their chances of being adopted together and under the US ban are low. But sharing about them can bring them hope!

***Since the US-based organizations cannot be involved, there's no way to accept money towards these children's adoption. So if you have your $12 donations ready and want to support a family adopting an AMC child, please go here to support the Schmitt family who are $5,000 short and pick up their two sons (one with CP and one with AMC) in about 8 weeks. Thanks!

Sunday, June 30, 2013

Meet our focus for July: James!

James needs a family! He already walks, smiles, plays, poses for pictures and is a super smart bundle of joy!
James is not in an institution and is instead in a foster home! In fact everything about New Hope Foundation is amazing! We've seen kids in institutions in China come home in rough shape. But here they are healthy--socially, emotionally and physically.
To quote their website, they aim to...
  • To take physically handicapped babies under six months old and provide them with a caring and secure environment;
  • To provide long-term care in as close to a normal home environment as possible;
  • To seek out the very best medical solution for their handicap and facilitate their treatment;
  • To work very closely with the local Children’s Welfare Institutes to give these children the very best opportunities for the future and also raising the awareness of the needs of these abandoned children in China;
  • To employ and train local staff, as well as working closely with local community to help support their needs;
  • To provide an opportunity for volunteers to get be involved with the care of these children;
  • To provide training and support for prospective foster parents in conjunction with the local Children’s Welfare Institutes; and
  • To keep accurate records of the children’s development so that they have a “history”.       

  • I can't tell you what that will do for his brain development and transfer to a new family! Wonders!

    For more information on James (and more pictures) please click here.
    You can make such a difference! We know three families now who have found their AMCers from someone sharing on Facebook alone!
    And once again we have no way to donate your monthly $12 to this child's adoption fund, but you can continue to make donations to the few families who are in the late stages of adopting their AMCers and who are desperate for help:
    The Blackmon family needs a few thousand. They met their children last month and are waiting to finalize their adoptions.
    The Schmitt family also need a few thousand. They have also already met their children and are waiting for their final trip.
    Caius' family (the Robinsons) have committed to another child (another double adoption!) and are a few thousand short as well. They are finishing up their dossier and are almost done with all the adoption paperwork. The way things are going they may finish their adoptions and take home their children around the same time as the Blackmon and Schmitt families even though they have not met their children yet!
    Also if you wish to donate towards New Hope Foundation to help kids like James, go here.

    Monday, June 17, 2013

    Aubree Update!

    ***Updated on 7/10/13 to include more info from people who met Aubree. New info in parenthesis***


    (Aubree loves to go outside and pick flowers! She also knows how to write and has memorized around 100 poems and songs.)

    From a gal on a short-term mission trip who spent some time in Aubree's orphanage recently:

    Aubree is a happy, loving, and well-adjusted little girl. She is popular in her groupa and loves to talk to people and attend the Montessori program at her orphanage. That being said, she is a child you don't want to turn your back to. She bites, pinches, and hits you when she wants attention or is jealous.  (Same gal adds later, "That typically happens when she is very excited. During our one-on-one time or when she was taking her classes she was very sweet and loved to show off her journal.") She is also very dominant and wants to have your attention at all times, which is difficult when there are other children in the room. ("These kids just have a short amount of time with their visitors and they know it and they crave attention so badly. This girl is a sweetheart and would be a great daughter. Dave and I were there for 21 days and had tons of interaction with the girls especially. She never did that [pinching, hitting, etc.] to me. They all really loved my husband." ~Jane)  While she is very smart, I believe she has some mental delay, though how much of this is due to being raised in an orphanage environment is unclear. She was thrilled when I told her a lot of people loved her and were praying for her, and in the right family she would thrive.

    (I told her that many people loved her and were praying for her to find a family and the look on her face was indescribable. It was like "Really? People love me?")

    I can't imagine having to vie for attention all the time! I can't wait to see this girl in a family who cares about her and gives her their time and attention! The missionary suggested that making Aubree the youngest child or only child in a family would make her super happy. 

    I loved this update because the last update was so heart-breaking--Aubree clinging to a dad's hand (as he was adopting her friend), begging for a Mama and Papa of her own, crying for a family to love her. It's nice to see her relaxed and in her social element. She sounds like a goofball! And cheerful and happy and well-adjusted among her peers. And she pinches... which just makes me love her more. I don't know why. ;)

    As far as the small glimpses of Aubree's AMC in her legs only it seems she has straight legs and club feet. They are small from not getting a lot of weight bearing. I don't know the condition of her hips, but I do see a dimple on her side that indicates that she is affected there. But I wouldn't put walking out of the question once those feet are fixed and she starts weight bearing! Her arms are strong and so she can transfer and is pretty mobile. Pretty much from what we do know it looks like she will be 100% independent one day!

    Aubree has 13 months to find a family!!! Please share her file! Go here to learn more!

    Sunday, June 9, 2013

    Bill has a family!

    We just got word that Bill has a family! Bill (or Liam as he was listed in China) spent five years in a Chinese orphanage and two years with a temporary family in America who were not a good fit for him.
    Now he has a WONDERFUL family! (Friends of friends.) He is in great hands now!
    (Thanks for letting us know, Ani! We do worry about "our kids." ;))
    First Oscar/Oliver, then Cauis and now Bill!
    Come on Raymond and Aubree!!!

    Friday, June 7, 2013

    Caius has a family!

    Someone said yes!
    Caius has a family!
    Go here to read all about them.

    (And their family blog is here.)
    Three families wanted this little guy. Three!
    I wish all our kids has as many pictures as this one so people knew how great they are. Then they'd all have families!
    AMCers rock.
    Congratulations Caius!
    A family is coming for you!
    You're going to have siblings who love you and help you. And parents who cuddle you.
    Say bye-bye orphanage! My mommy's coming!

    Saturday, June 1, 2013

    Our focus for June: Oliver (Oscar)

    Over the last couple of weeks there has been a small sharing campaign to find little Oliver a family. New Day Foster Home put up a video of Oliver that we could share. CCAI (Chinese Children Adoption International) had Oliver listed as "limb differences" but many AMC families noticed that it was arthrogryposis right away. (We're so smart. ;))
    He looks to have classic amyoplasia, the most common type of AMC, affecting all four limbs. The contraption they have him in seems to be a supination splint since his shoulders are a bit inverted. (Just a guess.) I see contractures in his knees, wrists, elbows and clubfeet. I also see stretches and serial casting in his future. Based on the number of kids we know with amyoplasia we can tell you he'll be mobile, functional, ambulatory and do well in school. That's a prediction we'll put money on!
    Last month Oliver was picked up by Reece's Rainbow and given the code name Oscar. And then last week Oscar got a family!
    Oscar is on the My Family Found Me page!
    So we are waiting to find out who the family is and what their needs are.
    I love when a kid gets a family, and it's even more exciting to happen so fast!
    If his family sets up an FSP through Reece's Rainbow (meaning they need to fundraise) we'll be sure to help. Right now we have no way to help and just want to celebrate with them! If you were looking to give a donation to an AMCer this month, please still consider the Blackmon family. They are in country right now picking up their two children (one is an AMCer) and are still a bit short. Go here to help them! Their need is much more urgent.

    Friday, May 10, 2013

    New Pictures of Caius!

    I cannot stand how cute this guy is! Please someone adopt him soon!!!

    Here is a post with LOTS more pictures of him! He's doing well, playing with a ball and has two teeth coming in!
    Original picture and description here

    Tuesday, April 30, 2013

    Our child for May: Bradyn!

    While we were still setting up Bradyn's month of awareness, he found a family! We have a little over two weeks to help them raise $5,200 in order to travel to meet their sons (Bradyn and Steven) on May 18th since Bradyn is being added on to an adoption already in progress! The family has a $200 grant through Bring Hope starting now and ending May 3rd. It's a drop in the bucket, but let's help them get it all! If their account reads $5,700 before the end of the day on May 3rd then they receive the $200 grant. The family will also be fundraising like mad between now and May 18th. To donate to them go here.

    Here's their story written by Tiffany Blackmon, Bradyn's new mommy:
    Troy and I met in August 1991, during college at Texas A&M.  We dated for several years and were married in January 1994.  We have 5 biological children.  The oldest is 14 and our baby turned 3 today.  Our adoption story started in October when we saw a picture of Steven.  In the past, we had said that one day we may adopt, but never had taken any steps toward it.  A few weeks after seeing Steven’s picture, Troy and I sat at dinner one night and seriously discussed Steven.  We had never considered a special needs child, but because of our experience with our son, Colton, we felt like this was something we were being called to do.

    Within a week, we had received information of Steven and had committed to him. 
    This long process was beginning.  During the next few months, we started looking to add another child to our adoption.  We felt like we could care for another child, but “our” child was never available.  Every time we found a child waiting (that we were drawn to), there was some reason that we could not adopt.  They were either with another agency or had a family already commit to them.  It was a very frustrating time!

    Our dossier was mailed to Bulgaria on March 5 for only 1 child, Steven.  It was translated, authenticated and ready to submit on March 22, the same day I got an e-mail from our agency with information on Bradyn.  We immediately knew he was the one!  We got more pictures of  him on March 25 and drove to Austin to Apostille commitment papers the next day.  During this time, I was able to get information about AMC from Alexis and several other momma’s which has been so valuable in planning Bradyn’s care.

    Currently, our dossier has been verbally approved.  We are waiting on a signature from the Minister of Justice and travel dates for our first trip.  We should get to meet our boys soon, hopefully the week of May 18th.

    Bradyn turned 3 yesterday.  He spent it without a party, without a cake and balloons, without a family.  It will be his last birthday alone.  We are excited to add him to our family!

    This was the first picture we saw of Bradyn

    We believe that all children are a blessing.  God has called our family to love and care for these two boys.  He has blessed us with so much!  He has blessed us with the ability to provide a great place for these little guys to grow and to call home.
    Religion that God our Father accepts as pure and faultless is this: to look after
    orphans and widows in their distress.        James 1:27

    Adoption is expensive!  Total cost for bringing the boys home is estimated at $32,000.  We are currently raising money to pay our final fees to our agency and our travel expenses for our first trip.  We need $5200 for this step. 

    You can follow our adoption story at www.fiveplusonemore.blogspot.com

    Tuesday, April 2, 2013

    Meet our focus for April: Bill


    This is Bill (a.k.a. Liam from An Orphan's Wish). Bill was originally adopted from China, but is available for adoption here in America. He is currently in Texas but anyone from anywhere in the US can adopt him. His AMC primarily affects his arms. As you can see he has wrist contractures and shoulder involvement. But great range of motion in his elbows and no leg involvement! He seems to do everything a typical boy his age does and is mobile and independent and smart.

    Bill does need a special kind of family dynamic where he is the youngest and smallest.  

    Bill's adoption costs will be minimal (as far as adoptions go) so we are not fundraising at this time for him unless an interested family steps forward and needs the help. Creating a Family's site where Bill is listed notes:

    Cost for this adoption are uncertain at this time, but will likely be around $5,000-$8000. Bill may be eligible for a monthly adoption subsidy from the state (depending on where you finalize the adoption). The agency can provide more details on this possibility. 

    So right now we're just doing a sharing campaign. Can you share Bill with anyone interested in adoption? He has been transferred a few times and needs a permanent, forever home. Thanks!

    If you are interested in adopting Bill please contact Krystie at Children's Connections: krystie@childrensconnections.org.

    Friday, March 8, 2013

    Tears of joy over a smile.

    When all of us at Bring Hope saw this painting for the first time, we knew right away who it was. "Raymond!" There are his eyes, those eyebrows and that face! This was the artist's vision of Raymond with a family. Future Raymond. Raymond smiling.

    The artist, Rachael Rossman, decided not only to help us show Raymond's future joy, but she insisted on doing it pro bono and moved it to the top of her priority list as Raymond now faces transfer. You can read about Raymond's impression on her and see more of her work here.

    Since seeing this picture I cried right into my daughter's hair. She said, "These are happy tears, right?" She knows the difference. She's Raymond's age. She also has a smile. She also has arthrogryposis.

    Every time we advocate for this guy the same question is asked, "Do you have a better picture?"

    One of our Bring Hope staff has blogged on her personal blog about how important a good picture is for these very vunerable orphans. (You can read that post here.) Notice how she shows her own boys and their good and bad photos? She also shares her adopted son's picture that was on Reece's Rainbow and another picture that was taken at his orphanage that is not flattering. Wow. Her son also has arthrogryposis too and was older than Raymond when adopted. (Her son was adopted after having been transferred out of the baby house. It was hell for him.) What struck me was how much a picture can made a difference! What was communicated through that picture mattered! What if that first ugly picture of sweet dimple-faced Aaron had been his listing photo?

    No other pictures can be taken of Raymond unless someone flies over there, gets the director's permission and snaps a shot! That's HIGHLY unlikely. So this is what we have. Well, and one from the listing in his birth country that is also blurry and even older.

    This precious baby needs love. He is facing transfer soon. Those of you who have been following our blog know that transfer is not a good thing. The institutions where young children with special needs are sent have care that is below the basics of what they receive in the baby houses. Some are sent to adult mental institutions. The survival rates there are dismal. After transfer it is estimated that between 85-95% die within the first 12 months. And they don't die from their special needs. Arthrogryposis is not a condition that carries any expiration date. It is not a mental condition in the least!

    To quote the founder of Reece's Rainbow:

    "That is when I found out what happens to children with Down syndrome and special needs when they are born abroad," Roberts said. "There is a very high rate of abandonment. They are transferred to mental institutions at 4 and a great many of those children do not survive their 5th birthday."

    "We recently, just in the last two months, had an 8-year-old girl adopted out of a mental institution," Roberts said. "They put 18-month clothes on her. She was 15 pounds. It is far more common than people realize."

    (Interview found here.)

    And adoption can change Raymond's life! Just as it has changed so many others.

    To donate towards Raymond's adoption please go here. If he can get up to $5,000 then he will move onto a new "sizeable grant" page on Reece's Rainbow and have an even better chance of being adopted as parents often look there first when considering a child to adopt. (I know my family did.)

    Also please consider sharing about Raymond on your social networking sites like Facebook, Twitter and blogs. Just two weeks ago a friend of a friend committed to adopt our Anthony. Sharing works!!

    Let's work together to make this beautiful smile a reality for Raymond!

    Thursday, March 7, 2013

    Anthony has a family!

    Anthony has a family!
    Our child for the month of January has a family! And you can thank social media! At least a little. One of our friends (an AMC mom) shared with her best friend. Her best friend then shared with her husband and even though they were not considering adoption they fell hard!
    This amazing family has a new blog for Anthony you can read here. 
    Because the family just committed to Anthony there is much to do. The first step in adoption is a home study. That is when your home state qualifies you to adopt a child. This includes providing financial information, having a social worker come check you out and providing information about your background. It takes roughly 8 weeks to complete this process. And this has to be done before any other steps can be taken in the adoption process! But home studies are not cheap! Although it varies by state and agency their home study will cost $2,000.
    So in order to start the very first step they need to raise $2,000! Four days ago the girls (Anthony's future sisters) had $66 saved up from babysitting jobs. So that's only another $1,934 left to go! If you want to help (and please do, time is not on Anthony's side!) please go here to donate to their Paypal account.  
    To show you how important the home study is, without a completed home study, Anthony's family cannot even apply for an account with Adopt Together (to do any real fundraising) or apply for any grants. And because Anthony is older there is a host of reasons why things need to start NOW.
    Let's help them take the first step! 

    Friday, March 1, 2013

    Meet our focus for March: Caius!

    Meet Caius!
    Caius turns 1 year old next month. We have one month to focus on him and prepare for his birthday celebration. Of course we can't throw a party in person, but we can make some noise across the ocean! What if he got parents for his birthday? My son did. Well we committed to him two months after his first birthday. (I remember crying all through his first birthday because he didn't have a mommy.) And we took our son out of the orphanage forever right before his second birthday. (Average adoption processing time for this country and kids with AMC is around 7 months. Ours got delayed a bit since my husband had a major surgery.) Here's my son, Roland.
    Already adopted! Mine mine mine!
    Roland and Caius were born in the same country and have the same condition so obviously we want to help Caius get his own family and show you how wonderful having a son with AMC can be! Roland is one of the best things to ever happen to us.
    We have had our son home for six months. In that time he has almost completely caught up developmentally from the lack of having a mom and dad (attention/stimulus) early on. He enjoys going to preschool six hours a week. He enjoys dancing to music, playing on the iPad my employer gave me and turning the pages of his books. Last week he learned to walk and now walks everywhere independently. He also loves to imitate everything his big sister says and does. It's hilarious.
    Oh and this boy can give serious hugs and kisses. He's a cuddle pro.
    And since we *just* went through this journey, let me share what your life may look like if you adopt Caius.
    Medically you can expect to come home and see a good pediatrician who knows about adoption stuff. Your new boy will need a blood test to determine what immunizations if any he needs. He'll need to see how his little body is doing and what things you may need to give him to get him healthy. (Orphanages are not healthy places with good nutrition.) We started giving our son pediasure, vitamin D gummy vitamins (that are delicious and help his bones and joints) and we even snuck fish oil into his apple sauce. Seriously one day he'll have real apple sauce and it will be like ambrosia. ;) But you don't need to do those things, or you may want to do different things. (Although I do recommend the vitamin D suppliment for AMCers.) They also checked him for parasites and that involved waiting for him to have a poopy diaper and getting out the little kit they send you home with that has the little shovels. Yes the glamorous life of the adopting parent. ;)
    Then when you feel your son is bonded to you and he reacts to you as his parents (giving you eye contact and crying for you when he gets a booboo) then you can start dealing with his orthopedic issues. Some do this sooner and others do this later. We started three weeks after adopting him and felt that was a bit soon, but not by much. But it all worked out. Caius will need a pediatric orthopedic doctor. Caius has arthrogryposis and because of that qualifies for free medical care at Shriners Hospitals for Children. We recommend Dr. van Bosse in the Philadelphia Shriners if you can do it. As an orphan with a pre-existing condition you will also qualify for Medicaid. (His medical issues should NOT cost you your savings! We spend about $20 a month on medical stuff since we don't live close enough to Shriners. We paid twice that during serial casting since we paid a copay every other week. We don't pay much now that we're done with all the major stuff.)
    Caius will need serial casting, specifically the Ponseti method that any good orthopedic doctor worth anything will be familiar with. This method is where you go in to have a limb casted and shaped slowly over time. It's like having braces on your teeth and getting them adjusted. Every week or two you go in, have the cast removed and get a new one placed. Slowly this stretches out whatever joint is stiff and stuck. (Arthrogryposis is a joint condition.) Wrists, elbows, knees and feet among other things can be serial casted to avoid surgery.
    Serial casting. Image taken from Plymouth Hospital.
    Remember "Laurel" who was adopted six months ago? She's 16 years old and has AMC just like Caius. She just reached the half-way mark on serial casting. Half way done!

    Sitting pretty with her new casts on.
    We did serial casting on Roland's elbows and knees and feet. I'm thrilled with the results and I'm also thrilled we're done with it so he can take real baths again! Roland responded really quickly, partly because of his young age and partly because his AMC was not a more severe kind.
    I hate that Caius' picture has him all covered in clothes! That's what we get for getting pictures during winter. But you can tell his legs are not quite as bent as my son's. One looks a bit higher like maybe there's some hip involvement. An x-ray will tell you if the hip needs anything done to it. And I cannot tell because of the giant warm sweater if Caius has straight arms or slightly bent. (If my son's hands had been covered I wouldn't have known from his picture how they were either. They turned out to be straight.) I want to guess Caius has slightly bent arms. Having bent arms is way more functional. We have since done serial casting on Roland's arms until they were able to bend enough to feed himself. Now that he's out of casts we do daily stretches on them.
    And that's about it. If you were hoping to totally completely avoid all doctors, well AMC kids do see the orthopedic doctors a lot initially but then less and less as they get older. You will also want to see a physical therapist and occupational therapist (who usually share the same building and your orthopedic doctor would give you a referral for them) who can give you ideas of what kinds of exercises to do at home. We go once a week and the therapists just play with the kids, but it gets them moving and doing more and more!
    Daily life consists of getting up at around 7:30am (the orphanage trains kids to sleep or stay quiet through the night), changing his diaper, putting on his KAFOs (leg braces) and letting him walk around the house, feeding him breakfast (it goes faster than if he feeds himself, but he can feed himself), playing (or preschool twice a week) until noon, lunch, nap, stretches after his nap, playing with his sister when she gets home from school, "helping" me fold clothes or do a household chore, splashing in his bath which he loves, putting on new clothes (he "helps" but can't dress himself yet and will need to figure out how to do it with limited mobility), learning to brush his own teeth (yeah they don't do teeth brushing in the orphanage), sometimes if we're being super parents he gets an extra stretching session and then kisses and hugs goodnight and he sings the goodnight song.
    Stretching takes around 10 minutes. It would take five minutes if *someone* would cooperate!
    I can't tell you how wonderful it is to have an AMCer. We have two--Roland's new big sister also has AMC. She also walks, goes to school, gets ready for bed and all that too. Although she doesn't get stretches because she's older (five years old in kindergarten which she says makes her a "growd up") and she either does her own stretches or naturally gets stretches as she plays and moves around. She also wears leg braces.
    I feel like I'm always telling people how our lives are perfect--rainbows, butterflies, sunshine--because that's how I feel, but it's not always easy. I hated going to the doctor initially. I worried over serial casting. We had a sleepless night or two. And the initial transition after bringing our son home(especially the first three days) was hard on all of us. But adoption is wonderful. Our baby boy is wonderful. AMCers are super smart (above-average intelligence if you believe Dr. Hall, the famous geneticist) and super great. And if you want to adopt a little guy who will only ever know you as mommy and daddy, and adjust a lot better since he's so young, I highly recommend Caius.
    To donate towards Caius' adoption please go here. 

    Wednesday, February 20, 2013

    Drake has a family!

    Drake has a family!

    Prologue by Bring Hope:

    Last year we advocated for a little girl with arthrogryposis named Rita. Since we could not raise funds for Rita at the time because of her situation, we instead started a sharing campaign. Hundreds of "shares" happened across Facebook and blogs. Rita was famous in a matter of days! (In fact Rita caught the eye of one mommy who later went on to adopt our other AMCer, Victoria!)

    When Kelly contacted Bring Hope to say she had been planning on adopting Rita, we were overjoyed as it marked the first time we could celebrate one of "our kids" finding a family in the same month we were spotlighting that child! That was very encouraging to us. (That was the first time it happened, but not the last!)

    But our friend Kelly was not content to merely stop with changing the life of one girl. We watched her champion the cause of many orphans. (In fact I see Kelly sharing Sadie's file just about every day!) When Kelly saw that Melissa wanted our little Drake (as Melissa very subtlety commented "I WANT HIM" on that post, heh) she immediately sent Melissa encouragement and resources. We are privileged to be one of those resources.

    A lot of the following story happened behind the scenes as the family prepared to commit to Drake and we attempted to help them raise the necessary commitment fees without spilling the beans on who they were commiting to! But now we are happy to announce how it worked out! Below is the whole story told by Drake's new mommy, Melissa.

    Arthrogr...what? A few short weeks ago I had no idea how to pronounce arthrogryposis, much less know what it was. Another unfamiliar diagnosis listed below a waiting child's name.

    Enter Drake...

    Someone on facebook posted Drake's link from Reece's Rainbow and I said I WANT HIM! Of course, I didn't really know what I was saying....I had seen his little bitty figure transform into a smiling little boy waving at the camera and was amazed! Fast forward and now there are even more videos and this little boy astounded me!

    That one comment "I WANT HIM" (and yes, I did comment with all capital letters) led another mom to message me and let me know that she would answer any questions I had about arthrogryposis (there's that word again) and that there was a terrific support group for families who have adopted children with this diagnosis. We visited and I contacted another mom, Alexis, to ask her a few questions...

    I was hooked! My husband and I, and our 3 children, were just about to submit our dossier for Lance, a 2 year old with severe CP in Drake's country and I just could not get rid of that tugging that Drake was special...I had butterflies for him, just like I did for Lance. I talked to my husband, who wonderful man that he is, told me his concerns but didn't say "no" (That's almost a "yes", right???) So we talked about it a lot, did a little bit of math, and realized that to add Drake to our current adoption without stalling the process for Lance would cost an additional $7000.00 and have to be less than 2 weeks since we were almost ready to submit our dossier.

    $7000.00- that's nothing to save a life/ a soul! Right?

    Well, here's the thing: My terrific, wonderful husband said "$3500.00 in 2 weeks and we will move forward confident that God wants us to adopt Drake."

    Oh my goodness!!!! THAT'S A YES!!! RIGHT? Ok...wait, what was that "little" part about $3500? How on earth are we going to raise that in less than 2 weeks?

    Well, God is faithful and with some help from Bring Hope and SEVERAL other people we have never met in real life, we had raised $3520.00 in LESS than 1 week.

    God provided not for the adoption of another child... but for our adoption of "Drake"! To see God's love poured forth for this little boy half a world away, who has no idea any of us exist, is more powerful than any words can express. My God, who knows the number of hairs on little "Drake's" head, has seen fit to bring him into our family. We are so grateful for the friends we have met in a few short weeks who have taught us about arthrogryposis and encouraged us in our journey. Thank you for your willingness to reach out and provide hope and help for children with arthrogryposis....thank you for your willingness to provide hope for Drake!

    So, where are we now? We are officially committed to Drake, we are waiting for our apostilled docs to come back, and we are hoping to send our dossier for translation in about 2 weeks.
    We estimate that our adoption of our 2 precious sons will cost a total of $30,000.00. So far God has provided for our adoption so abundantly and we are only about $9600.00 short of being fully funded!!! We can't wait to see how He chooses to provide for the rest ;)

    To donate to Drake and Lance's adoption please go here. To find out how you can obtain help with your adoption of a child with arthrogryposis please leave a comment on this blog and we will be happy to assist you!

    Monday, February 4, 2013

    Meet our February Child: Drake!

    We still have a matching grant going on until February 15th for Anthony. (His 14th birthday is on the 15th.) All donations are doubled until then. Our February child (featured below) cannot receive funds at this time so please direct your monthly giving to Anthony if your heart leads you. He still needs over $1,000+ to deplete this grant. To donate go here. Thank you.

    Meet Drake!

    Drake is an almost-five year old boy living in Eastern Europe. We often can't mention the specific country name, even though that is not against any rules. It is just an extra precaution so that someone cannot Google the country name, find the child and possibly be offended that their country is not represented well. (We don't dress our orphans like THAT!!) We'll just say his birth country rhymes with Dulgaria. And we have friends who have adopted from this country who have good things to say.

    It's rare to see a description of a child to be so thorough. But to quote his listing: "[Drake is] now sitting up independently, pulling up onto his knees in the bed and is working hard to learn to get himself to a complete stand position. When placed against support, he can stand and hold on to something. He can get around independently in a walker and wheelchair. He is working with a physical therapist and learning to crawl. He drinks from a cup independently and eats from a spoon. He plays appropriately with toys and will mimic any action that he’s shown. He still prefers to use his left hand, but he is beginning to manipulate objects with his right hand as well. He enjoys playing board games with other children. He differentiates between familiar adults and strangers. He responds appropriately to praise and to correction. He repeats words that are said to him and is beginning to spontaneously talk. He understands what is said to him and follows verbal directions." His complete listing is found here.

    Keep in mind that Drake had a rough start in life and is delayed a bit. "Catching up" developmentally is expected as time goes by. 

    From some insider information we've received Drake is one loved, happy little boy. People want to see this little man in a family! And when an orphanage provides physical therapy and works one-on-one with a child, let's just say we all feel a little more hope for humanity. 

    So let's talk Drake. From an AMC prospective he's doing well. Before very recently we did not have an update on him and this post was more guess after guess on what we estimated he might be able to do. There are more pictures and videos that we received as recently as last month so some of our guesses were spot on, while others of our expectations were exceeded!  

    First off let us just point out that his diagnosis is listed as Freeman-Sholden syndrome (by which they mean Freeman-Shelden syndrome), which is a specific type of AMC discovered after genetic testing. Most of us at Bring Hope have met and spoken with Dr. Judith Hall, the top geneticist who specializes in arthrogryposis and all 400+ types. For one thing the dignosis of this type is hard to do as Freeman-Shelden is the most rare of the distal (mostly affects hands and feet) forms of AMC. Second of all, if the orphanage doctor in "Dulgaria" was able to correctly type this we would be very impressed. (We'd bake him/her a cake.) But to be on the safe side we would encourage a second opinion. His AMC may not be as severe, and after learning more about him... we all doubt it is.

    Secondly everything Drake is doing physically is right on target for a very independent, highly functional AMCer. We don't doubt he'll be walking one day. We don't doubt he'll be an independent adult one day. Heck we don't doubt he'll be president! But maybe there's a rule against that if you're not born here. Well he'll vote for the president one day at least. But only if he's adopted! And if you adopt him he may even vote for the party you like! 

    I really wanted to do this post on Drake because where he is located makes for easier travel and an easier process than the typical process that we just experienced adopting our son. Easy travel and a shortened process is just feeding my jealous flame over here. :) Adoption is hard. Travel is hard. Leaving other kids at home is hard. This would be less hard. Starting physical therapy from scratch is hard. Starting medical stuff on an adopted kid who has never had medical stuff done is hard. Drake would be less hard. Also he is available to just about anyone. You have a million kids? No problem! You are single? Sure! You are grandparents? Give those grandkids a tiny uncle! Seriously he just needs a family. No home manipulation, wheelchair ramp, special needs experience required. None. He just needs love. We'll hold your hand through the rest. Us AMC family members will take you in and make a place by the fire and help you do this. We'll tell stories and listen to yours. You can do this. 

    Since Drake cannot receive funds until he has a family in place, we will just continue to advocate for him. Want to join us? Just share this post (or his RR profile) on Facebook, in your blogs or on any social media site. Print it out and pass out flyers to people in your church (who are required to care about orphans and stuff), your family, neighbors and coworkers. Random people on the subway! Put up billboards! Produce a commercial!! Sky writing!!! 

    I'll just be sharing on Facebook because I'm way less motivated than you people. 

    Thursday, January 31, 2013

    What Happens If You Care A Whole Awful Lot

    When we started advocating for orphans with arthrogryposis in January 2012, we had no idea what to expect. We created a group on Facebook, Bringing Hope to 12 in 2012 and we believed we could make a difference. There were a lot of orphans with arthrogryposis multiplex congenita that needed to find forever families. All of our contributors are either moms of children with arthrogryposis or adults with arthrogryposis, so who better to advocate than us?

    In the past year, I have had the honor to be a part of a group that is teaching me with every post, every discussion.. I have learned so much about international adoptions--not only about the conditions these children are living in--but most important, the people who believed in a child they never met and said yes, you are mine. Many of our new AMC famiilies, I have only had the chance to meet online. But I am forever connected to them because of arthrogryposis, because of adoption, because they cared a whole awful lot./

    We will continue to advocate for a new child each month in 2013 and we cannot do it alone. We need your voices and your support. Sharing the stories of our children is just as important as putting money in their adoption funds.. We know it can get better and it all starts with a simple “share” or email with a link to a blog post. If you can financially support each featured child, any donation does make a difference./

    Anthony, our featured child for January, could really use someone to care a whole awful lot. Anthony is a 13-year year boy living in an Eastern European Institution. He needs parents, and he needs them fast! In Eastern Europe if he reaches the age of 16 he will become un-adoptable. Given that he has all extremity arthrogryposis his ability to become an independent adult in his society is very, very unlikely. He will likely be an some level of an institution forever. He doesn't deserve that, no child does. You can read more here.

    If you can’t make a donation, then “donate” a promise to share the blog post with your networks. We never know how the families will find their child.

    • Share on Facebook
    • Tweet to your followers
    • Post an update on LinkedIn
    • Repin our photos on Pinterest

    Monday, January 21, 2013

    Anthony has a matching grant!!

    Our focus child for January has ZERO dollars toward the cost of his adoption! 

    Lets change that! 

    Remember it will cost around $20,000 to complete the adoption process for Anthony. 

    I've had adoptive parents tell me that they were able to commit to their child because they knew a significant portion of the money it would cost to complete the paperwork had already been fundraised. 

    So lets help lessen the financial barrier to Anthony getting a committed family! 

    For every dollar donated between now and February 15th will be matched up to $1500 total!  

    So $1 becomes $2
    $5 becomes $10 
    $12 becomes $24 
    $50 becomes $100

    Every.Single.Dollar WILL help!! 

    He has waited for THIRTEEN YEARS 

    He Turns 14 on February 15th so lets get $3,000 into his account by that time! 

    Lets ensure he doesn't have to wait in 2014 too! 

    Tuesday, January 1, 2013

    Meet Anthony!

    The first child we are spotlighting for Bring Hope to 12 is a young man named Anthony! 

    Anthony is a 13-year year boy living in an Eastern European Institution. He needs parents, and he needs them fast! In Eastern Europe if he reaches the age of 16 he will become un-adoptable. Given that he has all extremity arthrogryposis his ability to become an independent adult in his society is very, very unlikely. He will likely be an some level of an institution forever. He doesn't deserve that, no child does. 

    This young-man has all kinds of great qualities! He is full of energy and is a ham. He can read and write. He follow directions. He loves chocolate with nuts, the colors yellow and brown, likes soccer and cars. He picks up english quickly. He has a huge smile and loves to laugh! 

    He has had some treatment for his arthrogryposis which included a year of serial casting on his legs and feet. He has been seen walking when he is in casts but otherwise utilizes a wheelchairs for mobility. He can self-propel in his wheelchair. 

    He is VERY anxious to be adopted. When Americans come to his orphanage to adopt other children he asks to be adopted and yet he continues to wait. He remains hopeful his family will find him but understandably is getting frustrated. 

    Here is a VIDEO of Anthony. 

    He turns 14 in February, which means he has just 24-months to adopted or he will remain institutionalized for life. An adoption from his country normally takes around 9-mons but could take longer. A family will need to commit to him in less than 15-mons to have enough time to complete the adoption and still have enough time to allow for delays in paperwork. 

    An international adoption will cost upwards of $20,000! Most people can afford to take care of another child and would willingly adopt but reality is they don't have $20,000 laying around. 

    Anthony needs our help...he needs your help! 

    Please consider donating to his adoption here and if your finances don't allow for that please just SHARE this blog post. Publicity on social media and the internet could lead to his family finding him and sharing is FREE and takes 30 seconds or less! 30 seconds of your time could change his entire life FOREVER! 

    If you're interested in adopting Anton please contact us or click the "contact us about this child" at the bottom of this page: http://www.eliproject.org/children/anthony/ 

    Adopting an older child with special needs can be scary but we know several families who have adopted much older children with arthrogryposis so if you're interested in adopting Anton and would like to connect with these families please let us know! 

    Here are more pictures: 

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