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.

Friday, September 30, 2011

Two Little Ones Available Through Holt International

There are two little kids with arthrogryposis available through Holt International.

The first is a little two-year old girl with what looks to me like amyoplasia, the most common form of arthrogryposis. She's affected in all four of her limbs. Apparently her family was not able to care for her and she was left in hospital care for over a year. Now she's a bit delayed in language, but can catch up once in a family environment. Her legs are in a good position for walking since they have the straight-leg contractures instead of the bent-leg contractures. She is said to be always smiling and always in a good mood. Click here to see two pictures and a short bio. (Child believed to be in Thailand. Unconfirmed.)

The second is a little five-year old boy with arthrogryposis affecting just his lower extremities (hips, legs and feet). The good news is that he received Ponseti casting for his club feet which is the best method. His first surgery was when he was six months old (probably the tendon release following casting?), and according to his bio he's had several surgeries. He is very advanced in his self-care including feeding himself, changing his clothes and going potty. Plus he is even walking a bit! Click here to see his bio. (Child in China.)

Sunday, September 25, 2011

Anastasia - More Information!

The following paragraph was copied and pasted from Anastasia's RR page.

From one of our adoptive families who met her in September 2011: "The great news is that she does have rotation in her shoulders and some in her hips and also they say she does NOT have hydrocephalus! Her heart condition is basically that she's not active enough – her heart-rate isn't stimulated often. She had a brain scan that showed she is normal except for enlarged ventricles in the brain, which they did not feel should affect the function of her brain. She is very weak, though. She cannot sit on her own and they said she could hold her head up but when I held her her poor little neck could hardly stay up (I'm sure that would change with some p/t). They handed her right to my husband – a big guy – which frightened her, poor little Anastasia! They told us she liked music so I took her and sang to her and she calmed a bit but then still wanted her nanny. I can't tell you how much we truly WANTED so badly to take her home with us! She is just precious! But she has never been out of that room and will really need a family who is experienced with institutionalization challenges, and to help Anastasia LIKE the world around her!"

The great news you can take away from this report is that her brain is so much better off than her scary and vague diagnosis of "Other Specified Disorder of the Brain" would lead you to believe! No hydrocephalus, no permanent brain damage and no signs of FAS! This little one's biggest issue is being in an institution! Being in a loving family would eliminate many of her current challenges! What excellent news!

The hard part will be initial bonding and bringing her home. She'll need at least one parent who can be with her constantly at first while she learns to trust her new situation and slowly explore her world. Most Home Studies (the first step in adoption) will offer or require classes on helping children from institutionalized settings. There is much hope for Anastasia!

As far as her arthrogryposis, the weakness sounds like par for the course, as most kids with AMC have muscle weakness. Anastasia has never had any intervention that we know of so she'll be starting from the beginning. Of course she's only a little over two years old and there is still time for intervention to have a huge impact. Her muscles can be strengthened, and often naturally are throughout a normal day once she's removed from a crib in an institution setting. Remember kids in institutions do not have toys to play with or everyday stimulus that other children receive. I'd love to see this girl with a ball! A little time in a loving home with one ball will be what her core muscles need to hold that head up high!

Based on this new information there is no reason to believe that Anastasia would not one day be independent in her daily activities with good physical therapy and a loving home. If her shoulders are not externally rotated (if I'm reading that right) then physical and occupational therapy on her upper body will also be easier, and her range of motion may be greater. I hope a family finds her soon!

Sunday, September 18, 2011

Update on Anastasia

Anastasia has been re-listed for adoption. The family that had committed to her found out only a few days later that their son is going to have more special needs than they originally thought. So after a heart-wrenching decision, Anastasia has been put back up for adoption. And Reece's Rainbow has moved her picture up closer to the top of the listing so interested families are more likely to see her. She also has quite a chunk of change in her fund due to the interest! You can donate towards her adoption by clicking this link: Anastasia.

From the family: "Please pray and advocate for precious little Anastasia - I have a lot to write about her and I hope her family will come soon as there is so much hope for her!"

We look forward to learning more about Anastasia since any new information about these kids always comes from other parents adopting out of these orphanages! Stay tuned!

Friday, September 16, 2011

Henry's HOME!

Henry and his Family arrived in the states last week!

Go see the picture of Henry w/ his Momma and his siblings: http://bringinghenryhome.blogspot.com/2011/09/home.html

Wednesday, September 14, 2011

Anastasia Has a Family!!!

This little love waited a long time for a family! The Center family committed to a little boy named "Wallace" (soon to be Zephaniah), but Anastasia, who was in Wallace's orphanage, felt like she belonged in their family too. They asked parents (who gushed) and Dr. van Bosse (who shared his vast knowledge) about arthrogryposis, and then decided to commit to her too! Right now the family is in country! Her mom says, "We meet her in 2 days - we hope to be home with her in a few weeks!" Exciting news!
They need our help! Please go here to donate to Anastasia's (and Wallace's) adoption. Every penny counts!
And click here to visit the Center family's blog.

Friday, September 9, 2011

New picture of Sandra

A new picture of Sandra and information has been posted!!

DOB: 2006
Diagnosis: Arthrogryposis

At birth, Sandra’s arms were in abduction, internal rotation with fixed flexion in the wrist joints. Her legs were in abduction – fixed in the coxofemoral joints, flexion of the knee joints and various situations of the legs. The Achilles tendons of both legs were elongated in 2009. She had one other surgery in 2010. She has been under the continued care of an orthopedic doctor.

This description and the picture leads me to believe she has the classic form of arthrogryposis, called amyoplasia, which means "generalized lack of muscle development" It sounds like and looks like her clubfeet have been corrected with casting and/ or surgery (but they may require more treatment once she's home) 

Sandra can sit with support and sit up on her knees independently. She crawls in her own adaptive way. She can stand up with support and move in a walker. She uses her hands like “tongs”, by crossing her wrists. She is able to pick up toys and other objects in this way. She can move all of her fingers simultaneously.

It sounds like her potential for independent ambulation is huge considering that w/ very little treatment she is already knee standing, crawling and stand w/ assistance! The way they describe how she uses her hands is very typical for kids w/ amyoplasia. Splinting, stretching and surgery will likely improve the positioning of her arms enabling her to be more independent. 

Sandra can talk and is described as “very communicative and inquisitive”. She is cognitively normal, and she understands everything that is said to her. She easily makes contact with strangers and is attached to those who care for her. She is the leader in her group.   

Could she be your daughter?

Monday, September 5, 2011

Meet Timothy!

Look at this adorable little guy!! 

 He has arthrogryposis in all limbs but only his feet are affected in his legs and he has limited range of motion in his arms.

Although he has a diagnosis of arthrogryposis he is a VERY independent six-year old.

He is from China.

If you're interested in reading more about Timothy or inquiring about adopting him please click here: http://www.anorphanswish.org/whos-who-wednesday-timothy-waiting-for-a-family