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, 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.