Archive for May, 2011

Laelia uses her power chair for the first time in our house!

Wednesday, May 25th, 2011

Laelia is thrilled with her new (*cough* five months old)  power chair! Grandma and Grandpa had been holding onto it for us and they brought it down for us on May 13th.  Laelia was excited that whole day and talked about it nonstop like it was Christmas Eve. :)

I can’t wait to figure out how to transport this thing! As soon as it can go with her in the car  then we can go more places! Like the zoo or the grocery store or the park or Disneyland! But right now we’re happy just watching her go up and down her ramp. She’s pretty happy and cute. :) Oh and there’s a turtle setting for slow and a bunny setting for fast. Guess who loves bunnies! :)

So far she has crashed into my new (*cough* used and cheap off Craigslist) dinning room table, the coffee table, the couch,  the entryway table and every wall. She has also taken  the closet doors in the hallway down and put a hole through the door to the den. Oh and good news, going off the wheelchair ramp does not tip the 250 lb chair, nor does it slow anyone down. In fact, to Mommy’s horror, it’s kinda fun. :-/

Here’s a video of the first time we ever put her in her chair in the house. Enjoy!

 

:)

 

 

You could win!

Wednesday, May 25th, 2011

Laelia and I have decided to fund-raise for baby Joel (see previous post) because he is so cute!  To  quote Laelia, “He’s a baby! Oooooooh baby!”  :)

So to help the cause Laelia wants to make a very special video for a  very special person!

Simply go here and donate to Joel’s account. For every $5 you donate I will enter your name into the drawing. (But you have to comment on this blog and tell me how many  chances you earned! Reece’s Rainbow doesn’t just let me know who donates. :)) Once  Joel makes it to $640 (which would be double the $320 he has now) then the contest will be over and we will pick the winner! (Well technically random.org will pick the winner.) Then Laelia will make a very special video for the winner.

It’s that easy! All donations are tax deductible.

Thanks for playing! And thanks for saving a child with arthrogryposis from a life without hope!

Baby Joel

Sunday, May 15th, 2011

This is baby “Joel.” He has arthrogryposis like some of the best people on this planet do. Below are copied and pasted articles and stories of the reality for those with arthrogryposis  in certain parts of the world. Donating a few dollars to Joel’s account by clicking on his picture will help save him from this fate by off-setting the cost of his adoption. He could be Laelia. He is so similar to her it’s scary. He haunts me. Please help me support him.

In you the orphan finds mercy.–Hosea 14:3

Never take advantage of any widow or orphan. If you do and they cry out to me, you can be sure that I will hear their cry.–Exodus 22:22-23

Around age four,  children with special needs (despite maybe  having no mental problems)  face mental institutions.

Here’s what they look like. (Warning, prepare your heart before clicking on this video link.)

Little has changed since that video above was made by the Today show.

And I just imagine Laelia here and it makes me hurt deep within.

Below are other stories.

“Lillian Horodysky, founder and Executive Director of DVOU commented on the alarming condition of orphanages in Ukraine, ‘There were rooms after rooms full of children, lying in their beds, just staring up at the ceiling. All that could be heard was the rustling of their covers, if they moved. It seems as though the thoughts in my own head sounded louder than a disabled orphans barely audible sigh.’ The conditions of most Ukrainian orphanages are deeply concerning. Most orphanages for children with special needs are located in remote areas of Ukraine[...] and  orphans’ chances of survival are dramatically reduced even further because of substandard medical care, childcare and little or no education.’”
(http://www.artukraine.com/uasupport/dvou.htm)

Because I rescued the poor who cried for help, and the fatherless who had none to assist him. —  Job 29:12

Learn to do good. Seek justice. Help the oppressed. Defend the cause of orphans. Fight for the rights of widows. –Isaiah 1:17

“Within two weeks of arriving in Ukraine, Nita went to her first orphanage, Veloska, where God broke her heart for the plight of the orphans. She discovered a system which is the same throughout the former Soviet Union. Children are housed in different facilities depending upon their mental and physical conditions. It is estimated that there are over 60,000 ‘orphans’ in Ukraine. The vast majority of these children have parents and have been placed in the orphanages[...] simply because they are handicapped. When the children reach the age of three to three and a half, they are evaluated by a panel of experts who determine whether these children are ‘normal’ or ‘retarded.’ Once a child is labeled as ‘retarded’ (or ‘imbecile’), they are sent to an orphanage for the mentally retarded where they will remain until they reach adulthood.” (http://www.godshiddentreasures.org/orphanmin.html)

I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me! –Matthew 25:40

“Working in Ukraine, he [Terry Hallman] discovered that the standards of care given to disabled children in many orphanages were extremely poor, and that children often stood little chance of surviving into their teens. Terry wrote an insightful and shocking article, ‘Death Camps for Children’, which explored and exposed the key reasons behind the issue, such as a lack of funding, limited medical knowledge and large-scale corruption.” (http://www.justmeans.com/reports/Ukraine–Death-Camps–For-Children/525.html)

Speak up for those who cannot speak for themselves; ensure justice for those being crushed. Yes, speak up for the poor and helpless, and see that they get justice. –Proverbs 31:8-9

“When we arrived at the orphanage we were met by older children without coats, they were begging us to give things to them and not to the directors. It is very hard to write about the rest of this part of the trip. I cannot give a step by step account because we were all in a state of shock. We spoke to the director about our program and he told us that he knows the children need more but he said, ‘I cannot ask my workers to do more, they work very hard, clearing the road,
shoveling snow, cleaning the floors and the children, they have not time, they must work very hard all day and then they must dig graves and bury children.’ What do you say to that? Still, the staff took us around to show us how it is. Words don’t come to mind, most of our team was crying and could not stop. Dark hallways, screaming, children clustered together in freezing rooms, some in strait-jackets, haunted looking crying, asking if they were good, asking for food. Water dripping from the dark ceilings, mold everywhere. We held children who were 10 and 13 years old in our arms like infants. One team member said later that she never knew that humans are like fish and will only grow to the size of their environment. One team member threw up outside. Children never leave their beds in some rooms. These children are ages 4-16. In other rooms they leave to go to a room with just a bench and nothing else in it. They hold each other -rocking one another. I have never seen such deprivation and our photographer said it best when he said it was a concentration camp for children. Sorry, this is such a hard part to write but I looked in the eyes of many children who are dying. Their tiny bones fit into the palm of my hands. Their skeleton faces begging for help. No one in our team has really slept since. We talk about it but just end up in tears. I promised the orphanage staff we would come back with a team of people to help them. They are counting on it. The director told one team member that 20 years ago he asked for help there and the soviet minister came and visited. The visiting soviet minister told the director, ‘why do you keep these animals alive? You can kill them, you know how to do it you are a doctor.’ He never sent any money or aid to the orphanage.” (http://eng.maidanua.org/node/581)

Do not withhold good from those who deserve it, when it is in your power to act. –Proverbs 3:27

Therefore, to one who knows the right thing to do and does not do it, to him it is sin. –James 4:17

“End of the Road. The children’s home at Kalinovka in rural Zaporozhye Oblast can scarcely be called a ‘home,’ and the children, 160 in number, ages 4-40, are by no means typical ‘children.’ For this facility in rural Ukraine is the end of the road, both literally and figuratively, for some of the oblast’s most severely impaired children–kids with neurological, cognitive, and other crippling disabilities. Alyosha, for example, age five, lacks hands and feet. But he is only one of many at Kalinovka needing care and affection. Between thirty and thirty-five children are confined 24/7 to beds in a ward that has until recently been off-limits to visitors. Permanently institutionalized, 80% of the children here seldom see moms, dads, or relatives. For the 100 or so children who can walk, there is little in the way of planned activities or learning. None of these children, so we were told, is ‘educable.’ Nothing could be further from the truth. Clothing is often shabby and dirty. A number of the girls have Down Syndrome; many boys here appear to have some degree of cerebral palsy or similar neurological impairment; others lack arms or legs; some appear autistic. In 2005 a child, Nadyusha, with a congenital brain hernia was sent to Kalinovka, probably to die; still untreated, she has managed to stay alive. There is no doctor in daily residence; a physician comes once a week. The bedfast children seldom, if ever, go outdoors. As a result of limited care and nutrition, the mortality rate at Kalinovka is said to be eight to ten annually.” (http://www.deti.zp.ua/eng/show_article.php?a_id=90002)

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you.–James 1:27

“And so it began.   The road to teaching Haven new things.   The road toward healing. The little angel was locked away in a room for the last two years of her life, isolated from everyone because orphanage staff were afraid to “catch” what she had if they touched her (autism, becoming non-verbal).   Life for Haven was about to change. It struck me this week–the change in Haven’s life has been nothing short of miraculous.   I have looked at my sweet little girl after being away from home for a while, and something has struck me over and over again. Haven has hope!   It’s not that I did not know it before, because I did, but this time it’s different. I see in Haven what every single child waiting deserves.   Hope! THERE IS NO HOPE FOR ANY CHILD IN AN ORPHANAGE! Nothing.   Zero.   Zip. Haven would absolutely have ended up in a mental institution for disabled adults. What kind of hope is that?   What kind of life is that for any human being? Adoption is their ONLY HOPE!   And in most countries, foreign adoption is their only hope.   There is a less than zero percent chance that either Haven, Hannah-Claire, Hailee or Harper would be adopted by a local family.   They have no value in their own country.   They have absolutely no worth in their society. They are are defined by their ‘special needs’ in their countries. Their only hope is for a foreign family to come and rescue them. Period. (http://www.nogreaterjoymom.com/2010_04_01_archive.html)

 

Proverbs 24:11-12.

11 Rescue those being led away to death;
hold back those staggering toward slaughter.
12 If you say, “But we knew nothing about this,”
does not he who weighs the heart perceive it?
Does not he who guards your life know it?
Will he not repay everyone according to what they have done?

 

And anyone who welcomes a little child like this on my behalf is welcoming me.–Matthew 18:5

 

For more facts click here.

AMC Conference

Friday, May 13th, 2011

I’m thrilled to report that we are going to the AMC conference in July! Thanks to our friends and family, both my and Laelia’s airline tickets are paid in full! THANK YOU SO MUCH!!!

I can’t wait! There are so many people in our AMC family  who  I want to meet in person! And I want Laelia to see her friends and their abilities! It helps her so much!  Thanks Sohpie and Ryan (well,  really your mommies) for sending your videos to Laelia! You guys are a big encouragement to  her. She does try to do the things you show her and she is getting stronger all the time! And thanks Miss Resa for the DVD  of you doing everyday things.  Laelia is now trying to get on the couch by arching her back too. She’s still little so it will take some time, but she tries hard! She would also like to know why you  get to use the stove when she can’t. I don’t think she sees many adults with AMC so she assumes you must be big for three! ;)  I can’t wait to meet more grown-ups with AMC!!!

AMC Conference in Kansas City, here we come! Can’t wait for July!

July

Monday, May 2nd, 2011

(To help Laelia and her Mommy  get to the AMC Conference, please go here.)

So much has happened in the  last few days! For one thing our summer plans are now officially  crazytown.  :) We decided, after a ton of encouragement, to attend the AMC Conference July 6th-10th! (This comes after announcing that we wouldn’t be going. What can we say, we thought it was a crazy plan. Mostly because IT IS. :)  But we’re in!) Then ten days  after  Mommy and Little Girl get back from the conference, a parent swap takes place,  and then  Daddy and Little Girl  are  off to Shriners in Philadelphia!  (For a check up,  x-rays,  AFO adjustments  and to schedule Laelia’s  pin removal  surgery for later in the year.)  And while they’re in Philly,  Mommy (who will have just become an aunt)  will be traveling to Northern California to see her family, including her  sister and  new baby nephew who  is due at the end of June!

This  July is going to be BUSY!  At least we hope so. If it all works out. I hope I hope! :)

Those involved with getting our family to and from medical  treatment always humble me. The Ronald McDonald House in Camden, New Jersey,  has us on a waiting list already. Also it looks like  we will  have flights  through Frontier again. (They have given us our last few complimentary flights, and were willing to help  again even though their program has changed!)  It goes without saying that without these wonderful programs we would be forced to, I don’t know,  move to Philadelphia?  Hitchhike and live off the streets? Go without care for our child? Get second-rate surgeries from unqualified doctors? Be in an insane amount of debt? Probably. I am beyond grateful.

But back before anything with our Philly trip was worked out, and while I was standing in my kitchen just  staring  at my appointment letter from Shriners  and worrying about the future (as I always do with medical trips), I can guarentee you that the LAST thing  I thought would  work out  would be TWO arthrogryposis-related trips in twenty days! But then our wonderful friend,  Kiersten, asked me to reconsider going to the AMC Conference,  and offered to let  us  share (aka bum)  her hotel room and rental car! (Despite the fact that last time she shared her hotel room  with us,  during the Arthrogryposis Clinic in Seattle,  Laelia kept everyone up all night! I definitely won’t remind  Kiersten of that. ;)) It was such a gracious offer that it sent Charley and I back to serious talks concerning the conference, and finally to a decision to go. And after that decision leaked  on  Facebook (that was all me :)), we were blessed by so many  people writing us and telling us how excited they are that we’re coming! I love the people in our lives!

Then  several people going to  the same conference  told  us about their success with Gofundme, which is a website where people can support trips to medical conferences, and just about anything else. So after more discussion, we decided  to set that up. (See shameful begging for $$ above.)

Oh and the conference is not just a meet-and-greet, but a life-changing experience. There are break out sessions that  cover everything from home modification to hippotherapy. (I’m hoping to  get at least ten new ideas for physical therapy alone!)  There are speakers who have already sent me their books or blogs, and other coordinators or board members of AMCSI  who have  already encouraged us so much  that I can’t wait to meet them in person! Plus of course our  doctor from Philadephia and other wonderful medical professionals will be there donating their time! So much all in one place!

AMC families  are an isolated group. Arthrogryposis is such a rare thing that we are scattered all over the place.  All previous AMC  conferences have been in Florida, Pennselvania, Ohio, Texas and Chicago, so it doesn’t look likely  that one will magically pop up in San Diego any time soon.  And I’ve wanted  to go to one of these amazing conferences from the time Laelia was born, but we just couldn’t work it out. So I’m super excited! It will be such a relief to meet a group of people who have been there. Who get it. They get the  joint contractures and splints and frustrations. They cheer when  their  kid wipes her nose  on the towels, trips his sister in the hall  or steals candy off the  table. Why? Because it took specialized  motor function  that doctors told  them  they may never  have to accomplished those bratty behaviors! I want to be in the company of parents who get the fact that  “normal” is flying for surgeries and running over the cat’s tail with a power wheelchair and fighting your school to get them to treat your kid just  like the other kids. I can’t wait to  be normal with these folks. And I can’t wait for Laelia to meet so many people–kids and adults–just like her!

So thanks for supporting us with your  encouragement! I really appreciate it! I feel completely overwhelmed by so much love!