Wanna know how I got up here? Watch the videos below and see!

I’m just going to post them all. You asked for it!

Whew! What a work out. I’m worn out.

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!

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.

Want to see how one little girl earned all these cheese crackers? Just click on the picture above to see what she did!

And click here to see her attempt of that same feat the day before.

And below is a video of Laelia turning on the lights all by herself! (If anyone has a better idea of how to set this up let me know. I’m using a wand for window shades and duct tape. Sometimes the weight of it all turns the light off.)

And lastly, here is my little girl and her new found story telling ability.

Yay videos!

“Now I can has some cake!”

Standing in front of our front door a year and a half after starting this process.

Laelia’s new room. (Before the walls were cleaned and the carpet ripped out.)

Our new housemate. He’s as big as a pen!

The stair. Click on this picture to go see the video.

So we finally found our home! We move in next week, but are starting the major cleaning/fixing projects now. The above picture shows Laelia sitting on the only major stair in the whole place! And if you clicked on the picture and saw the video then you saw that she can easily mount it! Remember when that was a LOT harder? 

What this means for Laelia is huge! National Seating can finally deliver her power chair! And the kind of independence and joy this will bring her will be immeasurable! Laelia has been looking forward to this chair since we first got it months ago. The only obstacle was moving into a single story place since our apartment complex had a several too many stairs. We are planning on building a small ramp on the left side of the stair just for her wheelchair, but that doesn’t stop us from bringing it home.

We have been completely blessed by wonderful friends and strangers alike in the last two days. It became clear by the size of the mess that it would be VERY difficult to finish cleaning and tearing out carpet before we moved in next week. I mentioned this to Brenda, who had a group of ladies over (she is my model for hospitality), and within 24 hours her husband, David the Hurricane of Service (as my husband refers to him), had a group of volunteers over ripping out carpet!  Laelia LOVED having people over and mentioned the names of the people she remembered (Mike and Brenda mostly) again and again. She also went around telling the crew to be quiet. Ah the three-year old princess.

David works at Fellowship of San Diego, a church down the road from our apartment who has left us speechless more than once. They barely knew us before they were bringing meals and visitors after Laelia was born. We have some great friends from there who we adore! Well it happened that a group of people from California Baptist University were in town for the weekend doing service projects through Fellowship. So Saturday morning around ten college students in work clothes came to scrub walls and rip out carpet padding! They were here almost three hours and did more work in that time than Charley and I could have done in the next week! It was amazing!!!

The living room (and stair) after demo.

Laelia “helping.”

Laelia LOVED having the team over. She sang them songs and showed off her new standing ability. She also followed a couple girls, Ashley and Raquel, around very closely just watching them work. (Once again like the little princess she is.) She drove around in her little pink caster cart that my dad had made for her (the wheelchair substitute for shorter distances) going back and forth to all the rooms to see what was going on. I think she was super bummed that they weren’t all moving in with us.

Our hearts are so full of thanks I can’t even describe it! And we appreciate those who have gone out of their way to help us. Thank you so so so much!

It goes without saying that we saved not only time but also money because of the abundant generosity of these friends and strangers. We decided to give back a bit so we donated some of that saved money to a little boy with Laelia’s condition facing some bad circumstances in an orphanage in his home country.

Click on the link to donate to baby Joel!

We also donated some of the saved money to Reece’s Rainbow, a wonderful organization helping people adopt special needs kids from countries where orphaned special needs children go to mental institutions where life is awful. (And “awful” is too mild a word.) Laelia, had she been born there, would be a year away from facing the mental institution, despite her intelligence and beauty. Baby Joel is around four months old and it takes around seven months to adopt from his home country in the Ukraine. If adopted soon he would be around a year old and still very viable for serial casting, surgery and splinting, as well as English learning! I love his little face, it haunts me, and I hope he finds a family soon. Donating to his personal account helps a great deal in that it catches the eyes of potential parents.  Laelia has three friends with arthrogryposis who have been adopted through Reece’s Rainbow. It’s a great program! (You all know you want a mini Laelia. He’s so cute!)

And if any AMC families need to come to San Diego for Rady Children’s Hosptial or any of the many services available down here, we’d love to have you over! Please let us know! Right now we even have one working, yet gross bathroom! (Oooooh tempting.) We love meeting new AMC families and Laelia loves it too! Or if you’re thinking of adopting a kid with arthrogryposis, come meet our Laelia!

Again, thanks to all who helped us and continue to help us. Thanks for the borrowed tools and cleaning supplies and painters. Thanks for cleaning walls and ripping out the little boards with nails in them. Thanks for helping us remove all the doors. Thanks for the prayers and words of encouragement. We feel so loved!

Gearing up with knee immobilizers and vest!

Her PT through CCS’ Medical Therapy Unit is Alicia (on the right) and the PT assistant, Megan (doing the case study on Laelia’s vest there), is on the left!

Jerry the Giraffe is sporting a little modified immobilizer too! Love it!

Standing! Click on the picture above for the video!

At home doing standing exercises without the knee immobilizers or vest.

Leaning this much on the table is cheating!!!

What in the world? How’d you do that?!!

I didn’t hear any complaining during standing so I looked over to see her like this! (She’s not allowed to watch cartoons unless she’s weight bearing. And she’s not weight bearing in the least in this picture.) Clever little cheater!

Love my kid! Her abilities get more amazing everyday!

She just did it! I was talking to Charley about something, I forget what, and looked over and she did it. And we both kinda looked at her like stupid people and said, “Good job,” in an automatic way. It was really weak. We didn’t know what we were seeing. Then the squealing happened (okay that was me, not Charley) and the breathless rambling and the tears. Then we calmed down a bit and I got it on video. Once she did it one time, she could do it over and over! It looks so easy for her, but this has NEVER happened before!

In fact more than one doctor either directly said or strongly implied that this would never happen!

The day before we had watched YouTube videos of kids with arthrogryposis walking. (Bonnie is super amazing for one. She even was a flower girl in a wedding and walked down the aisle in her walker that barely contained that pretty poofy dress.) (That’s why our kids are on YouTube, people!) After all the videos Laelia expressed an interest so we got out her knee immobilizers and tried “walking” with me holding up her body weight. It was… discouraging. Then today she stands without the immobilizers (which is hard) and without prompting! In fact we weren’t even ready for her to be amazing! We just stared at her dumbly.

So tonight she stood by herself! All by herself! For the first time ever!!! And seriously for the first time in my life I’m thinking, I’m just for real thinking, “My gosh, she could walk one day.” And I’m out of breath. And I can’t see because of the tears in my eyes.

I know we ask for a lot with her, but just thank you God for giving us this one thing.

Here are three videos (embedded) that show how impressive Laelia is. She has been through a lot lately, but still does amazing things despite it all.

One of Laelia’s physical therapy exercises is when she leans forward on her red ball to put weight through her feet to stretch them. Well I think she wanted to show off tonight because she did this!

Laelia is getting pretty good at memorizing stuff so we’ve started repeating stuff at night to see if she’ll remember it. She memorized Genesis 1:1 and John 3:16 for fun. Next she’s learning knock knock jokes. It’s pretty funny.

Laelia can ride a horse! Okay well maybe not a real horse. (Phong took this one if you’re wondering who the voice belongs to.)

For the first time in her entire life, Laelia crawls on all fours!!!! (Embedded videos below.)

This is super impressive if you consider that four weeks ago Laelia couldn’t even get up on all fours by herself. On January 7th Doctor Harold van Bosse told me I needed to increase the physical therapy Laelia was getting to at least two times a week with a professional to maximize her potential. Well that didn’t work out. Or at least it hasn’t yet. It’s been five weeks! We’re still waiting on CCS and I have yet to do one single PT appointment with them. (Although we have done the initial evaluation. But like a bad first date, they never called after that.) (Oh and they didn’t even give us an OT eval, nor has anyone called me to rectify that!) So we’ve gotten by with private PT so far: two visits in our home thanks to a gift from friends, and two official visits plus one evaluation at Children’s Hospital. But despite what little services we’ve wrangled professionally, unprofessionally we’ve done novice PT at home EVERY day. We change up the routine, but she does weight bearing on her knees and push ups every day. Eventually she just figured out that she could combine those two for crawling. She crawled for the very first time on Valentine’s Day! YESTERDAY! And when I say the very first time, I mean the very first time. In her life. Ever.

Did I mention we have an amazing support group? Both on amcsupport.org and on Facebook. And one mom friend (who I didn’t meet on either website, but she found me on this blog) especially encourages me by sending videos of her son, Ryan, who is doing amazing! Laelia saw a video of Ryan crawling and it put a bug in her bonnet, as my grandma would say, to do it herself a couple weeks later. This is the same mom who dragged me to Seattle’s AMC clinic and encouraged us to start knee weight bearing because of how critical it was. (Thanks Kiersten!) Well it was hard to do anything with those wide knees when Laelia’s legs were so abducted, but I could prop her up in my lap or prop her up on the carpet until her legs slid slowly apart and she face planted.  But after her osteotomies (aka miracle surgery) it works great!

Here’s a video of her knee weight bearing in the past. She couldn’t do it solo using the table like she can now because of the position of her legs so she had to stay in my lap.

I also read Arthrogryposis: A Text Atlas that’s available online for parents as well as medical professionals. Starting on page 89 there is PT advice for babies with AMC, and then on page 106 or 107 I started to get some ideas for toddlers. I recognized so many techniques that our PTs have used in the past with Laelia. (Which is amazing considering that I doubt they have read this discontinued medical textbook.) God was directing some serious therapy when I thought we were going no where because of how slow the progress was!

So it was the best Valentine’s Day! And I’m so proud of my little one! 

She is telling me that she wants to add that she did another first on Valentine’s Day. She ate a heart-shaped sucker all by herself too. It was her very first lolli pop. Haha! She is so full of surprises. I’m so happy to be her mommy!

In closing, here’s another video of Laelia first learning how to do this crawling thing. So great! I can’t get enough!