My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs.

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. )

There were eight crazy things going on in our lives last year.

1. It was vital for Laelia to get more therapy to maximize the surgery results. Every time we went to Children’s hospital it was an $80 visit. Our insurance had changed so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free OT and PT through their medical therapy unit. This meant I had to cut ties to our expert OT and PT to do it as they would not allow her to see them at all if we got into the program. It took some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one glance will tell you she does. I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but the nurse  said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild) was so bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.) Between our parking lot and our front door was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children, it was hard to work with the director. The teachers were wonderful, but the director was not. They kicked my daughter out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter could not walk and was hard on them. She finally put her hand on her hip, cocked her head and said to me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were going on (our lives felt like they were falling apart), they paled in comparison to what he was going through and what he faced.

~

Step into the New Year!

~

1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has other programs and services for low income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children. Despite the hardships to get into the MTU, it’s been a great experience and Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during Laelia’s November pin removal surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the needlework is beautiful.

But since this is all so new the implications of this new ability didn’t sink in right away. Last night they did.

The surgical site on Laelia’s left leg has a red mark on it so we took her to Rapid Care a few weeks ago and they said it was fine. But the right side is completely healed and the left side is still oozing and bright red so I dragged her to her pediatrician’s office last night. Long story short, it’s still fine. No infection. That’s not the point of the story. Here’s the point: When you take your child to the pediatrician they have to weigh them.

Laelia has had to use the infant scale at the doctor’s office her whole life. She’s terribly outgrown it as you can imagine and she’s at the age where it’s embarrassing to use. Even though she has been able to stand while leaning over something for a while, you can’t do that with a scale! You can’t even hold Mommy’s hand! You have to stand all by yourself without a walker or bar or crutches or anything.

So last night for the first time in her life, Laelia stood on a scale. By herself.

It’s such a little thing, but I’m blubbering over here. My baby can stand! *sobs*

Can you believe this?!!!!

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. ) But because she’s now at less than 40 degrees of flextion in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many) releases and then two eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got her hip pins out and now she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn 24/7 for a few weeks after that. There will be hard daily therapy in there too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again. Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away, Laelia tells a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream.

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. But after Laelia voiced her preference loud and clear we have decided not to give her sleepy juice for her next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. But without it Laelia may be terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So Laelia asked me in a very mature way not to have to do it again. She explained how brave she is now after the blood pressure ordeal. I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses. (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!

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.

I try never to get very religious (it’s bad for your skin or something), but since I’ve been thinking of these things, and since it’s my blog, I thought I’d just write whatever I wanted. So nany nany boo boo.

But, if you, like me (most of the time), don’t like this sort of thing, then please stop reading, grab some ice cream and watch some 30 Rock. I’ll join you in a minute.

At church a couple years ago I remember I had a young child ask me what happened to my daughter. Another adult stepped in before I could answer (probably intending to spare me from something) and said, “Because God made her this way.”

o_O

He did? God is that true? That’s it, God. You and I are taking this out back!

But the odd thing I found funny at the time was that this adult actually believed that! And I couldn’t help thinking that that can’t be right. Because if he made her this way then why are we trying so many surgeries to fix her? (“Thank you God for this wonderful gift of a little daughter. Now bless us as we begin to clean up your sloppy handiwork.”)

So what I found in the Bible is that it’s true that just like other kids, Laelia is fearfully and wonderfully made by God. (Olive Garden, flattery and a back rub also played a part in making her as I recall. ) Psalm 139 seems to indicate (if you can apply it to all people, and I think you can) that Laelia’s frame was known by God while she was in the womb; he saw her unformed body and knit her together, and the number of her days are written in his book.

And after all that wonder of creation she still ended up in a body that’s not cooperative. Huh.

From a church/biblical worldview there was a time when everything was perfect and then sin entered the world and messed everything up. Not only did it separate us from God, but it also introduced things like entropy into the world that never existed before. Now things get worse, rot, decay, mutate and deform. But people take that to mean sin causes disabilities directly–like somehow little unborn babies can do some personal sin that God punishes specifically? No. That application doesn’t seem to jive with the rest of the Bible. From what I’ve read, neither Lali nor I did anything wrong to cause her disability. (John 9:2-3) Sometimes bad things just happen because we live in a world affected by sin. (Luke 13:4)

So then as I kept reading I was super surprised to find God take the credit for creating people with differences/disabilities in Exodus 4:11! So even though anything less than perfect comes as a result of sin in the world, and Laelia’s body seems to be a bit further from the mark than the child who first asked me what was wrong with her, it’s not the end answer. “The world is a messed up place and messed up things happen” is not the end answer. Even “God allows bad things to happen” is not the end answer. Because God takes credit for people. And he cares about people. He doesn’t let you be mean to people he’s created with disabilities. (Lev. 19:14) He knows we’re stuck in the muck of sin and still, through grace, tends to us. And I can’t deny that he’s tended to my family.

So now I can be a crazy church lady too (yay?) and say things like, “God designed her this way!” And when anyone with half a brain raises an eyebrow I can add, “He made her gorgeous, spunky, witty, smart, beautiful, encouraging, determined, hard-working, friendly and funny. He also allowed her to have arthrogryposis. Good thing she’s his favorite or I’d have issues with this.”

Oh and I have to add that I’ve run into two faith healers (TWO!!) who have tried to tell me otherwise–that somehow we caused this. So during my research I ran into a Times Magazine interview with Joni Eareckson Tada, a lady who became paralyzed at the age of 17. She has this great story of her run-in with a faith healer. I’ll quote her because I loved this.

“This very earnest young man named David came up to me, knelt down by my wheelchair, and asked me, ‘Joni, are you sure there’s no unconfessed sin in your life? I just know that God wants to heal you.’ He was basically saying my faith wasn’t big enough or strong enough or righteous enough. I reminded him of the story in Luke where the four friends brought their paralyzed buddy to Jesus to be healed. But it was the faith of those friends — not the man’s own faith — that Jesus used as a channel for healing. Well, there you go, David, the pressure’s on you.”

So there you go. There are my “churchy” thoughts. 30 Rock time.

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!

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.

But what a shock when her legs slid right out!  For the first time in her life, my daughter has legs that are positioned correctly to fit in the shopping cart seat!  Thank you Father God! Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together.

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but her legs are still so splayed and outwardly rotated that her toes point away from each other and her knees go off in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”  Thanks Jessi!) 

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her knees now crown her legs instead of jutting out to either side, and her toes point up instead of away from each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice, gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too.

When we got there it was so cold! Too cold for this little California girl!  Lali had never seen snow before and asked me why it was wet and cold. She thought it would feel like pillows. :)

At the Ronald McDonald House we spent time with Sophie, Ben and their Mommy, Tammy! (The next day the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning we waited for our appointment with our friends. Here’s baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. )

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again. Each time a new layer of dead skin got gently massaged off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad after our three (in one day) airplane rides back home. It was because of the new, aggressive AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!  Compare the above picture of her lying on her side to this!  Amazing, right?!

So now that I’ve gone through the eye candy (aka pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip where I prayed about this specifically. It just made the whole trip seem surreal. Where were the fights? People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for, upgraded for free to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff, a wheelchair and a double stroller. 

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I were hungry but we had no cash for the cash-only cafeteria so they gave us food at no charge. We got lost, but ran into a security guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for gas for the rental car, but Thrifty Rental decided to waive the fee and cover the gas. It snowed, but we stayed on the road. The Ronald McDonald House doesn’t take reservations, but we were able to stay at the house we wanted that was closest to the hospital. Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!  Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I didn’t sleep more than about three hours in four days. So this was a hard trip. In fact, I got so sick the night before our appointment that I stopped up the toilet in our room to the point that we had to switch rooms!

And the whole while one special little girl refused to let me sleep; she was too jet lagged and excited. (She would not sleep the next night because of pain and discomfort.) I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”  Since then if I’m down or frustrated Laelia will ask me, “Mama? Are you sick and tired?” It breaks my heart.

I tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created Adam and Eve and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night.  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.) And how sin pushes God away (insert Laelia pushing me here) because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called ”the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time) doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays. These were the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty. And she is. 

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then my daughter would not have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it.