Archive for August, 2011

Impossible! My baby can walk!

Wednesday, August 31st, 2011
“To God be the glory, great things he has done!” -Fanny Crosby

Tonight my baby took her first steps.

My baby can walk!

My baby can walk!

My baby can walk!

“Nothing is impossible, the word itself says, ‘I’m possible!’” -Audrey Hepburn

Who knew that August 31st, 2011 would be the day the impossible happened! The day we’ve worked towards for years. After ten thousand efforts, a million stretches and hundreds of days in the hospital it finally happened.

I’m in awe! What an undeserved gift!

Laelia is such a gift. One that keeps on giving. A star that keeps on shining.

James 1:17 says, “Every good and perfect gift is from above, coming down from the Father of the
heavenly lights, who does not change like shifting shadows.”

Apparently I’m feeling poetic! :) But seriously I’m so thankful to God who does amazing things!

Here is a video of her very first steps. I am barely touching her and not helping at all! You are literally seeing her very first steps EVER. Because my husband happened to be home and grabbed the camera, you’re experiencing this with us AS IT HAPPENS!!!

 

(As you can tell, she’s thrilled with the whole process. ;))

And here’s another video  a bit  later. Note the improvement in ONE HALF HOUR of work! She will only get faster and better from here on out!

We have a long trip to Philadelphia Shriners coming up: October 23rd to November 10th. This involves intense daily  outpatient physical therapy starting Monday morning (the 24th) culminating in a surgery to remove the pins in her legs on November 8th. Then  with the help of heavy pain meds  we take three planes back to California on November 10th.

For the first time in weeks I’m ready for this trip. :)

Thank you all for praying! Thank you for the phone calls! Thank you for the emails and facebook messages! Thanks for following our journey! Now let’s celebrate! You’re all invited to a walking party! We’re thinking September 24th or October 1st since the next few weeks are so busy for so many people. If you need more info about the party please email me (Alexis) at recordsky (at) gmail.

You’re part of this journey! Let’s party! Allow us to say thank you for all your prayers and support!

We’re happy. Really really happy! :)

 

Help Joel

Wednesday, August 24th, 2011

Baby Joel doesn’t have a mommy. He’s a little baby boy who is ten months old. He desperately needs rescue. Desperately. Look at him! He’s little and helpless.

I wanted to make him mine. I have asked my husband countless times if we can rescue him. My husband doesn’t see it ever happening.  It’s too much. We never wanted to adopt before.  My husband is supportive of  fund raising efforts,  but we’re not prepared to bring him home.  I’ve lost sleep over him and shed lots of tears over him, but I can’t save him.

Please consider Joel for your family. Please share his picture with a family considering adoption.

I emailed RR about Joel and they told me there has been no inquiries about Joel “in quite some time.” No interest. It struck me as impossible because I think about him all the time. He’s my little male version of Laelia, trapped in an orphanage. And he qualifies, based solely on his physical disability, for a mental institution. And these mental institutions are torture. If I weren’t so dang emotional and could mentally pull Laelia’s face off of this little boy when I think about him, then I would probably be a better advocate for him. But I’m not.

He’s “unadoptable.” There you go. I won’t downplay it. He’s got physical issues. He’ll need physical therapy. I think maybe a surgery could really help him. So would  serial casting. He’ll need splints at night.

His convulsive disorder could be nothing or it could be a terrible nightmare. It could be something he outgrows or something he would need daily medication for. It could be something just neglect and abuse has caused.  It could have caused him damage.  I don’t know.  And no one will know until he’s in a loving home. Because frankly no one cares.

But I do know that he is guarenteed 100% to greatly improve in a loving home.

The plight of Ukrainian orphans is well known. Kids with special needs are transferred out of baby houses/orphanages as little as three years old (Laelia’s age). They are sent to institutions where they don’t live long. A lot of kids die 18 to 24 months after arriving.

Watch this video all the way to the end. Notice the children who died at the end. Notice all the ones with arthrogryposis like Joel.

The system you would be rescuing him from will be heart breaking. People won’t understand why you want a broken child. The workers who are keeping  Joel alive may care for him, but they are completely overworked. And he is hard on them. And he can’t feed himself. And when they make their way down the line of 30+ children during mealtimes, Joel might get missed. He may get his diaper changed once or twice a day.

Oh yeah and it will cost you. Joel won’t be considered fully human by his country, but his ransom will cost you.

And if he’s not saved soon…

“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.” –Ukraine: Death Camps, for Children (http://eng.maidanua.org/node/581)

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?

Help me advocate for this little guy. Share his picture! Share his link on Facebook! (http://reecesrainbow.org/joel2501) Share his story! Share and show and tell and speak up! His mom is already in love with him, she just doesn’t know him yet! Help me find her. Please.

 

 

Taking Credit

Tuesday, August 23rd, 2011

You’re gonna love this! Laelia’s new saying is: “I can open automatic doors… with my mind!”

It’s pretty hilarious, especially when I’m  about to push her through an automatic door and she goes, “Wait for the magic… waaaaaaaaait for it… waaaaaaaaait for it… waaaaTADA!!!” :)

Sometimes I feel like taking credit for Laelia’s accomplishments the same way. We do physical  therapy and stretches with her daily (all the time!) and it’s just nice to see some payoff.  I mean, my husband and I literally high-fived after Laelia started knee-walking, and then we strutted around the house for days like, “Welp, we did it. Time to open our own clinic.”  :)   But then we see  other kids who don’t get PT or stretches beyond what their therapist does for them once a week (or twice a month)  in a 30 minute session, and those kids have more gains than we do. Or weeks will go by and Laelia will not do anything; or worse, she’ll stop doing something she once  did! Then we’re all bummed again.

I’m making this sound like a roller coaster of emotion, but really it’s like anything else in the world–normal everyday life. Normal for us anyway. Like when my mom used to teach me a math concept and then I’d forget it the next week, then remember it wrong, then have to re-learn it, then do really well on that section of the math test and forget all the other sections and get a D-. All the while my jerk boyfriend (now husband) excelled at math without trying. (Jerk.) It feels like that. :)  But the trick is not to take credit for your child’s A+ work, because then you have to take credit for the D- work too. Really  a large part of this is  up to Laelia.

But she is three after all. I have seen that child struggle so hard during PT  to get on all fours one minute, and then turn around and pretend to be a doggie on all fours (with ease) the next minute. It’s all a matter of motivation and endurance, which  are hard concepts for a little kid who won’t see the benefits of all this hard  work for months or years.  And whereas knowing advanced math  is  just never  going to be needed in my life (I married a guy for that…), walking and standing  are so useful for me! And when the goal  is ambulation, well, I’m hard pressed to leave that up to my three year old doggie. :)

So I work her, all the time. And I get a swelled head when our PT  can tell we work with her at home because of how she’s  improving, or when our  OT at Children’s Hospital says we’re a model family for stretching at home. Oh and can  we  sign this paper so  they can use  Laelia’s image in presentations  for training  other therapists? Sure! Yay us!

Then my  daughter learns to remove her splints at night and we lose months of work. (Bad doggie.)

But this week isn’t one of those weeks. This week is a good week–a  week of swelled heads. For the last nine days we’ve gotten to take credit in the medical world  for something,  that in reality, just… happened.

Sometimes Laelia does something that surprises even her. Sometimes it feels like a total gift we didn’t deserve and weren’t even sure her little amyoplastic limbs could handle.

On August 15th, 2011, Laelia walked on her knees using a push cart despite  the fact that five big time pediatric orthopedic doctors told us that  she  would most likely never  ever do that. (Not that children with arthrogryposis, even the amyoplasia type, can’t knee-walk, but our kid was the weakest of the weak. And they saw she was missing huge chucks of muscle mass and could not move her leg even a centimeter at the time of evaluation. So they did what any well-reasoned  doctors would do: they gave us wheelchair options and pity smiles.) Five days after  this  huge accomplishment  I was reading Acts  3 where  Peter and John  healed the “lame man” who couldn’t walk. The man  had his  physical disabilities from the womb (vs. 2) just like Laelia. He stood up and walked for the first time after this encounter when he was over forty years old (well past the time people give up on a person).  I already knew this story, but for the first time I could feel a bit of the emotions going on in the crowd. (“All the people saw him walking!” Acts  3:9) This  crowd knew this guy, and  had seen him everyday. They were amazed, but Peter says to the lot of ‘em, “Why do you marvel at this or look at us like we did this through our own power (or hours of therapy?)… Jesus’ name, through faith in his name, has made this man strong.”

Despite how mad I am at those hope-sucking orthopedic doctors, they  weren’t wrong. Thankfully they weren’t right either. ;)

Sometimes it really is just a gift. We don’t deserve it, but we hope Jesus gets credit where he’s owed it. I don’t know how all this  works, but I want to mold my life like Jesus’  commands in the Bible.  And that includes hard work, prayer, encouragement, “turning the other cheek,” commitment, honesty, trust, thinking of others and having faith in God when he does what he’s gonna do.  And when those things work out for us then I want Jesus to get the credit for that. And when good  things just happen simply because other people have been asking God for this on our behalf, then I want God to get the  credit for that too.  If I call myself a Christian, literally meaning I have decided to make Jesus Christ  my leader, then I  don’t want to ruin his reputation (or “his name,” what he stands for, who he is) by falling short in these areas, but instead I want to promote faith in  him. That’s our way of saying, “This works. This is real.” And  the best part is that if Laelia makes no gains, there’s still hope.

Well I got side-tracked a bit, but all I wanted to say was that  I didn’t  invent the radar used to detect  when I’m  about to walk through an automatic door, but I intend to do my part and walk through it.

Um, and my daughter is magic. :)

KNEE WALKING!!!

Monday, August 15th, 2011

Laelia can now knee walk!!! She took her first steps (on her knees) on 8/15/11!!!

So amazing!!!

I had doctors tell me when she was born that she would never walk. We fired them!

Now we fly to Philadelphia for the best doctor: Dr. van Bosse!!!

Laelia can knee walk!!!

They said NEVER! Ooooooooooh!! They gave up on a baby!! Grrrrrrrr! She’s going to dance on their desks one day. DANCE I SAY!

This demands a celebration so we’re going to have a party! Details pending. Everyone’s invited!

Here are four videos because I went a bit video crazy. (I’m crying in the background for some of these. Please ignore. :’))

Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!

 

 

Laelia likes to walk!

 

Laelia goes boom. :)

 

We took this one for Daddy. :)

 

Laelia sets a goal and then walks towards it! Love this!!!

Laelia’s New Kid Walk!

Sunday, August 7th, 2011

So sometimes my daughter just amazes me. Just knocks me back! Two weeks ago it was while driving home from physical and occupational therapy. I  told her that  she earned three animal crackers for her good behavior. (Three because she’s three years old.)  She said she earned five. (Five because her imaginary friend is five and he was good too.) We went back and forth a bit–three, five, three, five–and finally Laelia says, “How about three AND five! Then I get eight!” And I said, “No, when Mama says three… wait, did you just do math?!” The way I said it must have been funny because Laelia fell into a fit of giggles. And even though I was driving on the freeway at the time, I just had to call my husband at work to tell him. :)

But smarts aside (because I could go on and on), Laelia’s physical abilities are really taking off too! On Thursday (August 4th) I had the hardest day. It consisted of getting up at 5:00 a.m. to go to work, getting off work and picking Laelia up from school, doing occupational therapy with Karly, then doing physical therapy with Michele, then driving to drop off a prescription for KAFOs at Johnson Orthopedic (that I had to get redone by a California doctor since my Philadelphia doctor had originally done the script), then getting an appointment with Larry Johnson for brace measuring and discussion (casting for the brace is waiting on insurance), then racing to my doctor’s office for my lab work  before they closed, then getting home and putting Laelia down for a nap and then waking her up in the middle of  said nap  in time for our National Seating and Mobility rep to  show up. He measured  Laelia for her Kid Walk in our kitchen while she cried for sleep  the whole time! *whew*

I was cuddling Little Screamers on the couch when my husband got home and  asked, all excited, “Where is it?!”

“Where is what?” My brain was back two or three medical appointments ago and then it hit me: WE HAVE A KID WALK!

Ooooooooooooh Ahhhhhhhhhhhh

If you were wondering what Laelia was using to get around at Penny’s party (see pictures below), it was a Kid Walk! We have wanted a Kid Walk for a long time now. A lot of our friends helped us research it too.  The problem was that it was $3,000. But our former physical therapist started  the process of getting one approved through insurance while we were still going to the south MTU (medical therapy unit). It went  like this: CCS –> Laelia’s pediatrician –> Insurance –> National Seating –> Laelia! And each step took begging, pleading, demanding and holding someone’s hand as they did their job. Or maybe I’m exaggerating. ;) It just took a long time. But, boy! It was worth it!

The reason Laelia is adapting well to the Kid Walk is because she’s had a wheelchair for a month now.  And how we got  the wheelchair  was a total blessing! (Stop me if you’ve heard this one.) At the beginning of August we rented a wheelchair for our trip to Kansas City. It was $30 for the  whole week.  Laelia loved it and it gave her so much independence!   But when the wheelchair rental guy didn’t show up to pick it up, and it had been over our week, I started to worry we’d be charged more. So I was texting and calling  him daily to figure out a time for him to take the darn thing back.  That Sunday we took the chair to church since we still had it. A lady commented on how well  Lali maneuvered in  it, and I said, “Yeah I wish we could keep it.” The lady responded, “I’ll pray specifically about this.” (And I was a little surprised by this response. I know we were at church, but most people would have just offered some sympathy!) Three hours later I was still texting the rental guy, but  he couldn’t get it that day either.  Finally I just asked, “How much would it cost to buy it off you and save you the trip down to San Diego?” I got a reply really fast, “$100 and it’s yours.” That was the cost of renting it for just  a month! Now it’s ours forever! And Laelia has been  Little Miss Independent ever since!  I want to find that church lady and ask her to pray for a million dollars next. ;)

And I know what you’re thinking: ‘But isn’t the Kid Walk just a  wheelchair?’ A Kid Walk is actually a gait trainer; meaning the child is suspended in a seat, not standing on her legs like in a walker,  and not sitting in a seat like in a wheelchair. It’s something in between. Her feet are on the ground and she can use them to propel her forward. After having Laelia’s wheelchair for  so long, the Kid Walk wheels were a breeze for her to master. In fact we had to keep reminding her to use her feet and not her hands! But she’s doing great! And she’s upright!

We took  the kid  and the Kid  Walk  to Target for a couple hours so she could practice running into the aisles walking. Two older ladies actually thought this was one of those child leashes. It was something about the way I was holding the handle bar in the back. Laelia has a leg difference  (bone length and contractures make one leg two centimeters or so longer than the other) so if I’m not holding the handle then she veers off to the  left. One of the ladies actually  dragged her friend  back to see the child in the “harness and cage.” At first I thought she was joking, but  the more I think back on it, I don’t think she was. She kept saying things like, “So this way the kid can’t get close enough to the aisles to grab stuff off them!” And, “That’s one way to keep your kid in check!” I can’t make this stuff up. :) Another lady started petting my daughter’s head and cooing. Laelia just said, “You’re a nice friend, but I’m just walking.” Later she told me, “That friend who was nice was walking just like me.” She said it in a confused tone of voice, like, So why was she so weird about it?! :)

We’re going to get a wedge attached to Laelia’s shoe next week that may help her walk straighter. That way I don’t have to hold the handle to her child-cage. ;)

Maybe  a psychologist could explain away  this feeling I’m having, but it’s a great feeling. I mean, I have a child who is upright! I left her in Sunday School last week standing at a play table with other children! She stood at the little play kitchen in the corner of the room too! She “ran” into the road when I was struggling with some bags last week and I was terrified! “Don’t you know better than to run into the road?!” I asked,  horrified. Then I realized that I had NEVER taught her NOT to run into the road. So after that I had a great time teaching my daughter to look both ways, not to run off without me, to stay where I can see her, to hold my hand when we’re in the street and to not run into strangers. I felt like a new parent–a  parent of an ambulating child! I always wondered what this would feel like.

So here are some videos of Laelia walking in her  Kid Walk. She’s getting better  all the time and I’m sure I’ll post more videos. :)

Penny helping!

David helping!

Just feet!

Penny’s Party Pictures!

Saturday, August 6th, 2011

Partying!

Not partying.

See the difference? :)

Melissa’s home-made cake!

Dave and Lali

Lauren, Penny, Meg, Daddy and Lali

Jared <3

I think this is after Laelia’s first balloon popped and she was getting comforted by Chelsea.

If you pout long enough someone is going to tickle you.

ADAM!

Little girl.

I love our friends! <3