Laelia Sky

At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” I couldn’t help but tear up. “You’re doing it! You’re walking! Look at you!” She grinned her head off.

Didn’t have my camera on me.

I would give almost anything to see her walk one day.  Her doctor, well all three of the orthopedic doctors, said she flat out won’t walk–not enough muscle.  So we wait on technology. Come on engineers! Make me some legs! How hard could it be. (That’s a dare by the way.) (Don’t make me make the chicken sounds.)

PT and OT went really well. Laelia’s teacher from school, Dawn, came over to learn what therapies we do with Lali. By the way, I don’t know how to express how grateful I am for school! I learned that they are working on making adaptions so Lali can join in on snack time. They are already thinking ahead to how they can help Lali move on her own out to recess. And I heard about some of Lali’s friends at school who like to imitate her movements. There are typical (the word we use instead of “normal”) kids in the class so Lali has physical models for movement. But Lali is influencing them! I know another baby friend, Christopher, who did the same thing when they were spending time together. It’s pure flattery from these little kids, but I know it’s not from the older ones. I’m not looking forward to the day when Lali gets teased in big kid school. But for now I’ll not worry on it overmuch.

Taking the kiddo to a well-deserved Disneyland adventure this Saturday.  I have requested almost all of my records for the Seattle clinic in March.  Got some good advice from Jill, our OT, on questions to ask the specialists there.  Bought my flights.  Planning a trip to the Space Needle. It’s gonna be good!

It’s been such an up and down week that I don’t even know where to begin. I think my feelings must be tied up with this goofy Southern California weather: one minute the sky goes black and we get heavy rain and 80 mph winds, then the next minute the sun is shining bright as can be. (And the drivers down here behave exactly the same way in either situation. :-/)

One of the very positive “Up” moments happened yesterday. We received a gift from dear friends that solidified our decision to go up to the arthrogryposis clinic at Seattle Children’s!!!!  We called up the clinic to discover that ALL of the doctors we wanted to see were still available!  This will be our first time at an arthrogryposis clinic because we don’t have anything like that around here! (Well, it’s pretty rare everywhere really.) We did piggy-back on a muscular dystrophy clinic when Lali was little, but amyoplasia and muscular dystrophy are very different. And it was the muscular dystrophy clinic that had us get the muscle biopsy that showed inconclusive results since arthrogryposis, the kind Lali has, does not have any genetic markers or known causes. Maybe the arthrogryposis clinic would never have had us get the biopsy. I think I’ve decided not to think about it too much.

Part of the excitement of this clinic is the chance to see Dr. Judith Hall. She is the expert on amyoplasia and a bit of a celebrity in arthrogryposis circles. She is seeing Laelia March 31st!  Eeeeeeeeeeeeeeee!! We are also seeing Dr. Song and Dr. Hanel for Laelia’s orthopedic second opinions, and just in time for her next surgery evals! I just spent a few hours today trying to get several, six to be specific, different records to forward to the clinic. We needed her newborn records from her pediatrician, OT records, PT records, surgery records from her orthopedic surgeon, orthopedic records from two other orthopedic doctors and the biopsy records from her neurologist.  That is a ton of paperwork and apparently medical professionals have decided that copies of their work should cost me 25 cents A PAGE!  Blarg!  Then my boss walked up to my desk with paperwork that showed my time off request for those dates was approved! I described this whole process to some friends today as part of a crazy and frustrating and fulfilling day!

The other exciting part of this trip is that Laelia and I (Mommy) are going with a friend and her son! I love friends! So fun times ahead. In fact, I have a lot to be grateful for since without this friend I would have never heard of this clinic.

And I’ve decided that this trip totally outshines the “down”s of my week. But one thing I did want to put out there, for those of you who are in the know, is a plea for prayer for my extended family. Whatever the outcome, hard times are ahead for my cousin, well, cousins really. They are in the middle of a heartbreaking situation, and just have to trust they are being carried through it.

Well Laelia is demanding, “Rain please!” So this is my cue to grab her and run out into the storm while she laughs and wiggles. Then we come in soaking wet… which is only fun for one of us. *sigh*

Laelia’s Picnic in the Living Room

She calls this “Rockababy.”

San Diego has had some crazy weather lately, and Laelia discovered that she LOVES rain!  She begs, “Rain please!”

Weight Bearing on Knees!

(something January has seen a lot of)

Post Workout Stretches

On September 16th doctors did a muscle biopsy on my daughter’s leg. A couple weeks ago they had lost or misplaced the results. Last Friday we got an evening call saying they had found the results, but they were inconclusive. Meaning the test was for nothing. So from the EMG and muscle biopsy all we know is that she has very little muscle that’s extremely weak, a lot of those nerves may be missing or just damaged and we have no idea why. Did I mention this biopsy left a scar? Grrrr.

So this bummed me out more than usual. I don’t know why I was expecting something concrete out of this test. This is arthrogryfreakin’posis we’re dealing with here. But I was hoping for some piece of information gleaned from this test to show if I caused this or not. Or tell me if it was safe to have another kid someday. I think I would rather have had a bad test result than an inconclusive one. Then at least I would have some direction. Well, we do have some direction. We were given the names of two doctors who deal with genetics in our area. Right now I’m thinking we won’t do anything with them.

I’m considering going with a friend to see some doctors in Seattle this year. At first I was a little scared because getting the biopsy news left me feeling unsure if I could deal with more bad news. But this may be a good opportunity, as my friend put it, to find at least one thing to help Lali. There is a doctor there, Judith Hall, who is the amyoplasia expert. The arthrogryposis clinic starts March 31st.

The only problem is that yesterday they called me and informed me that my insurance does not cover the whole thing. It will cost around $1,500 out of pocket. At first I thought, “No way!” But I’m realizing after talking with the scheduling gal that seeing these famous AMC expert doctors who are getting up there in years while they are still doing clinics of this sort is probably worth it. The hospital scheduler said she had people with AMC coming from all over and they all wanted to see these doctors! Also our insurance is not going to get any better, and we may need this information now before Lali gets much older. Especially now that we’re looking at more surgeries coming up soon. I definitely want some second opinions. And soon.

We have an appointment with Lali’s surgeon in about four months to evaluate her for her next hips surgeries.

So we’re considering going to Seattle despite the cost. If we could make payments or something I think it could work out over time. We’ll see. Of course if it doesn’t work out then it doesn’t work out, but I want to know, as a Mommy, that I’ve done everything I can for my baby.

Grady (37)

Boy, Born May 14, 2007

“What a snuggable and happy little boy!  Grady was born with arthrogryposis of his lower limbs.  His hands and arms are fine.  He is not able to walk at this time.  He is only 2, and will so greatly benefit from surgery, therapy, and loving family to encourage him!   Without this, he will remain bedridden for the rest of his life. Please consider Grady for your son!

Contact Andrea [bamaroberts (at) comcast.net] directly for more information!” ~~www.reecesrainbow.com

This little guy has been on my heart for a while.  I’ll be honest, I want him. WANT.  If someone wants to give me the best present ever, please send about $25,000 or so my way and convince my husband.  Thanks!

I know there are more kids with arthrogryposis that need homes out there. In fact, there is one who is in desperate, immediate need!
But Grady is special to me because he looks so much like Laelia that it kills me!  They’re the same age even.  Plus he’s got fully-functioning arms!  What Lali would give for that!  And just look at that fashion sense; he and my husband must already be related. ;)  Laelia knows Grady’s picture well and asks to see “baby” when I’m on the computer.

We can pray for him and we can donate to his adoption fund (which is still so pitifully small), but he needs someone to actually adopt him.  And soon.

Kids in this part of the world are sent to institutions at around age four or five if they are handicapped. There they receive minimal care and are bedridden for life. From what I read today, once they are sent to an institution, they are at that point no longer eligible for adoption (at least in Russia). It’s sad and terrible, but not a reason to adopt.  But if you are able and willing to adopt, PLEASE email the above address. And if you live anywhere near me, I want to visit!

I found Grady’s picture on another blog at the bottom of this post. He’s just so precious!  If you are thinking about adopting someone with arthrogryposis, I will be no help with the adoption stuff since I have never adopted.  But I will be your support system.  And I will promise to answer all your questions about AMC or amyoplasia or whatever!  In fact, there’s more than just me willing to do just that!  I can name off twenty people right now who would be willing to help you know how to care for him!

I’m really hoping you’re out there, because finding him daily on the waiting list (still!) is breaking me up inside.

Laelia’s Christmas Present from her Parents!

She’s kicking it to Mama.

We went to a wonderful physical therapy appointment last Monday night. Well a wonderful OT appointment too, but PT was exciting.  Lali is always better about therapy with the therapist than she is at home with the frustrated Mama! :)  But her new ball is super fun for therapy; she loves bouncing on it and hanging off it.  I’m always impressed with how many things a PT can figure out to do with a giant ball.  It also looks like Lali is getting a bit stronger.  And we don’t even realize that there’s any difference (which is depressing) until we meet with our PT and she notices (which is exciting)! :)  It’s encouraged me to be better about Lali’s weight bearing exercises and hip stretches for sure.

The numbers:

So Lali is 30 degrees from zero (straight) on her right knee and hip and 20 degrees from zero on her left knee and hip.  It’s better than a lot of kids with her condition, but having those contractures are keeping her from being able to use a stander, among other things.  However, we are going to double our leg stretching efforts and see if we can’t get that closer to 15 degrees on both sides.  Or even if we can just get her closer and put a platform shoe on her right foot and…  I dunno.  Of course we have not seen much gain in range of motion in her knees for a long time so maybe she’s hit her limit and needs more surgery.  I’ve researched the knee surgery it requires (a zig-zag Z scar on the back of both knees) and am hoping we can avoid it.  Hip surgery is also something we’re working on avoiding, but it’s looking more and more necessary.  Pray we can stretch out her hips in the next four months!

Even though she’s not quite straight enough, her PT is going to call some vendors and see about different modified standers for her.  (A stander is just a big contraption that straps you into a standing position to put weight through your legs. See picture below.)  So it would be really exciting if she’s able to use one!  The last time she tried to use one, her legs were too bent and her hips were too abducted so it didn’t work at all. Gave us a cool picture though.

Baby Cool.

Our PT is also going to start looking into electronic wheelchairs for Lali. She said she’s thinking Lali will need one by the time she’s three years old. Insurance companies are generally not crazy about replacing them more than five years apart so we may have to get something big that she grows into.  So by the time she starts kindergarten she’ll hopefully be mobile!  It’s fun to consider!

Speaking of kindergarten and the future in general, I’ve been kinda worried about it.  Because she has no mental disabilities (Yay!), Lali will be kicked out of all programs, like her Early Head Start school, at age three (Boo!).  Then we’ll have to find a program that will take her AND change diapers.  (None exist.)  Then we have to hope to figure something out (in the way of taking care of her potty needs) before kindergarten.  I’ll check with the American Disability Act people and see what exactly is covered by the concept of equal access.  I’m sure it will work out, but I worry.  I let worry get the best of me yesterday, and I’m determined not to repeat that today.  Back to focusing on her great PT experience Monday! Yay!

She wakes me up from naps with her mad guitar skills.

She pretends to be asleep.

She talks to her boyfriend on her new play phone.

For those of you who joined me in praying that Laelia would sit up (unassisted) before the New Year, you’ve probably already read my New Years Eve Eve (Dec. 30th) post and accompanying videos of how far away that goal is. What you missed were the hours of practice, the weights we bought to strap to her leg to give her leverage, and the tears as I had to give up the idea that Lali was going to do it by my time limit, if at all. New Years Eve we went camping and left Lali with Grandma Deb to get spoiled rotten. Unfortunately I got a stomach bug and we had to cut camping short and come back New Years Day. After Charley dropped me off at home, he went to retrieve Lali from Escondido. About an hour and a half later he was back and Lali was back in my arms. (Her hair looking so much better than how we sent her, thank you Kathy. :))

Charley sat at the foot of the couch where I was sprawled out clutching my stomach. He had tears in his eyes and I started to think, Uh oh, what happened? But I could tell he was processing it as he said, “God answered your prayer.”

Apparently (and if they had known this was a big deal at the time they would have taken a video or something) she sat up using the help of a block-shaped bean bag chair. And when Charley (who didn’t at first realize what they were saying) started to ask a few more questions about it, it turns out it happened New Years Eve–before New Years Day like I had specifically been praying about!

So, you know, cool!

I often don’t have a lot of faith. And I lose the faith I do have if it’s not on my time schedule. But my resolution this year is to have more faith. And let God do what he wants to do in my angel’s life on his own time schedule. It’s hard because that seems SO slow to me. She can’t crawl or stand or kneel or walk, etc. and she’s two years and three months old already. Her physical disabilities seem worse than they are in other kids with her condition too. (Not the arthrogryposis, but the muscle loss.)  But I trust that God will continue to make himself look good by answering our prayers on Lali’s behalf. Thanks for throwing me a bone here, God.