Archive for May, 2010

Knee Immobilizers

Friday, May 21st, 2010

Knee  immobilizers  came in and Laelia is so excited about them!

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Well…

Knee immobilizers came in.

:-D

Well Done AMC Website

Thursday, May 20th, 2010

If you haven’t been to Mikaela’s website, then you’re missing out!   It’s really well done and now we’re even linked to it!

Check it out by clicking here!

Laelia is in the middle of the page, but there are also links to some adults with arthrogryposis, a lot of whom have been good email/Facebook friends for us!

Enjoy!

The naps Laelia has tricked her daddy into

Wednesday, May 19th, 2010

Laelia has amyoplasia (weak and missing muscle), and an overall diagnosis of  arthrogryposis (stiff joints or joint contractures). Laelia has two daily activities that are part of her  treatment at home: stretches for the stiff joints and weight bearing (on her knees in our laps)  to gain muscle.  Laelia’s daddy  will often  help with Laelia’s therapy.   And although I hate to tattle on them, sometimes  when I go to check up on them, I find this:

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Here’s the weight-bearing-on-our-knees nap.

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And this one is the we’re-going-upstairs-to-do-stretches nap.

Caught!!!

:-D

Things I’ve broken today

Tuesday, May 18th, 2010

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My cell phone (it  took a bath in the sink)

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Laelia’s AFO (but look I fixed it with duct tape!)

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Charley’s heart (didn’t let him play video games)

:-D

Hello flights!

Tuesday, May 18th, 2010

WE HAVE FLIGHTS TO PHILLY!!!!!!!! THANK YOU MERCY MEDICAL AIRLIFT!!!

We’ll be taking off for the airport at 4:30 in the morning on the 17th and arriving home from our trip close to midnight on the 18th.   Now I just have to figure out how to entertain a bad, cranky flyer for two straight days of flying across country.   And maybe entertain Laelia too. ;)

Today I’m working out a place to stay–a much easier task now that we’re certain we’re going.   And I have to figure out how little me is going to lug around a baby who doesn’t walk (or stand so you can’t always put her down), our giant book of medical records, our personal stuff and a car seat! We’ll probably need a rental car.   And we (and by “we” I mean YOU CHARLEY ;)) still need to fill out all that paperwork that Shriners mailed us.   And we’ll maybe borrow a portable DVD player and Elmo DVDs. And pack. And write out questions. And and and…   And I hope you’re reading the excitement in my voice/words at the prospect of these tasks. It’s an exciting time!

Well, exciting and scary. Now we see what the expert says. This is our last hope in a lot of ways. Our Obi Wan. I’m nervous about it, and burying myself in the planning stages lets me avoid thinking about it.   I start to wonder if those other doctors are right–that Laelia is the worst of the worst when it comes to her muscle weakness and won’t be able to move around much on her own.   :-/

I don’t *need* an ambulatory daughter (despite what Disneyland rides that limits her to), but I do *need* hope that maybe one day she’ll be ambulatory. If that makes any sense. I think I’m okay now with Laelia’s disabilities because she’s still young, and I’m nowhere near done fighting for her. I guess I just pray that I don’t come away from this exhausting two days a depressed mess.

And it’s funny to actually be hoping for giant, major surgeries across the country. Ones that don’t come with a 100% guarantee.   If it was me I’d want to be made straight and take that chance, however slim, at walking. But it’s not me; it’s someone much more precious. And there’s a risk that, because of the   severity of the joint contractures in her hips and knees, we end up surgically getting her in a position to stand (because she physically can’t do it now) then find out she won’t be walking or standing because of muscle loss. (And surgeries also diminish her muscle strength!) So you can imagine how heartbreaking it would be to go forward in hope, then end up with a straight, scarred, non-ambulatory baby girl who now has the added disadvantage of being stuck in a “bad” position for comfortable wheelchair sitting.   Because with arthrogryposis you are stuck in one position with limited range of motion, like a flimsy cloth doll with joints made of metal. So you pick: standing or sitting, legs bent or legs straight. Then you cut and solder back together as necessary and hope it stands up under it’s own weight.

So what to pick?   Dear God, help!

I think we’ll mostly rely on Dr. van Bosse’s extensive experience with arthrogryposis cases.   We only get something like 45 minutes with him, so I pray he sees what he needs to see and has the wisdom to know what to do. And if we get an answer that depresses me, I’ll trust that to be our best advice for now and determine to have peace about it.

Or forget Obi Wan, I’ll go find Luke. :)

Flights

Thursday, May 13th, 2010

canoe

Can’t canoe to Philly…

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Can’t push my (nom nom) caster cart to Philly…

scoot

Can’t scoot down the street to Philly…

daddys-shoulders

Wish I could just ride Daddy’s shoulders to Philly…

Guess I gotsta fly there!

Our journey to work out a flight to Shriners Hospital for Children in Philadelphia got pretty complicated.   We still don’t have one, but we’re closer every day.   (And I repeat that every day.)   I kept thinking June 18th was so far away and now I’m worried it’s too soon and we don’t have flights set up! (I’m a worrier and a planner, so waiting doesn’t suite me… a fact I have semi-patiently explained to God multiple times. :))   We can afford to fly out ourselves. Thankfully. Our wallets would say “ouch,” but we could do it. The only problem is that we can’t keep doing it.   If it was just one flight that would be different, but since it’s looking like a back and forth, multiple trip experience (hopefully if we qualify for surgeries),   it would break our bank long term.   That’s why we’re trying to work out transport through an organization who works with people like us.   Thankfully we live in a day and age where having a disabled child who needs care across the country doesn’t automatically mean you’ll go broke.   I found out that we qualify for a LOT of programs (that will cover Lali and sometimes one parent), but getting one set up has become difficult.

Midwest Airlines Miracle Miles Program was looking like our best bet, but they don’t have anything in San Diego yet.   My contact there is really nice and explained that they were in the midst of integrating both Midwest and Frontier Airlines and the process will take them probably toward the end of summer to complete.   So she said she’d keep my information for the future, but there wasn’t really anything they could do.

Southwest stopped doing medical flights and instead starting donating tickets directly to hospitals. Shriners is one of those hospitals, but I can’t get a single person who knows about it.   Apparently (and maybe this only applies to the Shriners in Philly), they used to have a transportation department, but because of budget cuts it’s gone.

My local Shriners in San Diego called me and explained that they pay out $11,000 a month to take kids back and forth to L.A. and Sacramento, but they don’t fly out to hospitals.   Of course after understanding my daughter has arthrogryposis (and Philly has the arthrogryposis specialty), he said he would be willing to try and stretch their budget to do a once-in-a-lifetime flight if we couldn’t possibly work it out any other way, but it would be hard on them.   (They’re already doing so much I’d hate to take him up on it. He mailed me his card and I’ll hang onto it for now.)

American Airlines never got back to me at all. Had friends try too. Nothing. They’re suppose to have twice-in-a-lifetime flights. Left a couple messages.

Northwest seems to require poverty for charity. Understandable.

Then I registered online with National Patient Travel Center. A representative called me back after a short processing time to get all my information and my daughter’s medical information.   (So far NO ONE has ever heard of her condition so it takes a while to explain.)   Then they sent me to Mercy Medical Airlift who required my employer and Laelia’s doctor to fill out forms and fax them back. That’s now done and I got a call from my contact there to wait “a while” to see if we get a flight. I asked if it would be a few weeks or a few days, and she couldn’t tell me anything, but implied a couple weeks was not abnormal.

Now we wait.

And wait.

In the meantime Continental CAREFORCE got back to me. They require faxing copies of the appointments that we didn’t have at the time, so I put them off.   But now we obviously have them. (I thought this would be taken care of a lot sooner.) My contact there (who is really nice) said that since I was working this out with another organization, to keep her direct number on hand in case MMA couldn’t help us.   Only problem is that we’re not medically sensitive (requiring a flight for a heart transplant) nor do we want to take a flight that should go to a medically sensitive patient. So we wait.

And wait.

But worst case senario is that we pay for a flight last second out of our “Laelia fund” and it’s really expensive.   We’ve been blessed and provided for over and over again and this will be no exception.

What I think about more than any of the logistics is how lucky we are to have wonderful supporting friends (and strangers) that have led us to this hospital and this doctor who may help our daughter with this severe diagnosis.   (Please please please.)   Even if I have to hitch-hike to Philly, as long as this doctor can help us (please please), then it will have been worth it.

Spelling with letters!

Thursday, May 6th, 2010