Hello flights!

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. :)

4 Responses to “Hello flights!”

  1. Cheryl says:

    I am happy for you that you found tickets. You are going to be so happy that you did this. You will not end up with a child who has been surgically put in a bad position. You can put your faith in him that he will do what is best for your daughter. Many families make the trip to Philly from across the country because he is the only doctor who knows how to treat arthrogryposis right. Do not worry about limited time with him, I have never heard from a new family that they didnt get their questions answered. I will pray for you and your family. Cheryl Schalk

  2. Bethany says:

    Hooray for getting your flights! That’s got to be a huge relief, and hopefully some of the other options will be available by the next time you guys fly to Philly. By the way, “Our Obi Wan?” So. great.

  3. Anonymous says:

    When we were flying with the kids and needed their car seats, I got a luggage dolly with big wheels and strapped their car seats to it. We did not use a stroller. We put them in the car seat and pulled them around. You will then have the car seat for the plane. Much easer to have them strapped in their seats. :)
    Also get a rolling “briefcase” to haul all of your paperwork. It is much easier than trying to carry everything and with all of the pockets your papers should stay organized. You can stack it on top of your other rolly suitcase that you are using.

  4. Jennie Thompson says:

    When we were flying with the kids and needed their car seats, I got a luggage dolly with big wheels and strapped their car seats to it. We did not use a stroller. We put them in the car seat and pulled them around. You will then have the car seat for the plane. Much easer to have them strapped in their seats. :)
    Also get a rolling “briefcase” to haul all of your paperwork. It is much easier than trying to carry everything and with all of the pockets your papers should stay organized. You can stack it on top of your other rolly suitcase that you are using.

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