Flights

canoe

Can’t canoe to Philly…

castercart

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.

2 Responses to “Flights”

  1. Traci Royal says:

    Hi,

    I have been following Laelia’s blog for a while now. She is such a cutie! I love her caster cart. I am trying to build one for a little boy with spina bifida in a foster home in China. Do you know if there are plans out there or was Laelia’s just built from scratch? Best wishes on the flights. -Traci

  2. Robin Clark says:

    I would love to donate to the plane fund. Please tell me what address to mail it to. You must get her there, no doubt about it!

    Blessings,
    Robin

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