Dear Becky,

I hope that you are feeling better, and get out soon! Sorry that we
did not get to visit with you as much as we did with your grandmother
and daughter. I wanted to come visit after our appointments on
Friday, but Seth's schedule kept changing, aso we were stuck at
appointments until almost dinner time, and he was tired, and wanted to
go back to the inn.

We have your address and e-mail, annd phone number, so I will try to
call you in the next few weeks. It was so great to see you finally,
and see the Putvins again. I hope they made it home ok in the weather
too! We are supposed to return to the NIH the week of August 13th. I
think that is when the Putvins are coming too! It would be great to
get more of us in one place, and I may bring my older son and husband
along this summer, to sightsee after, so maybe I can see people coming
the following week too.

Seth says hi to Tiffanie, and they had a good time together. He wants
to wrtie or call her sometime too. he really had a lot of fun doing
arts and crafts with her, since it is one of his favorite things to do
there!

To all,

We just flew home from Chicago late last night, so I kept Seth home
today from school. It has been a nightmare, and we were already
sleep-deprived from the NIH early morning appointments (and jet lag
since 7 am at the NIh is 4 am in California). We were supposed to fly
through Dalls, but that flight got cancelled, and they sent us to
Chicago, telling us all was fine there. NOT! We got there, and they
cancelled our flight to San Francisco due to weather. Then we got
onto another flight, which was cancelled, then we were booked onto a
flight to Portland with a next day flight from Portland to San
Francisco, but then that got cancelled.

So, by then, everything was cancelled going west, and we had to sleep
in the airport (try to sleep that is) and wait in lines until midnight
for getting on standby lists, then lines for cots, lines for blankets,
and a line for pillows (which ran out). Think old Soveit Union lines
for blocks when people were trying to buy toilet paper, etc, and that
was what it was like!

I had grabbed a large wheelchair as soon as I found out the last
flight was cancelled, and bundled up Seth in it so he could start to
sleep, and be wheeled all over asleep while I waited in all the lines.
He was a good sport, and actually slept that way, then was still
asleep when I put him on the cot at midnight. Then at 4 am they came
around to take away all the cots and blankets! So Seth went back to
sleeping in the wheelchair, and I pushed him all over the rest of the
night and a lot of the day yesterday while we ran from gate to gate as
they changed them, trying to get on the standby lists.

I tell you, it is depressing how things are nowdays! Basically, no
one cares if your kids has just come out of the NIh, had LPs and still
has his hospital armbands on, and is getting low on their medications.
We are members of the frequent flyer miles for every airline we fly,
and I even have a credit a card with American (which was who we were
dealing with) but no one would help us, in person or on the phone.
They put executive'first class peole, international flights and people
with elite/platinum membership as a priority all the time, and we were
at the back of the list. We were nice, and patient, but I could not
believe that they thought it was more importnat to keep the fat
wallets happy than to risk having my son in the airport for 2 days,
and we were getting ice from Mc Donalds to keep the kineret cold, but
I did not have but one more needle for shots, since I had only planned
for a 2 day beyond our trip need for suppplies!

Luckily, we got on the last flight last night, since they brought in a
big plane and there were seats, but it was stressful. IF we had not
gotten on that one, we would still be there! They did not offer us
any accomodations, food vouchers, or nothing because they do not have
to if you are stuck due to weather. I could have left and paid for
the closest hotel the Hilton (as if I can really afford that!) but
since I had not valid flights on paper anymore, they were restricting
people coming back into the airport, so we stayed.

Seth was a good sport, and liked the idea of having Mc Donald's food
for many meals a lot. We did eat a lot of juice, fruit and salads to
make up for the burgers and nuggets, but it is hard to find other
foods that he can have due to his food allergies, so we were limited.
Thank goodness they take credit cards now, becasue I ran out of much
cash, since I was not able to get vouchers at the NIH, and also paid
for the metro to get to an from the airport in DC because the shuttle
was not running when we arrived late on Monday, or on Saturday. I
could have pushed hard for a cab, etc. but I know that there are
budget cuts, so I was not going to push too hard.

So, warning to any traveling soon, bring extra meds, and diapers or
whatever you need, and have it with you at all times! We have had
many flying issues due to weather but this was the worst.

I am thinking of asking Dr.G. to write a letter for all of us to carry
that says we should have priority for flights, ude to medical needs,
because this was ridiculous. Luckily Seth was stable, and was doing
better on this trip post LP and everything than he has in years, but I
cannot imagine the horror if this had happened to some of the other
more severely affected children!

I am sure that they are bombarded with people's issues, but I could
prove our story was true, with Seth's armbands still on, and all our
paperwork, but no one cared. I considered calling Dr. G about it, but
we luckily got out last night.

Dori, I thought of calling you, but once I found out I needed to stay
there to get any hope of getting a flight home, I didn't bother. IT
would have been fun to meet you, but under the circumstances, ti was
difficult. Thanks for sending the bylaws signature page! It was on
the table in a stack of mail when I got home, and that made my day.
Now we can get the IRS forms in, and all.

We are happy to be home!

Karen