This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Tuesday, April 12, 2011

wheelchair blues

Sophie's little chair is so cute. and she loves it. but, I am so disappointed in customer service. no twinkerbell. I clearly said I will pay extra for it. they said insurance wouldnt cover it. I said I dont care. she wants twinkerbelle I will pay. and yet we get there and its plain black nylon. someone wrote that we "changed mind" and didnt want it. so now we have to wait for twinkerbelle. rather wait for a quote on twinkerbelle. Maybe I will just make a cover myself then it will be washable and she can have dozens of them. We wanted bus tie downs on the chair. she is 5. clearly she is going to go to school at some point in the 5 years this chair is supposed to last. the chair doesnt have any. we were initially going to get a stroller and said definitely tie downs because definitely she WILL go to school. yet SAME GUY didnt think to ask if we wanted them or order them initially for this chair when we changed chairs. now I need a scrip for them to be added. I need a scrip for her to go to school safely? wtf?? there goes the rest of the school year here(thankfully only two weeks) but I dont know how she will be able to go next year somewhere else without them. so they have to order them. I have to get a scrip and then I have to drive 1.5 hours BACK to their place to have them installed while waiting around an hour. she is FIVE! of course she is going to go to school! you have SEEN HER! she isnt gonna walk there! no school bus tie downs? HELLOOOOOO? seriously they should be mandatory on all kids chairs. this is nuts.


Monday, April 11, 2011

New Chair!!

Ben got a new quickie chair. it isnt NEW but new to him. it was from UCP. someone else no longer had a use for it so they put it up for placement in a new home and chose ours. so he went all over the yard in it today. the kids were so excited about his chair! Im not sure who was MORE excited, Ben or the other kids. he looks very cute in it and it fits him pretty well. the only problem is that it doesnt fit in the car! tomorrow I gotta go get Sophie;s chair. and I have 3 kids with strep to take with me. oh goody!

Saturday, April 9, 2011

Another Philly adventure!

We got up early and headed to the airport. we had to fly from a different airport than we usually do so we got a little turned around as it isnt clearly marked. so Ben and I say goodbye and go inside to check in. the stroller wheel is going thunk thunk thunk. I think to myself, just get us to philly and back again. after that I dont care! We headed to the check in counter. Thunka thunka thunka. the lady gives me everything I need and sends us on our way to security. Thunk thunk thunk.

Tickets in hand and carryons ready to be displayed for all to see the contents, I hand over the tickets and my government issued passport card. I have used this card no less than 30times I would say. Like I said, this is a different airport. They dont like my card. The young man no older than 20 tells me that a passport card is not sufficient id for customs. I didnt think I was at customs. I was at TSA and I was not traveling internationally, only to chicago and then on to philadelphia. nonetheless the supervisor must be consulted because clearly they have never seen a passport card before. Supervisor gives them the go ahead. yes passport cards are acceptable ID. great thanks.

I opened my bag and began to dump the contents into various bins to be xrayed. shoes here. computer there. liquids(in a baggie!) in another bin. backpack and all bins are heading through the machine. I stand at the door and wait to be noticed. I was waiting for the usual "all strollers must be collapsed and sent through the xray machine, all children must come out of strollers." I guess the blazing purple casts caught their eye because no one demanded he be removed from the stroller. they took the stroller through the door and I was cleared through the regular machine. finally we were making some progress! they checked Ben over thoroghly and looked in and under and around the stroller. Finally we were free to go. I gathered our belongings and put them back in the bag. put the bag back on my back and head for our gate.

But I dont know where my gate is, I have never been to this airport. We did find it eventually and with plenty of time to spare. We had plenty of time to spare because Chicago was closed for fog. so we waited and got to talking with a lady and her daughter who were also going on the same flight. In typical Minnesota fashion we determined that I live in the very same town where they have a cabin and go every summer!

In Chicago I was sure we missed our connection because it was 30 minutes past the time it was scheduled to leave. I checked the board and it was listed as boarding! good thing we were closeby because we got there just as she called the last boarding call. I gave her my tickets and stopped to breathe when she told me that my name wasnt coming up on the flight. WHAT? After that was straightened out they got us on and moved a few people around so we could sit together and in the front. Carrying 35 pound kid now covered in plaster and fiberglass to row 56 does not sound like fun.

The stewards were funny on this airline, saying things like "kick off your shoes if your feet dont stink!" and "when putting on your life vest be careful of your hair ladies because you KNOW the news crews will be there!" and "put on your oxygen mask and breathe normally....yeaaaahh like THATS gonna happen!" the flights were ok. but the people who work for this airline on the ground were not overly friendly. I much prefer Delta. and since they have open seating they dont preboard families! so I had to beg for preboard only to be told that they dont preboard families with small children. So I told them his stroller was his wheelchair. then they would give me preboarding. eye roll. he really needs to get his new wheelchair thunk thunk thunk.

we made it to Philly and our friend Becky gave us a ride to Camden RMH. The Reibens were there already so it was a welcome home party and Ben was thrilled to see his friends again, especially Evan. We rode with Valerie to Shriners on Friday and begged and pleaded that they get us all out quickly so we could get to the airport, Val was our ride. we got done fairly quickly and visited with other families. Valerie didnt fare as well. she had several appointments that day. I finally decided to call a cab after Becky didnt answer her phone. In the lobby waiting for the cab Valerie AND the cab showed up at the same time. since it was out of her way to take us, I took the cab since it was actually there. That way they could get on their way home too.

at the airport I had to check in with a PERSON not on the computer since we had charity tickets. we waited in line a LOOONG time and when we got to the front of the line and handed over my info and passport card. she said you dont have enough to get back. WHA??? this is all I was given! oh she figured it out, you arent returning to philadelphia you are going to minneapolis to stay. so do you have a birth certificate for him? HUH? EXCUSE ME? not once has anyone asked for a birth certificate. not even when I was traveling alone with FIVE KIDS. No I dont have it no one ever asked for it before. so she gave us our tickets and sent us on our way.

Thunka thunka thunk through security and on to the gate to beg again for preboard. we dont preboard families with small children. BUT HE HAS CASTS ON BOTH LEGS! "oh ok well I couldnt see that." at this point I am ready to bang my head on their counter. made it to chicago with what I thought was enough time to eat. only mcdonalds was super slow givng us our to go order. thunka thunka thunka back to the gate, they were starting preboarding. I ended up putting it all in our
2nd carry on bag and carrying the two bags, Ben, and my coke, while collapsing the stroller at the end of the jetway. found us a seat near the front and settled in to eat. but since I didnt have enough hands Ben ate first and then I ate. A really nice guy sat next to us and we chatted all the way home about India and arranged marriage and Indian food and his little boy. I love Indian food and Indian culture so it was very enlightening. We got to minneapolis and did it all in reverse getting ben to the stroller and getting to baggage claim for Eric to pick us up. We waited outside with a sigh of relief. thunka thunka thunka.