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!

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.

update

Ben is back in casts. purple ones. since his feet reclubbed in his AFOs. Sophie is doing fine in her AFOs. She got her straps tightened a bit more at the last visit but overall her feet are doing fine. She is anxiously awaiting her new chair. I am not thrilled with doing casts again. but I guess its what we have to do. He got some sores and in order for the sores to heal we had to loosen a bit and his feet aggressively went right back to clubbed. I hope that I can find somewhere for Sophie when Ben goes back since she doesnt need to go for appointment. Of course I have to MAKE an appointment. the scheduling dept was already gone when we left Shriners on Friday. we spent THE ENTIRE DAY there.

a date for osteotomies.

Mimi called today. May 3 is the date for Sophie's surgery. osteotomies. both sides. man it will be really strange to hold her and carry her and see her with legs that dont flop open all the time. she will be able to sit on the potty without peeing out. she will be able to sit in a chair without me having to puah her legs together. her legs will be TOGETHER! that will be amazing. scary getting there but amazing when its done. of this I have no doubt. I dont know when after that we will be getting fixators but I bet she wont be able to scoot any more when her legs are forward. I could be wrong though. She is pretty resourceful!

first PT

we had our first pt appt. Sophie was nervous. but it turned out ok. she is strong willed though and wants to play what she wants to play and play it her way rather than doing what Loretta(therapist) wants her to do. she is very content to ignore questions directed to her. we have to work on that! Anyways we will go twice a week to see Loretta for now. Some weeks it will have to be once a week due to scheduling of other things(like Philly week). I asked many questions and they all came down to one thing, core strength and not enough of it. so thats where we will start I guess. She still fusses a little about that right leg but no clue why. she isnt freaking out completely every time we touch it though so I guess thats an improvement. She was also totally ok with getting her into a chair and understands when I say we have a life to live until she gets fixators. and besides by the time she is done with fixators she will be covered under a different insurance so we can revisit the need for a new chair at that time. besides I cant even get a date for the first surgery(osteotomies) which will include 6 weeks casted, much less worry about when the heck we will get to fixators! meanwhile with 10 kids I have places to be and if I am there Sophie is there, thats how it works around here. she goes where I go. overall it was a good visit and she definitely wants to get OT in there too. so here we go on a roller coaster! there are two OTs and one I have worked with before and DONT LIKE so I am hoping it will work out to get the other one.

stiiiilllll waiting

waiting for pt to call back and schedule sophie. hoping to push for a chair at that appointment. she IS 5 and has never walked. no guarantee she will EVER walk. and is a long time from even trying.

which leads me to another wait. I keep waiting to hear about osteotomies for Soph. while I am not looking forward to it I want to get it out of the way! she isnt getting any younger you know! or lighter! so I ask at every appointment only to be told no we dont have a date yet. Last week I called the care coordinater she was supposed to call me back. she said she would talk to the doctor and find out. only she never called back at all. and I was busy and didnt get a chance to call HER back until yesterday. except she isnt in on tuesdays I guess, someone else called me to tell me that. today? no call. seriously I know there is only 2 OR in the place but how hard is it to get a surgery scheduled? even if they said in 4 months on date x I would be happy!just get it scheduled? its already been 4 months since we discussed it and they said they would work on scheduling it. GRRRR.

Ben is in short casts and initially his knees were sort of stuck in the casted position but they have stretched out and he is starting to stand again. hope walking comes soon for him. it would be great to have him mobile! he is standing more and more. initially walking took all his strength and I did all the "heavy lifting" so basically he completely leaned on me to take even one step. that is getting much less and I can hold his hand and walk next to him or he can hold the wall down the hall.

Sophie is in short casts too. she is not doing as well. she isnt pulling up on anything. she isnt really moving around very much. she complains of pain when we move one leg. I finally took her in for xrays she complained about it so much. they came up empty. but while she was distracted with a computer daddy pulled on her leg in the very way that causes pain and got what reaction? ZERO! none at all! no pain no complaints no grimace. nothing. so why she is crying every time I move her is beyond me.I have decided to suspend moving the leg for a day or two and give her time to forget. I will just completely ignore the facial grimace every time I pick her up. every time I put her down. I will do all the things we normally do without making any kind of fuss about her leg. hopefully in a day or two she will have forgotten that it "hurts" and get back to normal. I am disappointed that she is no longer trying to stand though. will have to mention to doc when we go for AFOs in early feb. of course another 6 weeks in casts if they ever schedule her will mean no standing anyways.

another trip to philly

kids got short casts to hold their correction until their AFOs are ready. much screaming by sophie, as is the norm. Ben got black and sophie got pink. Ben got walking boots but so far he isnt walking. his knees are stiff from being bent in casts for so long. but they seem to be stretching out more all the time. When I pick him up I let his legs hang so the weight of his feet and legs gently pull stretching his knee backs. Still no date for osteotomy.

I asked about a chair for sophie as she is getting too big and too old to be in the stroller all the time(although she never complains about it) basically I was told that since she has upcoming fixators (at some unknown date in the future) that any chair fitted for her wouldnt work then and not to do anything. soon her little legs will be too long for the stroller. then what? 30 pounds is a lot of baby to carry around all the time. and she cant really even hold on. I am frustrated. I know that if you get an electric chair you cant get insurance to give you a manual. so I wanted only a manual so that later when she gets a power chair she will have that one to fall back on. and we dont have a really accessible house right now for her to use a power chair. but I cant get one because at some date in the future she will change? wth? Maybe at home we can try to get one. Start with pt locally and see if they will work with us to get a chair. We have met our deductible for the year so this is a good time to do it. and by the time she would be ready for a power chair way down the road we would have new insurance.

their feet are looking good. bens heel is still just a bit rolled under but they werent too concerned at this point. they said if in time it becomes a problem they can do surgery to fix it but it isnt really necessary at this point. it usually resolves itself OR isnt a problem for the person.