two more weeks at least

at which point I am planning to check out no matter what. He said I could take her home now but would have to come back in two weeks. I am already here. going home and back again is a pain too. She has OT next week. Wonder if Camden is going to kick us out now. but Van Bosse is out next friday so that isnt OUR fault! he only does clinic on fridays. I really miss home and the kids and the dogs. While we have been gone the area has had a lot of flooding and I know the roads are a mess. Not sure how to even GET home with all the roads out. Sophie is doing well. Four turns a day on fixater. making progress but not as much as I had hoped. it will come. it just takes time and I am asking for miracles here because we have been away from home so long. I have not much else to report as not much is going on here. We watch tv, read, do math, visit with people at Camden and yesterday we went to Beckys house(THANKS BECKY!!!). the days start to run together after a bit. We went on a big shopping trip yesterday....to CVS for diapers and a box of cheerios. I also got new headphones because mine crapped out on me. and I have a lot of time to be using them. I think next week we will go to the aquarium in Camden. wonder if there is a movie theater we could go see a movie.  Sophie made a friend named Mikayla here at Shriners today. Mikayla is 7 and also has AMC. Well not much else to report. we are alive and well. missing home and husband and kids and dogs!

moving

we are definitely being moved to Camden. Im not happy about it. but there is nothing I can do about it and at least its a place to stay. Im sure Ill meet someone there. many of my friends here at Erie have gone home or are going home anyways.  When I was a kid I never had a problem meeting people. Every where I went I just made a friend to play with and life went on. even if I never saw that kid again we played while we were able to. its a little harder as an adult. And somewhere over the years, I seem to have lost my ability to just walk up to someone and start chatting. many times over there there are moms with babies still in utero. babies in nicu. or kids in hospital not kids at rmh. I find it difficult to relate and make friends. Last time I stayed there with Ben, Aseel and Bisan were there. we knew that. so I guess Ill have to work on that. meeting people. I guess I get to work on packing up all our crap in a hurry also, since we may be going tomorrow.  Things work a little different in Camden. this is one of the reasons I find the Philly house a little more comfortable and comforting and home like. Certain things are similar, like the food situation. food is available and dinner is served daily.  although if you are fussy you may be hungry.  The big difference is that there are no tv in rooms. only in family room. Apparently this is to encourage those of us with the problem I mentioned above. we are forced to spend time in common areas.  There are climbing areas but not much in the way of toys. so if you can't climb there isnt much to do(although if you can climb its great).  guess we will be working on that math and reading.  here's hoping we a) meet some one with something in common over there, and b) are allowed to go home soon. I miss my OWN home. my OWN way of doing things. a house run MY way. and all the kids in it also my OWN.

unable to comment....

it seems I am unable to comment on my own posts! how annoying. So I am answering them here. Michelle we will be here until her leg is straight as long as that takes.

Rebecca  I am not depressed I am lonely and missing my family and home. I am in a strange city with my disabled child for unknown amount of time. I have no transportation and it is possible I will not be able to stay at the place we are currently staying. so what I was saying is this is a hard time and a little support from home would be nice.

It's lonely here.

I miss my family and my home. An old friend stopped in today to see us. That was nice. He's a guy I grew up with was in the area. If you're reading this, thanks Mike!  Sophie is doing really well. She has gained 25 degrees already! Her leg was fixed at 90 degrees when we came here. its now at 65.  Thats what I call progress. She is very adaptive and while she is still nervous she is adjusting.

We are staying at ronald mcdonald house. Sophie sees her doctor each week. also is working on some OT once a week. however that only makes two appointments a week. even though we live across the country they want us to have three appointments to stay here. so thats all up in the air at the moment. I may have to move to camden if they will have us. the person I need to talk to is not in until sunday at 5. 

I am very disappointed that I try to give and give and give I rarely get anything in return. I reach out to people. people I just met, people I have known for years. occasionally when I am in a dark or difficult place someone will reach back. but here I am across the country with my child for medical treatment and most of the people I know cant be bothered to even shoot us an email asking how we are.  drop me a line on facebook. send an email. acknowledge my existence. Im drowning here and no one will even throw me a lifeline.  

she's out!

busted little queenie out of the joint today. Shriners hospital for children is great but I was getting tired of sitting there all day and running back and forth. now we adjust. Im scared to death. Im on my own with her now. Im doin ok but scared and nervous and sick of hanging around already and still weeks to go! thankfully we have met so many people here. one of our favorite friends will be here in ten or 11 days. that will be fun.

Sophie is doing pretty well. she just refuses to sleep. hasnt really slept in days. she is out cold right now. a little meds, a big day in her chair, back to bed and she just zonked out. This of course means I can watch trash tv. but there isnt really anything on. Figures huh?

things are a little rough at home I hear. I had a morning call to talk to a boy who was hitting. and an afternoon call to talk to a boy who was not listening and insisted on jumping out the window. poor husband is trying to do it all there while working full time. We hardly get to talk because he is so busy. If we do its a pretty quick chat. I miss home and my husband. and the kids. and green grass. and my trees. and my house. and my dogs. and my bed. and my car and a familiar city.

there is a lot of good food here and its very hard to not gain weight. but I have been walking and running trying to keep my weight down. Sophie didnt last long enough after dinner to get a chance to go walk and run. hopefully in the morning she will be fresh and in good mood and I can get in some exercise. not sure if its possible for me to do that without her demanding something again and again.

well I guess Ill go to sleep since I am sure she will wake me partway through the night.

life is hard right now

they turned down Sophie;s sedation and she went ballistic. she could not be soothed. she was very upset and clearly in a lot of pain. I feel bad for putting her through this but I know she can walk if her legs were straight. thats what all this is for, so she can walk. she wants that. I want that. I finally left at 3 because if she was awake she was screaming at me or shrieking in general and if she was asleep she was asleep and I was reading my book watching her sleep. once when she was shrieking about pain(I dont make light of her pain, I am sure she has plenty of it) the doctor and nurse were able to calm her a bit but then I stepped in the room and she went all out again. there is a correlation to my being there and her being wild. and the doctor was so kind to point it out to another doctor who steered him out of the room. dont you just love hearing how your presence is the problem? yes he is right but it still hurts. I want to comfort her but she is beyond that. a bit of shushing and head rubbing is not going to make this better. so they turned the meds back up and she has been sleepin away. I am at Erie RMH. feels a little wierd. I feel a little guilty. but not too much. she needs to rest and if I am there she is getting all worked up. I hope tomorrow will be a better day for her. I really want my sweetheart back.  She is NOT herself right now.  As for the leg they didnt get a lot of straightening from the posterior relase. some but not much. and the fixater is completely wrapped in gauze so you can barely see it at this point. she is not a happy camper. She said I wish I didnt choose this leg! (as if the other leg would be so much better) and she also said I dont want to go to philadelphia anymore! it hurts! and she is right of course. so I am going to bed now and just called. she is still sleeping. I will go do the same.

letter to please touch muuem

I recently visited your museum with my six year old daughter. She is disabled and uses a wheelchair. We were very much looking forward to an experience where she could do what everyone else was doing. She was looking forward to a museum where no one would tell her "don't touch." No one said the words, but there were many ways she was excluded. While we did have fun, we were disappointed at the accessibility of all the exhibits. Some were too high for someone in a chair, some were too low. Some things did not allow her to get close enough to participate. Some exhibits were not deep enough to allow a child in a chair to reach the exhibit. We found the little town area in the lower level to be lots of fun, but the ambulance does not allow a wheelchair, even a really small one, to fit into the driving area. The seat installed there excludes anyone who can not walk up and sit on it. This means kids with disabilities must "ride" in the back of the ambulance area. Kids with disabilities dream of driving ambulances just like able bodied kids. It was very disappointing to see her rush to try something new only to find that it was not accessible to her. In speaking to other families with disabled kids, I found I was not the only one disappointed in the accessibility of your exhibits. I travel to the area often from my home in Minnesota, with my disabled and nondisabled kids. Sadly we will not be visiting your museum again. It isn't fair to my daughter to have to watch all the other kids play while she has to sit on the sidelines because of her disability. We appreciated the handicapped entrance, but the rest of your musuem needs to consider the needs of EVERY child, not just the ones without disability.