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.

going public

I usually only post certain things here. but its time to get real. contrary to popular belief, life at our house is not perfect. it is not dreamy. some days it is barely tolerable. We have several special needs kids. and we have some kids who developed other special needs as a surprise. we have specialists. we have surgeries. we have therapists. we have fun and we have tantrums. Thus far the most difficult to deal with is mental illness. not mine. theirs. second to that is developmental delay. Physical/medical disabilities are SO much easier to deal with. I find the mental illness really wears me down. wears on my patience. the screaming irrational behavior is so hard to live with. the constant nastiness is difficult for me because most of the time its directed at me. either by default because I am here the most, or because thats just the way that child always interacts with me. the simplest request, the kindest rebuke leads to snarky comments and hurt feelings. the other kids dont understand the behaviors. heck I dont unerstand it. the blow ups get worse as the day goes on. as the week goes on. I do not feel that asking children to help take care of their own needs is asking too much. Things like putting their clothes away, putting their dishes in the sink, putting their lunch in their backpack(I dont ask them to make it, only put it in their bags), using their time wisely to be ready in time for the bus. given over an hour to get dressed, serve and eat their OWN breakfast, pack lunch, and brush teeth is not unreasonable. Certain children can get up, shower, get dressed, unload the dishwasher because they felt like being helpful, eat, take meds, brush teeth and still have enough time leftover to play with the dog. One child particularly likes to make the lunches in the morning. all of them. SOmetimes she makes them sometimes I make them. but it is never her JOB. if she wants to do it she does, if she doesnt want to I do it. but lunch is always made. and yet some other children can not get their act together and be ready on time. and all hell breaks loose and the brunt falls on me. I am tired of being abused by my children. I am tired overall. I am looking forward to going to philly and just dealing with one kids issues. so I am having a down day. and I'm letting my humanness show. I have a lot on my plate. most days I dont mind it. but multiple meltdowns before breakfast make for a hard day.

check out the cuties!

Sophie and Ben stole the show on last nights news!! check out my cuties! http://www.fox21online.com/content/activity-extravaganza-kids-disabilities

Preparing for a rough summer

Maybe it wont be as bad as I think. Sophie and I will be headed to Philly for a big surgery that is planned for June 6. Hopefully she stays healthy till then. Took almost a year to get this surgery date. Sophie will be getting herself an Ilizarov External Fixator. Or as I generally refer to it, an ex fix. Life as we know it is about to change. Sophie will no longer be able to scoot. She will wear the fixator for probably 3 months. this will straighten out her knees. Unfortunately we have to stay close to philly for the first month. So Sophie and I will be hanging in Philly for the month of June. July 4 is usually my favorite holiday but we have missed it several times in recent years and looks like I will miss it again this year. That makes me sad. I am sad to think of leaving my babies for a month. they will grow and change and I wont be here to see it. but Queenie must have this surgery if she is to walk. Sophie is going to be a handful during that time. I know this. I will be the only one to deal with it. the only one to take care of everything. of course I wont have to take care of anyone else in that month. but she can be a lot of work. I dont know how everyone at home will survive. then again maybe I am not so indispensable as I think I am. the girls know how to do laundry. they all know how to do dishes. some know how to cook a few things. they all know how to make a sandwich. I guess they will live. So many things I wanted to do this summer and now I wont be able to do it all of june. Hopefully July will be better and we will be home and can still see and do some things.