home again

we are home again. sophie is doing well. getting better all the time. I however am sick sick sick. miserable sick. eric is on call this weekend. the kids are mostly keeping entertained. although they gave me a hard time about helping out this morning. I really need to grocery shop but it isnt gonna happen today. dont know what we will eat for dinner. soup and sandwich maybe. need to get sophie set up for homebound so she can get back to working on school stuff. she is alert enough to do that. Wish I could get her back to school but I dont see it. its too hard for her to sit in her chair. and she is having to wear diapers and that would be embarrassing for her and humiliating. so I guess she stays home the whole six weeks. dont have a date to go back yet. need to contact the clinic and make a date for return appointment. I thought they would have given us that upon discharge but they didnt. didnt give me a script for 3 week xray either. so I have to chase taht down.

why

i ask myself WHY my kid cant be like other kids. why does she have to have contractures? why does she have arthrogryposis? why does she have to have surgeries and hurt? why cant she just run and play and not have to deal with all of this? and then I wouldnt have to deal with it either. but then I remember that if she was a perfect normal child she wouldnt be MY child. she would still be in Ukraine with her birth parents. but still its hard to be thankful that I have to put her through all of this. that I have to put all of us through all of this. it just stinks all around! I am tired of being away. tired of being nurse as well as mom. and its only just begun! I miss my family. I miss my animals. Miss my house and woods. my TREES! and I dont have any idea how I am going to get home. I mean I know HOW but the logistics of it baffle me, as I know how helpful airline attendants are(at least in my experience) I have a letter from hospital to hopefully get some help but I am NOT holding my breath. I just want to be at home, enjoying fall in my new house. and instead I am in Philly running back and forth from hospital to ronald mcdonald house and feeling guilty because I have to do some laundry and will be late to the hospital.

gettin ornery and bossy

and thats just me. sophie has a wee bit of bleeding in her old incision. but she is happy enough cooperative in general. I think we ought to be getting out of here soon. My guess is tomorrow but sunday is fine too. monday we fly home. Our roommate was in the PICU for a long time and just came back to us today. but we have visited with her family over and over and they ask about sophie and visit her. they have turned out to be very nice people. I was rather annoyed having a roommate at first but since they were gone most the time it wasnt so bad lol.

I am so ready to go home. i was ready a week ago! we have to put her in a fancy spica carseat on the plane. by we I mean ME and I am not sure at all about how its all going to go! I have only so many hands and I am supposed to bring carseat straps my bags pillow blanket roll stroller AND SOPHIE all by myself. NOOOOOO Idea how thats gonna happen. My friend Becky is supposed to loan me a rolling duffel to check as much as possible. but I still have this giant car seat that is called a HIPPO for a good reason! and since her legs have to be up in the stroller I cant put it in there. I just KNOW I am going to be pissed off when I get home. Im pissed off just thinking about it. airlines are NOT helpful. usually strangers are more helpful than airlines. I will have to carry her on to the plane since she cant go past 90 degrees. she cant use the aisle chair. but first I have to haul on and install the carseat.

we just got another roommate. her name is Bo and she is so cute, she even LOOKS like Sophie! blonde and cute! so its a party in here. they are from netherlands. its a multicultural room here for sure! I guess I dont have much else to report.

the ongoing saga of the osteotomy.

tomorrow is Sophie's other osteotomy. meanwhile somewhere last night they took out her iv. it backed up maybe or something. no one really knows why it was removed. so today they came in to try and put a new one in. I said really, you didnt put an iv in her when she was outpatient coming in. you waited till she was asleep. well they wanted blood for a type/cross. shoudlnt they already HAVE that since they ALREADY gave her blood products last WEEK? so they poked, and she screamed. and they moved the needle around, and she screamed. and they wiggled and moved and she screamed and screamed. and then they gave up and pulled needle out. she didnt even BLEED where he took the needle out. so I thought they gave up. turns out they only went to get bigger guns. This time I said lets step outside. I discussed my concern at poking her again and again knowing they would get nothing. and again stated I just cant understand why she MUST HAVE IV RIGHT NOW. I told them they could look but this guy looked at her arms while I cried in another room. I wasnt going to be the one to hold her down as they use her for pincushion. she screamed. she hollered. in the end he didnt even poke her. there was no point. there was nothing he could see that would he would be able to start an iv from. so I am to sit here all night pumping her full of fluids so tomorrow in the OR they will be able to find a good vein.

after all that she fell asleep. sweaty sweaty sweaty! from screaming and from sleeping under too many blankets. so her bed was all wet. I changed the bed for her and she is happily watching tv now. We also have a roommate now. a 14 year old girl named Fanny. Fanny is Amish. Her parents are here with her, along with her grandparents. and they all sit here. all day. they have been nice enough and chat a bit with sophie and me. they came from Michigan. but so much for shunning the modern conveniences. The grandparents and the father left and the mother spent TWO HOURS on the phone. they dont watch tv. they read only their bible as far as I can tell. Fanny is very quiet.

update for those who dont know whats goin on

sophie had surgery last week on weds. it didnt go so well. there were complications. I knew when Dr VB called a conference in the middle of it that something was wrong. due to the complications, she lost a lot of blood, got a unit of blood and then they were unable to continue the scheduled surgery. They did get ONE leg done. the other remains the same as it was when she went in. its casted just to keep the other leg stable but they didnt do anything to it. so we are still here in PA. She had a bit of a hard time recovering and we just came to the floor today. She has been in ICU until now. meanwhile she has turned into a bit of a brat. so today was time for tough love and lemme tell you it didnt take long before she was back to being a sweet love of a child. the other leg is scheduled for tuesday. but it may have to wait until thursday. meanwhile we are camped out here at shriners. I go back and forth to ronald mcdonald house. they got her up in a chair today and she was none too happy about it. she is currently resting quietly beside me after I pulled rank and turned off the tv because she doesnt want to sleep at night, just watch tv. THAT isnt gonna fly when we go home so no reason it needs to go on now.

She has been a bit manipulative but thankfully we have GOOD and understanding nurses. Ally has been the best. It is very convenient for sophie that her pain comes at the very moment she doesnt like something. oh you are leaving to go to the bathroom? OW OW OW!! I cant watch tv? IM GONNA BARF! you want me to sit in this wheelchair because there arent any sheets on the bed yet? WA WA WA MY HIP HURTS!! you are making me sit in the sunshine for five minutes? MY KNEE HURTS!!

she calls anyone who comes in the room "doctor" and if she wants something she bypasses me altogether and yells DOCTOR! DOCTOR! I ask myself why I am still sitting here if she only wants them? its hard to be a kind and loving supportive parent when she is being a poop. she is not in as much pain as she was in the beginning and she shows it by moving around and talking and as long as she is getting what she wants she is fine with the world no pain. so today she was just ornery. a good nights sleep ought to help with that. so now you know about as much as I do.

I sure miss home and my husband and my kids and my dogs and my fireplace and my house and my chair. its very warm here. a light sweater is plenty. and I am missing my mornings by the fire. missing evenings by the fire with Eric, my dogs at my feet. missing sleeping in my own bed. even my kitchen! at least I know at home when its meal time its something I like, I dont generally cook stuff I dont want to eat, but here its a crapshoot. I might get to cafeteria before they close, or i might not. I might like what they are serving or maybe not. thankfully I have some fruit in my purse from RMH.

well since miss thing has not been sleeping through the night I ought to go to bed here since she is going to wake me again and again. her good nurse Ally wont be back till monday. we will miss her!

stella was a no show.

we were very disappointed. but some chocolate cake helped. Today we leave at 1045. supposed to arrive at 11 and surgery isnt until 2. Sophie cant eat, which means I cant eat! and man I am hungry! I might have to hide in the kitchen and get a bite of something while she is distracted playing. She is scooting all over, and there are so many things that will change with this surgery. She probably wont be able to scoot. at least not the way she does now. her legs will be better aligned so getting dressed will be easier, thats a good thing. getting her into and out of carts and car seats will be different, I dont know if it will be easier or harder yet, I just know it will be different. I dont know whether to bring the stroller today or carry her? my back is killin me. its raining out and I dont know if Beckys car can hold te monster stroller. and it would just be one more thing to move around and keep track of. so maybe leave it here for the time being. Since surgery isnt till 2 she probably wont be back until 5 or 6 and she will probably be sleepy off and on through the night and I can always come back for it tomorrow. so I guess I will carry her. Better take some ibuprofen though. She can go barefoot I told her because she wont need her boots and I dont wanna carry them around while she is in surgery.I think I can probably throw her straps in the trash. she will need new ones when she gets new boots. and tat wont be for 6 weeks. I have been very nervous about this whole ordeal. the surgery, how will it go? will there be complications? will it be successful? the recovery, how will it go? will she be pissed off? will she be calm? will she be snarly? I just dont know the answers to any of this. but I am ready. she is ready. She is happily playing with her princess doll. I suppose I better start looking at getting my stuff together for the day. thinking to change bags for today. so need to put my purse stuff in backpck. wish us luck! think of our dear sophie! I feel calm, Im sure it will be ok. I know this is all rambling but I dont have anyone to ramble on to right now....I miss you Eric!

sophie's big day

Tomorrow is Sophie;s big surgery. well the first of many I suppose. She is not at all concerned. She only wants to be sure that she will NOT be awake when they put those pesky casts on! I assured her she wont be. We are excited for the outcome. Putting her own pants on and underpants on will be a possibility. she can never get them over her flopping outward legs. Surgery is scheduled for 2. We need to be there at 11. unfortunately she has to be npo after 1030am, and only clear liquids after midnight tonight. I told her we would stay up late and have a snack. Surgery is scheduled for 3 hours. may be more may be less. hoping for no complications and NO spica.

Today Sophie and I walked for HOURS, or rather I walked and pushed her in stroller for hours. We went to see the liberty bell. we saw lots of history and historical sites. lots of stuff about Ben Franklin. Just wasnt as much fun without Eric. I kept thinking how he would love it there. maybe someday he and I can come back.

Tonight is therapy dog night here at Ronald McDonald house Philadelphia. Sophie is beside herself waiting to see STella. She is a mastiff, and we met her several times before. We are both excited. I love that dog. and hopefully she will relieve some of my worry and stress over doing this whole thing alone. a little doggie snuggle time, a long hot bath and I should be good to go. Sophie is such a good little traveler. she is pretty easy going about anything and everything. She has been happily entertaining herself with a little notebook and pen for almost an hour. but now its almost time for dinner and we are parched from walking all day. Time to go get a drink and some dinner. and then STELLA TME!