tag:blogger.com,1999:blog-12190562243405763822024-03-13T04:00:42.469-07:00ArthroadventureNot just a walk in the parkMoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.comBlogger57125tag:blogger.com,1999:blog-1219056224340576382.post-79827870926432583552013-04-10T08:30:00.002-07:002013-04-10T08:30:34.704-07:00For Sophie
http://teespring.com/runfeetrun if you read this please go and look at the tshirts we are selling for sophie to raise enough money to take her to a conference for people with her condition. She really deserves to go. SHe has worked so hard and been through so much pain. She needs to be with people who understand that this isnt like your brothers friends cousins neighbors milk man who had a broken leg once. People who understand this is a lifelong issue and a lifelong battle. She needs to see people with her condition who have jobs, have children, and husbands and live the American dream.
http://www.gofundme.com/2bpy20 is also a fundraiser for the same conference. We have to have all reservations in by May 28 for July conference. I am a very giving person. I give everywhere I can. I help anyone who needs it. This time, not for me, but for my daughter, I am asking for help.
So far we have had 3 donations and 2 commitments to buy shirts if we reach our goal. If we do not reach our goal no shirts will be printed. we do not even have enough for ONE plane ticket, much less hotel costs conference fees meals and a ticket for Me to take her.
MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-20657986664201817532013-04-06T20:13:00.000-07:002013-04-06T20:13:02.754-07:00Fundraiser for SophieSophie is doing a great job walking. We are trying to figure out the best walker for her to get her moving all the time. We have tried an otto bock and also a grillo. Otto bock is ok but Im not convinced its the best one for her and its huge. Grillo was very hard for her to work and she still had trouble standing straight. Meanwhile I am trying to raise enough money to take her to las vegas for a week to a conference there with a bunch of other people with the same condition she has. She needs to meet others with AMC, adults, kids, teens, all of them. She needs to see that her life can be like everyone elses. she can still grow up go to school get married have a family etc. she will just fine ways to do it her way. She really needs that encouragement. She often tells me she wont be able to have a baby some day, even though she really wants to be a mom someday. She doesnt think she will be able to because of her AMC. She needs to be where different is normal. where she can be Sophie for awhile instead of the girl in the wheelchair or the girl in the walker. She can be surrounded by other kids walking with walkers, using gait trainers, using walking sticks, using a wheelchair. She sees kids like that at shriners but that is a medical setting. She needs to see this in a social community setting. I am doing a tshirt fundraiser. if we do not reach out goal of 100 shirts reserved they will not print. Please go order one today! help our little peanut learn that she is just like everyone else. Its easy to say it but she really needs to FEEL it. www.teespring.com/runfeetrunMoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com1tag:blogger.com,1999:blog-1219056224340576382.post-74808342146015999822013-02-28T08:46:00.000-08:002013-02-28T08:46:56.656-08:00Sophie is doing so well. She is working hard to learn to walk with her new straight legs. she finally gets to wear pants again! working on getting a walker for her to have all the time. She still uses her chair a lot but really she has only been in two KAFO and shoes for a week. before that was cast and post surgical and all that. she has only been fixater free since January. so not yet two months. She loves to stand every chance she can get. but it kills my back. she is working hard at school, at home, and therapy. She is going to go go go. MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-12538013282863109592012-04-23T08:55:00.002-07:002012-04-23T08:59:40.553-07:00sophie is headed into external fixator June 6. ugh. details as they arise but this is the big surgery she needs to hopefully be a walker! she is strong and goes to PT and OT weekly. they are confident she will walk. I am too. SHE doesnt want to walk. she wants to RUN! and let me tell you nothing would bring a tear to my eye faster than seeing my original dream for her come true. I wanted to bring her home because I wanted to see that blonde hair bobbing in the wind while she runs on the beach. this is the first step for her to get there.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-80151785263213226412011-11-06T07:27:00.000-08:002011-11-06T07:28:29.508-08:00want a chance to win a cool camera??ever think about photography? <br />wish you had a REALLY nice camera? wish you could take better pictures of your kids and grandkids and dogs and cats? wish you didnt have to spend so much to have such a nice camera? well guess what! YOU have a chance to donate just 20 dollars to help bring a little boy home from Serbia. and in doing so YOU GET A CHANCE TO WIN AN AWESOME CAMERA KIT!!! camera, lens, bag, and more! go to <br />http://myianna.blogspot.com/2011/11/nikon-d3100-camera-giveaway.html<br />and donate so YOU can have a chance to win a Nikon D3100! kids sell wrapping paper for schools, and you could spend 20 bucks easily on school and sports fundraisers. you could spend 20 bucks easily buying a fancy coffee every day. but you really have a special opportunity here to spend $20 to give a boy a LIFE! and you could win an awesome camera for doing so! well? what are you waiting for? get on over and donate! lets get this little boy a chance at a real future in a family filled with love, instead of a cold sterile insititution where no one will love him as their own. 20 dollars people. thats all it takes. donate and you could win a camera! but if you dont you still win because you helped give a child the gift of a family! THAT is priceless.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-15663952169049988782011-10-12T05:56:00.000-07:002011-10-12T06:14:31.337-07:00well stella was a no showwe 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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-30178348868113914572011-10-11T14:31:00.000-07:002011-10-11T14:42:12.583-07:00tomorrow is Sophie's big dayTomorrow 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. <br /><br />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. <br /><br />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!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-38491748964556615652011-09-14T08:14:00.000-07:002011-09-14T08:18:44.262-07:00upcoming eventssophie and ben both go to Philly for visit to Dr VB at the end of sept. pre op visit for sophie and check up for ben. then, provided we can keep Sophie healthy this time, Osteotomies were scheduled for Oct 11 and now changed to Oct 12. It seems Dr VB's day in the OR has changed from tuesdays to weds. so She is scheduled Oct 12. We will now have a day or two between arrival and surgery so we can actually do something FUN! we usually dont see much more than airport, clinic, and ronald mcdonald house! I think we should hit some museums and have a little fun before she is laid up for weeks. I guess I better start planning meals for when we will be gone.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-16839903347396144022011-07-17T19:08:00.000-07:002011-07-17T19:10:37.395-07:00osteotomiessophie has a new date for osteotomies. October 11. this date suits me pefectly. she can go on homebound from school, thus not missing anything, and not missing the important first day. It does not involve a summer in casts. It means I wont have to leave the kids unattended here to go. it is a perfect date. now to keep her healthy until then!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-21504763086087882662011-04-12T12:00:00.001-07:002011-04-12T12:00:42.686-07:00wheelchair bluesSophie'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.<br /><br />.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com1tag:blogger.com,1999:blog-1219056224340576382.post-24523229453821963512011-04-11T20:28:00.000-07:002011-04-11T20:31:43.279-07:00New 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!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-37205795378815300032011-04-09T09:09:00.001-07:002011-04-09T09:54:02.954-07:00Another 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. <br /><br />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. <br /><br />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. <br /><br />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! <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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 <br />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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com1tag:blogger.com,1999:blog-1219056224340576382.post-60528190824330282132011-03-21T06:08:00.000-07:002011-03-21T06:17:26.567-07:00updateBen 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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-2743912789761886612011-01-21T15:42:00.001-08:002011-01-21T15:47:10.528-08:00a 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!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-64032577829079096202011-01-20T11:08:00.001-08:002011-01-20T11:15:05.201-08:00first PTwe 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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-81993479961731539752011-01-19T13:11:00.001-08:002011-01-19T13:24:12.038-08:00stiiiilllll waitingwaiting 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. <br /><br />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.<br /><br />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. <br /><br />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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-44626938699297509442011-01-08T07:51:00.001-08:002011-01-08T08:08:06.994-08:00another trip to phillykids 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. <br /><br />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. <br /><br />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.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com2tag:blogger.com,1999:blog-1219056224340576382.post-81153641565377852912010-12-10T13:43:00.000-08:002010-12-10T13:50:42.217-08:00whew! whatta day!sophie and ben are doing just fine. they came through the surgery fine. Ben didnt want to wake up and got combative. caught me in the face a couple times. he was still asleep though having no clue that I was even there much less that his flailing hands were making contact. he seems to be recovering a little slower than sophie but I gave him some pain meds and he is now playing. we took a nap when we returned from the hospital as our day started at 4am and we were completely exhausted by the time we returned at 1. They have had some crackers and juice and now moved on to cookies. Ben isnt very hungry and sophie really wants juice more than eating. Dinner in an a while and I dont know if they will eat it or not. I dont think they will be real interested in dinner but wait and see. Must return in 4 weeks. they initially wanted us return in ONE week and I was like hello! you could have told me this and I would have just stayed a week! but I cant come BACK next week. so they will have us back in 4 and then do afo castings and then leave them in short casts for a couple weeks until we can come back for the AFOs. Sophie got pink and yellow swirls for her cast and Ben chose purple with red swirls. pretty darn cute. the pharmacy at Temple filled our scrip and they didnt include a doser! so I hope that somehow I will be able to come up with one. for now we used the measuring spoon. Eric says the dose is way too high and too risky so I didnt give them the whole dose. seems to be working thus far.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-39155352447611171502010-12-08T12:29:00.000-08:002010-12-08T12:34:27.481-08:00tenotomyoff to philly this week for tenotomy for both sophie and ben. hope it all goes well and they dont have too much pain(and that they can deal with it calmly if they do, sophie tends to go into histerics) Leaving in half hour to head to Uncle Bobs house. then tomorrow to the airport. hoping they have room for us at erie ronald mcdonald house. My friend Becky is going to pick us up. she and her daughter Sammi are so nice and I sure enjoy having someone to chat with. so instead of feeling like we are going to a big city where we know no one it feels more like we are going to see an old friend when we get to see Becky and Sammi. and they are SO kind to give us a ride from the airport, saves us about 50 bucks!!! thanks so much for your time Becky, and your friendship, we sure enjoy seeing you guys! Will return home on Saturday and thankfully NOT an early morning flight. no 3am wake up calls for me! well unless the kids have surgery on friday at like 6 then maybe...I havent yet heard when we need to be there. not sure when they will call. they were supposed to call me weds since we will be in the air friday. wait and see I guess. details as they arise!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com1tag:blogger.com,1999:blog-1219056224340576382.post-54624385528112742602010-11-23T17:25:00.000-08:002010-11-23T17:39:04.734-08:00updatecasting is almost done for sophie and ben and then they will have tenotomy surgery and new casts for several weeks. No date for Sophie's Osteotomies. Sophie will need to wear AFOs (she calls them foes) full time to help prevent relapse. Ben already is used to wearing his full time. Guess I ought to invest in some smart knit socks for her. I am not going to find knee high socks in her size. Her feet are the size of an infant. She has been getting up on her feet in these casts. amazing! I cant wait to see her straight and in line!!!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-84121251989967729172010-11-03T08:52:00.001-07:002010-11-03T08:53:12.153-07:00due to scheduling difficulties we had to delay our trip to philly. We are going back tomorrow. new casts! Ben has gotten so he can stand on his and can almost let go and balance! amazing!MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-49706251432120055522010-10-18T19:08:00.000-07:002010-10-18T19:12:13.131-07:00kids are on their second set of casts. they got orange and pink last time(Ben loves pink!) and this time they both got blue. I told them they looked like blue jeans. Wonder how long we will have to do this. flying back and forth to philly is difficult and time consuming not to mention its hard to be away from the other kids. waiting to hear surgery date for sophie's osteotomies.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-78023477161789212222010-10-05T12:52:00.000-07:002010-10-05T12:56:59.434-07:00new doc new treatment plan<a href="http://4.bp.blogspot.com/_PL7SdQuefzI/TKuC9BVSzMI/AAAAAAAAAkg/4YEhi2gqqqk/s1600/013.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_PL7SdQuefzI/TKuC9BVSzMI/AAAAAAAAAkg/4YEhi2gqqqk/s320/013.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5524653352741424322" /></a><br /><a href="http://1.bp.blogspot.com/_PL7SdQuefzI/TKuC89GkaNI/AAAAAAAAAkY/K-9UZBrmvQM/s1600/010.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_PL7SdQuefzI/TKuC89GkaNI/AAAAAAAAAkY/K-9UZBrmvQM/s320/010.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5524653351605922002" /></a>MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com1tag:blogger.com,1999:blog-1219056224340576382.post-78524245817980441442010-09-26T10:51:00.000-07:002010-09-26T10:59:10.211-07:00New DOCTORS new plans and new CASTS!well let the adventures begin! sophie and ben are both in LONG LEG CASTS. both kids both legs. straighten out those crazy feet. this doctor is RUTHLESS in getting these feet into position. its hard for us to deal with as it hurts the kids a bit as the stretch is so tight. but this COULD be all Ben needs to have straight feet. we thought he had a rotation and would need a derotation but he doesnt! its all in his foot! hoping this works to avoid surgery until he is much older. Sophie on the other hand this is just the beginning for her little legs. the stretch is very tight for her and she complains a lot. but once she gets these feet straightened out we will work on her hips. then her knees. For Sophie's hands we will do nothing for the time being. As she needs her hands to motor. Ben needs one surgery on his one hand. its fairly minor when you consider what COULD be done. tendon transfer will solve most of his hand problems. It is a pain to go to philly for good care but we just werent finding it locally.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0tag:blogger.com,1999:blog-1219056224340576382.post-13288103601046988692010-09-04T15:09:00.000-07:002010-09-04T15:12:21.800-07:00one year ago<a href="http://1.bp.blogspot.com/_PL7SdQuefzI/TILD__BtjGI/AAAAAAAAAhA/ehCxRp6VWms/s1600/048.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_PL7SdQuefzI/TILD__BtjGI/AAAAAAAAAhA/ehCxRp6VWms/s320/048.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5513184397872696418" /></a><br /><br />these two were essentially helpless.MoonDoghttp://www.blogger.com/profile/11707506968348810606noreply@blogger.com0