Lengthening - Day 12

We had our first follow up with Dr Standard today. He was very happy - already 1.4 cm gained. We are aiming for 7 cm total. From what I have been hearing from others, that is very aggressive. Eden has been experiencing pain in her foot, an indication of nerve issues. As expected, he said we should slow down a bit. So instead of 4 turns a day, we will do 3 turns on odd days and 4 turns on even days. Tracking the turns should be interesting!!! We have a color code system now they did in the hospital, 3 greens and a red. We turn to green three times, and when we get to red we are done for the day. With 3 one day 4 another this does not work. We will figure out a new color code when we get home. I am sure we will mess it up at some point. Eden now does the turns herself, it is pretty cool. The part that freaked me the most seems to be the easiest in the end. It is everything else that is difficult. Walking, standing, cleaning, dressing, sleeping, bathing, need I go on?

Eden is doing fine off the pain meds during the day, but at night she is in pain. So we do not sleep much. Exhaustion is setting in for us, Eden is ok though, well - she is cranky here and there, but who can blame her? The Dr suggested using the valium to help her relax and ease the foot pain at night. With all the meds and vitamins, she is not cooperating much. I hate forcing her to take meds, but we may get to that point soon so she can sleep (ok, so we can all sleep).

We met another little boy from So Jersey here for the same lengthening procedure. They just got here and we are leaving, but we will try and stay in touch. We were cleared to do PT at home, we are using the same practice that did PT last year after Eden's hip surgery - Rainbow Rehab. I will continue to come down once a week to Md for PT though just to be sure we are on track. They really are impressive here, but they are giving us terrible PT times. With Eden not sleeping at night getting her up for a 9 am PT appt is not easy. We have asked daily and they will not move it. Although we value the expertise we will try at home. We have to come every two weeks for check ups anyway, so it is just two more trips a month. Wish there was frequent driver miles!! Thankfully I took time away from work so I can do this for Eden. I plan to do the pool therapy with her daily, she loves it and it is something we can all do together. PT will continue to be daily, so we will stay busy.

We are still one day at a time. I hope the therapy goes well at home. It is actually my most relaxing part of the day right now knowing she is in good, skilled hands. It is all the therapists here do - they specialize in pediatric limb lengthening. They made a video for us to take home, so keeping fingers crossed that it continues to go well. If it does not go well, I will have to come back to Md with her, it is too big a risk not to do this right. But we will cross that bridge IF we must.

Eden is still not walking much. At most she goes across a room. I hope she gets her confidence soon. Even just standing would make caring for her much easier. I hope comforts of home may help with this. We also have to keep an eye on her heal, she is getting a bit of a sore from her foot laying still in bed. We caught it early, so we need to prop it, but she should be fine.

There is so much to do - this is more complicated then we ever thought. But luckily Eden's good mood during most of the day keeps us going. I hope one day she will be able to tell us we did the right thing by making her go through all of this. We see all the other kids here at RMH and know we are lucky, but at the same time makes me question if this was even necessary. So, still one day at a time. If I think of two more months, I am overwhelmed.

Chris' strength is a blessing, There is nothing he can not do and nothing he is afraid of, he is a rock. Eden is lucky to have him as her father, there is nothing he will not do for her.

So, will write more from NJ!!! Again, thanks to everyone for the support.

Lengthening - Day 9

We were home for the weekend so I wanted to focus on the family. We all enjoyed being home. PT was very successful last week. They got Eden walking short distances but there was a bit of progress each day. We all had a good time at the RMH. We got tickets to the Science Museum and it was amazing. We hope to go back next week. It is right on the harbor so we walked around and toured two of the ships. We had an impromptu lunch at Fogo De Ciao and the kids LOVED it. Eden cooperated and slept thru the entire meal. It was fun to see how the kids reacted to good service at a quality restaurant. We will go back our last week here as a treat for us all. Maybe Eden will even stay awake next time.

Eden enjoyed being home. She spiked a fever which sent us into a tailspin. Infection? Swimmers ear? Regular bug that kids get? We called the on call Dr and he had us text a picture of the pin sites that we were concerned about. He said it looks red but nothing unusual. gee, thx. But wow, technolgy can be cool. A friend came by and looked at her ears and they were clear....but by Sat the fever broke so we relaxed. Eden walked a bit at home with the walker. Everyone got really excited. By Sat night she even asked for the walker to get to the door, where her chariot (AKA Daddy) waited to help carry her into the car. She also started letting me carry her as bit more. After months of me telling her she is too big she needs to walk, I now have to convince her she is not too big, I can carry her. It was a relief to get through to her and know she feels safe with me.
Sunday she wanted to go into the playroom so the girls got the walker and helped her, she fell which was scary but no real damage was done. The girls learned an important lesson to get one of us to help support Eden while she walks.

We are back in Md, by tomorrow Eden should have added 1 cm to her leg. We have a check up with the Dr on Th, we hope for good news. PT says all is going well and they think it is realistic for us to stick with them for two more weeks then begin PT at home. So, fingers crossed. We are here just with Eden. My family has really stepped up. My 20 yr old niece is with the kids for a two days then my sister. And of course my parents are always there to help; feed us, entertain the kids, laundry, etc, my mother is making covers for the fixator which has been a huge help. Eden does not like looking at it much, and well, who can blame her? We drive home Wed to get them and will finish the week here together. The kids said they will stay here as long as we want, it is fun. So I guess our hope of making it seem like a vacation is working. The 3 hours we spend at the hospital in the am doesn't ruin it for them. What great kids. Eden is not happy to be here without them, so I hope Wed comes soon.

Eden is still very scared and in pain, being around her brother and sister is def a comfort to her. Thank g-d Chris is here with me, with barely standing it takes both of us to get her ready for PT without hurting her. 4 hands are better then 2! I always joke I do not believe in evolution because moms would have more hands....and Chris is great at playing games and I handle the soothing times and meds. We make a good team. He returns to work soon, I am optimistic Eden will be stronger so I will be able to do it on my own. The kids are willing to help, but I have to remember, they are kids. It is a fine balance not to lean on them too much, but to also let them feel they are helpful. We started her on antibiotics today because she does complain about a certain pin site hurting so the PT said to just do it, she had the fever, she says it hurts, we might as well. Poor kid, even more meds to get into her. She is sick of the meds already. We may stop the Valium before PT so at least she has one less dose of meds to take.

I have gotten ok with wound care and bandages. I do not enjoy it for a second, but we do what we have to. Chris turns the crank like a pro, guess it is the handy man in him. I have done it a few times. She does not seem to notice. Ayla is so into all of this, she has decided she wants to be a surgeon. G-d bless her, she may just do it. Jacob is fascinated by how the fixator works, but his stomach is like mine so he does not get too close, and you can see his heart breaking when Eden cries. Adina is the most shocking, she is willing to do whatever to make her little sister happy. She is not freaked like I thought she would be. I am so proud of her.

That is all for now. We are resting at the house and will run some errands later today. We told Eden we will get her some play dough - her favorite activity - we hope this will cheer her up about missing home.

My plan it to post again Thursday after the Dr appt. Stay tuned...

Lengthening - Day 4

We are one week post op, so now the focus is on limb lengthening. We have been turning the screw, and friends - it is a screw, we actually use an allen wrench!, for 4 days. 1 mm per day, so Eden's leg has grown 4 mm. We are hoping for 70 mm... The turning does not seem to bother her at all. We now do it when she is awake even.

The fixator, on the other hand, does still hurt and frighten her. She walked a bit in PT yesterday, crying the entire time, but she did it and we were all there to cheer for her. We were in the waiting area and we heard the PT cheering her on, then all the other kids in the PT started to clap for her so we got up and watched from the door and she walked over to us. we keep telling her, a bit every day. There is another girl Eden's age who we know, her name is Madeleine. We met them two years ago this fall at high holiday services at my parents synagogue. They are the ones that told us about the International Center for Limb Lenghtening in Md, and how our journey began. Maddy had surgery a few weeks ago and is walking very well with her walker. We are hoping Eden will be there as well in a few weeks. But for now, Chris is her personal transport.

Yesterday was a big day for me though..I carried Eden a bit more and helped her to the bathroom. She prefers when Chris does it because she is afraid I am not strong enough. I am worried as well, but I told her mommy can do it and she let me. It was not easy but we all survived. Chris saved all his vacation time so he is with us for a while, but eventually this will all be on me, so I need to get more comfortable. I still have a hard time touching the fixator - it is all I can do to hold back my cries demanding the Dr take this mid-evil contraption off my daughter. But I bite my tongue one day at a time and hope it will get easier on all of us.

So we are settled into the Ronald McDonald house. We arrived Wed around 12:30. Eden was asleep when we got here and pretty much slept until 4 pm with a minor interruption from us to move her into a bed from the stroller. Adina fell asleep as well, but Ayla and Jacob (aka A/J) took off to enjoy all the fun the place has to offer. There are some kid guidelines by age-

• over age 10 can be unattended but a parent must be in the house (this is true for anyone 21 and under!)
• 6 to 10 a parent must be in the area but not in the same room
• under 6 a parent must be in the same room

We knew Adina was beat when she said nothing when A/J took off. Chris and I dosed as well and organized the room and unpacked. We are pretty cozy, there are two rooms, three beds in one room for the kids and two bed next to each other for me, chris and eden. It isnt huge, but we are just in the room for sleeping. There is a rec room with pool, air hockey, ping pong, a play ground, swings (Eden enjoyed it a bit after convincing her the swing is safe for her), small basketball court, computer/game room and common areas. There are several kids A/J's age so they are all hanging out together already. I think they had fun yesterday. Ayla said she is willing to stay here as long as we want to...By 4 p A.J returned and Adina and Eden where waking so we regrouped and went to eat dinner and see Despicable Me. Dinner is served here most nights by volunteers but last night was Sloppy Joes, so we opted out. Breaakfast is also served, will have to check that out.

We plan to site see a bit so maybe this is a mini vacation as well. Eden enjoyed the playroom as well, see the picture. I had the kids clean the library area so they can be a bit helpful while here.

As for today, we wanted to let the kids sleep and Eden's PT was at 8 am, so Chris took her and I am staying back with the other kids. The house offers free txt to area attractions on a first come basis at 9 am, so I will try and get us some txt to some activity today. We also plan to go to the harbour, but in this heat we will see how long we last.

I just got an update from Chris that PT is going well. Eden has excellent motion in her knee, always a good thing, once it gets too tight it gets painful. There is an hour gap between therapy and pool time so Chris is taking Eden to the clinic to get her pin sites looked at. One looks red. Several people looked at it yesterday and said it was just healing, but Eden seemed like she was in a different kind of pain and maybe a low fever as well during the night, so better safe then sorry. We are cutting down the pain killer doses but want her to be comfy, it is a balance we are still trying to figure out.

That's all from MD for now...maybe I should wake the kids, it is almost 9 am!

Eden had a great first day of PT. We were asked not to stay int he room and she willingly let us walk out. We chatted a bit with other parents whose children are undergoing lengthening. The two women have daughters who are little people and they are lengthening arms and legs, this time it is legs. Amazing what this institute can do. What we are doing is cake compared to their process. After her stretching we took her across the hall to pool therapy. She was hesitant at first, but quickly caught on. It is quite a process we have to go through :

1. put on bathing suit, bathing suits need to be retro fitted to get over the fixator. Some use string bikinis or cut the sides and sew in Velcro. I found adorable suits online at www.snapmeswimwear.com that have snaps on the bottom! Turns out it is a NJ mom sick of her daughter's suits touching the gross floors at the beach and swim club! Sound familiar? They go up to size 4 - check them out if you have ever been disgusted for this reason, she was very generous when we told her shy I was buying so many suits, so I would love to send some business her way.
2. sanitize the shower seat
3. rinse the fixator leg - this is wear Eden got excited. She took the shower head from me and had a ball washing the fixator!!!
   
4. put her in the electronic seat to lift her and then get her into the pool - see picture above. She hesitated at first, but on the way out thought this was a cool ride.
   
5. post therapy - shower and dress (without getting soaked ourselves, I failed at this today)
   
6. clean pin sites
7. bandage pin sites

then we are done...luckily Chris is with me. Eden needs to be carried a lot and she feels much safer with Daddy, as do I. She walked in the pool and let the therapist do all the exercises. I think she is excited for more tomorrow.

She made it with very few doses of pain med today. Tonight she is sleeping in Ayla's bed - they are both thrilled to be together and its the first time in over a week Chris and I don't have her in bed with us (and I am blogging!!! ; ))

Bright and early we all pile into the car and head to Baltimore for the rest of the week. I hope it will be fun all being together. One thing for sure, Ayla gets to shower Eden tomorrow post pool time!!! Back home Fri, stay tuned.

Post Op Day 6

It has been an interesting few days. The highlight was definitely Ayla and Jacob returning from camp Ramah. They were gone a month and Eden was so happy to see them (well, we all were - I cried like a baby). Ayla and Jacob knew the surgery was this summer, but we decided not to tell them it was happening while they were at camp so they would not worry. They were eager to see Eden once we told them. They told us they would have liked to stay at Ramah all summer, but talked with each other about staying and decided not to ask us, and knew Eden needed them. Amazing kids...and they are right.

Eden is happiest around people. She has had two friends come visit (thank you Jessica and Molly) and these kids are great - they just play with her. They don't care she has a robot on her leg. They are short visits because Eden does get tired, but she enjoys them. The few moments of normal are good. My sisters and niece also cam e for a visit which was fun - Eden did not even care when we left to go pick up Ayla and Jacob. It was great of them to come check in on us. My parents of course are a constant source of support and help. Eden lights up around them. My 20 year old niece seemed a bit jealous my dad cuddles with Eden, she does not recall him being cuddly when she was little.

Some wonderful people have also sent dinner and some goodies - it is all is very much appreciated.

Now for some meaty stuff...

We had an orientation at PT today. We decided to drive back and forth to give A and J time at home after being gone for a month. So we will drive it a few days and on Wed we all go up to stay at the Ronald McDonald house. We will be there for three weeks pretty much except on weekends.

PT was INTENSE. Lots of kids with fixators - Chris calls the hospital a factory. They were happy with Eden's preliminary range of motion. They asked how many cent, we were going for and we said 7 - two therapists said wow. A bit daunting. They said it is aggressive but Dr Standard knows what he is doing. They also said the first 2 or 3 cent, will be easy, it is the last few that the motion gets compromised and stretching is at once more difficult and more important. There were older kids in the room with fixators on both thighs and shin bones. They were moaning and crying in pain. It was hard to be in the room. Eden did not notice much, she managed to stay focused on Dora the Explorer, but she was really doped up. Super potent tylenol and valium, breakfast of champions. The PT got her to stand with the walker and take a few tiny steps. We were standing across the room encouraging her to come to us. Def reminiscent of a baby's first steps. But remember, we have 4 kids, we never encouraged her to walk, it was easier when she did not. But our kids were all early walkers any way. We hope this trend will continue through this process and give her strength. She cried while doing it, but she did it. We will hope for a bit more each day.

They showed us where pool therapy will be and the process. For all of you saying how strong I am, this is where I lost it. This is all so complex. and I am not into gore, I am the one that can not watch a medical show and now they are talking about pin site care and infectious diseases and sanitizing and OMFG! I am sure eventually I will get the hang of it, but this is not going to be easy. We had no idea what was coming. Eden goes into the pool tomorrow and seems excited, little does she know it aint like it used to be. No Dad throwing her around...we will see how long she thinks it is fun. Lets hope for the best. The therapist said pool may not be so critical for Eden since she is so young, but they will try and see what happens.

We also explained our plan is to start PT there but then continue at home and maybe just come to them once a week to verify all is going according to their plan. They seem optimistic three weeks may be enough time with them. Of course, she said Eden was one of the easiest 3 year olds she ever worked with, that is our Eden.

We drove by the Ronald McDonald house to check it out and make sure there will be room for all of is and it does seem it will be ok. So we left home around 6:30 and were home by 2. Not too bad. Eden was doped the entire time. It made it easy I guess, but weird. We will see what happens tomorrow when we dose her. BTW - the meds are requested by the DR and PT so she is not in pain or too stressed during therapy. I do not support drugging 3 year olds as a normal practice. We are cutting down the pain meds during the day to every 6 hours instead of 4. She seems to be handling it well.

Tonight Ayla, Chris and I cleaned the pin sites. Well, mostly Chris and Ayla, I find it pretty gross. I will have to get used to it, but it is going to take some time. Or, I may keep Ayla by me at all times. She is remarkable. She better be a Dr, it would be a waste if she was not. She had a gentle touch and such a calming manner with Eden, Eden even asked Chris to stop and let Ayla do it! Jacob will do anything for Eden, he is at her service, but this stuff is not for him either. It pains him to see her like this, he has had to leave the room a few times to collect himself. But he is so attentive to her needs, she is lucky. And Adina, she is loving Eden and paying with her a ton.

A few other small milestones, Eden sat at the dinner table for a short time with us, a first. She was on Chris's lap, but she was with us. I hope each day we can get a bit more normal.

Chris has turned the crank for two days and it doe snot seem to hurt her at all, that actually seems to be the easy part. If it all works as they say, she has added 2 mm in length in two days.

I guess that sums up where we are, another early day tomorrow to get to PT by 9 am. Thank g-d Chris does not mind driving....g'night

Homecoming

Well, Ronit spoke to most of what I was going to post about but I wanted to add a bit. It was a great feeling to be home again. Especially after the night we had and the fun we we had with the OT before we left the hospital. When we got home Eden got comfortable on the couch with Savta doing sticker books and other activities.

While they played I ran out to get our new wheelchair. We got a Bob jogging stroller that she fits in nicely. To try it out the four of us walked over to our friends the Keims who are just around the corner. It was nice to be out of the freezing hospital room so I didn't mind the 90 degree heat at 6pm. The Keims were having a going-away party for their daughter Sammy. They had a women painting the girls nails and eden even got in on the fun!


It was cute. While at the party she started showing everyone her "robotic" leg. It was good to see her getting more comfortable with this device on her leg. While at the party she also ate for the first time in 12 hours. She had pretzels, yogurt, and some cookie cake. After we left the party and came home she had some ice cream as well. She seems back to being herself again.

Now we are trying to figure out how to sleep. She has to be woken up to take her pain medicine every 4 hours. Its like having a newborn again. We moved a bed into our room next to ours so she can sleep with us.

Its 10pm now and time for us all to go to sleep. We'll let you know how the night goes.

Enjoy

Post Op Day 3

The day did not start off so well. The nurse took Eden's catheter out last night around 8 then she went to sleep. At 2 pm she came in to give pain meds and informed us Eden must go on the potty or they wouldn't discharge and anted us yo try and get her to go. Again, it was 2 am! This did not go well, it resulted in a very upset Eden. Obviously half asleep, doped and tired she did not go. We finally got her to calm down and we agreed to try again in the morning - 6 am. Imagine trying to fall asleep after that, the adrenaline was pumping. I think I fell asleep finally at 4:30 and at 6 am, there was nurse Kristen, as promised. Eden was asleep so we had to wake her. Again, this did not go over well, but Chris held her over the toilet and or trooper once again came through and made pee! We watched some TV and all fell back asleep. We awoke to PT, OT, PA and Social Worker visits. Good news was the discharge papers were signed but they still wanted a PT session, we had to get meds and OT was going to make a plate to help keep her foot straight, it was flexed which could lead to nerve complications. It was ridiculous, we waited around all morning and the plate is ridiculous. We will figure out some thing netter on our own, The OT was a tool, clueless. She freaked Eden out again, just what she needed. But we calmed her down and where out of there by 2 pm. We arrived home to get Adina off the camp van, it felt so good to have her in my arms.

Chris ran out and got the BOSS, and Eden said no that is for babies. But she got in and was pretty comfy. We walked Adina over to her friends house who is leaving for sleep away camp tomorrow for a GNO send off. There were a few girls there and Eden finally livened up and was playful, she started showing her robot leg to people! So, definitely a good move taking her out.

We got home and Eden went potty twice, she even managed to sit on it herself, not comfortably, but she did it and made all her business. I am sure it will get easier each time.

We hope to get her standing tomorrow, but she FREAKED when PT tried it today. They say it is normal, so baby steps. She will be walking in no time, positive thoughts.

Chris will do the next post, stay tuned...

Post Op Day 2

Very interesting and productive day. Eden woke up in a great mood, alert, chatty and even ate a pink frosted donut from DD. The PT came by, she is sweet, her name is Brita, and we did PT. I did most of it this time with Brita showing me what to do. Moving Eden's leg and holding the fixator was freaky. I could feel the metal, but I kept it together.

We took Eden for another walk in the wagon to the playroom. I brought my blanky with me, (yes, I have a blanky that my grandma made me!) and that is all Eden wanted to cover her up. Once in the playroom, we had fun. The toys are so-so, missing lots of pieces but we made do. Chris was good at improvising games. The PA came to talk to us about pain managmeet and options, and was trying to sway us to keep the epideral in longer, the longer in the longer the stay, so we wanted to see about just bringing the dose down and see what happens. When she looked at the monitor she realized the dose was already pretty low, so based n how well Eden was doing she agreed to go ahead and stop the drip. We gave her oral pain meds and she seemed fine. Next they removed the catheter and then the IV, so she is tube free. That means, she can be released tomorrow!

We had our first lesson on pin cleaning. They call the screws going into Eden's bones pins. Nice try but lets call it what it is, they are screws in our daughters leg. And it is nasty. There are 9 of them. Eden was hesitant at first but started to touch the fixator and was counting the screws. I am sure each day it will get less strange for all of us. We are instructed to not clean them on a regular basis, only when there is puss (yuck) etc. Otherwise we just rinse with water and keep covered with gauze. Keep it covered? No problem. Ayla gets home Sunday and she loves this nasty stuff, there is a good chance she can do it for us! We were also told it is not a matter of if it gets infected, more of a when. We were told to constantly have a Rx for antibiotics and pain killer and we should keep an eye when we are running low. Most pharmacies do not carry the pain killer they will give us because it is so strong so when we are here for our check ups every two weeks we should be sure to get a refill if we are low. No one said this would be easy, but it is pretty insane when you think what we are doing!!

We got the walker and wheelchair today. I tried to lift the wheelchair and that was not happening so we sent it back. We are buying a BOB jogging stroller instead - that was recommended by several people. I need to be able to get her in and out of the car and with that wheelchair it was not happening. She isnt too into the walker but we will ask Adina to use it for a few minutes and I am sure that will make Eden want it. Guess sibling rivalry can sometimes be a good thing.

Eden managed to stay awake most of the day, she finally napped around 3. Chris and I tried to rest but the constant flow of people into the room is ridiculous. There was no time for rest with OT, PT, Social Worker, anesthesia, PA, Rabbi, resident, fellow, RN, Pharmacist and I dont even know who some of the other people were. I am sure you know this, but there is no rest in a hospital. Our RN tonight is awesome and has been a great help - we had her Tues also. She managed to get the orders changed so she would not have to wake Eden so often during the night. But, she did strongly recommend we give her pain meds every 4 hours, even during the night for the first week. We are equating this to having a new born. But at least she is potty trained, can feed herself and talk....

We plan to be home for the weekend, Ayla and Jacob return from sleep away camp Sunday (YEAH) and we will drive back and forth to PT for Mon and Tues so the kids can have some time at home before we drag them down with us.

Technology has also been great. I chatted online with my uncle and a few cousins in Israel today and am hearing from people I have known my entire life and through different phases of life. It is pretty cool. Our family and friends from near and far are with us through all of this, it is a good feeling. : )

As for this pic, she was not getting sick. Since she had a stomach bug a few weeks ago she keeps saying I am going to be sick, and she did get sick twice on Tuesday, but has been fine since then. But, the bucket has become a crutch for her and she is even sleeping with it at times. Oy...but if this is the worst, we are lucky! Needless to say, it is coming home with us.

One last thing, a special shout out to a few people...

• The Fox family that hosted us Monday night and visited to keep us sane. Good luck with the flood...
• The amazing people who saw the post about sending e-cards and were right on it, Eden loved opening them
• Thanks to those that sent balloons, Eden loves them and cant wait to show her sister
• Thanks for the activities to help keep her busy, stickers and coloring and nail polish, we had fun
  
• And a special friend who figured out this online craziness just to stay informed, you are the best Joel!

That's all for tonight. Will most likely post again on Monday after our first PT session.

Send Eden an e-card

http://www.lifebridgehealth.org/sinaibody.cfm?id=2934


send Eden a card electronically, she is room 372

Day 1 post op

All in all, we had a good night. Eden slept through minus the wake up every 4 hours for vitals. She handled it like the trooper she is and went right back to sleep. I slept in bed with her and enjoyed being cozy, but sleep not so much. Chris slept on a pull out chair in the room and it was ok. Considering he never sleeps during the week, he actually got a decent night!

We ordered all of Edens favorites for breakfast, but she did not eat. Thanks to advice from many of you, Chris ran out and got DD munchkins for the nurse staff. They seemed to enjoy it.

We had a visit from OT and PT and got Eden into a wagon and took her for a ride to the playroom, She resisted at first but them did not want out of the wagon, She enjoyed playing with a baby doll.

The highlight was def a visit from her grandparents, as you see in the picture. Eden livened up and enjoyed playing with them. She is still not fond of the fixator, but when our surgeon came to visit she actually said yes to allowing him to look at it. She even says no to me and Chris. Interesting. He is pleased with how it looks.

Eden had her first PT session today and handled that well. Could be because of the epideral...but am thankful for her not feeling pain.

Her diet today consisted of pretzels, goldfish, potato chips, gummy bears, a banana and yogurt. Not the best, but we are happy to get anything we can in her. She spiked a bit of a fever this eve, but the dr said that is normal. So no worries yet.

We ended the night with her playing and she pulled out her IV. The nurse put a new one in, she did not love it but handled it well. The nurses said they wish every three year old was like her.

Tomorrow we get her wheelchair and walker, fun. We also learn how to clean her fixator, this will be a daily ritual.

So, like I say, game on.

Again, thx all for the text, emails, calls, facebooks, etc. The outpouring of support is keeping us going.
Good night for now....

So this is what it looks like. There is a bar attached to her thigh bone, yes attached and it sticks out. The bone was broken right above the knee. Our Dr does pretty work, minimal scarring but he said when she is 18 he will fix her up nice with plastic surgery and really get rid of the scars.

There are also screws below the knee with a hinge connecting the pieces to provide support and re-align the knee as it was not quite right.

It is pretty weird and remarkable at the same time. It will take some getting used to, but she is still our beautiful Eden, only a bit bionic. She did not want us to take a picture, so she is well aware that there is something different about this. being the meanies we are, we took it anyway, but waited until she was asleep.

One last comment on the day, then we will try to sleep, we have only been up for 17 hours. A special thanks to Uncle Amnon who came by for a visit. For once his business travel worked in our favor - he was in the area (kind of!) Brightened up the entire day

we are settled into Eden's room, we luckily got a single so Chris and I both plan to spend the nights here with her. She is drugged but comfortable. We showed her the fixator (pic to come soon) and she was expressionless. Guess that is good. She told us she is feeling better. She was pretty scared post op, but seems to be ok now.

Eden getting prepped for surgery. They gave her a sticker book which she enjoyed

Eden's x-ray. 6 cm difference. This surgery will correct this and also straighten her knee. Have to tell you, we never even noticed her knee was out of line...

Eden is in surgery. As the Dr put it, it will be like 3 seconds to her, 3 hours for him and 3 weeks for us. We wait. She seemed a bit scared but handled it all very well. She is an amazing little girl.

Yesterday pre-op we had xrays and the leg difference is measuring 6 cm now. After surgery last year it was under 5, so the growth continues to slow down. After this surgery, they hope to make her shorter leg 2 cm longer then the "normal" leg so in time it will even out.

The Dr said studies are showing this surgery actually also speeds up the growth rate, so if her leg was only growing at 70%, it may start to grow at 80&. But as in life, no guarantees. He said she will most likely need another surgery around age 9, but we will cross that as we get closer because medicine/technology is changing every day, and he envisions this process will even be different. They are experimenting with internal fixators. That would be nice!

Will post more when we are settled in her room...

to learn more about the hospital and procedure, you can click here


http://www.lifebridgehealth.org/body_rubin.cfm?id=1380