Eden post fixator

Eden has a cast on her leg and is feeling ok. Surgery went fine. They inserted a metal rod for more strength so she is still kind of bionic. They will take it out when we do the next lengthening - we do not yet know when that will be. We are kind of back to square one, she does not want to stand on her leg or even see it and is afraid to move. But she felt that way about the fixator and look what she was able to do at the end. The wounds will heal themselves. I am worried about itching, but what can we do about that? A few of the wounds from her hip area are not covered so we can watch those heal. Ayla will take care of them for us!

The hospital stay was fine. We checked in at 9 am, we were on the schedule for 11:30, but we did not know that. Eden started to get hungry but managed to not fuss too much. There was a younger child they operated on ahead of us. Eden isn't the baby anymore getting first dibs in the OR. I went into the OR like the past two times. I can say for sure, this was the easiest time, for me. For her it was a bit harder. Being older, she was more aware and more scared. That was not fun but we are so lucky they allow us to be with her until she is asleep.

Recovery was full so it took a bit to get her there - she did wake a few seconds before we got there so she was a bit upset when they brought us to her. The day was not great, but not terrible. I think it is more fear than pain. We managed her pain with the same meds we have given her all along, so we are keeping her doped to prevent any pain. She is also taking antibiotics for a week to ward off any infection from the rod and the open wounds. The Dr has a near perfect (just on case that happened recently) record on his kids not getting infections. That was good to hear.

They kept us in recovery for a while, Eden dozed in and out and peed on my leg (a mother's love) and Chris and I played back gammon on the ipad. Fun toy. Good news - we got a private room, but wow was it small. Eden wanted round the clock cuddles, so we gave it to her. There was a pull out chair/bed so we managed to get sleep, one on the pull out and one in her bed. The nurses were good and let her sleep for a 5 hour stretch at least. We bought them dinner, so maybe that helped.

By 10 am we were itching to get out and they gave Eden a last dose of meds, and signed our papers. We were home by 1pm! Sabba and Savta were waiting for us with TWO balloons - Dora and a Strawberry shortcake. As usual, a big hit.

So, back to the grind, kids with friends, sleepovers, Chris took them ice skating yada yada

We will see how quickly we can get Eden moving. The cast comes off in one month - so she should be free by her birthday late January! By the summer, she should have full use of her leg back. This will be almost a one year process. Good thing they did not tell us what we were in for and exactly how long! We are tired!!! But worth every second of what we have been through, and will go through, to give our little girl two perfect legs.

As always, thanks for all the support. We read all the facebook postings and emails, they keep us laughing, smiling, and hoping.

The final countdown

In two days the fixator comes off. 3 months turning, 2 months strengthening the bone. The Dr was supposed to be on a relief mission in Haiti so we were scheduled for Jan 5. The trip was canceled and we found out through the grapevine so we managed to get the surgery pushed up. This is the best holiday gift possible.

Eden will get a cast for one month, then we are DONE. I am sure there is lots more PT ahead of her, but Eden loves Leslie so that is not an issue. In fact, I am pretty sure Eden will be upset when we tell her PT is done.

No words can thank you all for your continued support and prayers, we are almost at the finish line, so keep them coming.

Almost done

Well, I went back to work. So working full time, taking care of the family and Eden's PT does not leave much time for updates. There has not been much going on, so I have been remiss on updates. Work is going great. Eden is doing great. Life is hectic, but what is new. The fixator care adds a bit of strain, but we are all good.

Yesterday we had an x-ray done of Eden's new bone. We are mailing it to Dr Standard and he will determine when the fixator can come off. best case is in a month. So I am doing this update to ask you all to please cross fingers, say prayers, send good thoughts, do or say what ever it is you believe in - BECAUSE WE ARE READY FOR THE FIXATOR TO BE OFF.

Thanks to you all for the encouragement, we know you are with us!

5.6 cm - and still going

Sorry it has been a while. I know a lot of you know things got funky last week and I was remiss in not updating Eden's progress. But the story begins that it appeared Eden's range of motion in her knee and hip was not doing well. She could not straighten her knee and her hip was getting tight. We were at numbers that the Dr said may be a sign that we have to stop turning. So on Monday we called the Dr to try and get an appt, repeatedly, we emailed, we left messages with his Asst. Then Leslie called on Tuesday and we got a call back. They told us to stop turning and come in on Th. so....Did stop turning mean we would be done, or could we start again after a few days? Did we want to be done turning even though we did not reach the target of 7 cm? Do we get excited? What do we hope for? Does it matter what we hope for, it will be what it will be. So we stopped turning and waited for Thursday.

Eden's mood seemed to improve and she even slept through the night for two days straight. Wow - did that feel good. In Balitmore we went to PT to get an evaluation. Eden looked good! Even to my eye I could see her knee was bending better and she was more relaxed and got some more movement in her hip. The therapist was cool and asked how we were feeling and was offering to sway her evaluation if we were ready to be done turning. I told her we were ambivalent, but we made it this far and lets go for it if she thinks it is safe. So she went and told the Dr we are ok to continue. So, that is what we are doing, we are still turning.We are aiming for 7 cm. Her motion is tight, but not in the danger zone. Seeing how comfortable Eden was without turning was encouraging. Even though the fixator remains on for a while after turning, it appears it will not cause her pain. It will require care, cleaning and maintenance, but at least no pain - it seems most of the pain is from the growth.

Other news - we got Eden's lift, for the right or "normal" leg. So odd she needs a lift for that leg. It is amazing, you can not even tell it is there. It is exciting that as she gets older the lift will be barely visible. Now, we need to teach her how to walk normal. She does not know heal-toe. So we are all working on it with her. She will eventually get it, just like she has overcome every thing else. Her walking is great, she barely even needs the walker at this point.

We go back to Md a week from tomorrow, Oct 7. We should be done turning soon. Wish us luck!!

2 months post op

We had a visit in Md yesterday, it was exactly 2 months post op as surgery was July 13. It was a hectic day as Ayla had a few issues at school while we were trying to get on the road. We handled what we could and then Sabba and Savta came to the rescue and picked up the peives. It was a 12:30 appt, we got there closer to 1 and saw the Dr at 3 pm. Right when Ayla, Jacob and my parents started to call to check in at the end of the school day so it was a bit hectic. Chris focused on Dr Standard and I focused on getting the twins settled via phone...so this is where we are via Chris...

Eden is now at 5.2 centimeters - the goal is 7. The left leg is now sightly longer then her right leg. This is causing a slight complication since she is bending the left knee to walk. The knee is not straigh but instead bent at a 13 degree angle. If it gets to a 15 degree, we need to stop the lengthening. Leslie (our PT) explained it is easier to get a knee to bend than to straighten, so we need to be on top of this. Dr Standard wants us to use the knee bar more often - we were doing it only at night and to help walk, this may help straighten the knee a bit. We also ordered a shoe lift for the right foot, irony. By putting a lift on the right foot it should also force her to straighten the left leg.

There is also some loosening at one of the pin sites internally. In the xray, you can see the open space around the pin in the bone. There is nothing we can do about this, but if it gets too loose he will need to operate again to replace the pin. Oh yeah. There is nothing we can do about this, so we hope it stays strong and we can avoid an additional operation.

He had us slow down to 3 turns a day instead of 4. Even though we are close to our goal, in theory only about 2 weeks away, it helps the bone harden if we slow down, so by going slower, the bone can harden quicker, thus decreasing the time the fixator will have to stay on post turning. Hope this makes sense to you....

Overall Eden is great. She is walking great with the walker and even a bit with out it. She can roll over and get around pretty well. She started day care in the mornings and is happy with her new class. The day is day care from 9 - 12 then PT. She is TIRED after that and sleeps well in the afternoons!

We go back to Md in 2 weeks and hope to be done at least with the phase of turning soon after. We will continue the updates.

That is all for now...

Lengthening - lost count ages ago

This week was too bizarre not to write about. It started off terrible. I was in a panic because Eden's pins sites seemed to open up. I mean, there were two gaping holes in her leg. It was gross and scary and I was freaking out. How can this be normal, or is it normal? What the hell do I know??? Jacob noticed and boy was he worried. We were on the phone and texting pictures to the Dr, again the marvels of technology, and it was late. So he asked us to please wake him when we know if she is ok. The uber-protector! We had already decided to start antibiotics just in case. But the on-call Dr showed the pics to Dr Standard and they both were pretty confident that I was an excellent photographer and that there was no infection. That said, another pin site looked a bit red and Eden said it hurt, so we decided to continue with the antibiotics. The Dr told us to just do wound care, clean with saline and keep it covered with gauze. I almost vomited cleaning them. Chris came in to help. The Dr explained that movement can cause the sites to open up, again GROSS. She said if we are concerned to come to the clinic on Tues or Wed. We decided to see how Tuesday goes....Monday night was pretty bad, The Dr said it is ok to give the pain meds more frequently, This is after they upped the dosage. But the Dr said ok, so we were giving it to her almost every three hours! Tuesday was ok, not great but ok. Tuesday night sucked again but I think it was more moodiness. Looking back, we were at an amusement park on Sunday and Eden rode a carousel, one of her favorite activities lately. It was an old one and Chris commented on how rough the ride was and uncomfortable she seemed. It is very likley that jarring motion could have opened up the pin sites. That is around when Eden started showing more signs of pain and discomfort.

Now, today...Wednesday. An AMAZING day!!!!
Her mood was good, she did well at PT. Her friend Molly came over (the monsters were having a fun day at Mitzvah Camp at Beth El) so it was just me and Eden. Eden had a blast with Molly. She played, ate, found ways to get around. She did not need her blanky or pacifier at all (relief). She was just in a great mood. When Molly left Eden continued to be independent and move around the house. She used the ottoman to get around or at one point I saw her get off the couch, sit on the floor and scoot on her butt to get to her walker, then walked into the kitchen and opened the fridge then the pantry and came out with a lollipop. I was so happy I let her get away with it. : )

She then asked to go upsatirs and rest in my bed watching TV. She was being quite mobile, and had not had any pain meds for over 6 hours. At one point, I looked over and Eden was laying on her side. A first! She looked so comfy. She loved sleeping on her side so I was so happy for her.
We had decided it is time to get Eden in her own room. Ayla has been amazing, but with school starting we can not let Eden keep her up and wake her every night. We were prepared for a rough time, but at 10 pm, we finished books and songs, I kissed her good night and she did not fuss!!!! We made a special trip to Target, bought her Dora sheets, put a monitor in her room and showed her all she has to do is say I need you and we will come. Not sure what did it, but she has been nicely in her room for an hour! And what did we do? Chris and I spent our free time cleaning out closets. Schmucks!

We are pretty confident she is ready to start school a few hours a week. We are lucky Beth El day care is being so accommodating.

So, with that said, we bid you good night!!!

Lengthening - too many to count

We had PT in MD today at 11 am. It was strangely empty in the hall way when we arrived. We were used to wheel chairs and strollers and people lining the halls. There was no one today. It was our first session there in three weeks. They explained we are at the end of the season, school has started and everyone finished their procedures and are continuing care at home. I was actually disappointed not to see the crew we had gotten to know and see how they were progressing. Eden charmed our therapist Erin. Erin thought she was adorable and funny and most importantly, she was doing great. It was just me and Chris with Eden, the monsters decided to stay home with Sabba and Savta which was a good thing since our 1:30 appt with the Dr actually happened at 5:45!!

Eden was a trooper but it is amazing that doing nothing like sitting in a waiting room can be so exhausting! We did see a few people we knew while waiting, so it was nice to catch up and have friendly faces waiting with us. So here is the update. He originally said we were at 3.2 centimeters which was a bit disappointing, we thought we would be at 4 cm, more then half way to the goal of 7 cm. I could see in Chris' face he felt the same way. Right when we were about to ask, the Dr looked at a different x-ray and said wait, this is clearer, I think we have more, let me go measure. So Dr Standard went off, did his funky calculations and came back with 3.7 cm, so we are almost at 4 cm!! YEAH. Eden's mobility is fantastic and he said she is a best case scenario and wants all his colleagues that question whether a 3 yr old can tolerate this procedure to see her. I said she may tolerate it, but it sucks for the mom. He and the two assistants with him laughed, I wasn't kidding.

We asked about the pain meds that she is popping every 4 hours. They said not to worry, three year olds do not become addicted. But he said he is not surprised to hear there is more pain as we are pretty far along into the process. He told us to up the dosage to try and give her more comfort for longer periods. OK! Maybe she will sleep at night now...

And our next big question... what can we expect next? We will most likely keep turning through most of Sept. Then we will stop turning but the fixator will remain on through most of December while the bone hardens. Once that happens, they will surgically remove the fixator and implant a metal rod to help stabilize the bone. That is a one night hospital stay so they can dose her with antibiotics to ward off any possible infection. She will be in a cast for 4 weeks, full leg but she will be able to walk on it. So that takes us through Jan, right around Eden's 4th bday. I saw the disappointment creep into Chris' face again, he was looking forward to being done with this by New Years. It does not look like that will happen, but we started this thing and we will see it through to the end.

So, to sum it up, it was a long but good visit. Great to hear we are on track, but sobering thinking about the long road ahead. We go back in three weeks. If we stay on track by that time we should be at 5.8 cm, give or take. So close.... Again, one day at a time.