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!!!