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.