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!