We're home!!!!!

As Lily and I drove home on Friday evening,w e both thought it felt like we'd been gone a very long time, but on the other hand it kind of felt like we had just lfeft the day before. I am reminded of that feeling this morning, it feels like I've been home forever, (when you read about our weekend, you'll see why) and yet it feels like we're still there and I should be getting Lily ready to go to the PPRC. I think I am feeling a bit time wharped.

Ok, so back to Friday. In the morning, we had Lily's discharge meeting. We set up a plan for the next few weeks. Lily no longer has to attend PT?OT , so that is a very welcome change for us. That will give us about 5 hours back into our week. She needs to be active every day, and do some desensitization every day. Several days of the week she will be swimming and the other days, she can do the elyptical at home, walk, jog, bike and the best part...she can actually do all of these things now. They showed us some reports about how much stronger she is, both in the effected foot and ankle and all over her body. She broke a ton of records in PT. They also went over all the coping strategies she has at her disposal. They suggested she stay on her pain medication for another month, b/c it does seem to help with sleep and they just don't want to make any changes yet. As for the pain, it is a little better. Overall, she describes it has dropped and the bad times are less frequent. She is still longing for the day when it is all gone, but less frustrated, knowing that it will come in time.

Then Lily went on with her regualar day and I went to one last yoga class before going back to the hotel to pack up. I was back to the PPRC mid-afternoon for graduation. Typically they happen at the end of the day, but Sarah who was also graduating was leaving early to go home to a father-daughter dance that night. (fantastic news that this fantastic 17-teen year old girl who came in on 2 crutches was leaving to go dance and was even able to wear her heels) Ok, so on to graduation. Most of the staff talked about Lily her progress, how much they love her, how happy they are she came, how much spirit and effort she brought, how she helped the other girls, how she learned to help herself, how much they were going to miss her...needless to say, I was in tears at the end. Then they did the same thing for Sarah, again, tears. They Lily & Sarah hung up their tiles. There is a graduation tradition of having the kids paint ceiling tiles, so the boring, dropped leaf white ceiling in the gym is being relpaced one tile at time. Then their was gift sharing between the girls and picture taking and "the challenge". Each time the graduates challenge the staff and other kids. (The first week it was plank, last week it was doing a 'model cat-walk' which I assure you was very amusing) Lily and Sarah chose push-ups, which was both amusing and impressive depending on who you were watching.)

Graduation was definately very cool but just a little bitter sweet. Both Lily and I are a little nervous, how will it go back at home?? So Lily went back to her group PT and I continued packing, she had accumulated quite a bit of 'stuff' during her 14 days. and then I went back in for one more family session. Neither Lily or I had many questions, we both worry a bit about bringing it all home, but in the end we both have faith it will be ok. Lily has a plan in place for earning points for every 10 minutes of activity. The rewards are things like a DS game wich would take something like an incredible 2000 minutes or 33 hours of activiy to smaller things like staying up late to read. Incredibly one of the rewards she chose was going the the library every week, so I told her as long as she did her OT/desensitization everyday w/o being told or reminded, we could do that. How great it that she can be rewarded with trips to the library.

And then it was time to leave, we hugged everyone and walked to the car. We both shed a few tears, a mixture of happiness to be going home and sadness to be leaving our new PPRC family, and maybe a touch of apprehension. And then we we driving, well at first not so fast. lots of stop and go, but one we got past Rt. 84 going to down to Conn, and NYC, it moved along quicker. We got back about 11:00 on friday. Saturday morning we had soccer for all 3 boys, a swim mock-meet for Lily and 2 birthday parties for T&Z, the sunday, it was choir practice for Lily, church, another birthday party for T&Z and then grandma Hutkowski's birthday party here at our house. This was a whirlwind weekend. Tim and Zack have not been to birthday parties in 6 months and then 3 the same weekend. So it was a bit like tearing off a band-aid, no easing back into our life, we just dove right in, Lily literrally done right in as her swim team had a mock meet. I debated the merits of doing this on her first day back, but since swim is new to us, I knew the mock meet was important. So at first the meet was total chaos, but as it rolled along, things went smoothly. Lily swam her first event and all was well...but then she had a 90-minute wait til her next event and things went downhill. I think it was overwhelming to go from spending 3 weeks with 12 people to all that chaos, not to mention, she was tired from the ride home, and kids were bumping into her foot. So she started to melt down, "i'm tired, my foot really hurts, I forgot my strokes, I forgot my turns," it looked really bad for a few minutes. I tried reminding her of all the skills she had learned, I suggested going to find a coach, and when I couldn't reach her, I started to melt down myself, in a moment of bad parenting I said "fine, let's just go home and then I'll call Judy and tell her you quit your very first task". I know, not my best moment, she just kept sayng "it hurts". In my defense, this may have been the most jarring moment of the whole weekend, I paniced, we had gone all that way, done all that work, and she was panicing and we were right back where we started....but as I pulled her sweats out of the bag with Paul sitting behind me, summoning me to get my sh*t together, she said, "OK, I'll try", WHEW, ok, we can do this. So I walked her back to the pool deck, found a coach who answered her questions and took her under her wing, and then I was back in the stands (apparently parents being on deck is a big no-no, who knew??) and then her events came and she dove right and she did it. (She has a fantiastic dive by the way, she jumps far out instead of deep). She swam quite well, considering she has missed 3 weeks of practice. And more important, she brought her self back (and me too) and we both made it over our first hurdle. The fact of the matter is, given the timing of the meet, we probably did better than we should have expected.

That night Lily was showing Andy all her power moves from PT, I think he was impressed with how strong and fast she is. She went of a 30 minute bike ride too. On Sunday, she played and ran all around the back yard. Paul said he saw her kick a soccer ball and nearly fainted. At first he was worried, she would be hurt. That's the hard thing about RSD because even though all of these activities make her feel pain, they can't actuually hurt or injure her.It's so counter-intuitive to look at pain as any thing other than a warning. We are supposed to stop when we are in pain and we are supposed to protect our kids from pain. But in this case,she needs to tell the pain, "YOU'RE WRONG, my foot is OK!"

It was great to see her out there running around with the kids, and not look limited at all. She may have been in pain, we don't know. She didn't mention it and we didn't ask. At the PPRC they taught us not to focus on the pain, but on what she can do.

She got a little nervous last night about her return to school. I think it will be a bit awkward today, but it will get better as she gets back into her routine and finished any work she needs to do to catch up.

So the weekend was super busy, but in a way, it felt good to get back in the swing of things. Lily and Andy are off to school already and T&Z are dancing and counting out loud to 100, please don't interupt them or they'll start over!

I'll try and include a few more updates.

~Jenny