Belated update

Ok, so I have been meaning to keep the blog updated but somehow have lacked the time and frankly the motivation. I had hoped that it would not be necessary to keep it updated...that after we returned from our 3 weeks at the PPRC the pain would gradually and miraculously go away. Now my brain remembers telling Judy, the clinical coordinator of the program that I understood that Lily may not come out of this pain-free, but hope is a crazy thing and it got me through making the decision to leave. I was convinced that b/c Lily was walking going into the program, surely it would mean that she'd improve more than the kids who went in in wheelchairs. Ok, so I shouldn't be a total downer...Lily is so much stronger and in general copes better. About a week after we got home she did have about a 10 day stretch with significantly lower pain levels. We were all very excited. But on, November 1, her pain flared again. We figured it was just a temporary set back and hoped it would just be for a day or maybe a few days. Well, unfortunately that flare has not gone away yet. We have been back to Walthan for a follow-up and are in weekly contact with them. They continue to tell us that Lily's pain will go down and that the flares will come and go but she should see longer times with lower pain. My heart hopes like crazy this is true, I have no choice but to believe this is true. Lily is hanging in there. It's been rough for her...I think the worst part for her is holding on to the belief that it will get better. At times, she feels like going to Waltham was a waste. We remind her how much stronger she is and that now she can physically do anything, she sees it but it is out-weighed by the pain.

So, now Lily is trying and we are trying to find a way to live with the pain and through the pain. It is, of course, easier said than done. We found her a psychologist here to help her with the relaxation and other techniques to help her manage her pain. Dr. G will also help her deal with the stress of all this. Lily is a sensitive, thoughtful girl, which is a good thing in some situations, but it not helping her right now, she is over-sensitive and over-thinking everything, causing herself great stress in regards to her RSD, school, swim, etc. Her pain reports have shown a tiny amount of improvement over the past week or so and she seems to be coping better. She is learning so many huge life lessons ahead of her time. Our hope is that she will come out the other end of this a strong, compassionate young lady.

More soon, it's starting to snow and I have Christmas errands to run.

~Jenny

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

one more day to go...

so with just one day left, today's news is that Lily has poison ivy, argh, she's been itchy all week, but honestly, I wasn't paying that much attention, she has such sensitive skin, that I just chalked it up to different soap, etc. oh well, nurse Judy is on the job and we'll have her itch-free in a day or two. I'm not sure how much I've talked about Judy. She is the nurse and clinical coordinator of the PPRC, well, those are her official titles. I have dubbed her "mama bear"! She is always that to cheer on the girls and give hugs, plus like any real mama bear, she is always looking after her cubs, and lastly, we all know what happens if someone tries to hurt one of her cubs. She took on this role even before we came, when she had to work with the insurance company to get them to agree to let us come. She was very persistant and never doubted she would get the job done. She is the heart of the program.

Well, that's all for tonight. My next post will come from home. Yippee!!

~Jenny

Almost Done!!

This week has been more eventful than I would have thought. First, Lily jammed her finger while swimming the other day, so she has had that extra injury to deal with, this is the same finger she hurt back in June. Also, they got a new girl at the PPRC and her case is more extreme and complex than the others, she has CRPS in both legs and one arm and came to PPRC in a wheel chair. She turned 11 today. The most difficult part about all this is that she is very vocal with her pain and very negative. She is one angry and scared little girl. The staff already has her out of the wheel chair for much of the day and she is very slowly making progress. The other girls are very patient with her and her greatest chearleaders. Lily and the others keep telling her that she will get better. It's great to see the other girls pulling for her, but frustrating that they have to be exposed to a stressful situation. But, then again, that's life.

Lily has also been expressing frustration that her pain is still with her. Though she admits that she has improved a little, I think she hoped it would be all gone. FYI, the staff at PPRC say it is quite common for the kids pain reports to be worse or the same during their stair at PPRC, in part b/c the are being pushed so hard. They say that typically, they start having better pain levels about 1-6 weeks after leaving PPRC. Lily was quite upset about this but seemed to feel better about it after 'getting it all out'. I think that so much of the program is about staying positive, that perhaps she wasn't sharing her fears and concerns. She stated that bringing all that negativity into PT doesn't help. We told her sheis right but that doesn't mean their can't be a time and place to vent and share her worries.

Today seemed like a better day. Her finger is healing and they tweaked her goals a bit. She is doing more OT (dessensitization) b/c that is still very difficult for her. She also worked through any concerns she has about returning to school.

We are very excited about graduation and our return home. Thanks for all your support and prayers.

~Jenny

first day of the last week

So this is the first day of the last week of Lily's PPRC program. I dropped Lily off and then went back to the hotel to pick up the boys and took them over for a quick visit. The boys came very close to actually getting in the therapy pool. The pool is very cool, well actually it is very warm, and it is one of those pools where you swim laps against a current, so Lily has actually been able to practice some of her strokes. Paul brought her practice flippers out. When I ordered them I couldn't imagine her being able to put them on. So they are going to help her learn to put them on and work through the pain. Before she would have fought even the idea of putting them on her feet, and now she knows it will be tough but that they will help her make it happen. Once again, I am so, so very glad we came here.

Yesterday was another gorgeous fall day. We went apple picking and also enjoyed some yummy cider donuts. Then we did some hiking at Prospect Hill Park, the park near the hotel. Lily did it all with out complaining or sitting out. She even did some PT while we were standing around at the overlooks. It was another full day, she was so proud to be moving so much. Everybody was very tired at the end of the day. We ordered a movie for the kids, they really enjoyed "Kung Fu Panda", although it may not have been the best idea for the end of the day, in a hotel room, they got a little amped up.

Ok, on with the rest of our week and then it's back home in just 4 days! Yippee!!

Waltham, Mantown has come to town!!

So 'Mantown' made the trip east yesterday, but not without travails, they had a tire blow out on the Mass Pike but thanks to Paul's fine driving skills, all were safe and they drove the last 100 miles on the donut...but what should have been 2 more hours turned into about 4 more hours due to traffic. They were all mighty happy to be out of the car. I used my 'dorm-style' kitchen to make the kids noodles and meatsauce. Paul and I ordered Chinese food from a place called "lily's", which she loved.

So last night we pretty much just chilled and then went to sleep, we went to sleep sure the SOX would win game one of the ALCS series, and of course they did.

We woke up this morning and got the tires changed, we were planning on doing all 4 this fall anyway. So then we off to Walden Pond on our pretty black tires. It was a gorgeous fall day. Beautiful blue sky, awesome fall color on the trees. And nice and warm. We visited the replica or Thoreau's original house, and when he said he lived simply, he really meant it. I am trying to convince Paul to move the mower and other gardening stuff out of the shed in the backyard and transform it into a Thoreau-inspired retreat.

On our walk around the Pond we took many pictures. Somewhat painfully, we kept posing the 4 kids trying to get a pix worthy of the Christmas card, and I think we may have done it. Also on our walk we met a 91-year-old man sitting on the beach getting ready for his swim. He said he's been coming to WP for 82 years and for the last 40 or 50 has swam every day. He says it's what keeps him young. We were not sure if he meant he swims every day at WP or just swims every day, but we kind of think he meant WP b/c he talked about how after he swims in the cold, he runs into the woods to change and then runs to his warm car. He knew lots about the pond and the fish. He was the coolest 91 year old you will ever meet.

After Walden Pond we were off to a place called Kimball Farms for lunch what we have been told is very good icecream. This would be a fun place to go back to b/c they also have bumper boats and mini-golf. Lunch was yummy and the ice cream was great, the 6 of us split 2 kids bowls, they gave us a lot of ice cream.

Our last stop of the day was our friends the Laundree's. They live in Lunenberg about 45 minutes from Waltham. We went to college with John and attended their wedding when T and Z were just 6 weeks old. They now have 2 kids, Ean (4) and Mari (2). Today they were having a family birthday party for Ean, it was so nice to be included. They live out a country road, and then their drive way is about a half mile into the woods. Paul was loving this. It was so private and woodsy and yet they have a very open lot. Since it was a nice day we were able to be outside and they kids played with Ean and Mari and their 4 cousins.

Now we are back at the hotel and very exhausted, it was a full day.

The rest of the week went well for Lily. She is continuing to gain functioning and not just in the troubled leg, b/c she is working out her whole body in a way she has not been able to in such a long time, she is taking pride in her new muscles. She is also doing better managing her pain, b/c for all the progress she is making she is still in pain. Though one nice thing is that I don't hear about it as much. They encourage us as parents not to engage in the "pain talk". This is one of the many things about RSD that is counterintuitive...when your kid is in pain, you are supposed to try and fix it. But she is starting to manage it on her own. The other night she actually sat down quietly on the couch and when she got up, she said, "I was having cramp, but I meditated and it went away", I was dancing on the moon!

So, we are less than a week out. I am so glad we came. The kids are all handling themselves so well. I almost start to feel guilty b/c it really hasn't been hard, and then I realize it's not difficult b/c it was the right thing. I barely got through my second graduation ceremony on Friday w/o tears...can't imagine what it will be like on Friday when it is Lily. She has grown so much and yet is regaining her youth. It's such a blessing.

Speaking of blessings, many of you who are reading along have helped out. Helping with the boys, providing meals, sending care packages, and the church moms sent and extra care package with some gift cards to help with our expenses, the kindnesses we have received is an embarrassment of riches. Thank you all so much. You all make it easy to 'dare to dream'

Love, Jenny, Paul, Lily, Andy, Tim and Zack

Waltham, October 7th

Another good day at the PPRC, Lily is doing really well. She is learning some bio-feedback and relaxation techniques. She is doing so well on the PT tasks that she is "timing out" of some of the activities. Functionally, she is doing really well. She still has a ways to go with OT, which is when they work on dessensitization. This has also been the hardest part for her, her foot is hypersensitive to the mildest of stimulation. Tomorrow, she is going to work on doing some of the relaxation techniques during her OT session. We had our family session today and they brought up the possibility of us going home a week early. They feel she is progressing well and if we are really anxious to get home than they would try and make it happen and then we could work with them from home. In the end, Lily said she really doesn't feel ready. I agreed, i think she has come along way, but theprogram is 3 weeks long for a reason. I would hate to have come this far away from home, to not get everything we can from the program. I think we would regret it later if things went badly when we got home.

So we are here for another 10 days, tomorrow is the halfway point. The boys are doing well. Paul was tired tonight, but since the Red Sox are off tonight that should help him get more sleep. It's a good thing for a Red Sox fan to be tired in October, b/c it means the sox are still in the hunt.

Paul and the boys will be here on friday and I've been busy making plans for the weekend. Those plans have to include a lot of activity as Lily is trying to earn minutes of activities when away from the PPRC. So I think we will head back to Walden Ponds, and then for a treat off to find the ice cream farm that Judy from PPRC brags about, home-made farm fresh!! And then to finish off Saturday, we are headed to the home of a friend from college. John and his wife Laura have 2 kids, Ean and Mari. It is actually a party for Ean's 4th birthday.

On Sunday we will hike at Prospect Hill Park. This park is literally a stone's throw from the hotel, I saw it driving to PPRC every day and on a map, but I never could have imagined what a gem it is. It was formerly a small ski slope so it is nice and hilly, we actually drove to the top for the view and then walked from one scenic view along a ridge to another one. Lily was a rock star hiker, we did some pretty good hills and hiked for about 30 minutes, even after a full day at the PPRC. The views were spectacular, one to the Northwest, into New Hampshire and the other south and east, including the Boston skyline. Then we went back to a field at the bottom of the park and played 25 minutes of "speedminton" it's badminton, only much faster. Can you believe this girl, little miss active, and it's good for me too.

I took a new class at the Y today called NIA (neuromuscular integrative action) it's a combination of yofa, tai chi, african dance,jazz, ballet, modern dance. It was awesome. For you TPCMOMS reading this, I found a class in Rochester, and I will definately be making this an event for us. It was so awesome, gentle, vigorous, smooth and funky all at the same time.

ok, I'm exhausted just writing about all our activities. and I gotta watch the debate.

~Jenny

Sunday, October 5th

We went to Springfield today to visit Paul's family. His parents both grew up near Springfield. We stopped first at Aunty Gail's and then she drove us to Uncle Ken and Aunty Linda's and then we were off to go apple picking with Aunty Linda's kids. Laura is one of Lily's favorite relatives. Laura is very good to Lily. I must get her to stop buying Lily gifts, but I am thrilled at how she lavishes her with attention. The apple farm was great, they had great food, hay ride, and the apples were fantastic. It was a sunny, crisp fall day, really nice. Then we were all back to Aunty Linda's for tortellinni soup and cheddar-garlic biscuits and a Patriots game on tv. I opened a can a worms by talking Politics, in a house full of conservatives. We all remained civil, (I was way out-numbered so I didn't really have a choice). I decided it was better to just root for the Red Sox, who should be winning, even as I type.

Lily managed to squeeze to Pt sessions into the day. She is very committed. She was actually disappointed that we didn't get to walk around more at the apple orchard.

I can't believe we are already done with one week. Hopefully, this week will go just as quick. At least at the end of this week, we'll be joined by Paul and the boys.

Ok, gotta watch the game, GO SOX

~Jenny

waltham, the first weekend

So, Lily completed her first week. On Friday, there was a 'graduation'. Grace completed the program. She is 13 and has RSD in her foot. She made such a huge improvement. The other girl who started with Lily came in with 2 crutches, a TENs unit, and a brace and yesterday was walking. Lily is doing really well. It seems this was just the right thing. And now that we know what this program is like, I think it will make duplicating it at home easier. It's like this summer, we were trying to duplicate it w/o the original and now that we have seen the original, we'll be able to build a good home program. She is so much more confident and less confrontational. She does the home program w/ out being asked.

They told her that she has to be active over the weekend so today, we are headed to do the "Freedom Trail" it's about 2.5 mile walk through the streets of Boston to various historical sites. Lily has also asked to go use the treadmill here at the hotel, b/f we go. tomorrow we are off to Springfield to go apple picking with Paul's Aunties, and we'll probably try and find a park to take a hike along the way. All this activity will be good for me as well.

I took a yoga class yesterday at the Y, very gentle, just challanging enough, hopefully good for my back. I find it's hard to ignore my back when I'm pushing Lily to do her exercises. After yoga, I went for a drive and found Walden Ponds. It was gorgeous, a nice walk around the pond. I was there with several classes of 6th graders, who had biked there, 18 miles round trip, very cool. There was a replica of Thoreau's home, but I did not check it out, saving it for Paul and the boys trip next week.

Last night, we went out to dinner for the first time. Lily is getting so grown-up. She was a lovely dinner partner.

Well, we are off to switch the laundry and head to the hotel gym.

~Jenny

Waltham day 3

Good morning,

Today started off a bit rough. Lily did not sleep very well, is fighting a cold and is generally achy. This is the first time she has exercised this much in a while, so it must be like it is or me when I have not worked out in a while....the first few days are just rough. She really did not want to got to PPRC this morning, she limped, she whined, she asked to go back to sleep, but she responded to my saying, "well, we are still going, let's try not to be late". By the time we got there, she ready to roll and was limping less. She was happy to see the other girls and left me with no drama. Yeah.

For the second, day in a row, I was surprised by my reaction to leaving her there. I thought, I would be scared,sad, teary-eyed. But, honestly, I just feel relief. Relief, that we found this wonderful program. I love the way they all work together, it's such a nice family setting. They have just the right combination of tough love, jokes, fun, laughing, hard work, support. Later today, I will to my first meeting with the other parents, a support group for us. I have already met several of them. It's great being with people who get it. This syndrome is so strange, no one really understands it, so it's nice to talk to people who have had to watch they kids is pain and then make them go to PT. It's so counter-intuitive to make your kid do something that hurts.

I found the YMCA this morning. They have an "away" program, so my membership is in effect. I am thinking of taking Lily to swim this weekend.

Not sure what else we will do this weekend. We may go to Springfield one day to visit Paul's family or into Boston one day to do some touristy things. I have received a few e-mails from people with family in the area, offering some good suggestions. I am thinking of going to Walden Ponds tomorrow. I also spoke a friend from college today. We'll probably visit him and his family next weekend when Paul and the boys are here.

Speaking the Hutkowski men, they are doing well in 'mantown'. The boys seem to be settling in. I miss them tons and so does Lily. I think we may feel that more this weekend. Paul is sending me some pictures, which is something I forgot.

Well that's all for now.

Thanks for all the good thoughts and prayers.

~Jenny

Waltham day 2

So here we are in Waltham Mass. Lily is participating in a 3 week program at the Pediatric Pain Rehabilitation Center of Children's Hospital Boston, which we call PPRC.

A little background. In May 2008, Lily was diagnosed with RSD (reflex sympathetic dystrophy) also known as CRPS (complex regional pain syndrome). Essentially, it is a pain problem. She has pain in her right foot and leg, even though there is no underlying injury. The PPRC uses a multi-disciplinary approach, PT. OT. Psych, and medical. I am more hopeful than I have been in a while. This disease is very strange, very little is known about why it happens or why some kids get it and others do not. Currently, there are 3 other girls taking part, ages 17, 17, and 13. It is good to see the progress of the girl who has already been here a while. All the girls have been very good to Lily.

We are getting settled in our hotel. It's a suite, though it should be called "suite-ish". The bedroom is only semi-separated from the living room/kitchen. I found nice grocery stores, so I can cook dinners for us. I plan on checking out the Library and the YMCA. I also have lots of books to read. And I am planning a PTSA event for the kids school. Thank Goodness for e-mail, I can do a lot of delegating from here.

Lily is doing tutoring as part of her day at PPRC, plus home work and PT in the evening here at the hotel. She also agreed to take part in a brain study of kids with RSD/CRPS which involved an MRI. She earned $30, which she promptly spent on a game for her DS. She picked a game called Imagine Teacher. I find this funny, b/c she spends a lot of time playing teacher to her brothers. This summer she tutored them to get them ready for Kindergarten. Do we have a future teacher here??

More tomorrow.
~Jenny