The Physiatrist at Gillette Children's Hospital was very pleased with Luke's rehabilitation progress so far.... he said, "Luke looks very good." Luke is using two arm crutches to cruise Target now. His steps are very fluid, and usually precise if he isn't going too fast or isn't overtired. It's actually quite lovely to see the way he walks now, long strides, heel-toe pattern, very upright and tall. The doctor said that from here on out, it's all about "strengthening". At Luke's daily physical therapy appointments, they work him very hard. He walks on the treadmill with weights on his ankles and does lots of strengthening exercises. He even started getting, e-stim, electrical stimulation to activate certain muscles. So far, so good!!

It's March!!

Luke is doing great. He goes to physical therapy 5 mornings a week and is now using two arm crutches with ease. His stride is beautiful and fluent, a totally different look from before the Rhizotomy. Luke goes back to Gillette tomorrow for a checkup.

Happy February!

Today Luke is beginning his second week back at Kindergarten and his second week of daily outpatient therapies at the Courage Center in Burnsville. All is well, and we have adjusted to our new schedule.

Thor took Luke and his walker to the Middle School during Zach's wrestling practice. The long straight hallways were great walking practice for Luke--he did it for an hour and 10 minutes with lots of water fountain breaks in between. Each step has to be just right and corrected immediately if it's not. New patterns have to replace the old walking patterns in the brain. For now, Luke has to think about each step and the proper way to do it: heel, toe and straight ahead, no dragging the feet....and eventually it will become natural, and he won't have to think about it as much. The walker helps him to be steady, supported and balanced. He can catch himself quickly if his knees buckle.

On Saturday, our family went to a local ski area called Welsh Village. Luke has been eager to get out and play in the snow. So Thor and I took turns pulling Luke on a sled and playing in the snow while the other skied with Zach and Sydney. It was a fun day being out and was a gorgeous day at 34 degrees!

Home Sweet Home

As Luke and I spiraled four floors down in the car on Gillette's exit ramp, I surprised myself with getting a little teary-eyed. It was departure day....Luke had just finished his 6 week and 3 day stint at the hospital. Our car was packed high with our roomfull of living accessories, but most importantly included was Luke! He was snuggled in his car seat with hat and coat on this bitter cold day, holding his celebratory chocolate ice cream I had promised him, no less! I thought to myself, "Wow, I can't believe our son just had a Rhizotomy and had to be in the hospital six weeks!" Emotional relief flooded over me, Luke and I cheered some cheers and gave thanks to God, and then we both were quiet for most of the 40 minute drive home. I was in such deep thought and thankfulness that I even missed my exit off the interstate towards home.

We have been incredibly blessed with monumental support from all of our dear friends, family, teachers, neighbors and church family in this Great Adventure. Thank you, thank you, thank you to everybody who brought meals, sent gifts, wrote cards and made visits. We are deeply grateful to all of you. The six weeks would have seemed much longer without your love.

Luke came home with his wheelchair, walker, lists of daily stretches and strengthening exercises, a new daily physical therapy schedule and lots of excitement to just "walk"! They say his milestones will be more spread out now over the course of the next year. His accomplishments will be more evident by the week or month, rather than by the day, as they seemed to be in the hospital.

For now, it's back to school, work and the normalcy of life with all 5 of us back together again!

I expect my blog entries will be much fewer without all of the hospital glamour and interesting activities there to journal about. Thank you for reading...I have enjoyed telling Luke's story.

Working hard on the day before his departure, Luke got a great report from his primary PT, Amy. She has been impressed this week at how much his strength has increased from such weakness in the beginning (4-5 weeks ago) to doing some very strong walking in his walker, and doing the stairs! She also said that had Luke still been here next week, she would have been so brave to try Luke in his forearm crutches. Also today, OT Anna had Luke practicing getting in and out of the bathtub. Luke's much anticipated wheelchair for home use arrived today. For some reason, Luke is so excited to take it home. Since we'll only need it for a couple of months, this chair is a rental, and it came embroidered with the name "Lydia" on the seat. Knowing we had to lose "Lydia" quickly, I pulled out a patch Luke was given by our police officer friend, and stitched it on right away. Now, Luke has an official police vehicle for travel. Watch out civilians!

Another big day in sports today.....last month it was professional hockey, Monday it was baseball and today it was basketball! Ryan Gomes (#8)from the Minnesota Timberwolves came to visit the kids here at Gillette. He read a book to them in the playroom and gave each of the kids a backpack full of basketball paraphernalia. Standing at 6' 7", Gomes towered over Luke in his stander, but Luke didn't seem intimidated. Luke has had so many neat opportunities while at Gillette to meet some great professional ball players and many high-quality people.

Luke began his good-byes today for his departure tomorrow. He was extremely fond of one of his primary nurses, Ali, who was such a caring and devoted professional. Along with over 10 more people, she attended Luke's Care Conference release meeting yesterday. There were several more of his team "present" with us from Luke's school in Farmington, conference call style. For about 45 minutes, we heard all the reports on Luke and his accomplishments in the last six weeks and received the plans for continued goals and therapy at home. We feel ready for the new challenges that lie ahead. They said that we won't get a true picture of the change in Luke's motor abilities until a year after surgery. (Important to keep in mind!!) It's terrifically exciting to picture Luke and his future walking skills!!!!

Luke Buddies Up with a Twin

Several of the Minnesota Twins came to visit some of the kids at Gillette on Monday. Luke was thrilled to reunite with Kevin Slowey and get some new autographed pictures of him. Luke and Kevin became "buddies" last summer when they met for the first time during a book signing with the author of a book called "The Baseball Guy". It was during therapy at the Courage Center last summer when they came. Luke was given this book and some of the Twins signed it for him. Kevin and Luke had a long conversation about Buddy and sled dog race teams at a picnic table. Not realizing the significance of a Twins Baseball player's autograph, Luke thought he should sign Kevin's book as well since they were friends. .......So, back to the present, Kevin remembered Luke well...they had another nice visit.....and Luke casually called after Kevin as he left the gym at Gillette, "Bye, Kev!"
Balancing tall on both knees all by himself is still very challenging for Luke. He works hard to do it, but sometimes needs just a finger's worth of support. His tall kneeling is hoped to soon evolve into independent knee walking, but it seems he has a ways to go.

Luke ditched me yesterday while we were hanging out in the play room on a break. Luke was found at the nurses station chatting with with one of the nurses. Unbeknownst to me, she told me that he came to her looking for his "primary physical therapist" so he could get "the lateral support taken off his wheelchair." She was charmed by the language he used and asked me, "are you sure he's only six?"

Luke had a great visit today with Jack who is a Rhizomoty patient as well. He left Gillette right before the holidays. It was great hearing about his progress and visiting with his mom about life after the hospital.

On Wednesday, Thor and I will be having the hospital "release" meeting with all of Luke's doctors, nurses, therapists, teachers (both from Gillette and our private ones as well). We will be discussing his progress, goals and care plan for after his departure from Gillette on Friday. Although Luke has made many memories, had many new experiences and befriended lots of new people, Luke is very excited to be done at Gillette and to be back home to resume his normal life. We are preparing ourselves for a whole new type of busy. Luke starts daily physical therapy as an outpatient and starts back to school all on Monday, the 26th.

Cute Kid Story Ahead:
This afternoon, I had to go to the Goodwill/Easter Seals Equipment Rental Facility in St. Paul to pick up a reverse walker that Luke will be bringing home with him for home use. I went during an hour block of Luke's therapy time, hoping to be back by the time therapy was over. It was an hour and five minutes by the time I returned to Gillette to find Luke in the room and a volunteer reading to him. They read about 7 of Luke's "My First Little House" books.....remember Laura Ingalls?? The volunteer was reading fluently, but when she ran into the name, Almanzo, she struggled to pronounce it. In the background, I piped up and said "Al-mon-zo", and during the pause, Luke politely asked her, "Did the "Z" getcha??" Chuckle, chuckle.

After therapy tomorrow (Saturday), Luke will get to go home for the weekend on his last pass. Then back Monday morning for 5 more days of therapy next week. And as Luke has been saying, "Then it's home for good!"