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!"

Good Therapy and Good Friends

Luke had a rigorous day of therapy yesterday and his activities included time on the treadmill in the "Lite Gait" trainer. His goal was to walk a total of 10 minutes with a break in the middle. He made his goal breaking at 6 minutes. Using the remote, he lifted himself up in mid-air for a rest. PT Paula calls this "flying time", where Luke can dangle or run suspended in mid-air. This was his favorite part of the session. He requested to do the "Lite Gait" just so he could fly. During his last four minutes walking on the treadmill, he grew tired and his steps got sloppy. Motivated by Fruit Loops to concentrate on making good steps, Luke earned 80 Fruit Loops....one Fruit Loop per quality step. He ate a few, but saved the rest for another time.

Next, Luke did some walking in the reverse walker making a lap once around the gym.
This was followed by some trunk strengthening on the balance ball while trying to hit a tether ball.
Next, OT Anna and Luke played some Cariboo--a very cool team game...while doing some kneeling and balancing. It was the first day that Luke was able to balance in a tall kneel for a few seconds by himself. He was so excited! Daddy reports that today he can do it for over 10 seconds.



In the evening two of Luke's Kindergarten friends came by for a visit, Parker and Brayden. They played air hockey, made snowmen at organized craft time, ate chocolate ice cream and were escorted on a hospital tour by Luke in his stander.

The Name Game

It's actually nice being "cooped up" here in the hospital when it's minus 17 degrees below zero outside.....not having to go out and about on errands, to school or to the grocery store....everything is right down the hall, and Luke's made-to-order breakfast, lunch and dinners come without fail.

Luke greets nearly everyone he passes in the halls or that he works with by their names....I just did a quick count and he calls by first name a minimum of 30 people. There's Andre, Amy, Anna, Annette and Aaron and then Carrie, Kari and Katie. There's Veronica and Danielle, Drew, Dana, Dave and Deb and oh, Darius, too....George and Jessica....Varney, Rory, Sally and Ali....just to name a few! And not to mention that he also knows the names of a least 10 different therapy DOGS!

When Luke's nurse comes in to do periodic checks on him, he often answers their questions before they are posed. For example, nurse Annette popped in the room today with a smile, and before she could say a word, Luke lifted his shirt and asked her, "want to look at my back?" (He's so used to both nurses and doctors checking his back incision daily). She came back a bit later and he said, "I went to the bathroom twice today," before she got her chart out to take notes.

We had the GREAT pleasure of having not one, but FOUR of Luke's teachers from Farmington come visit today: Mrs. M, Mrs. L, Mrs. K and Mrs. J. They brought a way cool book that all of Luke's classmates made for him ..... the book was a glimpse of one days' work and fun at the Kindergarten Center. They brought books,balloons, suckers and lots of hugs, too! Thank you, thank you...Luke can't wait to get back in the school groove with you all!
I can't resist sharing these cute dog photos from yet another dog show that took place this evening. This is Louie the "mutt", as his owner called him, and Sammy...a miniature poodle who could play the piano.After the pet show, Luke rode his hospital trike around the halls for 1/2 hour solid...I was helping him out on one of his police missions. He had his bikes' "walkie talkie" going solid with communique to his partner, Brian. The mission caused him to ride faster and faster and harder and harder looking for bad guys around each corner...that police work will motivate a kid and make him forget the real work that he's doing.

Today Luke's physical therapist was VERY pleased at the WALKING Luke did in a reverse walker (It was just like the one he used when he was 2 to about 4 years of age). All of his hard work is definitely paying off. After Luke's bath tonite, he was sooo tired from his days' effort that I put him to bed, and he was fast asleep before I came back from brushing my teeth.

The end is within sight!

Friday, January 23rd will be Luke's final day here at Gillette....that's just two more full weeks of therapy. We were given the release date today! So he'll start back to Kindergarten on Monday January 26th as well as begin his six month stint of outpatient daily pyhsical therapy at the Courage Center in Burnsville!
Today Luke did some walking on the treadmill! Assisted, of course. They strapped him into a harness and literally dangled him from a tall machine called a "Lite Gait". This machine can control how much weight of his own Luke is bearing at the touch of a button. He did well, considering these are some of the first steps he has taken since his surgery December 10th. He went about two minutes before his steps got sloppy and his legs turned noodley. There was a white line down the middle of the belt on the treadmill, and Luke was supposed to keep each foot from crossing the line.
Luke wants to show everyone the pictures on his new orthotics: a fancy police car and one not too fierce-looking "police dog".












Luke can nearly tall kneel now without support. Good balancing and core strengthening.
Luke helps Mom mail a letter in the mail drop.

A very busy day.......

Time here at the hospital ticks by so fast, in part, I think because they keep Luke so busy here. There is always something to do, and Wednesday was no exception. Each morning on our door, Luke's daily schedule is posted....where he has to be, and at what time he has to be there. He had 11 official appointments, each 1/2 hour long: ADL (daily living skills), 2 sessions of PT, 2 sessions of OT, Therapeutic Recreation, 2 sessions of school, Play Group and Swimming Pool Therapy. And to top it off, he got fitted for new orthotics (leg braces), as well as attended a dog show AND attended his sister's mini hospital birthday party. Here are some pictures of the day:



Working on estimating skills and non-standardized units of measurement here with teacher Ms. Lisa, we discovered that Luke was 6 pencil lengths long. Ms. Lisa is an excellent teacher incorporating many new things for Luke to learn like touch point math.
It was Luke's first day of Pool Therapy and he worked out HARD for a 1/2 hour. I was so proud of him. With the water's support he could kneel and side walk for a long time. It was very good exercise and strength-training. Ideally, they said they would have him doing pool physical therapy 3 times a week.
After his day's work, one of Gillette's orthotists named Aaron came to our room to mold Luke for his new orthotics (ankle-foot braces). They will be done in 24 hours. Our private orthotist, Bob, has always done an exceptional job, but it would have taken about 3 weeks to get them from him. Luke got to choose a design for the back of the braces....it will be a dog on one leg and a police car on the other. He was thrilled those were two of the choices.
Twice a month at Gillette, private people pull in their prized pooches for a Pet Production! There were four dogs at this dog show doing their best tricks. It was so fun! Here, Luke is pictured with a super smart doggie named CoCo.
Back to the room to celebrate sister Sydney's 9th birthday.....Luke wrapped up his Ipod Nano he received last week at the hospital. It was just what sister wanted, and needless to say, she was thrilled!
Whew! Time for bed!! Luke's bed can be raised up very high with the touch of a button. It's easier on mom and dads' backs to tend to Luke when they don't have to bend over. We call this his MONSTER TRUCK BED! Also pictured here is Luke's stuffed dog, "Big Buddy", (yes, I know, it has already been mistaken for real several times here at the hospital). His cousins from Franktown, Colorado sent it to him, and Luke sleeps next to it every night!

Standing Tall!

Our stay here at Gillette is halfway through! Luke is keeping up with his rehab schedule and his team states that he will be here the full six weeks as planned. This will put him back home for good somewhere around January 20th or 21st. He has started doing some standing with lots of assist...his knees buckle after about 30 seconds. If he wears his knee immobilizers to keep his legs straight, he can stand for longer. On Saturday, it was Zach's turn to spend the day with Luke and he was able to see first hand all the work that Luke is cranking out. One of Luke's favorite toys to play with during therapy are the helicopter whirly-birds. He can now make them hover on the ceiling for 5 or more seconds before they fall. Playing Candy Land with Zach and his therapist is also fun. (Lying on his belly helps strenghthen his back.)
Luke was happy to have his friend/neighbor/secretary from the Kindergarten Center come visit him at the hospital bearing a huge plate of chocolate chunk cookies. Sally and Luke worked on writing a letter to his teacher and classmates to be delivered Monday when school starts again after winter break. Luke also will start his classes again Monday with his hospital teacher Lisa, a St. Paul teacher. She was out on winter break as well. Luke did 11 book reports during the two week holiday and is excited to show Ms. Lisa his book journal.