WORK and PLAY

It amazes me how quickly Luke has made progress in his abilities. Just 3 days ago when he was put on the pedal bike, he could barely make one rotation around pushing with his feet. And now, he can cruise down the hallway with ease. He does lose some steam and wants to be pushed from behind, but much of it is pure distraction. He wants to look at the interesting objects on the wall as he goes by them or he wants to people watch/visit with them.
He is also now beginning to "half-kneel", (which is half of a tall-kneel)--he is a little wobbly, but becomes more and more stable each day. This is a big accomplishment for him. He is also starting to do some knee-walking. It's all baby steps, just like how an infant progresses through babyhood and toddlerhood from rolling over, to sitting, to crawling, to standing, etc. It is fun to watch his progression!
Luke enjoyed riding this "arm" bike with his OT "Carrie" yesterday....all for upper-body strengthening. He also began working on some daily living skills with her, like getting dressed. He put on his own socks for the first time with great ease yesterday. Before the surgery, he was so tight, he couldn't bend down quite right to do it. Yea!
Some singers came to carol for us here at Gillette....a Lakeville South High School group. It was all I could do to stop Luke from strumming his guitar along with them.

A boy who had surgery moved in with Luke yesterday afternoon....so we have a roommate again for a "few days" ...... according to the nurse.

This afternoon we have a meeting with Luke's physicians and therapists to get a "tentative" release date from the hospital based on his progress....we'll let you know what they say. On New Year's Day, there is only a half day of therapies, so Luke gets another pass to come home for a quick visit and back early on Friday.

After a hard day's work....a little leisure time! (Yep, you got it, Legos! (This is a picture of the play room that is right on the unit.)

Back to Work!

We arrived back at Gillette ready for a full day of therapies on Friday, the day after a totally awesome Christmas! Luke got to scoot around the halls of the hospital on a scooter board to give his upper body a workout. He has always had huge six year old biceps, often using his arms to compensate for lack of lower body/trunk strength.....so it was fun for him to show off his muscles on the scooter board.














This is 4-year-old Ajaiye and Luke in their standers. Ajaiye is from Aurora, Colorado and she had a Rhizotomy the same day Luke did. Her Mom researched the top 3 hospitals (St. Louis, New York and St. Paul) that do this procedure and liked St. Paul's program the best. (Aren't we fortunate to live within an hour of this great hospital!) Luke and Ajaiye are the only two kids on the unit now rehabilitating after rhizotomies. There are 6 other kids on the unit either recovering from serious spinal cord injuries or some other disability. Luke has gotten to know several of them well. He has commented on missing his roommate Sam at times, but it's nice that we can spread out in the double room and not bother anyone if we're too loud.

Santa Clause is Comin' to Town!

With most of our relatives living in Colorado, our family spent a very intimate time alone at home Christmas Day! It was wonderful being together again.

Earlier this week I was trying to motivate Luke to work a little harder in PT. I told him that if he didn't, Santa would bring him coal....further explaining what coal was. He hadn't mentioned it since, but, the first thing Luke said when he woke up in bed Christmas morning was, "did Santa bring me any presents?" When I told him "Yes!", Luke looked relieved. He then said, "I had a plan for the coal, I would just sweep it into the trash and play with my other toys." I guess I made an impression on him. . . . . . poor kid!

Luke had "at home" physical therapy assignments to work on with Mom and Dad throughout the day between eating, opening presents and playing. Mom is very happy to report that we stayed on track and were able to accomplish a lot of PT during our play. We did some tall kneeling, practiced crawling (spotting Luke's hips was required so they wouldn't fall from side to side). We did side-sitting with a supporting arm and with no arms. Luke also spent a lot of time laying prone on his wedge that we brought home from the hospital. (Zach even got some prone time in as well next to Luke.) Luke had a chart of four different exercises to complete and we did that, too!

At one point, when Luke was playing with his Thomas the Train set, he became very frustrated when trying to position himself comfortably. He broke down with a few tears and moaned, "Why did they have to disconnect my body??" I hadn't quite heard him put it that way, but I stopped what I was doing and attempted an explanation that seemed to satisfy him.

Back to our regular schedule on Friday at the hospital! Two weeks down, four more to go!

Merry Christmas!

Hello everybody. If you were wondering if the Seufer Family was spending Christmas in the Hospital....the answer is NO! Luke's physician gave him an overnight pass to come home for Christmas! The main requirement was that he be able to make transfers to and from the car. After a full day of therapies, today, on Christmas Eve, we loaded up Luke lying flat in the back seat of our Honda.

Buckled in with a fancy "lying flat" seat belt from the hospital, Luke was ready for the ride home! He is only allowed to sit upright for 30 minutes and our drive home to Farmington is about 40 minutes, hence the flat car position. He was comfortable and happy all the way home while visions of "sugarplums" (presents under the tree) danced in his head.

Sparkie, a 12 year old Basenji therapy dog got in a quick visit with Luke before his departure. Luke was able to pet the dog from his new Gillette vehicle.... which you see in the photo.....a motoring device called a "Stander." He has to stand in this 3 times per day for 30 minutes at a time. He really likes it and learned to do a 360 in no time at all.

At Physical Therapy Luke did 26 leg presses (counting to the ABCs) on a fancy machine at the gym. Stronger every day is the goal.
Christmas Eve, and all 5 of us are home together! What a perfect Christmas!

It's WILD Around Here!

To all our sports enthusiast family and friends: you may enjoy this photo of Luke and two members of the Minnesota Wild Hockey team (Pierre-Marc Bouchard,96 and Stephane Veilleux, 19). There were lots of news cameras following them on their visit with the kids at Gillette. They caught up with Luke during his afternoon Physical Therapy and gave him a t-shirt and autographed photos of them. Since we don't follow the Wild (I'm sorry....).... he was like, "oh, O.K., thanks for the t-shirt."

Another cute craft story tonight. Luke and a couple other little girls were making snowflakes out of popsicle sticks. They glued sequins on the sticks to make them sparkle. Luke was looking at all the extra popsicle sticks lying in the middle of the table. He then innocently asked who were the ones who had eaten all of these popsicles.













Since Luke's hospital Kindergarten teacher at Gillette works for the St. Paul school district, she is gone on winter break, until January 5th. She left Luke some book report assignments. After we read a book, we have to write the title, 3 facts about the book and Luke has to draw a picture from the book. It's been fun working with him on this. He also has a pile of work that his own teacher from Farmington has sent him to keep up with...we do about a page a day.....can't let this Kindergartener "fall behind."

During physical therapy today, Luke began to relearn to crawl again. Then, Amy, his primary PT put Luke on a big trike. With seat belt fastened, helmet on and feet strapped in, Luke began to pedal. He went really slow at first, but showed a bit more "umpf" after riding around the hospital hallways for about 10 minutes. At home, when there's no snow in Minnesota, Luke rides his two wheeler with training wheels all over the neighborhoods with Mom and Dad. I expect that this strengthening activity will become his favorite. (Have you heard of the Fisher Price Smart Cycle?....a bike that you hook up to your TV and when the child pedals can do learning games?......that's what Santa is bringing in a couple of days to Luke, shhhh).

Yellow Jello

Luke was extremely happy yesterday that he got fitted for his wheelchair! He can only sit in it for 15 minutes 3 times per day till he builds up his tolerance level. It's not a problem for him though, he hardly wants to get out of it. In one day's time, Luke can already motor around independently in it....he's pretty proud of himself, and won't let me push him.













Luke's Kindergaten Teacher Mrs. McRae sent Luke a care package from her and all of Luke's classmates. Each student drew Luke a picture, many were his favorite things like police cars and dogs. They all signed their names and put a school picture of themselves on each. I literally cried to see all the love for Luke they put into their projects for him. We got a three-hole punch and put all their pictures to him in Luke's journal notebook so he can flip through them as he likes. "THANK YOU" Mrs. McRae's class....you made Luke so happy!

Today is Saturday and Luke only had a half day of therapy in the morning. Sydney was able to spend the entire day with Luke and I. It was good for both of us that she was around shining her usual sunshine and helpfulness. I know she enjoyed seeing a snapshot of Luke's daily routine. She spent a lot of time bonding with him.
At Physical Therapy, Luke showed Sydney how he flies whirly-bird helicopters across the room while doing some sitting and trunk strength training. He also practiced rolling and bridges (lifting his bottom in the air while laying on his back) and holding himself in certain positions: side-lying, up on an elbow, up on an arm, etc. It's rewarding to see him growing stronger and stronger each day.












At lunch time, Luke and Sydney enjoyed fellow-shipping and eating "yellow Jello" together. Jello is one of Luke's favorite "junk foods".
In the afternoon, the pair attended "Camp Get-A-Well-A".....a fun Saturday afternoon activity for the kids. Gillette does this event twice a month, and today at "camp" there was a magician! He did many tricks. Luke said his favorite was when the magician pulled a never-ending piece of toilet paper out of his mouth. Both Sydney and Luke got to be volunteers and Luke was befriended by the magician's raccoon.














Now, it's bedtime and my two are lying together in Luke's bed winding down with a movie. It's hard to believe that we've been here 11 days already.

"Wanna Hear a Funny Story?"

Let me introduce you to Joe, a high school senior, who was at Gillette this week volunteering his time to work with the kids. He was helping Luke make a wreath Christmas ornament out of spray painted green jigsaw puzzle pieces. The kid making a wreath next to us was trying to pick up his completed project, but it was all sliding apart because there was so much glue on it. When Joe began the project with Luke, he handed him a bottle of Elmer's and gave Luke a suggestion. Joe told Luke not to use too much glue because it would take forever to dry. So, with a straight face and in a very serious tone, Luke reassured Joe, "that's O.K.......I'm here till January." Joe burst out laughing. It gave Mom some laugh therapy, too!













This is Abby, the daughter of some of our family friends. They popped in for an early morning visit while Luke was eating breakfast. It was refreshing to see familiar faces from the "outside".

Our church sent Luke a bouquet of balloons. Luke was so happy--he totally loved it. He had me tie them on his prone cart, so we could go out in the Gillette Lobby for a walk "and make other kids happy". We did, and we saw some babies smile and kids asked Luke if it was his birthday. Some good conversations kid to kid were had. The next day Luke wanted to take them out again on another walk, and he asked me if we could leave them in the lobby for all the kids to look at who were waiting for their appointments, "to make them happy, too. " Below is a picture of the hallway entrance of our unit.
Then we had to go on another mission "to make kids happy" and Luke took his guitar out. He told me he had to find ten kids to play for. We found one teenager girl in a wheelchair named Pandora who couldn't talk, but smiled hugely and her Mom said Luke made her day.

This is Sally, who is a head, head nurse and is always so friendly to Luke. Luke sang her "Feliz Navidad".

It may seem like all fun and games, but I've been trying to show the lighter side of some of the fun we have in the evenings. Luke was exhausted from eight different appointments from 9:00am to 4:30pm, but it was too early to go to bed after dinner. Luke is working very hard with his therapists (I get worn out just watching all of the activites for strength training they have him doing). Since Luke has to spend so much time on his belly (for his back to get stronger), we try to get out of the room on the prone cart and be with people. Luke is supposed to get his wheelchair today! He has been asking for it for several days now. He can't wait to show it to you.

Policeman for a Day

Luke had another full day of both Physical Therapy and Occupational Therapy...sessions in both the morning and the afternoon. His PT had Luke leaning back on her chest in a near upright sitting position while they played "Tony" checkers. He had to reach, reach, reach for the game pieces on the table in front of him, forcing him to sit more upright with each reach. As his back heals, he'll be able to sit more and more erect as each day passes.

Luke had his first day of hospital Kindergarten with his hospital teacher, Miss Lisa. She has a one-room school right down the hall from Luke's room. He went to see her for 1/2 hour in the morning, and then again for a 1/2 hour after lunch. Luke had been looking forward to starting school here since the weekend and proudly brought his all-in-one journal/school notebook/guest book to class to work in. He misses his real teacher, Mrs. McRae and his classmates.

The St. Paul police department came with Santa and lots of toys to visit the kids here at Gillette. They gave Luke a police T-shirt, police badge and mini flashlight, and a wrapped toy. After having been a policeman for Halloween this last fall, you know Luke was in his element. In fact, when Luke was riding the bus to school this year, the bus aid, an older gentleman named Bubba, and Luke, would do "police work" all the way to school each day, looking for criminals. So.....Luke had to put on his new police t-shirt and badge from the St. Paul policemen immediately. They were so nice to him. He was beaming.

In the evening, we had a going away party for Luke's roommate Sam, who had a Rhizotomy in November. Another Rhizotomy patient here, Jack, and his Mom, hosted the party. (Both of these boys are going home this week. We have learned so much from them about what to expect towards the end or our stay here, in the short time we've known them.) We ate Jimmy John's sandwiches and watched an old Christmas movie from when I was a kid, "Santa Clause is Coming to Town". You may recall the song on the show, "Put one foot in front of the other....and soon you'll be walkin' out the door". I always used to sing that song to Luke when he was really little and learning to walk. I thought it was quite appropriate for the 3 little boys watching the show who are all relearning to walk.

These boys have been getting together in the hallway in the evenings to play spys. They really keep the nurses hopping.......or should I say "dodging" the nerf darts as they pass through the hallway. These boys are so cute, that the Doctors and nurses (of course on their way to do more important things) don't seem to mind retrieving the darts for these spy boys.

Luke will miss his roommate, Sam, a 5-year old who reminds me very much of Luke, actually. Both with glasses, curly hair and great language skills.....these two boys have had some amusing (for the Moms) talks bed to bed....two great conversationalists discussing spy gear, nerf guns, wheelchairs, nurses and Christmas wish lists. I think it will be a bit lonely without Sam and his Mom, Carlynn. We already have play date plans for this spring.

Wow, another busy day...

Is this really just one day??

Luke's first day of therapies began on Monday. He had five appointments in all. They had him working on rolling side to side. He is feeling overall better now, without any pain. They are still controlling the incisional pain with Tylenol every 6 hours. From the Physical and Occupational Therapists, to the nurses, to the cleaning people to the food service staff, everyone at Gilette is so very nice, helpful and caring.

He also gets to go to a therapeutic recreation class every day for a half hour. Yesterday, they made a door sign on the computer for his room.

Luke had two different "Therapy Dogs" come visit him. You may or may not know it, but Luke LOVES dogs. He had heard there would be doggie volunteers coming to see him and he's had three come so far. He got to pet them, give them dog treats and enjoy the Golden Retriever lick his hand profusely. (The dog's owner pulled out a big bottle of hand sanitizer after!)

The Samoyed Dog named Sasha was like a gentle teddy bear with super clean, thick white, soft fur. Luke loved her.
Santa sent an elf with a little Christmas tree for Luke's room. Luke was amazed that Santa had remembered the tree he had asked for on Saturday. His grin from ear to ear was precious. Luke loves to use scissors, and he asked for them right away so he could cut off the tags of the three little stuffed animals on the tree.
Luke also had craft night (which they have almost everyday), and he made clay writing pens with his sister. After he had made two of them, he wanted to start on a third, but Mommy was ready to go back to the room. Luke gets a ride from Sydney down the hall back to his room on his prone cart. Luke has to spend an hour and a half every day lying on his belly to strengthen his back and hip flexors, working up to 3 hours a day by this weekend. Luke doesn't seem to mind it, there's always lots to do, and the time goes by quickly.
Luke even had time to serenade his nurse, Kim, on his guitar before bed Monday evening. As you can see, Luke's spirits are up, the acute time after the surgery is over, and rehab has begun....it only gets better from here on out!

Luke, age 6, underwent a Selective Dorsal Rhizotomy surgery on December 10th, 2008. Kids with Cerebral Palsy actually get "hand-picked" for this procedure. The success rate of it highly depends on the selection of the "right" candidate. Luke was chosen by 3 physicians specializing in Rhizotomys as a "hands-down" child who could benefit greatly. The surgery permanently reduces muscle tightness, and after Luke undergoes months of rehabilitation and physical therapy, he will walk more easily and efficiently and have greater balance! The goal for Luke is to be able to walk without any aids, like forearm cructhes. Through God's grace and miraculous power, we are confident that Luke will be running and playing beyond our wildest expectations! Luke will be in the hospital for 6 weeks and will have daily physical therapy for six months after that. We are prepared as a family to help Luke succeed in this "Great Adventure". The blog was named for one of Luke's favorite songs by Stephen Curtis Chapman that he learned in Vacation Bible School this past summer.

Day 3 and All is Well

Saturday: The 72 hours that Luke has had to lie flat after the surgery is nearly up. He has done remarkably well since he came out of the 4 1/2 hour procedure on Wednesday. Luke has been comfortable with pain medication, laying on his back and sides~they turn him every couple of hours. His spirits have been mostly high, with the exception of a couple of "sad" moments when he questioned the length of his hospital stay and when he could wear his own pajamas.

He has been energized by two evening visits in a row by Zach and Sydney, and always counts the hours until their return.

Luke has spent most of the time so far reading "My First Little House Books", visiting with his roommate Sam, eating (he's had an awesome appetite) or napping. He has been playing with his "spy gear" toys and a nerf gun which he uses to shoot rubber darts at the skylight window above his bed. The darts stick for a while and then fall without notice. He gets a real kick out of that.

Today, he has had a couple of disctractions from the mundane.....Santa and seven elves came to visit. Luke asked Santa for a Christmas tree for his room (like his roommate Sam has), but the closest Santa could come up with was a K'nex Tow Truck Building Toy. Luke easily switched gears and Mommy and he started building right away.

The second "new" but destined to be extremely familiar activity, was Luke's introduction to the prone cart. This cart is where Luke will be spending time on his belly to strengthen his back muscles. He'll work up to being in the cart 3 hours per day. He got in it twice today. The first time, the Physical Therapist (PT) trained Mom how to do it, and Luke's back hurt, so he was only in it for about 5 minutes. A couple hours later, he lasted 35 minutes without complaint when Mommy put him in the cart, and took him to craft time. There, we made a Christmas ornament (shhhh, Luke dubbed it as a Christmas gift for Sydney, and wrote her name on the back of it).