Update from Jodie (Mom)
It seems like I’ve fallen off the “Blogger’s Wagon”. It’s been about two weeks since I’ve had the time and energy to put my thoughts into blogging. Sorry to all the followers out there that are anxious to hear about my Kollin’s progress. I thought I would begin today by taking you through a typical day in the hospital. By the way, today marks the 7th full week since KPG’s accident. Life is so very different than it was---AtI open the blinds in Kollin’s hospital room to let in a little natural light, and to let him know that it is morning. He’s slept pretty peacefully, only waking a few times asking to be turned onto the opposite side that he is lying on. After insuring that he is comfortable, I fall back onto my couch-like bed instantly asleep. I can almost keep my eyes closed through the whole process now. My legs get me up and walk me to his bedside, my hands and arms do the turning, and pillow placement between his knees and behind his back. I pull his covers up, tuck him in, and kiss his cheek, all in a sleep walk manner. But now it’s a new day. Kollin takes after me, he’s not really a morning person. He does better if he eases into the day so we take our time to greet the sunrise.
ByI’ve ordered his breakfast from “Room Service”—French toast, scrambled eggs, watermelon, and cranberry juice. When his meal tray arrives it is about and his eyes have yet to open. I butter his French toast and put the syrup on. Today he needs to try cutting it himself as he needs to pass of some goals in the fine motor skills category. Instead he stabs the fork into the triangle piece of bread and brings the whole piece to his mouth for a bite. Hmmmmmm perhaps we need to set some goals in the etiquette category. During breakfast from the tech begins taking Kollins vital signs, and gives him his morning meds, as I begin to put his ted hose on. These thigh high support stockings help to keep his blood pressure from plummeting too low. While he is in bed relaxing he doesn’t need to wear them, but today he will be up and working hard, so they are a must. They are buggers to get on, but Gary has come up with a pretty good technique for getting them on. I hope he never has to use his technique on me. J A knock on the door tells us that the Dr.’s are beginning their rounds. The door slowly pushes open and in comes 4 or 5 faces. They poke, prod and listen to his heart and lungs. “How are you feeling today?” they ask Kollin. He responds with a half hearted shrug and a, “You know.” He is getting bored of the same ole routine. By the time they leave they have at least gotten a smile out of him.
AtTierra, the Occupational Therapist (OT) arrives to help him get dressed. This is the most frustrating part of his entire day. “My legs hate me!” he exclaims as he tries to lift them one by one and strategically place his heavy foot into the leg hole of his shorts, all while trying to keep his balance. Feet through holes now, he rolls side to side as his hand hooks inside the waist band to pull the shorts up and onto his waist. Whew!!!!! Time to take a short breather before sitting up again and pulling the shirt over the cumbersome neck brace that needs to be worn for 4-6 more weeks. The doc says his neck is healing, but the fusion is still very weak, as well as his ligaments and tendons supporting it. Time in the brace will be the best thing. Clothes now on, he swings his legs over the side of the bed, to begin the transfer into his wheel chair. Practice makes perfect and he is getting so very good at scooting sideways on the sticky sheets, popping himself up and onto the seat of his chair. A few more adjustments, and his butt is centered and feet are on the foot plates. Seat belt on he begins the task of socks and shoes. Tricky, tricky, tricky are the socks and shoes!!!!!! I watch in amazement at the patience he exhibits in trying to master such a simple task that is so easy for me to do. I literally have to hold myself back from wanting to reach in to help him get the sock over that pinky toe-- That rascal of a pinky toe that won’t cooperate today. But Tierra is there giving him tips and teaching him how to be independent. It’s better for him if I just watch. Somewhere in my memory bank I can hear Kollin as a toddler say, “I do it mamma!!!” He has the same determined look on his face as he did back then, 12 or so years ago. “Socks will get easier the more you practice.” I hear Tierra say. Just like shoes have gotten easier. He can now even tie them loosely on his own. Time to wheel over to the sink and brush those pearly whites. I think Kollin has brushed his teeth more since he’s been in the hospital than he did his whole life before. Whenever I would remind him to brush his teeth before bed or before he headed out the door for school, he would say, “Aww mom that’s what the dentist is for.” Cringe, Cringe!!!!
By now it’sand the speech therapist is here to walk him down to her office. I usually take this 30 minutes to brush my teeth, comb my hair and put my bra on—haha. While at speech he will work on school work—math homework, or reading. We started reading Enders Game this summer and I told him he can’t see the movie until he finishes the book.
AtI come get him and walk with him to the gym next door. Lisa his Physical Therapist (PT) greets him and they go to work. Push ups, dips, transfers, rolling, scooting, balancing, lifting legs, all while cute Casey Corry, is either cheering him on, or throwing a ball at him that he caches mid-dip. Casey, who is the therapy aid, and KPG have a special relationship. She teases him, and he teases her and it all makes for a super fun time at therapy. She is like a really cute big sister to him and I don’t know how we would get through the day without her!!! Therapy is hard, but with Casey there the time fly’s by. The newest thing Kollin has been working on during PT is “Popping Wheelies” in his wheel chair. How dangerous you might be thinking, but a necessary skill to help him navigate up and over curbs. He is getting really good at it.
Atit’s time to book it over to the U for some time on the FES bike. We arrive by , and usually by , James has Kollin hooked up and ready to start his 30 minute session. On MWF he works on his legs, and on TTH he works on his arms. This Functional Electronic Stimulation bike helps to keep his muscles from deteriorating. It’s fun to watch the muscles in his legs flex when the electricity flows to them. On arm days the electrodes are also hooked up to his abs and the muscles running along his spine to strengthen his core. We finish at , peel all the electrodes off and leave by to head back to Primary Children’s. The two hospitals are connected with a sky bridge so walking back and forth between the two is pretty convenient.
Back in our room, I order KPG’s lunch—Egg salad sandwich on white, Mayo only, cool ranch Doritos, watermelon, and sprite. While we wait for his meal tray to come, he usually likes to lie on my couch bed as he is convinced it is WAY more comfortable than his hospital bed. He takes a minute to look at his snap-chats, instagram, etc. and I have to peel his phone out of his hands and make him eat. “I’m socializing here mother!!” Yes my son, I know that socializing is important, but so are these calories that you will need to get you through afternoon therapy. Kollin lost 20 pounds in the three and a half weeks that he was unable to eat. He is now battling to put weight back on, because he burns so many calories during therapy. At yesterday’s weigh in, he was up to 109lbs—an 8lb weight gain. Yay!!! But wait…… could that be from his hair that has been growing out of control since we’ve been here???? Why, won’t you let me call Mackenzie for a hair cut??? “I’m not going to cut my hair until I can walk again.” Says KPG confidently. So in the mean time, his unruly bangs are going to have to be held back by a barrette or a head -band during therapy so he can see what he is doing. The faux-hawk down the back has begun to poke out of the hole in the bottom of his neck brace, looking like a rat tail. Yikes!!!!!!! To me it would feel so much better to have a shaved head, but I guess it’s not my head. We’ll see how long it ends up--- this kid is determined to walk again.
After lunch and a few more minutes with his phone, it’s time to start afternoon therapy. Fromit’s back to OT where Kollin works on fine motor skills like zippers, shoe laces, snaps, and the impossible… buttons. He chucks the card with the buttons across the room in a moment of frustration. “I’ll never be able to do those!!!” This angry moment will fuel the fire for his next attempt. He has learned to let his emotions empower him, not get him down. He moves on to test taking with a pencil. His fingers find it difficult to hold the skinny yellow piece of wood. Kristen suggests a different way to hold it that works better for him now. He guides the pencil through a maze, and colors in tiny circles without going outside the lines. Not your typical test. I watch him biting the inside of his bottom lip in complete concentration—he is a perfectionist by nature, and wants so badly to do a perfect job. His hands don’t work like they used to, but his movement and coordination with them is getting better everyday. He can now eat soup, and maneuver the spoon without spilling a drop. Way to go son!!!!
Atit’s back to PT. Today Lauren has arranged benches of various heights in one big long line from his wheel chair down to the end of the room. “Let’s practice scooting sideways and transferring from one bench to the other, until you are on the ground.(high to low) Kollin does quite well until his legs stop following him. Time to stop and re-evaluate the process. When you get down lower and lower to the ground, your legs will need to be pushed out in front of you instead of trying to keep them bent. Ahhh this works much better—finally KPG is seated on a mat on the ground. He picks up and arranges his legs in criss cross apple sauce. (Indian style for those of us in our 40’s) Push, scoot, push, scoot, push, scoot, and so it goes from one end of the mat and back. Then back onto the benches--- going up hill this time, and it’s a lot harder going against gravity. (low to high) A few tips from Lauren and he’s got it down. He stops to take a short rest, leaning back onto Lauren, about half way to his chair. His ARMS are shot!!! They are totally fatigued to the point of exhaustion. They have now become his only tools for major transportation. Lifting, scooting, popping, and wheeling. They ARE getting stronger, but the day has not yet come when all of these arm movements will be second nature for him. That is going to take a lot more time and a lot more effort. But it WILL come.
It’s been a long day by the time we are back in our room at. Kollin is physically tired and worn out, but he’s also proud of his hard work today. I am also worn out, even though all I did was watch. Emotional fatigue is what I suffer from. From we have some quiet time. Often we will greet a visitor, or watch some TV. Then it’s dinner at and time to start the bedtime routine of : Bowel program, shower, nighttime meds, and the changing of the guards, just kidding…. I meant to say the changing of the pads in his neck collar. He is usually tucked into bed around -10:00ish. Sleep is important because is a new day to work hard and get stronger so we can go home. Kollin has set a goal to be home for Halloween so he can scare all the little kids in our neighborhood. He has lots to master and perfect in the short weeks ahead. Home, Home, how we miss being home. Thank you once again for getting us through these difficult times through your love and prayers and with the help of our Lord and savior, Jesus Christ we will Conquer!! And we’ll be home before you know it!!!!