Kinley spinal fusion surgery T3 to L5

Kinley spinal fusion surgery T3 to L5 --   Thursday 1-17-13
Surgery went well and she should be in PICU shortly. Surgeon
said they were able to get a very good correction on the spine. We
actuall just saw the x-ray and it looked great. Had to give her 2
units of blood during procedure but said that is very common. Will
post more details later. Thanks to everyone for your prayers and
encouragement.

Day 1 wrap up --    Thursday 1-17-13
We got to see Kinley late afternoon in PICU and she looked pretty good considering what she had been through. Face pale, lips, cheeks, eyes were puffy due to being face down on the operating table for 5+ hours and taking in lots of fluids. Evidently she started pawing at her breathing tube and since she seemed to be doing ok they went ahead and removed it. By evening she was starting to look better although was still very sedated. She whispered a few words once in a while and then would drift back off to sleep. Blood pressure wasn't up as much as they were wanting it to be so trying to get it there with some meds. Also a few nausea issues so gave her something to help with that as well. Wonderful, compassionate nursing staff here in PICU and everyone on the surgery team was fantastic too. The lead surgeon came out right after surgery and sat down with us to go over everything, answer our questions, etc and even tracked us down later to give us a copy of the xray that showed the rods, pins, etc and how straight her spine is now. Wow what a difference from the "before" xray for sure. Probably will be in PICU until Saturday but an outside chance she will go to private room late Friday. Thank you again for your outpouring of love for our kiddo.

Day 2      --      Friday 1-18-13
Overnight was a little rough with some lingering nausea but that seemed to subside by morning. Also her blood pressure situation stabilized so they were able to discontinue those meds. During the morning she had a couple of breathing treatments as well as getting her PCA pain med dispenser set up. Physical therapy came in before noon and Kinley sat up on the edge of the bed for the first time. She was a little scared about that but stayed up for several minutes. In the afternoon she had another breathing treatment and then physical therapy came back and showed Suzie and I the proper technique for helping her sit up. We were able to help Kinley transition from bed to a recliner type chair and she stayed there for about an hour. The main spine nurse says she is doing very well and is a "rock star". Around 5:30 Kinley was moved from PICU to a private room on the 6th floor where she will stay until going home next week. Suzie immediately put up a poster of Kinley's favorite singer right now and that would be Harry from the band One Direction. She had another breathing treatment and now is getting some good sleepy time. I of course am taking advantage of that by watching some NBA hoops on ESPN. She doesn't let me do that when she's awake. :)


Day 3 -- Mid-day update   Saturday 1-19-13

Hi all, It's Suzie. Kinley had a good night. They turned her every 2 hours and she was pretty good about getting back to sleep. She is also having her respirtory treatments every 4 hours and does better at each visit.
Late morning she sat up on the side her bed, walked about 12 feet with the help of a walker and sat in the recliner for about 50 minutes. She didn't seem to have any pain but cried as she was very scared that it would hurt. She ate her first real food (other than Jello and crackers) while sitting in the chair - a pancake and some mandarin oranges. She's now back in her bed completely wiped out and asleep.
I got a good night sleep in the hotel across the street while John stayed in the hospital with her (we're switching off). He slept in the recliner and, at one point, tipped it back so far that it fell over backward - right when one of nurses walked in. I thought that was funny. :-)
We were told there were 3 therapy dogs scheduled to visit our floor today so Kinley is looking forward to that. I'll post a pic later today.
Thank you again for all the encouraging messages and texts.

Day 4  --- Mid Day      Sunday 1-20-13

Today Kinley sat in the chair for about 90 minutes and also transferred to a wheelchair so she could go to the therapy gym for some PT. She practiced standing up and then tossing some bean bags into a small basketball goal. She has a sweet left handed shot just fyi. :) After that we went to an area at the west end of our floor 6th) with lots of windows where you can look out at the mountains and also downtown. While there she ate some mashed potatoes and we talked about being brave in her recovery. Kinley's big hurdle right now is overcoming her fear of movement and that it will hurt her back. She is very afraid of sitting up, standing, and especially walking. However has powered through it even though there have been lots of tears. She also had several breathing treatments today, had another iv removed, and the surgeon came in to check on her. Dr said she is doing better than expected so that is encouraging news. Her appetite seems to be improving and she has requested cheese quesadillas for dinner. She has watched some tv and movies today and i let her borrow my Kindle Fire for a while. One of her favorite things is to watch Rachael Ray or Laura Vitale cooking videos on youtube........yep you read that correctly. Well gotta order up some quesadilla's so signing off for now.

Is this a date?

It's 7:45 a.m. on a brisk November morning in Denver.  Suzie and I are sitting at a small table for two at Panera on Colfax Ave enjoying a quick breakfast and chatting.  Our conversation ranges from the presidential election to family vacation to what our next vehicle might be when we replace my car.  Next to Suzie's coffee cup sits a round, black, restaurant style pager with gently blinking red lights.  Across the street is Children's Hospital and Kinley is about 15 minutes into a 60-90 minute MRI scan of her spine.  The pager is there so the radiology nurses can let us know when it's time to return to the recovery room and be there when Kinley begins to awaken from the anesthesia.  This appointment is one of several exams that are scheduled for November and all of them are leading up to the main event which will be spinal fusion surgery on January 17th.  Kinley has developed scoliosis over the last couple of years and the curve has progressed to the point where surgery is a necessity.  The next leg of our journey as parents of a special needs child is beginning.  Though the circumstances weren't exactly ideal that morning it was actually nice to spend the time together at Panera.  We haven't been able to get out much as a couple lately which made me wonder was this a date?  Hmmm.  Later that day we joked with Kinley that we had gone on a date.  Not sure she was amused.  What I do know is that after 18 years of marriage I still love hanging out with Suzie..............even when we're "on call". 

Children's Hospital Colorado

One of the reasons we moved to Denver in July 2011 was to live in a city with a world class childrens hospital.  We have been to Children's Hospital in Aurora several times since our move and our most recent visit was to meet with a new team of neurologists.  We had previously been to the MDA Muscle Clinic and Metabolic Clinic at Children’s and were really impressed with everyone that examined Kinley and talked to us about her condition.  This new team is part of the Mitochondrial Clinic which is a specialty clinic that focuses specifically on mitochondrial disease patients so we were excited to hear what they had to say about Kinley.  Dr. Abbie Collins in particular was amazing with Kinley and gave her the most thorough neurological exam I believe she has ever undergone since the onset of her symptoms in 2002.  We left the appointment with a much better understanding of the three primary physical issues that Kinley is dealing with (Parkinsonism, Myoclonus, and Ataxia) as well as learning about some new strategies that could possibly help Kinley improve her quality of life.  During this visit, as well as a recent trip to her pediatrician, we learned that Kinley has gained 20 pounds over the past year which is awesome!  In spite of her neurological issues her overall health has been very good and for that we are extremely grateful.  We still don’t know what the long term prognosis is for Kinley but we are confident that we have some of the brightest minds and compassionate hearts in pediatric neurology on our team and that is a great feeling.

http://www.childrenscolorado.org/

Children's Hospital Colorado once again has been ranked among the nation's top children's hospitals in the U.S. News & World Report 2012-13 Best Children's Hospitals rankings, now available online at www.usnews.com/childrenshospitals. Children's Colorado has been ranked in all ten specialties. High rankings in a minimum of three specialties qualified Children's Hospital Colorado for the 2012-13 Best Children's Hospital Honor Roll, a distinction awarded to only 12 children's centers nationwide.

Fathers Day road trip

This past Sunday I once again took part in what has become a Father’s Day tradition for me since 2006.  I drove Kinley to MDA Summer Camp and left her there with a wonderful staff and other kiddos to have a week of fun that didn’t involve me at all.  Kind of ironic I guess that Father’s Day each year marks the beginning of a week where I don’t have to be a father at all.  Don’t get me wrong I adore Kinley and love being her dad but this is a week that I look forward to all year long.  Taking a break from dad duty and caregiver duty is a real treat and I take full advantage of the down time.  This year was her first time going to camp here in Colorado and the facility is just off of I-70 near Georgetown.  After getting her settled in her cabin there Suzie and I went on to Breckenridge for a few days of biking, napping, eating, gondola riding, hiking, napping, eating, shopping, strolling, and just generally goofing off.  I loved hanging out with Suzie and just enjoying our “responsibility-less” time together.  As usual now is about the time during this week when I start to miss Kinley a little and by Friday morning I will be very excited to see her again and find out about all of her camp adventures.  Hopefully she will have a big ole hug for her dad when I arrive.  If she doesn’t……….well I’m gonna give her one anyway.  Cheers!

Fun on the diamond

I love baseball.  Some of the greatest memories of my youth involve playing baseball at Southwest Boys Club and West Urban in Wichita, KS.  It is a wonderful game that encompasses skill, speed, courage, power, and strategy.  It also has a joyous emotional component that comes from being played in the spring and summer when the leaves are green, skies are blue, and the sun is shining.  This spring and summer I have been given the opportunity to coach two different baseball teams.  The Red Sox are part of an adaptive baseball program in Denver through Sports Made Possible (http://www.sportsmadepossible.org/) and Kinley is on the team.  A lot of the kids get around the bases in power wheelchairs or with the aid of a volunteer helper pushing their manual wheelchair or holding their hand while they walk or run.  Most need assistance with every aspect of the game including holding and swinging a bat or  throwing a ball.  Still they play the game with an excitement and enthusiasm that is an inspiration to everyone at the ballpark.  These kids are so thrilled to hear their name called by the announcer when they come to bat and they are smiling from ear to ear when they cross home plate.  They are incredible.

My other team is a group of typical fifth and sixth graders and the truth is I haven’t even met these players yet.  I volunteered to be an assistant coach through the Parker Recreation department and a few minutes later I was a first time head coach. J  I am excited about this experience and next week will get my roster and schedule so I can begin the journey.  Though I’m a little overwhelmed with all of the details and responsibilities I have to say there is one primary goal I have for the kids this summer.  I hope that they will play baseball with the same joy, attitude, and spirit that I see in the Red Sox.

Play ball!


Another great adaptive league is in Wichita, KS and they do a terrific job as well.
http://www.miracleleagueofwichitaks.org/

May-day, May-day........we have a Kinley!

Today was Kinley’s 12^th birthday.  12.  Wow……….next stop teenageville.  Well I’m happy to report she had a fantastic day complete with presents, well wishing phone calls from family and friends, and of course cupcake treats with classmates at school.  I definitely had a lot going through my mind today as I took it all in.  This  birthday also marks an anniversary for me in this journey as a special needs dad.  Ten years ago today was the last birthday she had where she could walk.  In fact at that time she hadn’t started showing any symptoms at all so you could say it was her last “normal” birthday.  Oh how I wish I had burned those birthday images much more clearly into my brain with photographs and videos but it never entered my mind that day in 2002 that things would never be like that again.  Today though I also thought about how grateful I am that she is healthy, continues to grow, and shows no signs of her disease progressing. 

Also today as if the number 12 wasn’t enough to try and get my arms around we also took Kinley to a transition meeting at the middle school she will be attending next year.  Middle school is something that we have always viewed with some worry and trepidation where Kinley is concerned.  Will she continue to make new friends?  Will her typical peers start to ignore her because she is "different"?  Will she encounter a bully for the first time?  I have to say that after meeting the staff today at Sierra Middle School I have a sense of calm and peace that Kinley will be just fine there and in fact continue to thrive.  During the meeting I noticed how Kinley interacted with these new adults that she had just met.  She was confident, personable, respectful, and also gave them a glimpse of her goofy sense of humor.  I am so proud of her for the young lady she is becoming.

Happy 12^th birthday Kinley!

My purpose is _________.

It seems a lot of people my age tend to ponder the idea of what exactly their purpose is in life.  I used to believe my purpose needed to be tied somehow to business or some outside activity that benefited other people or society.  Over the last few years however I have come to wonder if my purpose really isn’t just to be a great dad and caregiver for Kinley while she needs it the most.  At this time of my life I can’t think of anything more important than being present for Kinley as much as possible and also trying to help my wife with all of the challenges that we face day to day. Maybe for right now that is all I’m supposed to be concerned with and then in a future stage of my life I’ll have a different purpose where I can impact other people.  I've often thought what if I would have been a lousy dad to a “typical” child and perhaps I'm better suited to raise a daughter with Kinley's needs.  If it’s true that our God given gifts are to help us fulfill our purpose then maybe mine are already doing just that.