A Wonderful Christmas I Do Not Remember

Christmas 2001 was probably terrific.  I'm sure I received some great gifts and ate lots of incredible holiday treats.  Back then Suzie, Kinley, and I were living in a suburb of Kansas City and I imagine we went to see the lights on the Plaza and saw Santa Claus at Crown Center.  We probably went to Wichita on Christmas Eve to see my parents and had a wonderful time watching A Christmas Story and filling up on cookies.  Looking back now I wish I had been paying more attention to everything but at the time there was no reason to think that it would be any different than future holiday seasons.  Today I was looking at a picture that I walk by in our home everyday but this time I really got to thinking about the significance of the picture.  In early December 2001 we went to go pick out a Christmas tree and took a few pictures of our family including one of Kinley toddling around the tree farm.  The great thing about this picture is that it captured the first and only Christmas that Kinley could walk independently.  We have had some wonderful holidays since then and I am thankful for all the things she can do today and that she has been blessed with overall good health. Sometimes though at Christmas I wish I could go back to the tree farm one more time.

Kinley post surgery update

Here is a quick update on Kinley now that she is approximately 5 months post spinal fusion surgery.  She is gaining weight, getting a little taller, and gradually getting back to her old self in some ways and in others she has a ways to go.  If you really give her a pep talk she can roll herself over in bed although it takes some big-time effort.  She can sit comfortably in a chair and is getting better at sitting in the shower chair while Suzie and I attempt to get her clean but keep ourselves at least somewhat dry. J In the mornings she is probably at 90% of her old strength “baseline” but by evening I would put her at about 40-50%.  We are hopeful that with continued physical therapy, good nutrition, and rest she can begin to keep up her strength throughout the day.  Overall though, we are very happy with her recovery from this major surgery. 

How do they do it?

ESPN runs some great human interest stories on their E:60 series and also from time to time on SportsCenter.  Recently there was an episode about a high school girl with cerebral palsy who was a member of her school’s cheerleading squad even though she was in a power wheelchair and had many physical limitations.  As the back story of the girl and her family was being told the narrator said “from the minute she opens her eyes until she goes to sleep at night Gabby needs full time help.”  Her mother then added “We feed her, we bathe her, we dress her, and help her do most everything.”  I was totally drawn in to the story and remember thinking to myself, wow, can you imagine how that must be to have to do that every single day?  After a few minutes it dawned on me that those cameras really could have been rolling in our home and captured a lot of the same footage.  The day after day, year after year grind is the toughest part of being a caregiver and also the aspect that most people will never understand unless they experience it first-hand.  However the things we do every day as a caregiver/parent become such a natural part of our routine that we rarely think about what it must look like to someone on the outside.  On this occasion I found myself on the “outside” looking in and getting a glimpse of a family that gets up every day and just does whatever it takes to make their life work while also having some fun along the way.  I would hope that our friends, family, and others we meet during our journey would say something similar about our family.

Surgery recovery update

Kinley has been home for a couple of weeks now following her spinal fusion surgery (see post op xray below).  There have been many challenging times for her and us so we are just trying to stay positive and push forward knowing that  better days are ahead.  One encouraging sign is that she is now only taking over the counter medications for pain and is usually able to stay comfortable on the couch. I know she misses her freedom of being able to get down on the floor to play with her dog Maddie or do Just Dance 4 on the Wii.  Our main concern now is controlling a new type of seizure/tremor that we first started noticing about a 7-10 days ago.  Tensing up throughout her body, jerky movements, blinky eyes, and difficulty speaking are the symptoms and it is very hard to watch. She has had partial seizures since she was about 3 yrs old but they have been very well controlled by meds so this new development is frustrating.  We are taking her in next week for another EEG brain scan to confirm that these are seizures and not some other type of neurological issue.  For now we are following the directions of her neurologist and increasing her medication to see if that can help.   Our house has been busy with visits from an RN, CNA, homebound teacher and a PT. Kinley's making some progress with the PT in strengthening her legs and back (yoga is her favorite) but the above mentioned seizures are not only frightening to her (and us) but are certainly keeping her from fully engaging in her post-op physical therapy program.  Kinley really misses school and her friends so we are hoping to get these new tremor/seizures under control so that doesn't further delay her return to school.  We are shooting for late February for her to be able to get back at least on a half day schedule and then transition to full days when she is able to handle that physically.

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.