We are Home

Sorry it has been a bit since I gave an update.  I needed a secretary with me to do my typing.  The end of the week was busy, obviously, or would have written because I have much to share.

He began physical therapy Friday.  This was the first glimpse of the work that is ahead for Keenan.  His muscles were so weak.  The first two sessions amounted to teaching us how to move him safely, getting him in the wheelchair, and helping him sit on the edge of bed.  He required a great deal of support to be held in an upright position.  Holding his own head up was even a major feat of strength. 

Saturday he began a multitude of attempts to help get his bowel working.  He battles this issue anyway, and with all of the medications he was given, it compounded the problem for him.  This became as bothersome for Keenan as his sore back I think.  Then, on top of that, all of the laying he had to do, even though he was turned from side-to-side, he developed a pimply, red rash on his back from the harsh sheets that are on hospital beds.  We got him some that were "ivory washed", but the damage had already been done and his back was itching him like crazy.  That poor guy, just could not catch a break.  (To make matters worse for his back, they would not put a steriod creme on it because it can slow incision healing.)  Our only option was Eucerin creme.

Sunday finally arrived and there was a bit of worry that we would not be able to leave the hospital, due to his bowel troubles, but they gave him more "help" and sent us on our way.  We had one more physical therapy session and he looked a bit stronger.  He could sit on the edge of a bench and support himself.  That was a good thing.  We also had him attempt to walk to his wheelchair, but he was not ready for that yet.  So, it was time to make the journey to the airport to begin our trip back home.  We had two flights and a long day ahead of us.  Kids who have this procedure are encouraged not to sit in the same position more than two hours without a break.  Our first flight was an hour, but with a very short layover and a big airport, when we landed in Atlanta, we were worried we would even make the flight, let alone allow him some time to lay down for a break.  Well, to our surprise, the flight to Wichita had been delayed about 1/2 hour, which gave Keenan about 15 minutes to lay down.  God knew he needed a break and provided it!!!!  How cool.

All three of us could not wait to get off the plane in Wichita, to see if anyone would be there to greet us.  (I knew Mom and Kaylee, and probably my sister would be there.)  What I witnessed when we turned that corner and headed down that ramp was one of the sweetest sight as a mommy I would ever hope to see.  Mom, Kaylee, Teresa, J.M., Susan, and Chance were standing there with balloons and an awesome sign that had flashing lights!  Once Kaylee noticed us, she walked up that ramp, looked at Keenan and smiled, turned around and took his hand and proceeded to walk with him down the ramp to join the rest of the family.  As long as I live I will treasure that moment!!!  There was such a sweet innocence and I am so lucky I was able to witness it.

Monday morning brought a potential bump in the road.  The rash I mentioned earlier has been an irritation for Kee almost non-stop.  For the most part, he does a great job leaving his back alone, and I had him sleep with me in hopes of catching him if he started to scratch in his sleep.  Well, this morning, he had some seeping that had occured at some point during the night.  It appeared to have been confined to the dressing under the tape that is covering the wound, but having had issues with leakage from wounds before, I became nervous.  Following the discharge orders from the hospital, I called to report the situation and the doctor I spoke to said having a little leakage is not terribly uncommon and to keep an eye on it, but to report if the situation got worse.  Great, the thing that is hardest for me to do... wait and not worry when it involves Keenan.  You would think I would have cleared that hurdle by now, but it is new and fresh every time.  So, I earnestly prayed that our Great Physician would heal that wound completely and that I would be cautious, but not consumed with worry.  My desire is truly to lay it as God's feet, trust, and move forward, but that is just sooo very hard to do as a parent, isn't it????

I know this one is long, but I have saved the best for last.  Keenan made some awesome strides today!!!  This morning he asked to be put on the floor so he could be down with Kaylee.  We helped him get down and then he got up onto all fours.  This was a big step for him in just a day.  But wait, there is more!!!  We had Brad's family over for dinner and at one point, Keenan and my nephew Chance had been building with Legos in my bedroom.  Chance reported that they were done and Keenan wanted to come back and join the rest of the family in the hearth room.  I went to get him, so he could be carried, and he proceeded to let me know he wanted onto the floor so he could crawl.  I was a bit nervous, but remembered that he could move about as he felt comfortable.  So, I helped him to the floor and he crawled from my room to the hearth room.  That was quite a little bit for his first journey.  It was awesome!!!!!!!!!!!!!!!!!  Hard to believe it was the same kid that could not hold up his own head Friday morning.  Thank you Lord for allowing all of us to end this day with such a reward.  May you be praised for your faithfulness in our lives. 

I need to try to post a few pictures of him, but this one has gotten quite long. 

If you want to continue to pray for him, it would be in the area of his back being healed of this irritation from the bedding and that his incision site would heal safe and sound, with no more drainage.

Thanks again for your support and being a part of this incredible journey.

Love,
Tammy

It is Friday!!!!!!

Well he made it to Friday.  The big day to get out of bed!!!!! Yea.  He slept very well last night, which was a great thing.  Then, this morning, when we told him he was able to get out of bed, he told us he was not ready yet.  What a goof!!!!

Physical therapy came and showed us how to move Keenan from bed to wheelchair.  Keenan did not like sitting up, but he pushed through it.  I am sure it not only hurt his back, but muscles that have been tight and tense his whole life are not anymore, and I bet that is odd and perhaps even scary to him.  I still marvel at how easily his legs move.  It is surreal to us.  You should see him move his feet!!!!  They move much like ours now.  I just can't believe it!!!!!  :-)

He wanted to give all of you a message this morning, so hope you enjoy.

Keenan is putting the blame for his procedure on Brad right now.  We expected this and Brad just smiles and shakes his head.  What an awesome day it will be when Keenan realizes what this surgery has given him.  How cool that will be!!!!

Mr. Keenan is a happy camper right now.  He is sitting upright in bed playing Wii.  That is the perfect scenario for our little guy.  He can move now as he tolerates it within the bed. 

Lunch time:  Hummus and pita chips  (Hey, it is protein.) 

The rest of his day looks like this...
1st PT visit at 2:00.  I am sure this will involve much complaining and some tears.  :-(

We will encourage movement for him so he won't be as stiff.  He will also be encouraged to start eating more. 

I will try to write again this evening if he is restful and sleepy.

Blessings from St. Louis.

Tammy

A Recap of Wednesday

Overall, he had a good day. His pain is being controlled fairly well. We played a few things in the evenng on his bed.  The last hour before time for another dose of medicine is somewhat hard, but he is making it. 

The highlight of his day, by far, was being able to talk to Kaylee on Face Time.  That is a great use of technology if there ever was one.  She was thrilled to see her big brother, and Keenan asked off and on all day if he could talk to Sissy.  So, a BIG thanks to Heather for allowing us to keep in touch this way.  It has meant so much to all of usI have a little video from Keenan. 

So, the highlight on Wednesday happened when I had to help Keenan use the bedside urinal.  Brad was holding the "jug" and it was my job to pull up one leg just a bit.  For the first time EVER, it took no effort to try to separate his legs.  Before surgery he was so stiff and tight that it took a bit of strength to pull them apart and hold them that way, without the spasticity taking over and pulling the legs back together. 

IT WAS TOTALLY AWESOME!!!!!!!!!!!!!!!!  What a moment.

Prayer request: rest, tolerable pain level and patience for the rest of the day and tonight. He can't get out of bed until tomorrow, and while he doesn't know how hard that is going to be, I think it be a good thing for him to be able to move.


Blessings,
Tammy

Update on surgery

Keenan was a total trooper!!!!! We had an answer to prayer for his level of anxiety indeed. A few tears when he left us, but he was not distraught by any means. Praise the Lord, for He is good!!!

I just talked to his nurse at 3:45 pm and they had just started the procedure. The surgery will take 3-3 1/2 hours and then some time in recovery, so it will probably be 7-8 before he is finished.

We are excited and anticipating great things. Between God and this extraordinary doctor, he is in great hands.

More later....
Tammy

Evaluation Day (with video)

Keenan slept very well and did not wake up until 7:30.  That is major for him.  We got some lunch and then it was time to head to the hospital.  We had to wait about 45 minutes to begin, but Keenan and I are used to waiting on doctors, so it was not bad.  We met a couple other families in the waiting room who were getting ready for the procedure, or had already had the surgery and were back for post op  visits. 

We met Dr. Park and liked him.  He thinks this will help Kee's balance, comfort, and ability to become more mobile.  The tightness he experiences in his heels and hamstrings won't be completely relieved from the rhizotomy.  More than likely he will have to have to have heel and hamstring release surgery in the next few months.  (He does not know this yet.)  We knew this was a possibility and time will tell us for sure, but it is a real possibility.

He was such a trooper today.  We were in the hospital four hours, going to this place and that place.  He is such a positive little guy. 

Keenan had a great surprise when we got back to the hotel: Mema!!!  He was totally taken off guard and I wish I would have taken a picture of his face.  It was too cute. There was hugging and happiness indeed.

The day ended with a short trip to the mall and dinner at The Cheesecake Factory!!!!!  Yummy.

Tomorrow we check in at noon.  His procedure will be at 2:30 and he should be finished about 5:00. 

I have been told by a few that they are unable to post to the blog.  I thought I had that fixed, and I must to a degree, but I will try to figure that out tomorrow.  If any of you have encountered that problem with your own blogs and have an easy fix to suggest, that would be great.  Totally learning as I go on this one.  :-)

Thank you for taking the time to be part of our journey.

Love to all,

Tammy

Travel Day

Hello.  We dropped off Kaylee at 9:00 this morning and headed to the airport.  This was Keenan's maiden voyage into the world of airline travel.  He was VERY excited about it, to say the least.  He did very well until we hit MAJOR turbulence getting into Memphis.  Guess we were very near a storm.  It was pretty intense, I have to admit, but he was very brave.  He was a little more timid to get onto the connecting flight to St. Louis, but again, he was a trooper. 

If you listen to praise and worship music this will make you smile, at the tail end of the turbulence we were experiencing, Keenan was listening to the IPod and singing these words, "my God is not dead, he's surely alive, and he's living on the inside, roaring like a lion...".  Wow, out of the mouth of little ones.  I smiled and shook my head. 

After we arrived in St. Louis we went to the hotel for a bit and then took a drive to see the famous arch.  He thought it was cool, but did not want to go up in it.  We then searched for some mexican food, per his request, and spent the rest of the evening in the hotel room. 

Tomorrow we will go to the hospital about noon to meet Dr. Park, have some xrays taken, do an initial PT evaluation, and that is it.  He does not know it yet, but his Mema is coming to meet us tomorrow afternoon, so I am sure we will all find something to do before going to dinner and having some time to relax in the hotel (Kee's favorite travel activity).

Thank you for praying for Keenan's anxiety.  So far, he seems to really be handling all of this like the trooper we know he is.  Please continue to pray that he does not focus too much on all that is yet to come.

Love from us...

My "Little" Man

Mother's Day with my little man.   It is hard to believe he is already 7 years old.  He has come sooo far in his life.  What an amazing journey it has been for him.  More adversity than many kids endure, but endless blessings and love from so many, that many never experience. As we embark on this crossroads, I can't help but reflect a bit.  Five days after Keenan was born, we thought he was going home to be with the Lord.  He was such a sick little baby, but little did we know the kind of fight God had given him.  Praise Him!!!!!  I can't imagine missing the incredible blessing he is in my life.  He has taught me so much in his short life:  how to be positive under pressure, how to endure pain, how to be patient in all things, how to have faith in ALL circumstances.  Priceless lessons taught to me through the innocence of my little boy. 


It is hard to believe that in 10 more days his life will never again be the same!!!!  What is in store????  How exciting (and a bit scary) to think about the week that is ahead for him.  He seems to be handling it well right now.  He does talk about the surgery a bit and does so without any tears. 

So many things to do this week....the end of the school year for the two of us, planning what needs to be packed for all of us, finalizing details for Kaylee Ann, getting graduation gifts, running errands, etc.  I know all the details will come together, as they always do.  :-)

If God puts Keenan on your heart this week, we would ask for you to take a minute to pray for him in the following ways:  safety during the surgery and a recovery as free from pain as possible, his sinuses are OUT OF CONTROL and is on antibiotic in hopes that it will help get that cleared up before surgery, that he enjoys flying. 

I hope to figure out how to upload video to the blog, so you can see his post operation physical therapy. 

How thankful I am God has brought us to this place in Keenan's journey!!!!   He does work in amazing ways, and in His time.  All I want for Keenan is that he know Christ, follow after his dreams, whatever they may be, and show kindness and compassion to others.  But, if I could shoot for the moon, my dream for him is to walk down the halls of his high school and be able to carry his books to class without any help.  To me, that would be the icing on the cake.  One thing I do know, with God, ALL things are possible.........

Blessings and love,
Tammy

A "Bone" to Savor

God often "throws me a bone" (a little something to let me know He is near) and a few nights ago, while rocking Kaylee before putting her to bed, He served me a very unique and timely "bone".

Some of you will think I am a complete weirdo, but that is okay because the story is cool.  When I was a little girl, I often watched reruns of the TV show, The Waltons.  There was always something appealing about the life they lived on the mountain.  Well, there are still reruns on an obscure channel I happened to find a few months ago.  On rare occasion, when I get to rock Kaylee before bed, I watch it for a bit.

On this particular evening, it was a two-hour episode and I caught the last 15 minutes of it.  The youngest girl, Erin, must have had some type of accident and had braces on her legs.  Apparently her chances of walking again did not look good, but she had made some progress over time.  Well, one of her brothers was pushing her on the swing until he got called away for a moment.  Another brother was nearby, in the barn, watching Erin.  The swing came to a stop and she wanted to get off the swing.  Her crutches were laying on a bench very near the swing.  So, she leaned herself over to the crutches and was preparing to ready herself to walk when Jason, the brother watching her from the barn, encouraged Erin to walk to him.  After some prodding, Erin took two successful steps to her older brother--which was the beginning of her road to total recovery.  (It is the Waltons, ya know.  There had to be a nice, happy ending.) 

What were the odds of seeing an episode of ANY television show with content such as this, at such a time as this.? They are 100% when our focus is on God and seeking His direction for our lives.  There has yet to be a time when I have earnestly sought  His plan that He has not "thrown me a bone" to let me know He was right there, watching over the given situation, and guiding me.  In this instance, I was so energized and excited.  God was saying to me, look at what is yet to come for Keenan.  I can make ALL things new!

So, thank you Lord, for showing me a glimpse of what I believe is yet to come for my son.  You are awesome and so very personal, if we but have our eyes fixed on you.  To me, there are NO coincidences, only divine appointments with the creator of the universe.  I am grateful I did not miss this meeting!!