Ready for a fun post for a change??!!  Me too!!!  Here we go…..

A couple of weeks ago, I was planning to buy tickets for the circus online.  It was coming to town and I really wanted to take the boys!  Before I actually got it done, a friend reminded me that one of our local radio stations was giving away tickets that next week and that I should enter for a chance to win.  So, I did!

This station does something called the “Custom Mix At 6.”  All I had to do was send them 4-6 songs, a dedication to whomever, and why these songs meant something to me.  Cannon’s surgery had just happened and our emotions from that were still brutally fresh.  Along with the last 2 1/2 years of struggle.  Our family has been through so much and it was really the only choice.  So, I dedicated the mix to my family.  Submitted it and honestly forgot about it.  I mean, I really just didn’t think out of all the entries in our large city…..that we could be chosen for the opportunity of the on air dedication AND to receive the tickets.

This being a secular soft rock station, I had to make more secular music choices.  I initially chose “Somewhere Over The Rainbow” by Judy Garland, “Your Raise Me Up” by Josh Groban, “When You Believe” by Mariah Carey and Whitney Houston, “Life Is A Highway” by Rascal Flatts, “Blessings” by Laura Story, and “Take My Hand” by Madi Georgi . I truly felt this group of songs was a great representation of the trials that our family has and continues to endure, the faith that has gotten us through thus far and continues to sustain us, and the hopes and dreams we have for the future.

“Take My Hand” is such a fantastic song about Autism.  It was written by a girl who has a sibling with the disorder and manages to connect with the tough day-to-day difficulties and virtual captivity that is Autism.   While putting a positive and uplifting spin on the possibilities for the future.  We used it in our Surfers Healing video from last year.  I could type out all the lyrics because I think they are all so great but here is the chorus.  “Take my hand and I will show you the way…….You don’t need to worry what anybody else will say…….Just stick with me and we’ll be fine…..There a’int no mountain we can’t climb…..And together we can take a stand……If you take my hand.”  If only this message could completely and totally seep into the mind of my child and be perfectly understood!

“Somewhere Over The Rainbow” is a song that provokes so many wonderful, nostalgic memories for me to begin with.  I loved the movie “The Wizard of Oz” (that it first appeared in) when I was growing up.  I remember so clearly when Dorothy is told by her Auntie Em to go do something and stay out of trouble.  Her response to her adorable little dog Toto was… “Someplace where there isn’t any trouble. Do you suppose there is such a place, Toto? There must be. It’s not a place you can get to by a boat, or a train. It’s far, far away. Behind the moon, beyond the rain…..”, and then she begins singing the song.  Some days, especially the tough ones, I wish for such a place here on earth, too.  For Cannon.

“Blessings” is the song you hear when you come to our blog site.  I think it will always be the best musical representation of our how we feel about our situation.  Laura wrote the song about the struggles she was going through as her husband battled a brain tumor.  My favorite lyrics are “What if a thousand sleepless nights are what it takes to know YOUR near.  What if trials of this life are your mercies in disguise.”  This may seem crazy to those who do not understand the relationship that is attainable when you open your heart to Jesus.  But sometimes we have to go through things just to realize how close He is, the enormous, incomparable love He has for us, and that even when things are hard…..those times can help to reflect to us how truly blessed we are.

“You Raise Me Up” really sums it up.  I completely feel that the experience of being these boys’ mom, a wife to my husband, going through what we do each day with Cannon, and being a child of God……makes me strive daily to be a better mom, wife, person, and Christian.  “I am strong when I am on your shoulders.  You raise me up to more than I can be.”  Totally!

“When You Believe” is a song of hope.  Of believing and therefore expecting good things to come your way!  Here is the bridge of the song which is my favorite part.  “They don’t always happen when you ask….And it’s easy to give in to your fears…..But when you’re blinded by the pain….Can’t see your way straight through the rain…..A small but still resilient voice…..Says hope is near.”  A dear, dear friend of mine has a saying…..”Have faith…..Expect miracles!”  This is what this beautifully sung song reminds me to do.

“Life Is A Highway” was listed for no other reason than that it is one of the boy’s favorite songs.   From their very favorite movie…..”Cars.”  Had to throw it in there for them!

I hit “send” on the entry form and truly never thought another thing of it.  Until the very next day, when I got this phone call…… (Please forgive the crummy sideways video and all the background noise!)

I was so shocked!  And nervous because I could hardly remember anything I said in this initial phone call.  And I had to wait a couple of agonizing hours for her to actually play it on the radio!  To see how badly I embarrassed myself.  I had tried to focus so I could be sure to make some sort of sense but I was being followed room to room by the boys.  As I tried to escape the noise.  🙂  After Adrienne, the radio personality, stopped recording, we had a few other things to do.  First, she only had 2 of the 6 songs that I had requested.  “Somewhere Over The Rainbow” and “You Raise Me Up.”  And the first one, she only had a version by a different artist. So, we had to pick some different songs and I ok’ed the alternate version.  We quickly agreed upon the Phil Collins song “You’ll Be In My Heart” from the Lion King as a replacement.  A great option even if it wasn’t my first choice.  Now she wanted an upbeat song.  I suggested “God Gave Me You” by Blake Shelton, “Place In This World” by Micheal W. Smith, and/or “Your Amazing Just The Way You Are” by Bruno Mars.  But she had none of these.  And I was drawing a complete blank. The only thing that kept coming to mind was a line from the new song “Stronger” by Kelly Clarkson.  It is “what doesn’t kill you makes you stronger.”  Seriously, that one line was on repeat in my head…..preventing my exhausted brain from thinking of anything else.  I asked Mark and we agreed on that song.  Because that line made sense in our situation, right??!!  Much to my later embarrassment.  Why?  Because later when the song actually played, I realized that I had never REALLY listened to the words of that song.  It’s totally a “you did me wrong and I hate you” kind of song.  Ahhhh!  Oops!  Oh well!  Chalk that one up to what I call my “Mommy Mush Brain.”  🙂

The next thing we had to do was record a couple of 15-ish second intros.  One to the overall mix itself.  To introduce myself and whom I was dedicating the mix to.  And the other to intro one of the songs.  I chose “You Raise Me Up” and talked very briefly about Cannon.

Finally, Adrienne told me that we would have to come by the station to pick up the tickets.  And she wanted to know when we might be doing that because she wanted to meet Cannon.   And give us a tour around the station.  I mentioned that we had a doctor’s appointment in that area the next day and would probably run by at that time.  This turned out to be a good time for her, so we did just that!

The next day, all 4 of us dropped by to check it all out!  We picked up the tickets first from the front desk while they paged Adrienne.  She came down and we all introduced ourselves and the boys shook her hand.  Adrienne told us that this particular building housed a TV station and 4 local radio stations.  As we got started, I carried Cannon most of the way because he was still not 100% from the surgery.  First, we toured the TV station.  She showed us the Newsroom, Advertising Offices, and the boy’s favorite…..the actual studio.  It had a green screen, news desk, and morning show set all in this large room.  The boys LOVED the green screen and being able to see themselves on the monitor.  It was very hard to get them to stop touching their pictures on that monitor!  🙂  The poor camera guys probably had to clean off a few fingerprints after we left!  Here are a few photos…….  Forgot my camera at home so I had to settle for my phone.  Sorry they are a little blurry!

Later, we went upstairs to see the different radio studios.  There was an ESPN radio station, along with a talk radio station, an old school r & b station, and the soft rock station.  Each studio had multiple microphones, spinning chairs, radio personalities, and tons and tons of buttons to push!  And boy did my boys try to push each and every one!  It was a little difficult to manage them in this environment.  Everyone we met along the way was so kind and welcoming and Adrienne was so warm and really did a great job explaining what everything was to the boys.

When it was time to go, we made sure to give Mrs. Adrienne some BIG HUGS!  She was so incredibly kind to go out of her way to give my boys this tour.  And take the time out of her day!  She really is such a kind woman!  Be sure to give her a listen weekday afternoons if your local!  🙂

The boys were kind of quiet during the tour (And by quiet….I mean conversationally quiet.  Not quiet quiet.  That only happens in my dreams.) but Townsend, in particular, had A LOT to say on the way home!   He just talked and talked the WHOLE way home.   “Mommy, did you see that green wall?  Mommy, did you see all those computers?  Mommy, Mrs. Adrienne has lots and lots of buttons to push.  And a silly microphone, too.  Are we going to the circus, now?  Ok, after lunch and my nap….we will go to the circus.  Okay Mommy?  Okay??”  Cannon didn’t have much to say during the experience either but I could tell by how many times he smiled that he really liked seeing everything.  And that is all that ever matters to me!  That he is happy and doing fun things to help offset all the blah he has to deal with!

The circus is just 3 days away and the boys are VERY excited!  Quite frankly, I wasn’t so sure Townsend would make it!  We had to make him a countdown calendar because it was darn near impossible to explain to my 3 year old the time gap of 3 1/2 weeks from when we picked up the tickets.  I will definitely fill y’all in on how the circus goes!  Could be interesting!  With all the potential sensory stimulation, loud noises, lights, smells, and even just the late start time (7 p.m….their usual bedtime) could all play into how both boys, but especially Cannon, will cope with it.  I am so hopeful that he will be able to get past all of that and have a great time!

Anyhow, just in case anyone wants to hear the whole mix complete with the 2 intros I recorded……here you go!  (The first is at the beginning and the other is around the 7:23 mark.)  I doubt anyone except maybe my mother will want to do this but regardless….here it is!  Again, forgive the bad, shaky video and background noise!  🙂  Much love!  Hope you enjoyed this fun post!  I pray there will be LOTS and LOTS more where this came from!  🙂

Four weeks out from Cannon’s surgery, things are……well…..still complicated.

Early last week, when we removed his dressing to do the flush…….we noticed some blood. Covering about 1/2 of the dressing.  It wasn’t gushing but it was there.  And it wasn’t something we had seen at all yet.  So, of course, I called the surgeon.  She, first, asked if there was a particular look to the flesh around the button (I am sparing you the icky words she used to describe).  There wasn’t.  But we still wanted to see him that afternoon.  When she took a look, she noticed that the Mic Key button is digging into him……causing the bleeding.  She said it is going to need to be replaced soon……for a button that is longer.  But she wants to wait a couple of weeks.  When it does happen, she wants to arrange it for a time when Mark and I can go into the Operating Room with her.  So, that she can show us how to put the button in ourselves.  I am thrilled about this idea!  Sense the sarcasm…..cuz it’s there.  The reason for this is that every so often, the button will have to be replaced and that job will fall to us eventually.  There is also, of course, the chance that he could pull it out and we would need to be prepared to act quickly.  In the meantime, we are changing the dressing more frequently to compensate for the bleeding.

Later in the week, when we removed the dressing, we DID notice a small amount of flesh that looked suspicious and more bleeding.  So, I called the office again and spoke with the Nurse Practitioner.  She said that this is called  “granulation tissue” and is the body’s way of reacting to this foreign body.  She wanted us to be seen in the office next week and have the tissue treated with Silver Nitrate.

And today was that day.  Which was a good thing because since my last conversation with the office……the condition of the skin around his button has gotten out of control.  It looked just AWFUL!  Excuse the gross visual but it looks as if a huge fat, bleeding lip has grown under the button where flat, pink, perfect skin used to reside.  And it really seemed to be bothering my poor buddy!  His behavior and sensory issues have been extremely unpredictable and volatile as of late!  So, three of us held him down in the office today and the Nurse Practitioner treated the area with long, skinny swabs that looked like long match sticks.   These had the silver nitrate on them.  Before long, all the tissue had a black appearance.  The surgeon who had joined us by this time told us that this procedure should work but possibly might not.  And our back up plan is to try something called “mesalt wound dressings.”  Just like ocean water dries out your skin…..gauze soaked in saline, dried, and applied to the wound can also do the trick.  We just want it gone!  They say it is mostly cosmetic but this granulation tissue does bleed when bumped so obviously, we want to do our best to get rid of it.  Seeing the blood makes him more nervous.  Also today, the water level in the button was tested.  The little balloon under the skin that holds the button in place (see the picture in the last post) contains 5 ml of water.  This balloon can burst or some of the water can dissipate over time…..causing the risk of the button coming out.  So, it is to be tested about once a month.  His button had about 4.5 ml in it so there was a small amount added.  And then we were able to let my brave boy put his protective band back on and play with his iPad while we chatted with the surgeon.

We then discussed the next surgery.  And it was decided that since the button didn’t appear to be digging into him as badly and what we did in the office today could use time to heal…….we would hold off on the newer, longer button for about 3-4 weeks.  We were able to inform her that the flushes have been more successful.  Cannon still gets very upset and fights when we bring him into the bathroom to begin the flush each day.   And he struggles mightily to allow us to perform the procedure but we have been able to get the job done.  Thoroughly.  There is still a decent amount of cramping and it still takes about an hour to complete……but progress is bing made.  And after the first 10 or so minutes, he does relax more and more.  Giving his stressed out body an break!  Thank goodness!

So, there you have it.  Our blog status update from Cannon and family!  We sure hope all of you are well and thank you for checking in on our precious little man!  🙂

Hello friends!  It has now been 2 weeks since Cannon’s cecostomy tube and MIC-KEY Button placement surgery.  He is up and moving around well now.  Even getting a little adventurous at times.  If we are not bothering the button and he has his protective band over it……for the most part, he is fine.  It is still a very different story when we need to access it.  But, we have had success in taking it down from a 3 man to a 2 man job.  Which we were very thankful for as my mom, who was here helping us, had to fly home on Monday.  Mark and I have done both jobs but now we have kind of settled into a routine.  Generally, I hold and soothe Cannon while he pushes the solution.

Just incase you were wondering how this all works, here goes……….

Here is another photo of what the button itself looks like (above and below the skin)…..

And this is the tube that we connect to the button.  The white tipped end is inserted into the opened button and turned to lock.

Every day we prepare a mixture of various ingredients and fill 2 of these catheter syringes.

 The syringes are inserted into the opposite end of the tube and held in place while the clamp is released.  And the solution is slowly pushed in.  We have to clamp the tube to change syringes and then release and repeat the process.  Then, we disconnect everything, sit him on the potty, and wait for “the results.”  The solution can cause a decent amount of cramping, so we have to help him through it.  He has begun to express himself (!) saying “I’m afraid!”  When this happens, we often recite Isaiah 41:10 with him.  He likes it and it has a somewhat calming effect on him when he says it along with us.

“Fear not, for I am with you.  Do not be dismayed.  I am you God.  I will strengthen you and help you.  I will uphold you with my righteous right hand.”  (Isaiah 41:10)

We also can use previously mentioned social stories, favorite books, and even movies on our portable DVD player during these difficult, but necessary moments.  “The results” can take anywhere between 3 – 45 minutes to come.  And there are usually 2-4 waves.  Sometimes its hard to know if he’s done.  And making the wrong call and pulling the plug too soon is no fun!  The area around the button also has to be cleaned twice daily with sterile saline wipes.  And a gauze pad with a slit cut in it has to be re-placed around the button.

We have been working with the surgeon to come up with the right concoction of what to put in the tube.  For one week, we were just flushing it with a small amount (about 20 ml) of normal saline.  Just to keep it primed.  We were taught how to do this before leaving the hospital.  And practiced on a doll.

We visited the surgeon’s office for check in’s on Monday, Wednesday, and Friday of last week.  Friday we were there to be trained by a Nurse Practitioner on how to do the real deal…. the actual flush.  We were told to bring salt and Dawn dish soap with us!  Weird, right?!  The salt was to be used in making our own saline and the dish soap is used as part of the solution for the enema.  When we arrived, she began filling 6 catheter syringes with a combo of the saline and Dawn.  We struggled to get him to allow us to insert this much solution into his body.  He was fighting so hard that the nurse had to do the pushing and Mark and I held Cannon.  “The results” were less than satisfactory and he was cramping badly.  So, she mixed up enough for 3 more syringes.  And again we got little “result.”  The Nurse Practitioner told us that we were going to call it a day and should phone the surgeon when she was back on call the next day.  To decide what to do next.  We had been trying to avoid having to use liquid glycerin in the tube because of the increased chance of intense cramping.  But it was looking like our only option.

I spoke with the surgeon on Saturday of last week and she confirmed this.  She wanted us to use 24ml of glycerin and 60 ml of saline combined.  Our pharmacy would have to place a special order for this and it would take several days.  So, we had to go to every Walgreens in town collecting boxes of 6 small glycerin enema syringes.  And squeeze each little one into the cup of saline.  It took one box of these tiny syringes to meet each day’s requirement.   We tried this until Wednesday and were seeing much improved “results.”  But there were signs that it still wasn’t enough.  So, we were told to bump up the quantities to 36 ml of glycerin and 90 ml of saline.  This has been working pretty well and now the question is when we will stop all his motility medication and truly test whether the formula is enough.  I am currently waiting (and waiting) on call backs on that one.

One of the other challenges we now face is how reliant he has become on that band we had made for him.  The abdominal binder with a donut velcro-ed inside.   A local prosthetics company made this to protect the button and so as not to allow him to pull it out.  He completely freaks the minute you start to touch it and does not calm down until its back on.  Even if you aren’t touching him or manipulating the button at all.  Not a problem we ever anticipated when all this began.  But better than the alternative, I guess.    We realize this is a potential problem down the road but feel that it is most important for him to finish healing process before we take this comfort away from him.

We didn’t realize a couple of things until after the surgery.  First, how rare this procedure was.  MIC-KEY buttons are common with gastrostomy or feeding tubes.  But Cannon’s is a MIC-KEY Button with a cecostomy tube….which accesses his colon not his stomach.  None of the doctors or nurses we encountered in the hospital had ever seen one.  Even a charge nurse who had been there 33 years said that she had never sent someone home with one of these.  Crazy, huh?!  Finally, we certainly didn’t know there would be so much trial and error with this.  We just figured that after the surgery, there would be a set medicine and dosage.  And that his body would respond quickly and accordingly.  But, it hasn’t been that easy.  Unfortunately.  And that is not something that we can really explain to Cannon.  So, now, all we can do is just keep at it until we find just the right formulation to make this kiddo get perfectly cleaned out and feel 100%!  It’s an exciting possibility that only gives him a chance at a better quality of life and the ability to try to reach his full potential!  So for now, we will keep praying and hoping…..and continuing to deal with this trial and error.

I leave you with a few scriptures my soul has found rest in this week. I pray they give you hope and comfort as well!

“The Lord is my strength and my shield; my heart trusts in him, and I am helped.”  Psalm 28:7

“No test or temptation that comes your way is beyond the course of what others have had to face.  All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it.”                  1 Corinthians 10:13

“Those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  Isaiah 40:31

God bless you ALL!  🙂