Let Hope Rise….

This whole blogging thing comes no where in the remote realm of naturally to me.  I struggle mightily with how to articulate all things medical and developmental in a coherent fashion, consolidate happenings, edit down content, and unload my truckload of emotions.  The latter being most definitely my biggest weakness.  Then you throw in the constant state of exhaustion that I live in these days thanks to the enormity of work there is to do with a child with essentially 3 tubes.  And there you have why this blog is pretty much doomed to its sprinkling of posts per year.  My heart cries with the desire to be better, to communicate more, to have and use this as an emotional outlet, and to be available to be here for others in similar situations.  I’m failing up to this point but forever determined to do better.

One of these days I WILL do a “day in the life” post…..so y’all can see and hopefully truly experience what all this is really like.  But for now, I will just attempt to do a quick update of the last few months.

November…..8 days in the hospital to place the feeding tube and re-place the Chait Button and Cecostomy Tube.  The feeding tube dislodged and had to be re-placed at one point during the stay.  We were trained on how to administer feeds and meds through the tube.  All medication prescriptions had to be rewritten into liquid AND dye free form.  We were taught how to compound those that couldn’t be.  We also had to obtain all medical supplies and equipment for home before release.

Whirlwind.  That is the only way my incredibly fatigued mind can think to describe those next few weeks.  I desperately wanted to connect with you, our faithful prayer warrriors, but the reality of our new existence…..it was just impossible.  I was merely existing.  Learning, making mistakes, trying to find a rhythm, and then more of that merely existing part.

I was so beyond naive going into this.  I thought it would be so much simpler.  Cannon will get a tube.  Food will go through the tube. He will wear this all on his back.  End of story, right?  Wrong.  So wrong.  We have been using ready to feed, pourable formula for the last several years.  Now, we have to mix our own…..with 11 packets of formula that come in 2 boxes…..a day.  Y’all…..my pantry!  There is very little room for food in it now.  It’s all medical supplies and formula and feed bags and wound care supplies.  He is hooked up 20 out of 24 hours a day and the feed bag has to be refilled every 3 1/2-4 hours to prevent bacteria buildup.

Somehow we made it to December.  And that brought another scary happening.  A pre-planned trip home for the holidays.  Something I had been so inexplicably excited about since it’s gifting for my 40th birthday earlier that year.  But now…..a cross country trip…..3 weeks post surgery when he is still not getting off the couch?!  It was so daunting!  But thanks to the best parents a girl could ask for (who did an incredible amount of prep and rented an IV pole, wheelchair, and so on), an awesome med supply company (who shipped Cannon’s formula and med supplies for the month to SC), and friends who understood that they’d have to come to us this trip (no matter how much we wanted to…..we couldn’t be running around trying to see people with Cannon in the condition he was)……The trip was a success!  Cannon even seemed to gain SOME strength from all the love.  

Miraculously, we even snuck in an incredibly brief photo session with my precious cousin!  A true victory!


(More to come on that later.)

January began with a rough in office procedure to remove some pesky tissue from the surgical site.  Let’s just say the surgeon was nearly “dethroned” from her rolling stool at first attempt.  After that was resolved, we began to try and get back into some of our daily activities and routine.  Wow!  I thought I used to have a lot to think about before leaving the house.  Now, the details felt endless.  Cannon was also still requiring the wheelchair to go anywhere.  He just did not regain his strength and energy level like we had thought he would.  But I was able to go to a few meetings of my networking group with the boys in tow, take Townsend to Taekwondo again (even though we mostly just waited in the car), and even attend a few fitness classes at local studios.  I experienced incredible “mom guilt” and felt like I was forcing it…..dragging him around.  But it was time to try.  So, try we did.

The “highlight” or maybe I should say “lowlight” of February was a 5 day hospital stay thanks to a colonic impaction AND clogged feeding tube. An unexpected and unfortunate bump in the road.  We were just about a week shy of replacing the feeding tube when it as well as the gastrostomy and cecostomy tubes all stopped flushing.  In the middle of the night, of course.  With Mark at work and unable to come home.  It was a drama filled development but Cannon handled it far better than we could have imagined.  And all got fixed in due time.

On to March……..2 weeks ago, Cannon had his first set of Endoscopies and Bronchoscopy since his feeding tube was placed in November.  All to give us a progress report of sorts.  To refresh your memory……that placement happened due to his killer reflux which doctors believed was the carrier of stomach contents (or the lipid aka fat from them) to his lungs.  After years of treatment with no progress to show for it….we put in a feeding tube and fed exclusively through the intestines…..NOT the stomach……which should eradicate this problem.  In theory.  But the theorists don’t know my Cannon.  We received the news this past week that Cannon’s aspiration into his lungs has INCREASED……not decreased or gone missing as we’d hoped.  A monumental discouragement to say the very least.  There should be virtually NO WAY this can happen.  But it has and now we just have to accept it and move forward.  One bright-ish spot is that a chest x-ray determined that the lipid hasn’t caused any NEW damage to his lungs.  So, it’s there…..it isn’t healthy, good, or going to stay damage free forever.   But for now….we will just have to be ok with this.  And focus on the whole “it’s a marathon, not a sprint” logic.  A couple of other random finds were a Vitamin D deficiency and bleeding adenoids.  The first, we have dealt with before.  He was taken off that supplement when we began formula as they thought this would provide all he’d need.  Oh well!  A liquid supplement has been ordered.  These crazy adenoids are a bit of a mystery as this is ALL NEW to the pile of issues Cannon has.  But it’s believed that a familiar culprit…..irritation from reflux…..may be to blame.  We also discussed Cannon’s dependency on Ibuprofen to sleep or function.  We will be trying a new, coating agent for his tummy…..to prevent an ulcer and hopefully help some.

BUT then there are the developments of the last few days.  Extreme agitation from Cannon, excessive reflux, and a darn near IMPOSSIBLE to flush Cecostomy Tube (the one that helps him use the restroom).  Like, it takes ALL WE HAVE between both Mark and I to hold the connections in place and not have them blow out and spray solution everywhere.  And EVERY OUNCE OF STRENGTH to get the 6 syringes into him.  We have been in contact with the surgeon and she is ordering a contrast study to be done in Interventional Radiology in the morning (hopefully).  And putting him on her schedule to change out the tube in the OR later this week.  We are praying for 2 simple outpatient procedures but that is completely dependent on whether or not we can continue to find SOME way to get this thing to flush.  It seriously feels like we are going to blow him up internally.  But we have been assured that the water flow will help with the blockage.  If we can’t, he’ll have to be inpatient again.

FYI the probable cause of all this seems to likely be the formula he is on.  It may just be too constipating for him.  Its possible that once the tube is changed and we have a fresh one to work with……a new formula may be the tweak that makes all the difference.  It’s so darn hard to accept the trial and error that comes in to play when hospital stays, pokes, and more medications and procedures are on the line.  But such is the medically complex life.  Moving on…..

I don’t know y’all…..yesterday……I just got sad.  Simply put…..sad.  Defeated, overcome, crushed.  Like a failure to my kiddo who looks to me for help.  His, once conquered, angry meltdowns have begun popping up in the most random places again.  And are just terrible!  A sign of how D.O.N.E. he is with hurting ALL. THE. TIME.  And since he’s most comfortable with Mark and I…..we are the receivers of his rage.  It’s another level of awful to see him temporarily so out of his mind.  Like a sledgehammer to my heart and sometimes, for a brief moment…..my soul.  BUT only for a few moments do I let those emotions bubble to the surface.  I unload them and then shake it off.  I can’t.  I just can’t give those a foothold.  Put those emotions out and slam the dang door!

So I CHOOSE to let hope rise from the ashes of this latest attempt to burn us down.  I step into this next week of uncertainty with stubborn faith.  Faith that knows beyond the shadow of a doubt that we will be ok.  We WILL get through this.  With determination to find the right solution to make this as painless as possible and prevent future issues.  With peace that God is in control and knows what he’s doing.  With hope that this pain is only temporary.  One day…..if not on this Earth…..Cannon will be whole.  He won’t need a tube to help him eat….. nor a tube to use the bathroom.  He will be perfect and glorious in Heaven one day.  I rest in that and focus my energy on making tomorrow the best I can.  Controlling my attitude towards the stumbling blocks and pitfalls and remembering how very much Cannon is loved by His Creator.

This song was on repeat yesterday.  Please listen!  PLEASE!  And let it speak to you.  As it did to me in my moments of great need.  God bless you ALL!  THANK YOU FOR YOUR PRAYERS!



Developments of the last 3 days……

So, a LOT has happened since my last post……while Cannon was in surgery.  A LOT.  And a lot that was unexpected.  I am going to attempt to give you the bullet points version and get some sleep.  I’m allowing Mark to steal some of my cuddles from my angel at the moment but I need to get back in there.  🙂


We thought surgery would last between 1 1/2 – 2 hours. It took over 4.  The surgeon said that “the universe was against them today.”  Some crazy, unavoidable glitches with the equipment occurred, his “very large and floppy” stomach wouldn’t cooperate when it needed to be inflated (at all), they needed for an extra surgeon to be called in to run the endoscope so that she could better handle the situation, another bizarre, unavoidable equipment glitch, and so on.  In the end she said that everything was in perfectly and working well.

His wake-up was challenging. He is used to getting quicker outpatient procedures in recent years and being able to go home right after.  He was MAD when he realized that wasn’t happening.  He was also in more pain and was very nauseous…..throwing up in recovery.  He also made it extremely clear that he wanted what was on his stomach (his new G J Tube) off.  So, we had to bust out my social story from the last post and explain to him what had happened and why that couldn’t be.  He took this news FAR BETTER than we anticipated.  Thank you Jesus!  Once we found the right movie to distract him and some stronger pain meds…..we were able to move him upstairs and get him settled into the hospital for the night.

During the night, the nausea really keyed up.  He threw up 7 times and VERY forcefully.  He didn’t have much in their to emit but he was throwing his body around and really challenging us to wrangle him.  After a couple of smaller doses of anti-nausea medication…..we had to go to something much stronger which the surgeon had hoped to avoid.  But he needed to settle. Morphine was also necessary due to intense pain.  Finally around 3 a.m……he was able to rest a bit.

Day 2

Things were pretty uneventful (except for Cannon’s constant-ness of reminding us how much he wanted to go home).  That is until about 11 a.m., when all of a sudden, he threw up A TON of blood.  Pretty scary stuff!  And his G Tube (to his stomach) which had been left open to drain began seeping this as well.  It was a rusty color which means it was old.  The surgeons weren’t overly concerned because they said it was a result of the surgery.  If it was really red…..concern was warranted.  But not this.  At least at that time.  But it still freaked us out a bit to see it all go down.

We began feeding Pedialyte through his J Tube (into the small intestines) around noon. He was spacing out the Morphine well.  And they decided to begin trying to feed elemental nutrition through his J Tube around 9 p.m.  We were so hopeful.  Late night…..I began to notice the seeping from his drain increasing.  And soaking the bed.  They wrapped the end of the connector tube in a diaper…..sometimes even 2 on top of each other…..but it kept saturating them.

Day 3 (today)

Over the course of the previous night and this morning…..200+ cc’s of fluid leaked from his stomach drain. Which did not make for the most restful night.  He slept through some it…..thankfully.  I needed to stay on top of it to let the nurses know, though.  They increased the level of his feeds from 20-40 mls/hour around 6-7 a.m. and kept it that way until around 11:30 when we took a break from it all so that Mark and I could flush his Chait Button.  But just before that, they drew labs to check levels and an X-ray to check the placement of the tubes.  We proceeded with the flush.  All flushed well but it was very tough on our very weak boy.  He was continuously throwing up throughout the 40 minutes or so that he was in the restroom. And had an accident afterwards.  🙁

Did I mention that he was requiring more morphine today than yesterday?  I wasn’t thrilled with that development.

Mark and I had to leave the room for an hour each today to be taught how to insert a temporary tube if this one were to ever come out.  The stoma will close quickly if exposed and we have to know how to place a Foley catheter to hold the pathway and get him to the hospital.  We also received a visit from a rep for our home healthcare supply company.  She gave us supplies that we will need and training on how to use them for when we go home.  An IV pole, feeding pump (the very one I had been told I HAD to have…..Yahoo!), tubing, feed bags, and a backpack….to name a few.

I was starting to wonder if it might be possible for us to go home late this evening……and then the X-ray came back.  AND it showed that the J Tube has dislodged itself and is in the stomach now…..instead of the intestines. A huge disappointment and setback.  To boot, there is no one who can re-place the tube until Monday.  So, we have to stay the weekend and wait.  And we need to feed him some nutrition…..so we are having to do so through the tube that is on the loose in his stomach.

So, that’s the 411.  I’m super tired so I will leave you with this.  We are ok. He is handling this better than we could have hoped.  He’s not happy, he’s whiny, and disappointed. But 6 years ago when we were a fixture in this hospital…..he required conscious sedation just to tolerate being inpatient.  That is not happening right now nor does it seem like it will be necessary.  Talk about a BLESSING!!!  We have the absolute BEST doctors and NURSES (Oh my gosh…..I LOVE OUR NURSES) on the planet!  We have to navigate some details…..Mark’s work schedule, my mom’s plane ticket, and getting some more supplies from home.  But we will get it figured out.  Cannon and Roxy are missing each other terribly so we have gotten a visit approved and are also fixing that tomorrow.  Stay tuned for some super cute cuddle pics!

I will leave you with a song that is one of Cannon’s absolute faves!  We have been watching this video a few times a day since arriving to keep him as positive as possible.  And to remind him that with God in his heart…..he has all he needs to be strong, courageous, and brave!  WE LOVE YOU ALL!!!!!!!  Thank you for following our journey!

Preparing For Change

I meant to post this last night…..but I was up late packing, praying, thinking through, and writing social stories to help Cannon comprehend what is happening today.  Right now…..actually.  Because of my delinquency….I am actually finishing this up while he is in surgery.  It’s a good distraction…..really.  I will tell you about today but first…..what I wrote in preparation for today……

I am my father’s daughter.  Organized, structured, a planner.  Meticulous, particular, cautious, and conscientious.  I’m thankful for these inherited qualities.  And even though they can drive my husband and children crazy sometimes……they are invaluable in our situation.  Thanks Daddy!

The last few weeks came close to breaking me.  I wanted to give up so many times.  Frustration, aggravation, and people’s lackluster job performance were complicating my life and planning in massive ways.  I just can’t possibly begin to tell you how much back and forth has gone on.  The extreme amounts of phone calls, waiting by the phone for more phone calls, and desperate pleas to be heard.  I am ridiculously thankful to the friends and family who have prayed specifically over these struggles and listened to me as I worked through the emotions of all this.  God bless you guys!  I am forever grateful!  Some of the struggles I mentioned, I will not go into great detail on.  Like why we decided to switch surgeons after 6 years.  Short version…..go!  The insertion of this  Gastrojejunostomy (G J) Feeding Tube can be done 2 ways.  1) Inserting a Gastrostomy (G) Tube into the stomach first.  Giving the pathway anywhere from 4-8 weeks to heal and establish itself…..and then go back in and put the G J tube in that gives the option to feed either the stomach or the small intestines.  2) Inserting the G J Tube from the get go by using a slightly more complicated process for the surgeon.  But that is in NO WAY less safe for our son.  We advocated STRONGLY for what would be best from a medical AND psychological standpoint.  And in doing so…..decided to make a change.  One in which we are EXTREMELY comfortable with.  Thank the Lord!  THAT was a true answer to prayer.  A LOT of prayer!

We have been working with a team of feeding therapists and a nutritionist.  We needed to start backpack training Cannon.  He will have to wear a backpack when he is up and about.  It will contain the pump and feed bag.  He needs to get used to the practice and the weight.  So, I pulled out his old preschool backpack, tossed in a few things that are equal in weight to what he will experience and began slow, steady, daily practice.  We just did 15 minutes the first day.  Then 30….45….and we have now worked up to an hour a few times a day.  He really has been good about it.  He likes to watch timers count down.  So, we would set the oven timer and he would check in regularly to see how much more time he had.  I have been amazed and thankful thus far.  We have also been working to ween him off of his current nutritional formulas and into the elemental nutrition that he will now take through his feeding tube.  We did a slow, steady process with this as well to incrementally watch how his body would respond.  So far so good!  Which is awesome!  There is WAY more detail to that but I will spare you!  Getting feeding therapy approved and applying for help with the cost have been a few other hurdles we have been working our way over.

If you’ve followed Cannon’s journey over the years…..you know he already has a device called a Chait Button in his abdomen.  Which allows us to manually flush his colon from home daily.  And that we needed to protect this very pliable device from the very sensory seeking human being it was implanted in.  So, we commissioned an orthotics company to mock up a specialized abdominal binder that would cover it.  Eventually, we found a non-profit that could make these at cost for us!  Saving me HUNDREDS of dollars a year!  Well, now we need a new one.  And looking online…..the ones that are made to cover this particular device where really expensive and would take a while to order.  SO, I called the non-profit.  He looked at the one I had been online……and mocked one up in like 3 hours.  AGAIN…..saving me tons of time and money!  And met up with us on a Saturday for a fitting!  I just can’t……   Some of the human beings we have met on this journey are just impossible to describe!  They are truly EXCEPTIONAL!

Speaking of exceptional…..I have another beautiful child.  His name is Townsend and he is just that……exceptional.  I just couldn’t imagine if I tried….a more loving, caring brother.  A kinder, more thoughtful child.  And a more motivated young man in terms of pursuing his faith.  I have so very much to be grateful for.  Over the last few weeks, I have been trying to make absolute certain that he feels just as much of a priority.  Spending extra time, having little dates, and more in depth talks with him.  Hearing his questions, giving the answers I could, and just accepting and loving him through his feelings and emotions.  It’s such an important part of all this.

The final piece of preparation was getting some tools together to help Cannon understand the changes.  We didn’t want to tell him too much prior to surgery.  His anxiety has been pretty righteous lately and we didn’t want to further contribute to that.  So, we said virtually nothing.  And when he woke this morning….he saw this.

Because he is so used to going in for endoscopies and bronchoscopies…..he took the news like a champ.

But this isn’t just one of those standard days he has become accustomed to.  And we needed a more in depth method of explaining things to him when he wakes up.  So, last night I mocked this up.  I wish my bad handwriting and exhaustion hadn’t hampered this a bit. It kind of looks like my 9 year old made it….but I’m ok with it.  And I laminated it….hence the crummy glare in the photos. But overall, I think it will do. So, when he wakes up…..he will be smothered with love and attention from us, hear the spirit filled music from his new Hillsong DVD (thank you “Aunt” Melissa), and see this social story.

I think it will give him the basics and help him to not be so fearful.  Aiding him in understanding the purpose and reality of his new life.

My mind is at war with my heart right now.  When I was putting one of Cannon’s shake cups away yesterday I thought……”Will he ever drink from this again?”  And I wanna break down.  When he tells me how much “I  love rice.”  Or “I can’t wait for Thanksgiving!”…..I want to break down.  When he’s in so much pain that he could barely hold his eyes open…..and he says “I want to be healthy.”  And my heart wants to break into a million pieces……

Take this mountain weight
Take these ocean tears
Hold me through the trial
Come like hope again
Even when the fight seems lost
I’ll praise you
Even when it hurts like hell
I’ll praise you
Even when it makes no sense to sing
Louder then I’ll sing your praise
I will only sing your praise

My earthly father taught me praise God in the storm.  And my Heavenly Father taught me that surrendering in faith is not losing or defeat.  It is giving my problems completely over to the One who has already won.  And I am my FATHER’S daughter!

So, here we are…….waiting for our precious firstborn to wake up.  And we will deal with what comes next with faith, love, hope, joy, and praise in our hearts.

Thy Will Be Done

Isaiah 26:3-4 “You will keep in perfect peace all who trust in you, whose thoughts are fixed on you! Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.”


Please don’t look back at the date on my last post! Just don’t do it! You did….didn’t you? Sigh. Well, all I can say is that it’s been a long year.

At last report…..Cannon’s behavior had reached an all-time low. We had had to call in Behavioral Health. It was nothing short of hellacious. For a year. Basically last June to around this June. We worked hard with in-home professional help to get him to a better place. And we did.  Over much time, much prayer, and with a whole lotta love…..and strategy.  And he was better…..for a few weeks.

Then his health went into a complete free fall. And we quickly got back to a place we thought we left behind 3 years ago. A lethargic, sad, hurting mess of a child kind of place.

And so it was with a laundry list of symptoms that we walked into the Aerodigestive Clinic last week. Where we see 3 of his docs in succession. Allergist, Pulmonologist, and Gastrointerologist. The list included incredibly intense nausea and increased throwing up, sleeping/napping off and on throughout each and every day, his grey color, severe anxiety, this scream and cough mashup thing that he does often and lethargy that is so bad he often can’t walk without assistance….or at all.  To name a few.  We expected they would decide to scope him and do a Bronchoscopy. Although that solves little…..that is the usual go-to……so it’s what we expected. And we didn’t see coming what was next. Even though it’s been discussed before.

His G.I. doc entered the room after consulting with the other 2 docs and delivered the news. We are out of options. There is not one more thing they can do with medication, therapies, tests, etc. Not one more thing.  It’s time to put in a feeding tube. Nothing else with do.

He drew a picture in my notebook. He explained his logic. Yet, my heart was stuck on those 8 life changing words. “It’s time to put in a feeding tube.”

My sweet baby. My 11 year old. Will no longer eat by mouth.  At all.

Cannon’s stomach is partially paralyzed. The condition is called Gastroparesis. We’ve known this for 3 years. And because of this….he can’t get the type of feeding tube you may be thinking of.  If you’ve seen one before….you have probably seen what’s called a Mic Key.  This type of button can be tucked away except for the 3 times a day that you need to run a meal through it.  This is NOT the type of button Cannon can get……thanks to his Gastroparesis.  If we ran a tube through his stomach…..we would be beating our head against a wall and continuing our current issues.  The tube has to run through the jejunem…..a part of the small intestines.  Which is not designed to receive a bolus feed.  A meal sized feed.  It has to drip…..drop by drop…..throughout the course of an entire day.  So, he will need a pump…..carried in a backpack…..hooked up to a tube in his stomach……24-7.  Deep breath.

It’s been a long week.  Of digesting and processing this news.  Of crying rivers of tears. Of making tons and tons of phone calls…..trying to sort out the details associated with this news.  Of attempting to get hours approved for feeding therapy, the be all and end all pump and backpack ordered, the finding of a feeding therapist, in planning how we will tell Cannon, and in getting the surgery scheduled.  A week’s worth of phone calls haven’t gotten me much of anywhere either.  Which is frustrating.  (We hope to get his surgery date tomorrow.)

I have worked so hard for the last 9 years since his problems began to spare him this.  SO HARD!  We have spared no expense, tried every possible treatment, doctor, theory, and approach.  So, I’m incredibly incredibly sad about all he will have to endure.  His Autism and Sensory Processing Disorder will complicate this procedure and life after.  As well as his comprehension…..which is so limited.

Let me tell you the hopeful side of things.  Here is what SHOULD happen.  This SHOULD improve his nutrition monumentally.  This SHOULD help with his malabsorption issue.  This SHOULD stop Cannon from refluxing.  Which SHOULD prevent him from aspirating his food into his lungs. And the ultimate goal…..is it will give us the CHANCE to change his evil gut flora completely and totally.  It is POSSIBLE that he could come off many of his meds.  The ones for reflux, chronic bacteria, and yeast are my targets.  I say should because if you’ve followed our story for any length of time….you know that Cannon defies odds.  His body finds ways to mesmerize doctors.  For example…..He is on an INCREDIBLE amount of reflux medication currently.  You or I could not be on this much.  And yet he still refluxes constantly (We see if every time he is scoped.) and he still has lipid (fat) in his lungs from his food (aka….aspiration).  His last test of liquid from his lungs showed it was 50% lipid!!!  Mark and I have heard it before.  That this would solve all of our problems.  So, we are hopeful but not getting our hopes up.  If that makes sense.  His surgeon was frank with us at our consult this past week.  She told me, in her opinion, she didn’t think this feeding tube would ever come out.  He will have it for the rest of his life.   And she didn’t think they would ever figure his gut out and cure him.  Hard…..brutal words to hear……especially before such a drastic step.  Those words took me a few days to get over.  Maybe I needed to hear them.  Maybe they were too harsh.  The bottom line is it’s all up in the air.  Literally……God only knows.

So, how are we doing with this news?  I will admit.  I’ve handled news better. But I’ve had over a week now and it’s time to pull it together.  Getting back into my positive bubble I always talk about.  Getting helpful scripture up around the house, my Spirit filled worship music and hymns on repeat all day long, surrounding myself with the love of friends and family, and gaining some perspective.

Perspective is always something I harp on.   It saves me from the pitiful thoughts my mind can conjure up.  It refocuses me and reigns my heart in.  The only thing on this earth I have control of is my mind.  I try to find both earthly and eternal perspective.  The eternal perspective is “obvious.”  We are only here for a short time in the grand scheme of things.  One day, Cannon will reside in Heaven, with our Lord, where he will be free of the pain and suffering he experienced down here.  This week’s earthly perspective came when a friend’s husband posted this photo on Facebook. My first thought upon seeing this was not what most will think when they see it.  I thought……”Thank you God that my child will have the ABILITY to eat…..thanks to technology.”   He has access to the feeding pump, tubing, specialized backpack, and elemental nutrition.  Supplies to maintain this device will even be delivered to our home.  He has access to doctors to safely and carefully place it….. and advise us on it.  Feeding therapists to guide us through the transition.  He may eat through a tube…..maybe for the rest of his life…..but it’s a POSSIBILITY.  AND….. if he hadn’t had the 9 years of doctors, hospitals, medications, treatments, tests, procedures, and not to mention his Chait Button……would he even still be with us today???  Whoa!  That thought hit me hard.  Perspective y’all.  Perspective.  ALWAYS.

One of the worst days of our parenting life was the day 6 years ago when Cannon first saw the Chait Button in his abdomen.  The sheer terror was almost more than we could bear.  We had shielded his eyes prior to that moment in the hospital shower.  It was something I hoped to never experience again. I think that is the part of this I dread the most.  Him seeing it…. and what it entails for the first time……and watching his new reality sink in. Enduring the inevitable (or so I hear) dislodgings of the tube, leakages, potential allergic reactions, and overall trial and error that goes along with something new like this.  Can’t we just press fast forward…..taking us to a time after he has adjusted?

Friends……we would be so honored if you could pray for our Cannon.  The specific prayer needs are for us to get all the necessary things in place BEFORE he enters the hospital.  To have the assurance that specific supplies will be ordered and waiting, feeding therapy approved and ready to start when we are, finding a type of elemental nutrition that he is not allergic to, and a rock star social story waiting to help him comprehend his new life.  I am working hard on all of these.  But prayer support would be INCREDIBLE!

Difficult and uncertain times aren’t just coming for our family.  They are here…..that’s for sure.  And we may not know what the future holds….. but we DO know who holds our future.  Our plan is to approach this new challenge with trust, with hope, and with faith in our Creator and the One who loves Cannon even more than we ever could. I pray that from this day forward……we can always remember to replace fear and scary statements with God’s word…..Making these verses our battle cries…..the first words to cross our lips when our flesh wants to fall backwards into despair.  In true “fake it till you make it” style……here goes……

When the thought crosses my mind that “I can’t do this…..it’s too much”……I will think of …..

Joshua 1:9 “Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

When I hear “He may never eat by mouth again”……I will remind myself……..

2 Corinthians 4:8-9 “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted , but not abandoned; struck down, but not destroyed.”

And if they tell me “Cannon can’t be cured”……I will remember……

Phillipians 4:6-7. “Don’t worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done.  If you do this, you will experience God’s peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and your minds as you live in Christ Jesus.”

Y’all help hold me accountable on this!  And please…..adapt them to your own battles and challenges.  Remember sweet Cannon in your prayers…..I beg you!  And know that we are so very blessed and thankful to you for being a prayer warrior for our family!  God bless you!

Since June…….

Dear friends and blog family,

I am forever apologizing for my slack existence as a blogger.  And yet, here I am once again.  All I’ve got to give is a giant “Sorry y’all!”  You have no idea how many hundreds of scribbled notes I have.  Jotted down in various places and instances that then sit on my desk…..waiting for quiet moments to develop them.  Moments that seem to never come or are overtaken by too many other things on the to- do list.  I’m here now!  I love you all!  Thank you for being here!  Onward I press……

Since the month of June, we have begun seeing a progressive and significant change in our sweet Cannon. At first, we attributed it to the monsoon season we have here in Arizona and its subsequent atmospheric pressure changes.  These can really mess with Cannon and other kiddos with sensory issues.  But as time passed and these episodes got worse…..we realized this theory wasn’t quite accurate.  We also wondered if his Autism combined with pre-puberty and the language capabilities of a child less than half his age could be the culprit.  But again, we feel this isn’t the whole story.   The change we were seeing is one where “mere” meltdowns have taken a turn…..and become downright rages.  One where our loving, kind, snuggle buddy has been disappearing for longer and longer chunks of time.  In his place, an emergence of one with tremendous anger, insatiable rage, and intentional harming of himself.  Slamming his head into walls repeatedly, biting his hands and knees, and picking at his skin incessantly until he bleeds are commonplace.  Kicking, spitting, grinding his teeth, and screaming angrily pressed into our faces are almost always actions that are present.  His defiance and backtalk have become reflex-like.  His appetite for an argument and level of confrontational-ism are through the roof.  His anxiety is worse than ever.  That darn fear of water on the ground has been holding strong for years now and is being joined by others.  Fear that I will give things away, that we aren’t going places I tell him we are, and that certain activities will no longer be options for him…. These thoughts haunt him.  He asks 20-30 times in a row the same question.  Tics have risen up…..so many of them.  This had never been something we had dealt with before.  One tic that we are still fighting is where he licks his lips and then rubs his fist across them and onto his cheek.  The chap that resulted on his cheek and hand has gotten so bad at times, they look like bruises and/or infected.  A neighbor even asked if I had hauled off and smacked him really good.   Being out in public is a challenge as we never know when one of these episodes will happen and when they do…..removing him is quite a loud and physically challenging job to say the very least.  These rages have become so bad that a couple of his doctors believe its best for us to keep him home for a bit while we figure out how to control them.  Our bottom line and greatest concern is that he has lost his ability to cope.  With anything and everything.

“God I look to you.  I won’t be overwhelmed.  Give me vision.  To see things like you do.”

This week, we had 4 appointments scheduled to tackle this issue.  The first, I drove him over 4 hours round trip to see his Developmental Pediatrician.  Yes, he IS that wonderful!  We discussed some modifications to our current stress management plan.  We talked about a behavior modification method that we were trained on years ago and how to tailor it to the Cannon of today.  Using data collection and graphing to monitor and attack behaviors that are of most concern.  These are all things we are doing currently but with slight tweeks.  And that is why he feels that we have to start considering medication.  For the sanity of our entire family, for the safety of those around us, and because Cannon deserves a chance to live the best life he can.  The place we have progressed to is not ok.  It’s not fair to him.  He is better than this!   I realize this is a topic that might really get some people going.  I would ask that you respectfully decline from comment if so.  We have just about literally bankrupted ourselves trying everything else on the planet.  Every supplement, every essential oil, every therapy, every doctor, every everything.  Please, please know that!  And we haven’t made a definitive decision either way.  It is just looking probable at this point.

The next day, we went to the Aerodigestive Clinic to meet with 3 more doctors.  His G.I. doctor decided to start him on a 14 day course of antibiotics.  This may seem strange but 6 years ago, we went through an exhaustive 4 month ordeal of insane behavior and insomnia.  When treated with antibiotics, it went away immediately.  Cannon’s body harbors bacteria.  It’s a chronic issue.  So, we will see how he responds to it this go round.  He also wants to do an Upper and Lower Endoscopy as soon as we can get it on the schedule to see if there is anything new or flared up internally.  His Pulmonologist agreed with the previous and wants to tag team on that procedure with her own Bronchoscopy.  I am particularly interested to see if his aspiration rate has increased with this behavior.  In July, it was the lowest rate we had seen in 2 years.  But with no rhyme or reason.  Not a one of us trusts his body for a second.  He ebbs and flows constantly without recognizable symptoms so who the heck knows!  I was most interested to discuss a particular disorder with his Allergist. He is affiliated with a clinic that diagnoses and treats children with a disorder called Pediatric Autoimmune Neuropsychiatric Disorder or PANDAS.  All 4 docs agreed there were a lot of similarities and that this was an appropriate discussion to be having at this point.  However, the allergist feels that as of now…..it’s not checking enough of the boxes or setting off enough red flags.  He thinks the most direct route to help for Cannon is the medication his Developmental Pediatrician recommended.

“God I look to you.  You’re where my help comes from.  Give me wisdom.  You know just what to do.”

So, the 14 day course of antibiotics are on-board.  Procedures are getting authorized and hopefully scheduled soon.  And after 5 doctors and 1 pharmacist have concurred on this particular medication that will help Cannon control his anxiety, tics, and extreme behaviors….we are considering it.  And that is where we are to date.  We welcome your prayers as we try to isolate what has caused this latest season of struggle.

I sought the advice of a long-time friend who happens to be a rock star Special Education Teacher this week after a 4 HOUR rage nearly did me in emotionally.  Her words gave me exactly the perspective I needed.  She said, “Kimberly…..just love him.  And remember that ALL behavior is a form of communication.”  Thank you Tracy!  This perspective was absolute perfection!

Friends…..this season has been a rough one.  I have cried more in the last few days…..  My patience has been tried to the brink.  The stress on my sweet family has tested us….but we are holding on (sometimes by our fingernails but still…).  But hear me on this y’all…..I am forever blown away by the opportunity for growth, comfort, and intimacy with God during these times.  Just being willing to reach out in fervent, honest, whole hearted prayer.  To worship through the struggle…..even when you don’t feel like it.  To meditate on scripture.   To lift heavenward/breathe in sound song lyrics that uplift, encourage, and support…….It’s all so vital.

“I will love you Lord my strength.  I will love you Lord my shield.  Oh, I will love you Lord my Rock.  Forever all my days, I will love you God.”

This song was on repeat in our house this week.  I hope it becomes a battle cry for you as well!  See the challenge you are facing, acknowledge it to God therefore releasing it to him, and rest…..yes REST in the power and strength that comes forth!  We love you all!

Autism Awareness Month Day 14 – Social Stories, Procedures, and At Long Last…..A Medical Update

Social stories are a much loved and appreciated tool in our arsenal with Cannon. These stories are short descriptions of a situation, event, or activity which include specific information about what to expect and why. They improve not only their social understanding but also their self-understanding.  These stories prepare them so that they can behave in an appropriate manner. They are so very effective for our sweet guy!  Seeming to resonate better with him and giving him something tangible he can fall back on if he begins to get upset.  If learning about these stories interests you, there is a great book called “The New Social Story Book” by Carol Gray that is available on Amazon.  Here was the April 14th version of a story I wrote for Cannon.   A Bronchoscopy, as well as an Upper and Lower Endoscopy were performed that morning.

We went into this day expecting things to be a bit better.  Cannon’s pain had been more manageable and he seemed somewhat happier.  In mid-January, we had started him on a protocol from an Environmental Medicine doctor out of South Carolina.  He had spent hours (over several days) with us reviewing his history and asking tons of questions.  He also examined him and did extensive, extensive testing.  Allergy, blood, hair, urine….all of it.  Many issues were found and a comprehensive plan was put in place.  With the feeding tube and Nissen Fundoplication surgery as very real possibilities……we just had to try EVERYTHING possible to keep those options at bay.  And we were seeing results.

Cannon’s Gastrointestinal doctor reported good news!  His esophagus looked great, there was no food in his stomach that day due to his Gastroparesis, and his colon looked a bit better.  (Despite the fact that his Chait Button flush prior to the procedure did not totally take.  Weird!)  The colon has had several issues in the past that were either gone or much better, though.  I will spare you the details.  Good news!

The Pulmonologist also reported back to us after the Bronchoscopy…..quite a bit of information actually.  His upper airway is still inflamed with nodularity.  His larynx or voice box was red and showed signs of edema.  His upper trachea was nodular.  His adenoids were a little big.  And his upper airway was unimproved.  Not the best news but not the worst.  However, she truly believed that we were going to have improvement on the pathology report that would come back later.  She didn’t think the issue was completely resolved but she thought we would see a decent improvement.  Unfortunately, her hunch was incorrect.  His rate of Lipid Laden Macrophages (fat from food found in the liquid collected from his lungs) increased from 35% to 40%.  Not too bad of an increase but a number that should be at “0” and has been treated as heavily as possible for the last 1 1/2 years.  We had been told that ANY increase would mean surgery.  But thankfully, she decided to do a chest x-ray to see if there was marked additional damage to his lungs due to this ongoing issue.  And the answer was “no”……THANK THE LORD!  Our prayers were answered.  No surgery…..for now.

The labs taken that day showed elevated liver enzymes.  No bueno.  His G.I. doctor feels this increase is due to all the supplements he is on.  He agreed to allow us to continue for 3 months.  But if at the end of that 3 months, they are still elevated…..he has to stop the med protocol.

I feel like we live 3 months to 3 months these days.  With new endoscopies and bronchoscopies being performed at that frequency.  As a matter of fact, in just about 2 weeks……we have our next round.  This will be a big one as we add on a change of his Chait Button and pull the labs to determine if he can continue on the med protocol.  We continue to give this to God daily and trust in His plan for our Cannon.

Finally, a great praise!  Cannon has gained between 5-6 pounds!  He hasn’t had a jump like this in years!!!!!  A huge answer to prayer!  This has ceased talk of a feeding tube for now and we are beyond grateful for that!  After his 10 year well check in February…..he was really underweight.  His BMI was in the less that one percentile, weight in the twentieth, and it was beginning to affect his growth.  His pediatrician wanted us coming in every month to check his weight and to amp up our visits with the nutritionist.  We had previously started him on a liquid infant formula as his body does not handle food well.  We are supplementing with shakes for breakfast, lunch, and one snack.    He eats food for dinner and one snack.  The nutritionist had us add more things to the shakes…..Emulsified MCT oil, handfuls of organic nuts, walnut oil, and more.  And it’s working!  What a relief!

Well friends, that’s all for now!  Stay tuned for more Autism Awareness Month posts soon!  Love y’all!

Autism Awareness Month Days 11-13

Continuing to gradually post my compiled FB Autism Awareness Month posts…….

Day 11

I’m so thankful this is out there! That kids, now, from such a young age will be exposed to the concept of Autism. I’m grateful that Julia’s strengths are highlighted so beautifully. That she is shown as an equal. For this illustration of how her challenges can be overcome with a little understanding, effort, and compassion. And for the powerful message that…..”We can all be friends!” It’s not just teaching tolerating their presence. Friendship is possible and valuable! Kids with Autism truly want to connect….even if it doesn’t seem that way. They just need a little extra time, some empathy, and grace. The lessons neuro-typical kiddos can learn from spending time with and befriending anyone with a disability are great. Most importantly, my favorite part of this piece is that it helps the watcher to see that the kids want to be her friend not for the sole reason that it’s the right thing to do…but because she’s fun, interesting, and talented! Thank you Sesame Street! Thank you for being the change!

Day 12

This is how we do Autism in our house…..

Day 13

A dear friend who is a Special Education teacher told me from Day 1 of our diagnosis…….to never refer to Cannon as an Autistic child. He is a child first. Autism is only a part of him.

Autism Awareness Month Days 8-10

We continue to roll through my Autism Awareness Month Facebook posts.

Day 8…..

I hear the top half of this a lot. It’s the kindest, most precious sentiment and I 100% appreciate the sweetness of this compliment. BUT, the bottom half is the truth y’all! The complete and total truth!

Day 9…..

Today’s topic is fear. When you live in a world that you don’t understand and that you are hyper-sensitive to……it can intensify any fears you have to a quite an unbearable place. One of Cannon’s greatest fears is water on the ground. It all started a few years ago when we had some snow flurries. We walked out of the chiropractor’s office and I was so excited to see them falling from the sky. I thought Cannon would LOVE it! BUT, he took one look at them and jumped into my arms….clinging so hard that his nails dug into my neck. He was screaming like he was in agony, hyperventilating, and begging me to get him in the car. This fear has expanded to include black top pavement, glossy floors, and grass. Most of which usually aren’t wet but he is convinced that they are. When this fear kicks in, there is no telling him that he will be okay, it isn’t wet, or that you will help him. If he isn’t picked up and removed…..things can get ugly FAST. Lots of time has been, is, and will continue to be spent on combating this fear for our sweet guy. We have discovered a crazy thing about this fear, though. If he is barefoot…..he is FINE. Closed toed shoes……100% NOT FINE. No rhyme or reason. That’s Autism! My best advice to anyone who encounters a person with Autism who is facing an intense fear is to love them. Encourage them and just be there. Help them out of the situation and leave it to the professionals to teach them how to get through it. If you try, you may fail and a full blown, angry, violent meltdown can ensue. Love, comfort, and support will always be the best policy. This goes for the parents you may witness dealing with this in public as well. Err on the side of compassion….instead of glares, stares, and unsolicited advice. And please, please, PLEASE understand how real this is for them. It is not brattiness or disobedience. They are warriors….getting up each day and fighting battles we can’t comprehend with perseverance! Love friends…..just love!

Day 10…..

And finally….one of my favorite visual aides ever to explain Autism. Read, learn, and process the difference…I beg you!

Days 6 & 7

Here was my Autism Awareness Month Post of Day 6:

I was wondering when the emotional conversation I had with Townsend today would happen. It’s only been about a year and a half since he found out his brother had Autism but that was the last time he REALLY cried over it. But today….during a routine Bible lesson and corresponding writing assignment, some feelings came pouring out of him that resulted in a lot of tears. A whole lot. A long talk ensued about his sadness over the fact that he can’t fix his brother and how it wrecks him so to watch him struggle and hurt. I wondered when this conversation would happen. I let him get all his feelings out, hugging and loving on him, and validating those emotions in comparison to my own. When the time was right, I explained to him that getting our emotions out is super important. But that God doesn’t want us to dwell on our sadness but to channel that into something helpful. Thinking of ways to make Cannon’s life easier, to support him, and to educate others and advocate for him. To encourage empathy not sympathy. And to always remember that this life is but a blip in time in light of eternity. I cherish far more than I can explain….the relationship that my boys have. They RARELY fight and when they do…..it’s really just mild irritation. Townsend watches over him and tries to protect him like a big brother…..even though Cannon is 2 years older. They speak so kindly to each other and absolutely love being together. I always thought Townsend needed traditional school as an escape for a few hours a day…..to the rigors of our life. But, he has no desire and simply loves homeschool and being a helper/friend in every way he can. He will correct you quickly if you say that Roxy is Cannon’s best friend. He will tell you they both are! What a ridiculously, incredible blessing!!! This Autism life is not easy on siblings. But with God’s help, we can get through these emotional moments and keep on a positive road filled with unwavering hope, endless joy, and so very much love! I encourage all of my fellow Warrior families to rest in the promises of God and to allow Him to bring strength and peace into your life…..as only He can!

And of Day 7:

Today I want to share the story and mission of a man who has become a true hero of ours! One who took something difficult in his life and turned it into something beautiful for thousands! His name is Izzy Paskowitz and he is a former World Champion surfer. His son, Isaiah, has Autism. Please watch and be blessed! Then, check out the “Our Story” tab where you will find videos of Cannon participating in this event! There is NOTHING on this earth he loves more! NOTHING! Surfing is perfection to him! The calm beyond the breakers and then the rush of riding a crashing wave meets his sensory needs like no other! We are blessed beyond measure to have “Uncle Izzy” in our life!

Autism Awareness Month Day 5

Day 5…..

Sensory Overload (or Sensory Processing Disorder) affects AT LEAST 3/4 of person’s with Autism and is one of THE most critical elements to understand about the disorder. Every day, our bodies are bombarded with MILLIONS of sensations. Our brains have to efficiently process all of that information….organize and interpret it….to be able to respond and behave adaptively. What we get used to in our environment…..sights, sounds, smells, etc……they just can’t separate, process, accept, or dismiss. Overwhelm comes over their bodies when trying to react properly. It is physically painful. And causes meltdown or shutdown. In addition, you are either hypo or hyper sensitive to these stimuli. (For example: One might seek out touch by throwing his body into walls, furniture, etc. and another dislikes touch so much that they cannot handle even the idea of receiving a hug). There is a lot of variety especially when you remember that this is a spectrum disorder. Here is a video that helps one to understand what it’s like to enter a mall when you have SPD. Don’t turn down your volume! Experience it as they do! It will change the way you view those going through this in public.

And one more simulation…..

One final example……

Excerpt from Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm:

“Here’s why a simple trip to the grocery store may be agonizing for me.

My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.

And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.”

I pray these examples change the way you react or treat individuals with sensory issues going forward. Be kind. Be compassionate and empathetic. Be the CHANGE.