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.

Autism Awareness Month Day 4

Continuing with my compiled Autism Awareness Month Posts……

Day 4…….I beg you to read this blog post I wrote nearly 6 years ago. There is so very much of my heart poured out into it. God used a situation that hurt my heart at first…..to encourage me and remind me of my blessings. Of the incredible strengths and amazing qualities of my child. And of the growth that was taking place within me…..because of him. I pray it touches and encourages you to reflect, savor, and thank God for all that makes your child….special. And if you know someone with Autism or any disability for that matter, I plead with you to see the unique abilities of that person….not the shortcomings! God bless!

Counting Our Blessings

Autism Awareness Month Days 2 & 3

In the month of April, I drew inspiration from friends who had done something similar and made it my mission to post an Autism Awareness post every day on my personal Facebook page.  I would love to share each and every one of those with you now!  We will do a few at a time.  Here goes…….

Day 2 – On this day it was World Autism Awareness Day! I shared that my family’s life has been completely redefined by the joy and heartache of Autism. By the challenge of meeting our sweet Cannon in his world and trying to draw him into ours. Every precious smile, few seconds of solid eye contact, and uninitiated hug is a treasure and a victory and motivates us to keep at it! The progress he has made from nonverbal, angry shell of his former self to today…..7 years later…..is remarkable. We are so proud of our beautiful boy! He may be different BUT he is NOT LESS! He may need more time, more patience, and more love to get through a simple outing, homeschool lesson, and/or an average day…..but he is worth every ounce of effort! With God’s help, we will continue the fight today, tomorrow, and always! On this special day, I would like to share with you the story of my family. (This was made years ago and needs so badly to be updated but you will get the gist.) God bless you all!

Day 3

My prayer is that these daily posts will be informative, helpful, and uplifting. Each day IS hard but I hope to reveal how very much joy and love there is in our home. And the never-ending awe we experience every single day when delving into the inner workings of his complex mind. Let’s start with this great list (which is actually from a book if you’re ever interested). This list touches on so many important areas of this complicated developmental disorder. Please take a few moments and have a look.

https://www.autismspeaks.org/family-services/tool-kits/100-day-kit/ten-things-every-child-autism-wishes-you-knew

https://www.amazon.com/Things-Every-Child-Autism-Wishes/dp/1935274651/ref=sr_1_1?ie=UTF8&qid=1496305221&sr=8-1&keywords=10+things+the+autistic+child+wishes+you+knew

Autism Awareness Month Kick-off and Walk

So, I AM still alive! Yes, it’s true! My self proclaimed title as World’s Worst Blogger is still intact y’all! No surprises here! I’m so sorry! Life as an Autism navigating, meltdown managing, homeschool teaching, housecleaning, Service Dog walking/training, therapy coordinating, meal preparing, bill paying, Chait Button flushing, medicine pushing, laundry folding, Bible reading, Taekwondo and Baseball Mom is just crazy busy! And can leave me pretty darn depleted at the end of the best days. As well as, I never feel like I have a complete and final answer to report from Cannon’s medical perspective…..so I talk myself into waiting until I do……AND then that doesn’t happen. So, this blog sits dormant. Well, I am determined to get you up to date! So……

Apology aside…..let’s dive into what we were up to in the month of April. Autism Awareness Month!

Team Cannon was at it again! We were blessed to attend and participate in our local Autism Walk for yet another year! With some of the best people a family could be privileged to know. This event is always impressive, wonderfully supported by the community, and helps provide the funds for so very many meaningful programs and services. And look at the faces of these precious friends and family who joined us!!!! Having people in your life who give up part of their weekend to love on us and honor the life and daily struggle of our child is just so indescribably AMAZING! There just are not words to express how much it means Jim, Gail, Christy, Grant, Holdyn, Fletcher, Delaney, Paige, Jessica, Kurtis, Madisyn, Maksyn, Makenzie, Rob, Kimberly, Luke, Kyla, and Grandma! We love each of you so! I also want to thank Ruth, Karli, and Carey for helping the organization further their mission through their donations! Y’all are such incredible blessings in our lives! We adore you and from the bottom of our hearts appreciate it! Thank you! Thank you! Thank you! More to come soon! Enjoy these pics from our fantastic day!

       

 

      

 

      

 

       

 

      

 

      

 

     

 

     

 

      

 

Don’t you just love our Roxy girl?! Cannon was getting upset partway through the walk so she just got right in there with her boy to get the kissing, nuzzling, loving on, and comforting job done! I tried getting her out at a couple of points but she would just hop right back in with reckless abandon! It was hilarious! And so, so precious at the same time! This girl loves her job! And we are blessed every day by her diligence!

     

 

     

 

     

 

It’s Complicated…..

Yesterday, as I woke up to a kiddo with no congestion after a week of nothing but and one who was willing to tackle the difficult day that he knew laid before him…..I was struck by the impact of prayer. The priceless, selfless gift of prayer that so very many of you have completely blessed our families socks off with. As tears of thankfulness fall on my laptop…..I beg you to understand how very, very much we felt them. God bless you all! We love you so much!

Ok…..yesterday…deep breath…..here we go. I’m going to try to be brief. Ha!

The plan for yesterday was executed flawlessly minus the 3 extra hours we had to wait to get started. As soon as Cannon was down for the count, they got an I.V. and drew blood for ALL the labs. His G.I. doc’s nurse was there to grab them and take the vials directly to the lab. Then, the Interventional Radiologist came in to rid his body of the icky old Chait Button. (It has been leaking badly for the last year so they aren’t lasting as long. And it gets almost brown after beginning as white.) So, YAY for a fresh, new, perfectly placed button! He was then wheeled down to an OR where our new Pulmonologist performed the Bronchoscopy. We hadn’t met her before and were slightly apprehensive about beginning anew with someone…..especially being in the grave position we are. But, God could NOT have possibly answered our prayers more. She was BEYOND wonderful and the transition was so very seamless. She met with us for about 20 minutes beforehand and gave us lots of information, told us of things she was going to investigate, and goals she had for the procedure. Our minds were pretty blown by her awesomeness! Praise the Lord! Her part was to be followed by his G.I. doc performing the Upper and Lower Endoscopy. All went as well as could be expected in terms of execution. They even moved Mark and I to a private consult room instead of the general surgery waiting room. This was super helpful. We felt like high rollers.

Bronchoscopy

His vocal cords and larynx looked good. One suspicion she had prior was that they could possibly have become numb from prolonged reflux…..This could be causing them not to protect his lungs and respond the way they should thus allowing aspiration. There is a test that is better at determining this but she has a pretty good feeling that this is NOT happening. THANK GOD. There was also no edema in his lungs as had been 2 Bronchs ago. BUT….there ARE now nodules on the wall of his trachea, and on the right and left side of his lungs. There is chronic inflammation of his airway wall. Extensive damage from aspiration and reflux. She wants to get a CT scan in the near future to determine the full extent of the damage to his lungs. She thinks that it hasn’t gotten to his air sacs yet but that is a matter of time if we don’t act. She got a good sample of liquid and we will have to wait for the pathology report to know about that. This will show the rate of aspiration…..how much fat from his food is getting in. She was shaking her head when talking about the sample. She did not seem to have any hope that it would be a good result. Not at all.

Upper Endoscopy

There was no food in his stomach which is always good to see considering he has Gastroparesis (partial paralysis of the stomach). But his G.I. doctor saw evidence of extensive damage to his stomach still. There was bile. LOTS of it. In his stomach. Bile belongs in the small intestines. I have pictures but I will spare you. It’s gross. My poor buddy. Can you imagine what that feels like? His esophagus did not look good. Appeared very irritated. It bled a lot more than normal when they performed biopsies. And there was what appears to be yeast in his lower esophagus. Which means it is probably raging in his gut. We have started him on Diflucan every day for a week and he wants us to continue once a week for 3 months which may turn into always because he believes it is another chronic issue. Cannon already takes a med for chronic bacteria in his gut….this would be for chronic yeast. There was also still reflux visible even with 3 of the highest doses of reflux medication possible being consumed each day.

Lower Endoscopy

This is usually done as a formality with no issues. But not the case this go round. There was A LOT of mucus present. There was irritation around his rectum which we now have to give hydrocortisone suppositories nightly for a while. There was also hypervascularity throughout his colon and rectum. All are not normal.

When the Pulmonologist and G.I. doc were both in the consult room with us afterwards they began discussing where we are at. We ARE going to wait for the pathology reports and labs to come back so that we have the full picture. But they agree its time for drastic action. We can no longer allow his lungs to be damaged by the reflux. We have done all we can medicinally. It’s not working. My understanding is that there are 2 options. 1) A Nissen Fundoplication which is a method of taking the top of the stomach and literally wrapping it around itself, 360 degrees, to create only a very small opening. It will change the anatomy of his stomach forever as it is irreversable. The idea is that he could no longer reflux or throw up. 2) A Gastrojejunostomy (GJ) feeding tube. A feeding tube placed in the small intestines rather than the stomach. His stomach is partially paralyzed so the regular feeding tube into the stomach would not work. The draw back to this one is that he would need to be hooked up to it continuously rather than just at meal time. Because the small intestines aren’t set up to take on large feeds.

There are issues and questions we have about each and we will be addressing all of that soon. Just need to wait for pathology and labs to come back.

We definitely suspected there was more going on due to his increased pain but this was far more than was imagined. But does help us understand the doctor’s urgency.

My prayer requests are twofold.
1) That the pathology and lab reports would come back quickly.
2) For clarity in the coming days as we make this very big decision.

Friends….thank you for the love, prayers, and ALL the kind messages. 4 1/2 years ago, when Cannon had to get his Chait Button….we felt very similarly. And that hasn’t exactly made life easy but it has improved Cannon’s quality of life. That is our sole goal as we pursue the next step. God walked beside us, guided us, and sustained us during the year or so it took us to adjust to the Chait. We are confident that that will happen once again. Are there tears and disappointment?…..Sure! Absolutely! We have done everything in our power. Everything nutritionally, therapeutically, medicinally, and more. And I wish with all my heart we could spare him from this but I have to cling to what I know is so. It is well with my soul!!!!! Through tear streaked eyes I cry out….It is well with me. Love to all!

“I love the Lord, because he has heard my voice and my pleas for mercy. Because he inclined his ear to me, therefore I will call on him as long as I live.” Psalm 116:1-2