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!
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.
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!
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.
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.
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.
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
This phrase escaped from the mouth of our Cannon for the first time about 3 months ago. A perfectly normal thing to say, right? So, we did what anyone would do when told this. We looked around and asked him what toy or device he could be talking about. Testing various ones that flash, move, and make noise. Nothing. We looked inside the house and out….in the car. Nothing. And he would just get really frustrated when pushed to identify the object so we often just dropped the subject and tried to redirect him to something else. A snack option, playing a game, going outside. Anything to keep him from continuously repeating this phrase. And I mean CONTINUOUSLY. (In the Autism world, this is called “scripting.”) It has come up in the most bizarre locations….church, public bathrooms, during therapy appointments, in the shower, and such. We felt like we tried our hardest to understand why he kept saying this but we simply could not. And just chalked it up to something he must have heard somewhere.
He didn’t stop saying it over the last 3 months. And the intensity with which he would speak it amped up as well. He would get into my face and press his face to mine telling me adamantly….”I NEED BATTERIES.” I was at a loss.
Recently, we traveled to Oregon to visit Mark’s family for the first time in 6 years. We had a lovely visit but with its usual set of complications. Getting proper food, meds, and wound care supplies for Cannon. Keeping him calm in the face of new situations, places, and people. Training Roxy to help with those things and following all service dog protocols. And just managing his pain while trying to be polite to our hosts and such.
But one day, we had a breakthrough/heart break. Cannon had struggled mightily throughout the trip and the last few months with much increased tummy pain. He has been begging in most cases to drink all his meals. We try to get him to eat at least one meal and one snack that is food but aren’t always succeeding. We are using medical food in powder form to make shakes for him super often. I honestly can’t remember the last time he had 2 food meals in a day.
One night, the pain was particularly bad. I tried everything. Medicated him. Put him in a warm shower (which he likes) to try and distract him. Massaged his tummy the way a therapist showed me. Read a favorite book, had Roxy give lots of cuddles and kisses, and sang favorite songs to him. Nothing was giving him any comfort or relief.
And then, 3 months of trying to tell us something finally came together.
He grabbed my face and screamed, “MY BODY ISN’T WORKING! I NEED BATTERIES!!!”
Well, there it was. I admit to being stung by the words and stunned at the same time. He made PERFECT SENSE. When a toy no longer works, you put batteries in it. So, why couldn’t he be the same way? AHHHHHH!!! My heart broke. Right in half. Because I had done all I could in terms of pain management. My eyes brimmed over with those hot, salty tears reserved for the really tough stuff. I held his hand, placed my other on his tummy, and prayed like I haven’t in a long time. With PLEADING, with every word I could muster, with fire in my soul…..I PRAYED! He just laid there. I thank God he slept that night. I begged for at the very least….that. I fell asleep with him on that little twin bed in my in-laws house. Clutching my sweet boy and continuing to pray with ferver. Feeling the closeness to both Cannon and my Father in Heaven as I poured out my heart.
Psalm 34:18 says, ”The Lord is near to the brokenhearted.” This verse could not have been more true that night.
Y’all! The moral of this story is twofold. 1) Chronic pain is nothing short of ROUGH! But, God hears our prayers. 2) Never, ever underestimate people with Autism. They ARE trying. There IS sense to what they say quite often. If you hang around long enough, dig deeper, and just love them……sometimes you’ll get a glimpse into those fascinating inner workings. The complex labyrinth that is the Autism mind. The pieces just have to come together.
Tomorrow (or today since I am posting this so late), Cannon will have an Upper and Lower Endoscopy with his G.I. doctor (labs and biopsies included), a Bronchoscopy with his new Pulmonologist, and a changing out of his Chait Button in Interventional Radiology. The scopes will give us a glimpse as to how his esophagus is faring against his raging reflux, whether or not Eosinophilic Esophagitis (asthma of the esophagus) is still present, and check out his stomach for any damage from the Gastroparesis. The Bronchoscopy will let us know how his lungs look and whether or not he is still aspirating fat from his food into his lungs. And if so….how badly. This last bit of info will determine if we continue discussing the possibility of a feeding tube or not. This is still VERY much a possibility! The Chait Button has to be removed and switched out with a new one every 9 months. It IS a bit tricky due to the spiral nature of the tube which is why it is done in Interventional Radiology as opposed to surgery. They can inject dye into the pathway to see where they are going with the tube instead of blindly winding the tube back in.
The biggest prayer request we have right now is this. Cannon has had a cold all week. It seemed to be going away and he sounded good this morning and tonight he is stuffing right back up. I am doing all I can with medicine, oils, liquids, humidifiers, and such but we are where we are. If it isn’t much improved by the morning, they will not put him under. And rescheduling a procedure that involves coordinating 3 doctors schedules is quite tricky.
We need the information that these procedures can bring and are praying with all our hearts that this particular day will give us more answers than questions. More solutions than disbelieving head shakes from the doctors. NO NEW DIAGNOSES!! And bring change that produces peace into our sweet Cannon’s body. A peace that would have him never requesting batteries for pain relief ever again!
But no matter what….we will continue to pray him through the tough moments, love him through the anger, snuggle him when he’s sad. Proclaiming from every mountaintop and valley of this journey….the words of this song…..
“I have this hope….in the depths of my soul. In the flood or the fire…..you’re with me and you won’t let go.”
“Trusting grace can be seen in both triumph and tragedy.”
Yesterday, was Mother’s Day. And during church, we had a precious few minutes. Ones that would go unnoticed to most…. but for us……it was a profound gift. A sight to remember. A moment of reflection and awe. We looked over at Cannon during worship time…. to find him COMPLETELY attentive and singing ALL the words to one song…..the one below. You have no idea.
Church can be such a struggle with our Cannon. His stomach is hurting and his response is to wiggle constantly (on good days) or thrash about with many sound effects (on the tougher ones). All the while attempting to find comfort. The service and sanctuary can overstimulate him…..with all the sights, sounds, smells, and such. And his frequent response is to meltdown, flap his arms wildly, kick the seats, yell out, hit himself in the head, and on and on. He talks normally…..having little concept of his volume and the need to be quiet….despite the fact that he has been in church all his life. He can be combative or reactive when corrected. He begs incessantly for his drawing board and/or the iPad. And I do cave….but NEVER until the sermon. Many of these experiences may sound familiar to anyone who has ever taken a child to church. But I assure you that Autism amplifies these scenarios.
When we arrive at our usual spot in the balcony…..his pattern is to immediately grab the hymnal. He turns each individual page until he has turned them all. This seems to help him acclimate.
Getting him to focus on just one element of the service and participating in that part has been a goal of mine for some time. Just following along from start to finish during the scripture reading. Helping me fill in the blanks on my sermon outline. Or even to take the outstretched hand of fellow church members without being prompted by us and to return their greetings with a response as well as a glance into their eyes. His lack of visual attention hampers these efforts and most especially…..the singing of the words on the screen. But not for about 4 minutes yesterday. Hallelujah!
We were standing. The song had just begun. Cannon was next to Mark..and I was holding the hand of my love. Roxy was sleeping at our feet. Townsend….off having fun at Kid’s Church. Mark squeezed my hand and I looked at him and smiled. But he motioned with his head towards Cannon. I looked. It was so beautiful. In that moment, even the gray color of his skin seemed to be gone and he appeared to have a healthy glow. He was smiling slightly. Standing up straight…not hunched like he can…due to tummy pain. Not stomping on his own foot over and over like he can. He was following the words….meticulously. Singing each word audibly and proudly. Not softly or just mouthing them. Truly singing each and every precious word. I was awestruck. To say the least. But then….something else got my attention. The words he was singing. Oh, those perfect, perfect words. Have a look…….
By: Matt Redman
Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Is Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
I was breathless. Tears rushed to and escaped from both of our eyes. There just aren’t enough ways to express the power of our sweet, war torn Cannon singing the words that are our heart’s exact feelings/experiences in regards to his developmental and medical journey. It was a heaven given Mother’s Day blessing!
The Timehop app does a great job of reminding me on a daily basis of the horrific first days after Cannon’s Autism diagnosis. The battle with the insurance company and the intense struggle to build a team of people and therapists around him. To guide and to teach him, thereafter. Of the years we could not figure out what was wrong with him medically. And those where we were CONSTANTLY in and out of the hospital. The days after his Chait Button surgery that were filled with anger, sadness, and the unknown. The new diagnoses that seem to slap us in the face on a fairly regular basis. It’s been a rock laden road. BUT…..those hard times help one to appreciate these types of moments where a small victory is really a HUGE victory!
I pray that right now….you will listen to this song….watch this video….and find something. Something that your heart might be searching for today. If you do not know the Lord, I pray that it will convince you once and for all to abandon all and follow Him. THE ONE who can provide you with all you need….no matter what. Your Savior. If you are struggling yourself, I pray that the words will convince you to send your burdens heavenward. He IS there…..ALWAYS. If you are a Believer….I pray it is a few joyous moments. Relishing the fact that you are never alone. Wherever you are in life….I pray it blesses your heart and strengthens your spirit. With all my heart….this is my prayer.
God bless you guys! And Happy Belated Mother’s Day to all the mammas!
6 years ago yesterday was the worst day of my life. The day my precious, first-born son was diagnosed with Autism. Yesterday……was one of the best. The day he first met his very own service dog. Wow! What a contrast!
6 years ago and a few months prior…..all had been perfect. Cannon had walked early, talked early, and was incredibly smart. But in a 2 month free fall, he lost the ability to speak, make eye contact, and seemed to do nothing but scream 24-7. Our lives were turned completely upside down. We had lost the boy we knew and were left with a shell of his former self. It was devastating.
Today…..6 years after that awful, life changing day….he began a new chapter of his little life. And hopefully, one that will lead to a much better, more independent, happier life. One where he is even more supported and love. Even more confident and capable. And even more protected and safe. We are so excited to see how this changes Cannon’s life for the better.
Our class is being held at a local church. 4 Paws for Ability is building a new building on their current property and it just isn’t ready quite yet. So, we are using a large Fellowship Hall type room thanks to the church’s generosity. We were greeted by signs and a 4 Paws employee to direct us. It was nice to see the families whom we have been talking with on our class’ Facebook group for months!
The beginnings of class was short. Introductions of all the trainers and a quick once around the room so that each family could present themselves. Then, the moment we had all been waiting for! They began bringing the dogs in! One at a time with 10-15 minute gaps in between so that each family had their moment and could get their photos and such. 1, 2, 3, 4, 5, 6, 7, 8 dogs came in and went to their children. Still no Rocket. But, we were patient. And they definitely saved the best for last! Our Rocket bounded in. I was so emotional leading up to today. Getting all teary any time I thought of what was coming. I figured I would fall apart when our Rocket was finally in our arms. But that did not happen…. it couldn’t.
The trainers had withheld breakfast so that we could feed them. It would help with their excitement and bonding they said. So, our guy was READY TO EAT!!!!!! And he did not hold back. He was focused! It was pretty hilarious. Have a look.
This pic shows the first moment our family laid eyes on our Rocket! I’m in love with this one!
And here are a few pics from our special morning……
The only thing was that Cannon was not feeling well. His tummy was REALLY hurting and he had been emotional several times before Rocket came in. His button was leaking and his jeans were bothering him. (We tried switching him into comfier sweat pants but had minimal improvements). When Rocket came in with so much energy, I think it was a little more than he was feeling up to in that moment. The trainers assured us that this was the most excited we will see them. Just a few minutes into our first meeting with Rocket, Cannon began asking to go back to the hotel. He just thought……I’m feeling bad, we got my dog, now let’s go lay down at the hotel. He struggled a bit with the fact that we had to come back after lunch. But we did our best to distract him with drawing and other toys. But mostly he just sat and laid on one of us.
During the afternoon session, Mark and I began learning basic commands. “Sit” and “down,” as well as each command with a 30 second wait for a treat after task completion and walking a circle around them after completion.
I was nervous about the start of the actual training as I have never had a dog before and have had extremely limited contact with dogs my entire life. But I was pleased with how it went so far and look forward to learning more in the days to come. Rocket was very well behaved and much more chill. We are bonding. I can feel it. And Cannon really likes him, too. The trainers say that the bonding process can take time between the child and dog, too. And that’s perfectly normal.
Y’all! I can’t possibly tell you how thankful we are! This experience would have never been possible without each and every one of you coming alongside us and helping us get to this point. You loved us, you prayed for us, you encouraged us, you helped us fundraise, you donated, and you helped us get the word out. My gratitude is overflowing! Thank you from the very bottom of our hearts! Our child will never be the same! And you did that! The absolutely incredible contrast between these 2 days…..separated by six years is just unbelievable! All our love!
World’s worst blogger here! About to head off to bed before one of the biggest days in my family’s life! Tomorrow…..after 2 years of searching for the right agency……paperwork….interviews…..more paperwork…..fundraising……LOTS more paperwork……a copious video filmed and assembled…..and waiting, waiting, WAITING……Cannon will FINALLY get his service dog!!!!!!!!
And he is the prettiest dog I have EVER seen! (I know this has nothing to do with his purpose….but gosh darnit…..he is PRETTY!)
We had been told that we would receive a picture and letter from the dog 7-10 days before our class began. We waited super anxiously…..so ridiculously excited to get our first glimpse. The waiting and constant refreshing of my email about drove me crazy. And we didn’t get it until 5 days before class!!!!!! But we got it at a perfect time…..so perfect!
We had been waiting and hoping all day…..but nothing. Cannon had been in terrible, terrible pain all day. I wanted so badly to give him this news. To give him something to be happy about. But…..crickets. Mark and I laid down with the boys for our regular nightly story and devotion reading time as well as prayers. When we finished, I decided to jump up one last time and check to see if the email had come through. I grabbed my phone out of an adjacent room and started walking back in Cannon’s room. When I saw the email THERE….I almost dropped the phone. My hand went straight to my mouth and tears dove out of my body. I tried to read the letter but I’m not sure anyone could understand me….I was crying so hard. It was a beautiful moment. All of us together. Having just prayed. And getting our first look at this beautiful creature. Our new family member and Cannon’s future best friend, companion, and protector. HE IS SO PRETTY!
Have a look.
And one of him as a puppy! Awwwww!
A precious element was the letter written from his new pup.
Cannon has decided to change the dog’s name from Drake to Rocket. He has been adamant about this ever since a friend suggested it. Sounds like a pretty dynamic duo. Don’t you think? Cannon and Rocket! 🙂 I can’t wait!
One crazy thing that happened while packing for the trip! I asked Townsend to grab off our shelf….the next book in the series of books that we read nightly. The one we are currently reading….we will finish in a couple of days. He does, hands it to me, and I couldn’t believe it! Check out the title! Coincidence?! Nope!
Here is a video and a few pics of our journey to Ohio…….
Finally….I hope that this amazingly trained animal will further help my kiddo realize his purpose in life. I pray that he will guide him, love him, comfort him, and give him the strength to pursue his true potential! Watch out world! With God, family, friends, and his Rocket by his side…….Cannon is gonna be UNSTOPPABLE!
I admit it. I do. Lately, we have been feeling quite a bit sad and helpless. Helpless, as well as, overwhelmed. Overwhelmed with circumstance, responsibilities, diagnoses, and life right now. Pretty darn emotionally exhausted and super tired physically.
When last I blogged, I asked you to pray for Cannon’s Endoscopy. I shared the strategic battle plan of prayer that I had been praying over his G.I. doctor. Well, we got answers. Lots of them. And as usual, it’s complicated. That’s our Cannon!
Let me begin by backing up slightly. About a week prior to Cannon’s scope, the boys and I went to our beloved Beads of Courage for an event. We enjoyed Bead Challenge Day where, among other things, we watched talented bead artists make tons of beads to fill BOC’s Bead Pharmacy.
The event took place at various locations across the country. One of the things we did at the event was string some beads onto bracelets.
We struck up a conversation with a young woman and her mother seated across from us. During the convo, she shared her diagnosis. Gastroparesis. Remember that one blog family? It was what Cannon’s doctor feared he had last year and was our reason for going to the hospital in Ohio. Where they specialized in it. They did 2 tests for the disease while we were there. One test couldn’t be completed as Cannon ripped the precisely placed tube out upon waking from anesthesia. The other was done and completed. The Gastric Emptying Study. It had a normal result. They told us this was definitive. He did NOT have Gastroparesis…..but Functional G.I. Disorder instead. I told this young woman our story and she kind of laughed. She said she had had 4 of those studies. 2 that were positive for Gastroparesis……2 that were negative. Since it is a relapsing condition….partial paralysis…..sometimes the stomach works and sometimes it doesn’t. If you do the study when all is well…..it will be negative. If you do it when all is not well…..it may be positive. So, bottom line……the test isn’t fool proof. She had the feeding tube to prove it. I found this conversation very enlightening. When we left Ohio in February, I felt okay with what they had told us. Although, I was surprised….as Gastroparesis had really made all the pieces fit together. I was thankful to have met this young woman. It put this thought back in my mind and allowed what came later to not be such a shock.
Back to the recent scope. Afterwards the doctor came in (just like last year) shaking his head. And again (just like last year) asked me when Cannon had last eaten. I remembered exactly and we did the calculations. 17 hours prior. He revealed to us that Cannon’s stomach was STILL full. I gasped and teared up quickly. My poor baby! How miserable this must feel. Eventually I got out a question. “Does this mean he definitely has Gastroparesis?” He said, “There is still food. There is Gastroparesis.” My heart sank. Another life long, chronic condition.
That was bad enough……but there was more. Reflux. But not just any old bout of reflux. Horrific. Major damage. He actually said that from what he saw “we are weeks away from losing his food pipe.” LOSING HIS FOOD PIPE?! This news was almost beyond my comprehension. Prior to our trip to Ohio, Cannon was on 3 doses a day of reflux medication. While there, they informed us that the sole goal of a reflux med was to protect the esophagus. And that 1 dose a day would do that. 3 was excessive. So, we listened and eliminated 2 doses. One of our reasons for going there was to edit medications. We knew he was over medicated at that time. We tended to add to the regiment constantly and never take any away as issues improved. So, we listened. And now…..this news. It was tough to take. He informed us we absolutely HAD TO put him back on the 3 doses immediately or else…… So, of course, we have.
And there is more. He is terribly concerned about aspiration. So much so, we will be seeing a Pediatric Pulmonologist soon. He said several times (almost in disbelief) that he had seen it happening with his own eyes through the scope. Instead of fluxing acid like what is normal with acid reflux….and because his stomach is often full of food for long periods of time….he is fluxing the food. He has a great fear that he will aspirate this food and we will be in real trouble. He told us we need to have eyes on him at all times…..particularly at night when reflux is at his worst. Getting a new video monitor for his room was a must as well as propping up the head of his bed considerably. Making sure to feed him early in the evening…..at least 3 hours before bed. Smaller more frequent meals are best.
A week later, we heard back from the biopsies taken that day, as well as the lab report. The labs showed low iron. Which shouldn’t be as he takes iron 3 days a week. So, we had to increase the frequency of that supplement. P.S…Iron is very hard on your stomach. No bueno.
AND the pathology report showed something called Eosinophilic Esophagitis (EoE). This was explained to me as “asthma of the esophagus.” It can be the result of reflux or allergy. The pathologist noted that the findings were consistent with allergy. The treatment…..more diet restrictions. Most of which we already eliminated…..dairy, wheat, gluten, soy, corn, and eggs. I had a good cry after hanging up the phone from hearing “Eliminate peanuts, tree nuts, fish, and shellfish.” Cannon LOVES almonds for snacks, and devours peanut butter. Salmon is also one of his most favorite things on earth. BOO! He already has so many restrictions. It kills me to take away foods that make him happy. The plan is to eliminate these things for 3 months and then get another scope. If all is better at that time, then we can add back in ONE of the eliminated foods. 3 months later…..another scope. If all is still well….another food added back and later… another scope. And so on. We also have to see our allergist to get a highly specialized allergy test.
The other thing the nurse reminded me on the phone that day was that now that Cannon is back on all the reflux meds…..he has to go back on the FODMAP diet. When you are killing ALL the acid in your stomach via meds…..it can become a breeding ground for bacteria. So, he has to take an antibiotic for that and eat in a way so as not to feed that bacteria. Bottom line…..between the 2 diets I have 15 pages of diet restrictions to cross check before feeding my child. Hence the previously mentioned overwhelm.
All of this is a lot to take and I’d be lying if I said it has not been a taxing and emotional time. To boot, Mark’s crazy work schedule requires me to always be the one to get up with him at night. Cannon’s button has begun leaking badly and we have had to increase the agitant in his daily flush which has made him nauseous again. And on a whole other note, we are facing a 20% pay cut after the 1st of the year.
The hardest part, though, has been seeing Cannon in so much pain. He has bursts of energy at times. And we are so thankful for that. He can go outside and play for a bit. But he tires quickly and often needs to be carried after that. He, sometimes, does ok in the mornings after the flush until about noon……he goes into a free fall. I would say 80-90% of the time, he is telling us he hurts. His eyes are terribly sad. He also isn’t sleeping well AT ALL. He gets up frequently during the night to tell us he is hurting. And there isn’t much we can do but give him right now…..Tylenol or Ibuprofen. IT IS SUCH A HELPLESS FEELING!!!!!!!
But, let me be clear……we feel HELPLESS but we are NOT HOPELESS!
Last night, I was reading our devotion to the boys from a book called My Big Book of 5 Minute Devotions. It was about the process of how the oyster produces the pearl. Through struggle, discomfort, and irritation comes this thing of incredible beauty. Out of bad comes good. Purpose from pain. I was thankful to share these words with my little loves last night.
Anyhow, I think that is all. I’m sure I have forgotten something cuz this mamma is wiped the heck out! But, this is most of it.
(Oh! We saw his surgeon this week and she is placing a call to the doctor in Ohio. With all these new developments, she wants Cannon to see him when we travel back that way in December to get his service dog. We will see what he says.)
Our battle plan of prayer will now evolve to fit our current needs. (More on that soon.) Our top priority at this time may sound strange. It’s to be broken. To let it out. To be real with my God. Vulnerable. To come to terms with these new words in our vocabulary, make ALL the necessary adjustments, and then move forward. With strength, acceptance, and the constant goal of giving Cannon the best, most healthy life possible. We will be ok. I leave you tonight with this song I came across recently. It is the words/heart of a lovesick Father…..begging for closeness with his child. Yearning to be trusted in hard times. Allowed to take over. Our family was built on faith and on that we WILL stand. God bless you blog family! Thank you for caring! We love you!
“So, let the pieces of your heart fall into my arms. I want to be your hope. So, won’t you let me….hold you through it. Let me carry you. I know it feels you’re at the end….but here your story is just beginning. I know your tomorrow. I know where you are. Though you can’t see past the moment……I see beauty in the broken.”
This morning, after 3 months of intensifying pain……Cannon will be having an endoscopy. His doctor will be taking a look all around his stomach, esophagus, and colon. And take biopsies in various areas as well as a ton of blood for lab work. He had been doing better since our trip to Ohio. And still is as compared to the condition he was in at that time. He hasn’t been vomiting at the incredible rate he was, isn’t totally lethargic, and has gained some weight. But starting around the beginning of June, the pain complaints kicked up. They very slowly increased at first but in the last month have returned with a vengence. The light that had returned to his eyes is fading big time. A sad, squinty look has become the norm. And he can look more pale. In an attempt to head this off and not let it get out of hand……we reached out to our G.I. doctor. He agreed it was time to take a look.
Recently, Mark and I were able to slip out and go see the movie “War Room.” If you haven’t done so yet…..GO! Like…..right now! It is incredible! Such a pertinent story for most all. In the movie, a woman whose marriage is crumbling is discipled by an older woman who encourages her to develop a battle plan in her prayer life. And shows her the completely cleaned out, distraction free closet where she prays. Attaching sheets of paper all around with various, specific prayer topics. A prayer strategy…..she calls it. I was very inspired by this movie! And to take a more strategic approach to my prayer life.
In that spirit, I pray for Cannon’s doctor this morning…….
I pray for his hands. That they would be gentle and move skillfully through my love’s little body. I pray that no damage would be done. I pray that his hands will be guided to the specific spots that need to be biopsied. And any areas that must be seen.
I pray for his ears. That he would listen intently and thoughtfully to us as we describe Cannon’s recent behavior and complaints. Hearing us completely and possibly making connections that need to be made.
I pray for his heart. That it would be open to Cannon. That he would empathize in a way that doesn’t allow him to give up.
I pray for his eyes. That they would be opened wide to whatever is going on.
I pray for his mind. That it would be clear of all distractions and willing to pursue a solution for our Cannon. Whether they find something and whether they do not.
I pray for his mouth. That he would speak life to us through solutions.
I pray for his feet. That if he needs to do more research or reach out to other docs for advice……that that will be done. No more ego. No more resistance. Because Cannon’s quality of life is all that matters here.
I pray this with all my heart and on very raw knees………
I am not and have never been eloquent in my prayers. But I know that my Father does not need pretty words. He just needs to hear my heart, my soul……being poured out before Him.