Catching Up On…..Everything

Remember me?! Life is definitely different since I last posted. So, so different. The same in all the ways you already know about. But with quite a few additions. Let me explain….. If it feels scattered, mistake riddled, and haphazard…’s because it is. This is just my brain….what I am capable of these days.

Puberty is here. Our sweet boy is becoming a man. Body changes, emotions, and such are all present on the daily. And he’s TALL. Nearly 5’ 7” and FOURTEEN! Explaining these changes and helping him understand social appropriateness as it relates to these changes is quite a challenge. He’s working hard in therapy to master basic self care skills like showering, skin/hair care, brushing teeth, etc. It’s so crazy to me that he should be a Freshman in high school. His spirit and interests remain on a low developmental level. But I could care less! If he wants to watch Charlie Brown and Toy Story forever…..Do you buddy! Be happy!

We had an uptick of seizures. Those are HARD! And I hate them with all I have. Especially when they occur in difficult places to manage and keep him safe. Like Townsend’s baseball game. But, currently…..they are controlled by medication. Growth in his body means adjustment in meds. This is just our reality.

Cannon’s body is not giving up on aspirating. All logic would think that putting in a feeding tube and only feeding into the intestines versus the stomach would mean that his food couldn’t travel THAT FAR backwards and end up in his lungs. But aspirating is his unfortunate superpower. And he still averages a rate of about 40-50% of fat from his food in his lungs…..even with the tube. We, with current medical treatments, cannot seem to stop the free fluid reflux…. so our goals now are protecting his esophagus and lungs from the long term effects of reflux and aspiration. So far so good. But who knows how long that can last. Over 7 years, that we are sure of, this has been a struggle. We will keep watching and praying. And hoping that science will catch up to Cannon and provide us a good solution.

Cannon’s Chait Button and Cecostomy Tube are still in place and still functioning. But sometimes only kind of. He requires more stimulation (medication) going through that tube daily that I have ever heard of (and he’s only 14). And double what we were told should ever be given for this condition. But his body won’t respond and clean out his colon without it. Lately, he’s been less successful with this process. This causes him a lot of pain, leaking from the Chait site, pain, distention, a constant, gurgling sounding tummy, and constipation. The latter being the very thing this tube should combat. It’s like his Gastroparesis (partial paralysis of the stomach) just keeps going on down his digestive track and can flare….just like his stomach can… times.

Chronic pain is no joke! I’ve said it before and will say it probably always. And man would I give up anything to take it away for my sweet boy. Finding him laying on the stairs because he hurts too bad to get up, watching him have a full on meltdown that I know is caused by his done-ness with hurting, and the begging, pleading looks he can give me. That I have no answer or recourse for. UGHHHHHH!!!!!!!!! They are awful! BUT…..I will say that we are trying a new medicine…..a Chinese root that does seem to be taking the edge off for him so far. And for that, we are so very grateful. Earlier this year, things were far more dire than they are now.

A lesion appeared a year ago around the GJ Feeding Tube. There has been a theory or 2 but the main thought is that it was a dissolvable suture from the initial surgery that didn’t dissolve. Every 3 months since….the surgeon has dug around in there…..attempting to locate the pesky suture. But to no avail. It seems this will continue as it just keeps coming back every time she removes the lesion.

A few months back, Cannon got a few weird rashes on his tummy and simultaneously began behaving EXTREMELY for a couple of MONTHS. We tried multiple creams and medications and therapeutic interventions. Not knowing if one was because of the other. We have been here before. Many times actually. These guessing games can drive us a bit crazy. Autism and the constraints of decreased expressive language don’t help either. And in these times we are asking ourselves “Is he behaving this way because he’s so done hurting or does he have another bacterial overgrowth or a Gastroparesis flare or is this just your run of the mill Autism meltdown????” We mostly just have to go with our gut and treat him using our best judgement. But it can be so darn frustrating to not be sure if we are doing the right thing or even treating the right thing. I just want to know that we are helping and not hurting him!! For sure!

One of the most major changes is that not only does Cannon have seizures at night……but a few months ago, he began sleepwalking and talking. Which might seem funny…..and it can be. He will say the most off the wall things.

Like one night while completely asleep… supporting every ounce of his weight while assisting him to use the restroom…….He yelled out “We the people!”

He will walk into furniture (if not stopped) or open a drawer that he thinks is the toilet seat and attempt to pee in it. Problem is…..he is attached to an IV pole that is plugged in to charge at night. So, I have to have cat like reflexes and leap from the bed and out cold sleep at any moment if he starts to get up. Because pulling his tubes out would be a disaster. This has progressed over time and turned into his getting out of bed but then losing all faculties and coordination and just crumbling to the floor. Incontinence has also become a part of our nights. I have tried all I could to avoid it but I have had to resort to a bedside urinal and waking him every 1 1/2 hours to use the restroom (but not in the restroom…Sigh). Medical bed pads are on order from our med supply company to assist with accidents. I really wasn’t expecting this part and it has become quite a challenge to manage with our well hydrated child. Bizarre episodes aren’t uncommon.

Such as one night when I woke him to relieve himself. I was holding him in a standing position with my left arm and holding the urinal with my right. He latched onto the urinal with his left hand in a way that I can only describe as “rigor mortis hand.” Super stiff with a death grip. I was stuck. I couldn’t move my left arm as he was completely asleep and would collapse. My right hand was stuck holding a very full urinal. I tried to swat his left hand by flicking my wrist but he was just too latched on. We were stuck. I was yelling into his ear to wake up and let go…..but nothing. I had to just wait for his grip to eventually release. It finally happened after about 5 minutes. Just so so crazy!

We have an inpatient Sleep Study on the books soon to try to see what is going on and what is occurring in his brain when this is happening.

Cannon’s version of Homeschool has had quite a makeover since my last post. I was finally able to find a complete, classical, special needs curriculum that really speaks to his strengths and has the right balance of challenging material. I’m so thrilled! We also have gone to a staggered start since the start of COVID and it has been life changing. Townsend starts and finishes around the time of traditional schools and when his year is complete…..Cannon begins. I get no break but it gives each kiddo more time with just me. 1 on 1. For about one third of their school year. Which is so helpful with 2 EXTREMELY different and literature laden curriculums. And Mom’s exhausted brain and voice. He is thriving! But he does get very worn out and tired……taking naps at various times throughout the day.

On a personal level…….I must admit I became more AND less capable when the feeding tube went in our Cannon almost 3 years ago. More capable than I ever imagined to deal with lack of sleep, medical procedures, and to balance marriage, homeschool, meals, laundry, sports, etc. During COVID, I even added in therapist as I was flash certified to do some 37 hours a week of Cannon’s Habilitation and Attendant Care. Since we couldn’t have other therapists in our home to minimize risk. It has been an incredible blessing…..and tiring. But we are so thankful! I became far less capable to do things like carry on an intelligent conversation, text about a complex issue ( I can’t edit and/or summarize thoughts…..I need to ramble my way through everything in my head), and as is apparent… I just don’t have the capacity. AND I WANT TO. I so desire the outlet. But I have had to accept my shortcomings and not only give myself grace but know my limits. There are too many 1/2 written posts in my blog’s dashboard to count. All I can tell you is exhaustion changes you. (I want to stop a moment and beg you to understand that I don’t share this to receive pity…..only to explain myself. I’m ok….I promise. Just forgive me…..ok?) I always tell Mark and the boys….if I say something totally ridiculous, walk into something, or ask the same question multiple times…..just tell me I’m pretty, smart, etc. LOL!

And then there’s these complicated thoughts I have every once in a while. Some that are even a bit embarrassing to admit. And you may not understand. But in the spirit of transparency…..I will share. I often see commercials on TV for various medical conditions. And I have this weird, fleeting jealousy. I know! I’m a nut job. But bear with me. Cannon was given his first diagnoses as well as hospitalized over a decade ago. And we still don’t have a definitive diagnosis. We have so many random and associated diagnoses that I have to keep a note on my phone so that I don’t forget one whenever I have to fill out paperwork or see a new doctor. But we still don’t have a root cause OR know if they will ever stop piling up. Sometimes I, just for a moment, long for the simplicity of a one word diagnosis. A diagnosis that comes with a treatment plan. A definite direction with which to go. It would be so nice to just know what we are dealing with. The only thing that the docs can come up with is “medically complex.” When we meet someone new…’s just so hard to explain or sum up Cannon. Impossible really. Please don’t judge. These are VERY fleeting thoughts…..complex in nature…..but I never allow them for more than a few moments. I am “all in” in terms of taking my thoughts captive as a means of self preservation and staying positive.

Above all….God has been so faithful. I have NEVER NOT been able to do what I needed to. I have always been able to find another gear, level,……whatever. And that is sooooo NOT me! Phillipians 4:13 y’all! (“I can do ALL things through Christ who strengthens me.”) I have learned to laugh at the absurdly crazy occurrences in our house and focus on the positive in EVERYTHING. Because EVERYTHING will make you stronger…..if you just let it. Boy, has my life taught me this. My prayer for you, friends, is that you let the trials and struggles in your own lives make you BETTER…..not bitter. That you LEAN into HIS strength through prayer, worship, and scripture. Blindly TRUST and KNOW! Because HE is there and at work. Even when you aren’t so sure. You will later.

People often ask me, “How do you do it?” I am no person to be put on ANY pedestals but I will share a couple of things that I have learned lately and I pray they will be helpful……

Here’s a “trick” that was born out of a time of true brokenness in my heart. Cannon was an absolute wreck earlier this year and I remember calling my parents crying and saying that I just needed to find a focal point. Have you ever been doing a hard workout and the instructor tells you to find a point on the wall and keep your eyes on it? It helps to steady you so you won’t fall, break form, or quit. For me, when I’m going through something hard, I need the very same thing. I need to spend time with the Lord…..worshipping, studying, and praying. During that time, I came to focus on the story of Peter walking on the water with Jesus. And how every time that he took his eyes off Jesus….he began to fall. But when he kept his eyes on HIM…..he was steady, confident, and taking part in a miracle. “Keep your eyes on me.” In our situation, I often feel like I need to be trying to figure out what’s next. But I think God’s been teaching me that He wants me to be still and relinquish some of that control and just keep locking eyes with my Savior.

One last thing…….Another focus of mine in the last year or so has been to pray intentionally for others. Townsend made me a large, wooden cross for Christmas and I hung it on a wall in our closet. Every person I’m praying has got their own Post It note with details as to their prayer needs. They get updated as things progress. I crave to be useful. This is how I feel I can help as well as keep my focus off my problems and on those I love. Try it! It will help you remain diligent! And please……tell me……How can we can pray for you?! Message me, text me, email…..whatever! Pretty please!

Prayer Requests:

-The feeding tube appears to have a slow leak and will be re-checked on Wednesday. We are so hopeful that this is not the case and we can avoid an extra procedure.
-Cannon’s November procedures will include an MRI of his brain to determine if the choroid plexus cyst found last year has grown at all. Please pray it hasn’t or better yet….that it’s GONE!
-That his aspiration will not cause long term deterioration in his esophagus and lungs.
-The Sleep Study will be helpful and enlightening.
-No seizures!!!
-COVID would stay out of our house. Cannon’s risk factors are too great.
-A definitive diagnosis…..once and for all. God please.

There’s our “at long last,” messy, jumbled up update. We Love You All!!!!

Here’s What We Learned……

Cannon’s recent procedure results were a bit all over the place. Let me fill you in…..

To even have them done, we had to venture out of quarantine and take him for a COVID test 3 days before. He was NOT a fan of the basically “brain tickling” test. His actual comment during was so sweet and so pathetic at the same time. He sobbed to me and the two nurses with enormous, crocodile tears saying…… “This is a Cannon-mergency!”

June 8th…..we masked up and headed back to town for a full day or procedures.

(Side note……I’m soooo ready for this virus to be over so that Mark can be with us again on procedure days. Because these procedures are such a normal occurrence for us…..we have a great flow and system worked out for how we get through these days. This dang Coronavirus has definitely upset that. We make it work but I’m still not a fan! You can go AWAY NOW COVID!)

Anyways……on this particular day, an Endoscopy, Colonoscopy, biopsies, and labs were on tap with his G.I. doctor. A Bronchoscopy with his Pulmonologist. An MRI with seizure protocol (with and without contrast) as well as additional labs (to check on the effects of seizure medication on his liver) ordered by his Neurologist. I also requested that he get the COVID Antibody Test.

The day really went off fine so I won’t bore you too much with those details. Just clue you in on the results…….

First, the “better-ish news”……..

His colon.…It was still extremely hypervascular and the vessels distended…..and the biopsies showed irritation…….but it was better enough to take him off the evil medicine he was put on after the last set of procedures. It was SEVERELY constipating!! And because he has a tube that we flush daily with A TON of medicine to force his waste out of him…..this was a terrible combination. A sensory nightmare really! I called Mark from recovery and triumphantly told him to throw that med in the trash!

His lungs…..were a little less inflamed and nodular. However, he still coughed under anesthesia…..which is still a sign of massive inflammation in the body. In addition, the rate of lipid (fat from his food) in his lungs fell from 50% to 30%. It seems to go up and down with no rhyme or reason. But today…..we are thankful.

Now, for the not so good part…..

His stomach…… biopsies showed borderline gastritis. Inflammation in the lining of the stomach…..that he doesn’t even use! Boo!

His esophagus.….the lower third was far, FAR worse…..blood red and super inflammed….Absolutely heartbreaking to view in photos. The only explanation…..Cannon has a superpower. But unfortunately….It is refluxing. My child is now on 210 mg per day of reflux medication. NO…..I am not kidding!!!

Labs.….We DID find out his liver is doing okay thus far. BUT, 10 of the 14 orders vaporized…. as well as the tremendous amount of blood drawn to fulfill those orders. New ones were drawn this past week. No results yet. We lodged a complaint with the hospital. Hopefully, they will learn from this extremely unfortunate mistake!

MRI.….There was nothing new to report from a structural perspective. But we were very sad to learn that a Choroid Plexus Cyst was found in his brain. We were quickly told that he could have this his whole life and never have an issue. But, if he did……it would cause tremendous, debilitating pressure in his body and he’d need brain surgery and a shunt. As it would inhibit the circulation of cerebrospinal fluid throughout the body. Knowing Cannon……and his ridiculous ability to defy doctors who say things like “it shouldn’t be a problem”……. it’s hard to discount. We will not dwell on it…..but be extremely vigilant in watching for early onset symptoms.

Neurology..….Seizures continue to come with frequency and in clusters during the night. Medication has been increased for the 3rd time…..and a 4 day inpatient EEG has been ordered….. We plan to press pause on scheduling this for about a month in hopes that the virus will calm down before we put him in the hospital.

G.I..…His doc is currently deciding if he will give a pain medication……Cannon’s pain is so difficult to control. When at its worst…..he is either pitifully curled up on the floor…… or lashing out at us in a fit of anger. He just gets SO DONE WITH HURTING! But pain meds slow down the G.I. tract and are not ideal to give a child. So, we are still waiting on his decision there.

That’s it. You are up to date.

The usual mixed bag of gut punches and glimmers of hope.

I always need time to digest and process new findings. And take the time to think clearly about how those symptoms will translate into behaviors, feelings, and emotions in our uniquely designed boy. How I can help him cope. And how we can head off issues and stifle any symptoms. For example, one thing we do every day is monitor his heart rate. (I tried to get him to wear a fitness tracker to keep it easiest but he just couldn’t handle it sensory wise.) So, I have an oximeter that I throw on his finger every couple of hours or so (or when I just suspect there’s a problem) throughout the day. Without hard core pain meds, the over the counter meds can only do so much. We have discovered that when his heart rate starts climbing and gets into a particular range….there goes his pain. If we can medicate him when he gets in this range….we can catch it before it becomes more than the over the counter stuff can handle. Should he just tell us his pain is building?….Sure! Have we worked on that for years?….Gosh yes! Do I ask him often? And even more so on the rare occasion that he actually presents behaviors that are consistent with pain (posturing, etc.)? Absolutely! But this just hasn’t been reliable….so we use the oximeter and science to tell. And it works ok.

One thing IS for certain……life with this kiddo will NEVER be boring or mundane. It is constantly changing and sure keeps us on our toes. And as usual, we will continue to focus on loving him and trying to make his life as stimulating, comfortable, and joyful as possible. Soaking up the sweet snuggles he still so steadily initiates, his hilarious one-liners, as well as moments of triumph and breakthrough in our therapy and homeschool. I often feel like I sound like a broken record. “The joy of the Lord is our strength” being a constant theme of our journey with precious Cannon. But recently, on one day in particular, I was listening to an especially captivating sermon discussing our legacies in this life. And encouraging us to not just be believers OF God but to be Christ FOLLOWERS. Putting that faith into action. The service was followed by this amazing piece of music. In that moment, I felt like God spoke to my heart that this was the enemy’s way of trying to gain a foothold in my life. Not to let it happen and to continue to focus on my joy. It’s there. It’s real. And it is life sustaining!!!!

You need to hear it. Press play. PLEASE! It’s seriously what my heart wants to tell the world. And if the joy I chose to have in spite of our circumstances is all you remember about me when I’m gone…..I will be absolutely THRILLED with that! THRILLED! I love you ALL! (Now, please press play!)

It’s About Darn Time For An Update……

My weary brain will forever beg your forgiveness. My existence resides somewhere between particularly and completely exhausted most days. This does not bode well for coherent thoughts put to paper….or blogged for that matter. Here is my grossly overdue update…….

There have been so very many times in our sweet Cannon’s Autism and medical journey that I thought things would get better.

When our intelligent, talkative Cannon regressed into his own rigid, nonverbal world at age 2……we thought… much as we were petrified of hearing the words…..that if we could just get a diagnosis……we could amass a plan and get the appropriate help. To get Cannon better. He was young. Recovery was possible.

When his digestive issues began….we assumed that if we could just figure out what was wrong…..we could fix it.

When his body refused to respond to every potential treatment and we were in and out of the hospital for 2+ years….we were told that if we got the Chait Button and Cecostomy tube implanted in our 5 year old’s abdomen…..he would get better. No more hospitalizations for his colon issues. We could administer the medication ourselves… home daily. I remember a specific conversation with a wonderful doctor in a hospital hallway. I said with confidence, “I can’t wait to JUST deal with Autism.”

When Gastroparesis (partial paralysis of the stomach) set in a year later…..we thought…..if we could just get him to the specialists in Ohio…..they will figure out what to do. They tried. Insight was gained. But…..better? No.

And then we discovered he was aspirating at an unconscionable level….A level nobody we’ve met had seen before. This was a different issue so the incredible amount of treatment would have to work for this…..RIGHT??!! Oh how I wish!

So, we conceded defeat against this child’s body once again. And put in the Gastro-Jejunal feeding tube. This would remove the possibility that his food would go the wrong way and end up in his lungs. It HAD to. Yet….read on.

Better is just not happening. Not yet at least. And can no longer be my WHOLE focus anymore. We have not lost hope by any means but choose to live life in a different mindset these days. To make each day the most comfortable, happy, and stimulating that we can. More on that in the near future.

To add insult to injury…….”out of the clear blue sky”….in December….the seizures came. And they came and they came. Sleep and even rest became intermittent at best. Another new normal to adjust to. Those “we can’t catch a break” thoughts were definitely trying to permeate.

As I stated in my last blog post, we had known (thanks to several EEG’s) for a decade that he had abnormality in his brain that could lead to seizures. But all this time, he had been seizure free. Which gave us that hope that he may never. Our neurologist had warned us a couple of years ago that puberty could potentially initiate seizure activity. And unfortunately this has come to pass. The next step was to put him inpatient for a 24 hour EEG. It was not an easy process at all. Being on the Autism spectrum compounds everything and every situation. The measuring, marking, gluing, taping, and binding of a bunch of electrodes to one’s head AND then have to stay in bed for 24 hours….not touching them…..was certainly not so simple a task for our severely sensory kiddo. But he really did so incredibly well considering. We had hoped that the abnormality seen years ago would be unchanged and in the same lone lobe of his brain. But sadly, this wasn’t so. He now has abnormality everywhere. All over. Front to back and left to right. They call it “multi-focal” and “bilateral.” With the most active regions being frontal, central, and temporal. My next question was if because they believe that puberty got this going…..does that mean that in a couple of years….we could be out of the woods. No. I’m told his Autism takes this off the table. So, they are here to stay. For life. We had also only seen seizure activity at night so we were hopeful that that was what they would see on the EEG. But they saw abnormality day and night. So, what does this all mean? It means that there is potential for bigger seizures and more damage to his brain from those seizures….as more parts of the brain are affected. This has been tough to take and also there has been quite a learning curve over the last few months. Like what different types of seizures look like (because we have to record all of them….big and small). I got recertified in CPR (He could stop breathing during or after one). He doesn’t sleep alone right now. Maybe someday. (PLEASE….I beg you….Don’t judge. He can…and has…..thrown up during a seizure which he can then aspirate. His lungs are weak from his already diagnosed Chronic Aspiration. If I couldn’t get to him quick enough to roll him to his side……It’s just too risky in our opinion). He has a video monitor in his room but y’all…..seizures aren’t loud. Roxy could potentially be seizure trained but things have to get more consistent first.

In early April, I had an appointment with our neurologist. The seizures just wouldn’t stop in the nighttime. We were getting to the point when there were about 3-5 nights per week. And some were cluster seizures. I had kept a log and upon explanation of every last seizure, he gave us the bad news. It was time for seizure medication. Something we had hoped to avoid. As once you start with these types of medications, you begin to potentially affect organ function. And in the long run…..this can shorten a life span. My heart was a bit ravaged that day. But what had to be…..had to be. His body was SCREAMING for help. And I will say….it is working. Since beginning the medication about 5 weeks ago, there has been ONE major night of seizures. It was an hour long cluster seizure and it was ZERO fun…..but otherwise….the medication seems to be working. The main side effect to this med is liver issues. And he already had elevated liver enzymes. SO, we will be checking on that quite regularly. His type of seizures only had 2 potential meds and the other can cause violent rages. An issue he has struggled with in the past. Our doctor chose to try this one first.

In early March, Cannon went in for his usual every few month procedures. His last check was in late September and was so good…..we waited a bit longer to check again. In true Cannon fashion, he flipped a switch and had one of his worst updates ever. His colon.….was extremely inflammed, friable (acutely prone to bleeding), and another detail I will spare you that was just too gross and unexpected. The report on his esophagus (which should be glowing as he no longer uses it for eating or drinking)….It too was also inflammed, friable, and covered in nodules. His doc… who I feel like I can read pretty well after a decade of working with him……wouldn’t talk about it or make eye contact afterwards. He said that we would only discuss those nodules once the pathology report came back. So, we sweated out about a week…..wondering if we were going to add cancer to our list. But it came back as basically a sign of severe inflammation. (squamous mucosa with patchy increase of interepithelial lymphocytes and spongiosis for my medical friends). And as for his lungs….inflammed, nodular, and the kicker……They were 50% full of lipid!!! Fat from his food. Food which isn’t even fed into his stomach but his intestines. In an attempt to put more distance in place and give less likelihood that it could back flow. But THAT much is going THAT FAR in the wrong direction. Insert exasperated, head in hand emoji. In response, we doubled up on meds that were already said to be far, far more than someone his age should be on. She also, in a taken aback sort of fashion, told us that he had coughed under anesthesia several times. This should not be possible. When questioned as to her take on this development….she just said that it must just show us how incredibly inflammed his entire body was.

Now, that you are up to date……Tomorrow, we go in for another barrage of procedures. He will have an Endoscopy, Colonoscopy, biopsies, and labs with his G.I. doctor. A Bronchoscopy with his Pulmonologist. A bunch of labs courtesy of his Neurologist (to check his liver). And while still under, he will get an MRI with Epilepsy Protocol with and without contrast. Which in case you were wondering is “a group of MRI sequences put together to improve sensitivity and specificity in identifying possible structural abnormalities that underlie seizure disorders.” We have an appointment in a couple of weeks to discuss the results of the latter. We would GREATLY appreciate any extra prayer time you might have for our angel.

I HATE his pain y’all! And seizures! I HATE IT ALL. When he struggles to sleep because the pain is so bad and the first thing he tells me in the morning is how much his stomach hurts…..My heart ACHES. I abhor watching his body lurch and writhe…..not knowing if THIS will be the seizure to cause damage to his brain. I take notes and take notes…..trying to find the missing piece. That will, one day, I pray…. help a doctor put all of these crazy pieces together and give him a definitive diagnosis instead of the 15….yes 15….he currently has! I’m tired of finding him passed out on the floor in random rooms of the house because of incredible nausea. All I do ACTUALLY know for FACT is that I can’t camp out in these moments. If I wanted to…..I could put down roots and reside in this constant state of helplessness. It would be oh so easy. But it would help NOTHING. All I can do is advocate to the hills, research my heart out, love and empathize with him with absolutely every fiber of my being, and pray with every ounce of my very soul. That’s IT! I’m powerless to all else. And you know what….there IS power in that! Because my God is ABLE! I shared recently on my Facebook page of a passage in 2 Chronicles 20. Of this incredible King of Judah and his belief and devotion to God as he went into battle. And when God responded he said, “Don’t be afraid or discouraged because the battle isn’t yours. It belongs to God! You don’t need to fight this battle. Just take your places, stand firm, and watch how the Lord, who is with you will deliver you.” I will believe until I breathe my last. Because I have felt it. The buoyancy, the peace amongst chaos, and the comfort that my cries are heard. My weapon…..the source of my stubborn faith… the presence of God in my life. I need only grant HIM access. Please friends! Just let go! Let HIM into your life and let HIM fill you with this INCREDIBLE peace! No matter what you might be facing or going through. You have nothing to lose and EVERYTHING to gain! We love you! God Bless!!!

Last Saturday Night…….

I’m not sure why I never posted this back in December but better late than never, right?  Here goes….my raw account of one of our worst nights…..

Last Saturday night was a normal night. Nothing was really out of the ordinary. We had spent a couple of hours that morning at Cannon’s Special Olympics basketball practice. He was more tired than usual so we had let him dictate the pace and he chose to be very low key. When we got home, he played and relaxed. Around 6 pm, he was out cold on the couch (which is his normal as we’ve been struggling with fatigue since June). The rest of us were watching a movie. Mark got ready and left for work. At about 9 pm, Cannon sat up rather quickly and said he had to use the restroom. I told him to go on up and do so. as well as to get ready for bed. That I would compound his meds and be up in a few minutes. I sat there on the couch for about 5 God-ordained minutes (I will explain). I was really fighting sleepiness and just couldn’t move yet. But I eventually got myself up, got the meds, tubes, and flushes ready. Headed upstairs. All the while, saying to Townsend to spot me 5 minutes and then head up to pray and do our advent devotionals together. When I got to Cannon’s room, he was asleep on his bed with his backpack and feeding tube pump laying next to him. I needed to disconnect the tube momentarily and transfer the pump from the backpack to the I.V. poll it hangs on at night. When I clamped the feeding tube and turned the pump off…..all of a sudden his body began seizing. I couldn’t believe it! For the first 20-30 seconds…..I was trying to figure out…..”What did I just do?” I’m not a nurse. Did I do something wrong and cause this?” No, I quickly was confident……this wasn’t me. This was just happening. I didn’t have my phone on me and the nearest one was on the opposite end of the upstairs floor. I screamed for Townsend. “Call 911 RIGHT NOW. Tell them they need to get here quick. Cannon is having a seizure.” I heard panic from him initially. He was looking for my phone but eventually grabbed the house phone. He called and gave them info like a pro. He was my hero that night! Completely and totally. He was calm….even though I know he was so scared. This was not a position I would ever want to put a 10 year old in. It’s so much pressure. But I could not leave Cannon! I could hear Townsend’s sweet voice shaking. He wanted so badly to come up to me but I told him not to come upstairs. I did NOT want the image of what I was being forced to witness burned in his memory. He obeyed. (Thank God for that extra 5 minutes I spent downstairs….otherwise Townsend would have been in the room when it happened.). Cannon went through about 2 1/2 minutes of hard core convulsions….with his eyes rolled back in his head. He threw up a little at some point and I rolled him immediately to his side. For about 7-8 minutes, his eyes were completely fixed. He looked dead in this phase and it was so freaky. But I could tell he was breathing so there was comfort in that. Then, he was looking around…..very confused and groggy for about 5-7 minutes. And finally, he began to try and talk.  But, his speech was extremely slurred for about 30 minutes. The paramedic response time wasn’t ideal in my opinion. They arrived when he had begun talking. His biggest concerns by the way……1) No hospital! 2) Can I still go to church tomorrow? My angel boy! The paramedics did a full work up complete with a blood sugar test. He had no fever, blood sugar issue, high or low BP…..nothing to show what had caused the seizure.

A little background quick. Cannon was diagnosed with Autism 10 years ago this month. His first ever EEG was done at that time and abnormality was found in his brain. We were told then that he would either develop epilepsy at some point or this finding was just a result of the funky firings of the Autistic brain. He never had a seizure until last Saturday night. Some might remember that when our now 10 year old, Townsend, was 2…..he had 2 Gran Mal seizures in the same day. And then sporadic Petite Mal seizures for a few years. Upon testing, he was found to have the exact same brain abnormality. A Focal Seizure Disorder with abnormal electrical activity in the Parietal Lobe. He hasn’t had any episodes in several years though. Thank The Lord!

Back to Saturday night…..My hero, Townsend, called Mark and he rushed home from work. Talked to my mom and got her up to speed. Just stepped up like crazy! Oh man! Did he make his momma proud! If you see him…..please tell him he’s a hero! We then headed to the hospital for a long night in the ER. We were quickly told that he would be admitted. With this being his first episode and his complicated medical history…..they wanted to be thorough. We appreciated that. He specifically mentioned wanting a CT scan and a new EEG. To see if anything had changed from his last one. They said they would just start some of the testing while we were waiting to be admitted. Bloodwork, an EKG, and a chest & abdominal x-ray were done. Around 5 a.m., their tune changed and it was decided by the ER docs and an on-call neurologist we don’t know that we would head home and follow up with our neurologist. I can’t say I was thrilled with this idea. We were there….sleep deprived (which they like you to be for an EEG)…..and could just get it done. We knew an appointment would not happen immediately and insurance approval for an EEG can take a bit when done outpatient. But the decision was made and we had to accept it and take our weary selves home. Oh and when I say weary selves…..I am referring to Mark and I. Cannon was wide awake. Never got the least bit tired.

When we got home and tried to go to sleep…..he still wasn’t tired. Our kiddo who’s been so fatigued. He didn’t end up finally falling asleep until 10:15 A.M.!!! And only slept 2 hours! Townsend always slept so much after a seizure. Not Cannon! No sir! Always different….that one!

So, here’s where we are today. MANY phone calls, texts, and emails had to go out to all his doctors, coordinators, therapists, and support staff. We had to cancel “attendant care.” Only nurses from now on! He can’t sleep alone in his room right now. Even though we have a high quality video monitor……seizures aren’t loud. And unless he throws up and/or aspirates….if we are asleep…..we may not hear. Appointments have been made, rescue medication ordered, and a refresher of CPR nailed down for Mark and I.

We had been warned that puberty could bring on seizures. We aren’t sure if this was the cause but we’d also been told that once they started….this would probably be our new normal.

I admit to struggle this week. I about had a panic attack in church on Christmas Eve. He fell asleep in my lap and I just thought for sure…..he was going to have a seizure right there. Or anytime he sleeps. Right now, I am literally watching him sleep. It’s hard to un-see what I saw his precious body go through. It’s so difficult to not be a ridiculous helicopter of a mom right now. Every time he is tired…..I am watching like a hawk. I do know it will get better. Even if they do become regular…..we will find a groove of sorts. We have several friends with kiddos with seizures to lean on. And for that we are so thankful.

This is what happened last Saturday night as best as I can remember.  Thank you Lord for being with us!  Thank you FATHER!!!!!  For protecting my angel’s brain from damage, for orchestrating the minutes so that I would be there and he wasn’t alone.  To aspirate.  He just can’t aspirate.  His weak lungs….he just can’t.  And for giving Townsend strength and courage beyond his years.  Our only hope going forward is to stay rooted in what we know to be true and real!  We will…..even when it’s hard!

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… 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… 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… 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… 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… 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… 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… 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… 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… 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…’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… 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…’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!