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…..it’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…..at 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…..me 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…..blog. 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…..it’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!
-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.
-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!!!!