Ok…..it’s time to get back to some fun stuff!  No more hospital talk!  Enjoy this post about an adventure we embarked on during a trip in August!  

We did something recently that you might think was a little crazy! We took Cannon parasailing! Ok, so, let me explain! I used to volunteer a week out of each summer to a camp for kids with cancer called Camp Happy Days and Special Times. During that week of amazing fun, one of the activities that the kids could choose to do is to go parasailing. And there is this one company, Tidal Wave Watersports, that comes each year to take the kiddos up. The children can participate as long as they are at least 4 years old (with parental consent, of course). So, I had seen this done and knew that a young child could be taken up safely and also could truly enjoy it. A friend of mine from that camp (Love You Melissa!) had an idea after Cannon enjoyed surfing and horseback riding so much. “Why don’t we call “Captain Mike” (his camp nickname) and see if he’ll take him up?” Well, we did and he said “sure!” So, the next day we drove to the Isle of Palms Marina on Isle of Palms, South Carolina for our special day!
Cannon had been a mess all morning! He was terribly over stimulated, bouncing off of anything he could find, stimming, scripting, and was very very emotional. We questioned over and over whether we should take him. What if it’s his tummy and we push him too hard? But, what if he is craving sensory stimulation and we don’t? We decided that since we had made the reservation, we would go and see if things would change when we got there.
When we arrived, I walked down the dock to check us in. We were a little early and I wanted Cannon to chill in the car as long as possible. That didn’t last long. Mark was getting him out as I walked back down the dock. Cannon was screaming, yelling, and kept trying to run into the marsh to “go swimming.” We tried pointlessly to explain to him what we were going to do and that we had to wait just a few more minutes. We tried tickling him, telling him his favorite joke, along with playing chase and hide and go seek. Nothing was working and we were really getting worried because there were going to be 4 other random people on the boat with us and we did not want to ruin their experience. Thankfully, soon after, the staff came and got us and we were able to wisk Cannon down the dock, into a life jacket, and onto the boat before he could protest too much. He had a sour look on his face when we greeted our new friend “Captain Mike” and his assistant, Ryan. The other 4 passengers were visiting from New York and boarded next. I was so excited as we set off! I just knew he was going to love it!
Ryan gave us some brief instructions, pumped us up for the experience, and then worked to get us all in harnesses during this time so we would be ready to go when our turns came up. We had started out in the “no wake zone” and Cannon was not impressed. He whined a bit and voiced his displeasure. BUT….as soon as we got out into the open water and started A) going really fast and B) going over a bunch of waves going really fast…..he was in HEAVEN! He laughed like crazy and squealed with delight! Another passenger was hanging on for dear life and turning green but Cannon loved every second! When we slowed down to let the first couple of people go up, Cannon laid his head in my lap. At this point, we didn’t know if he was tired or seasick. And he wouldn’t tell us or respond in any way. He had gone to bed later than he normally does the night before and was, as usual, up early that morning. So we were hoping he was just sleepy. And it was hot. So, we knew it could be a combo of the two. The first two parasailers, a couple of guys, went up to 600 feet. It was so fun to watch their faces and see how much fun they were having. I couldn’t wait for it to be our turn! There were 2 other people to go next, though and I was questioning whether going last was the right idea because Cannon was looking sleepier and sleepier. We were out in the open ocean at this point so it wasn’t choppy. Smooth sailing! It was also HOT! And he was just laying in my lap. The women’s turn came and they parasailed off the back of the boat all the way up to 800 feet! They said it was so peaceful and beautiful from up there!
FINALLY, IT WAS OUR TURN! Yippee! Mark and I put on our life jackets and since we already had on the harnesses……we were ready to go! The team changed out the equipment to allow for us to go 3 at a time. We walked to the back of the boat and they began buckling us in. Mark and I were on either side and Cannon was strapped into the middle. I kept saying to Mark……”Are we really doing this??!! Taking our 4 year old 600 feet above the ocean??!!” Cannon was still kind of droopy but had perked up a little bit from the moving around. We were then asked to sit down and did so. IT WAS TIME! Slowly and smoothly the boat began to move and our bodies eased off the back of the boat and into the air. A HUGE smile broke across Cannon’s face and he laughed out loud! “Thank goodness,” I thought to myself! He just loved the ascent to 600 feet! Mark and I talked and talked to him about all the things we could see from where we were and all the feelings we were having. Cannon just grinned and laughed! When we got to 600 feet though, it was very quiet. The previous passengers were so right. It was crazy quiet up there! So peaceful! And we were up there for almost 10 minutes. We saw beautiful blue ocean, white puffy clouds, shrimp boats, gorgeous landscapes, and the best part……a bunch of dolphins swimming and leaping into the air. Breathtaking to say the least! In fact, it was so relaxing up there……CANNON FELL ASLEEP! I kid you not! I couldn’t believe it! Sailing in the air at 600 feet above the Atlantic Ocean! We tickled him a little to wake him up and began singing some of his favorite songs. “The Alphabet Song”, “Take Me Out To The Ballgame”, etc….. When our time was up, we were slowly pulled in. He perked up again….laughing and enjoying the experience. But one last fun thing was left! The Dip! We knew that Cannon would like it so before we left the boat, we had told “Captain Mike” to do it. As we got super close to the boat, instead of pulling us directly in……we were dipped in the water from the waist down! Cannon LOVED it! He cracked up! Seeing that…… “Captain Mike” decided to do it again. So, we were dipped one last time! Cannon laughed and said over and over “toes in the water.” Then, the Tidal Wave guys pulled us back into the boat! Cannon was so thrilled! We had a blast on our parasailing adventure! On our way back in to the marina, Cannon got to enjoy more choppy water, more dolphins jumping, and he even got to drive the boat for a bit! Captain Mike and his team gave us a wonderful gift and we are so very grateful!

Please check out Tidal Wave Watersports for all your parasailing, wakeboarding, tubing, water skiing, jet skiing, and charter boat needs when in the area of Isle of Palms, SC. They do a fabulous job! And have huge hearts! Like I mentioned before, they donate an entire week’s worth of time, equipment, staff, and gas money every summer to Camp Happy Days and give those kids with cancer a great time! They are just good people!

Tidal Wave Watersports
Isle of Palms Marina
69 41st Avenue
Isle of Palms, SC 29451
(843) 886-8456 (IOP)

(843) 768-3482 (Charleston)

THANK YOU TIDAL WAVE WATERSPORTS!!!!! You guys rock!

Today began wonderfully! Wanna know why?! Because Cannon and I got about as good of a night’s sleep as is possible in a hospital. I neglected to mention yesterday that right before shift change last night……Cannon got his N.G. tube pulled out of his nose.  That went a long way towards helping him feel a bit more human again.  And helping him sleep.  I, then, conspired with his nurse and tech to let him fall asleep before we bugged him.  Let me explain.  Cannon sleeps like a rock usually for the first few hours and this is especially true when you consider how little sleep he’s had over the past few days. And the nurse and tech had a bunch of required stats and such to get done…..which he hates and therefore screams about.   So, we let him fall asleep and then we sprung into action.  The nurse gave him his scheduled dose of Valium through his I.V. (something he would usually scream about due to how close she has to get to him), she listened to his chest and belly (again… a “no-no” with the touching), his tech got vitals (another potential scream fest), and put the pulse ox on his toe (the absolute devil in his world).  When all that was accomplished, the nurse and tech’s bases were covered mostly for the night and they had permission to leave us alone.  They could just check the pulse ox’s monitor as needed to get the vitals they needed, when they needed them.  I think one blood pressure was done later but that was it.  After all this was done, I roused him up just enough to give him his night time meds.  3 syringes and 2 pills later……we was quickly back to Dream Land.  And we were patting ourselves on the back for coming up with a great plan of attack.  From then on out, it was nothing but zzzzz’s and I was thrilled.  He even slept over 1 1/2 hours later than his usual!  It was fantastic!

When we woke up, he looked so much better.  His coloring was still a little off, his eyes were still squinty (something he does when he doesn’t fell well), and he was CLINGY……but he looked SO MUCH BETTER!  The thing that was evident immediately is that he had much more to say today.  And with functional speech, no less. He told me he wanted milk, he wanted something to eat, he wanted a video, and which video he wanted.  He even asked me “Where’s my Daddy?”  I LOVE the week after a clean out.  It’s amazing the difference in him.  I am not saying he is normal but you can just see these amazing glimmers of potential.  Before the collapse back to reality a week later.  When his tummy begins its transition back to blah!  I HATE that part!  It is the worst!  If you are just joining us on this journey and hadn’t read some of my much earlier posts, you may not know.  From what we have been told, Cannon’s tummy issues are a fact of his life…..not something that can be fixed.  G.I. issues are a problem that can accompany Autism and in his case, he got one of the more extreme cases of these G.I. issues.  We have tested him to death for any and everything, we have tried everything possible with diet and medication, and even contemplated surgery.  But as our world-renowned G.I. doc says, “He will just have to have these clean outs periodically.  There is nothing more that can be done.”  And we have no choice but to accept that for now.  But, as I mentioned on Wednesday, we are just incredibly grateful that we made it 5 months since his last hospitalization for this issue.

So, Cannon and I did all those things he asked for, called Mark and Townsend to say “hi,” and put on our shoes to take a walk.  We walked the loop around our hall of the hospital and then headed for the playroom.  By the time we got there, he crawled in my lap to rest.  His color was weird and he didn’t look good.  He got down to play for a few minutes and then crawled in the lap of a volunteer.  Much to her surprise.  My punkin is such a lover, it surprises people sometimes.  🙂  Then he gagged a couple of times.  The Child Life Specialist that I was talking to gasped!  My heart skipped a beat!  I did a super  fast scan of the room for something to grab that he could hurl in.  I couldn’t believe he was going to puke on this poor girl.  But he didn’t!  He swallowed very hard a few times, made a few sour faces, and came back over to me for more snuggles.  Thank goodness!  I asked him if he wanted to go back to the room and he said no.  I asked him if his tummy was okay or ouchy.  He said ouchy.  And got down.  I figured this was the beginning of the residual effects of the medicine.  Ten minutes of so later, though, he was singing some songs and playing like nothing was wrong.  This kid is so crazy!  He always keeps us guessing!  🙂

I had multiple talks with our Resident doc today.  We discussed things like when was a good time to discharge Cannon, was our G.I. doc going to round, when could we pull his I.V., could we go home with pain medicine just incase he began to react, could we have a standing x-ray order written for the Radiology Department (for next time), and would we be trying anything new.  All our questions were answered throughout the day by either him, the Attending doc, and/or our G.I. doc.  Cannon was doing well by mid-day, surprisingly enough,……so it was decided that his I.V. could be pulled.   No need to keep hanging onto it incase he had a meltdown and needed Valium.  We had to remind Cannon constantly while she was unwrapping his heavily taped I.V……that this was a good thing.  We were taking it off.  The hardest part of this process is not the actual pulling of the needle.  It is coping with the bandage applied afterwards.  Those darn sensory issues at work again!  So, I tried just holding the gauze myself and applying pressure.  But the needle used was big and it needed to be pressurized for about 10 minutes.  This was not a hit with my child and he fought to get free and blood splattered.  So, he got a bandaid instead and I held him as still as possible until it could be pulled off.  Then finally, he got to take a shower!   And boy, did he need it!  After a good scrubbing, diaper change, rub down with lotion, and fresh clean clothes……He was a new man!  And he looked like he felt even better, too.  Now our mission was to hang around a couple extra hours to see our G.I. doc.  He is desperately hard to get a hold of and when the hospital called his office to get us a follow up appointment……they couldn’t get us one until December.  So, we were so grateful he came by to check on Cannon.  He decided we are going to try one new med.  To see if it will help with the issue he has of getting too much air in his intestines.  And we are going to try an extra teaspoon of his prebiotic powder to help with the same issue.  I am grateful for any new ideas.  They won’t help with the overall picture, but if they work, could improve his day to day wellness somewhat.  We discussed several other details of his treatment and ended our stay on a good note.

I am beyond ecstatic that after 6 hospitalizations for this issue……this week’s began what I hope is a new era.  One where he doesn’t react to the Go Lytely after he finishes his treatment.  I mentioned yesterday how horrible the 2 days after have been every other time.  I mean excruciatingly bad!  And today…..pretty much nothing!  It is a huge load off our shoulders and we are so thankful he doesn’t have to go through all that cramping and pain.  There is no rhyme or reason as to why it didn’t happen. But I don’t need a reason…..I am just glad!  Tonight he crawled into his bed and said with a smile on his face, “Cannon is home.”  Melts your heart, doesn’t it?!   Sure melted mine!  Then he said, “Cannon has a nice, cozy bed.”  Yes, you do buddy!  Yes, you do!  And now Mommy is going to go enjoy hers!  God bless ya’ll!

Ok….so here is the latest!  As you know if you read yesterday’s post, Cannon’s tummy was not clear after the 2nd gallon of Go Lytely solution.  Which meant he had to endure a whole other gallon of the stuff!  Let me put this in perspective for you.  An adult takes 1/2 – 1 gallon of the same solution to cleanse their colon and prep for a colonoscopy.  And it takes 3 gallons to do the same job in my 4 year old!  Pretty much stinks, right?!

Anyways….he began with the 3rd gallon around 1:15 a.m. and finished it around 1 p.m.  The portable x-ray machine was sent up, an x-ray was taken, and 2 very anxious parents had to sit and wait for 3 more hours to get results.  We were sooooo nervous!!!!!!  We could not bear the thought of a 4th gallon or worse.  But thank goodness, we finally got some good news this evening!  The resident came in and informed us that there is a teeny amount still left but they feel like they got the important part of this.  WHAT A RELIEF!  His little “posterior region” is fire engine red right now from all the diapers and I am so so very grateful we don’t have to put it through so many more.  Let the healing begin!  🙂

We were then clear to draw labs.  With all the craziness just pumped into his body, they had to make sure there was balance.  Sodium, potassium, electrolytes…..all important levels to check on.  The resident came back in later and told us the labs were perfect and that we are moving in a positive direction.  Thank goodness!

We are not “out of the woods” yet.  As some of the doctors here well know, the next couple of days are almost as bad as the last couple.  The medicine that cleansed his body also rips his stomach to shreds after the fact.  It causes just terrible pain and cramping.  And for someone with sensory issues, whose every sensation is heightened to the extreme, it is so so much worse.  In fact, every previous hospitalization for this issue, we have had the same problem.  He virtually screams at the top of his lungs for the next 2 days, even when given medicine to help.  He doesn’t want to be touched, doesn’t want anything (even a seatbelt) to touch his tummy, and doesn’t want any help with anything.  It is frustrating!  So, a couple of visits ago, we began staying an extra day to help manage that pain.  We will do the same this time, I am told.  And after the initial tough days, usually the next week is sheer bliss!  Like perfection!  He talks more in that week than he will in the next few months, he cooperates incredibly at school and in therapy, and he really listens so so well!  But the sad fact that has come to be the norm is that after one week, his stomach starts bothering him again, the progress fades, and the vicious cycle begins again.

We will see what happens this go round!  Now, my exhausted self is going to cram into bed with little man.  Still gotta keep him from pulling out that I.V.  🙂  Good Night blog family!

When I signed off early this morning, hope was in the air. We were hopeful that the first gallon of medicine had taken and that Cannon would be able to stop the cleanse as soon as those beautiful, clean x-rays were read. Well, unfortunately that did not happen. The x-rays came back and were better but still not good. His problem area in his colon was still there but had moved down significantly since his baseline x-ray. For those of you who know and understand anatomy, the issue originated in his ascending colon and had now moved to his sigmoid colon. A nice move….but still not gone out of his body.  So, that meant we had to begin the second gallon of Go Lytely. Aaaaaa! I was so sad for him! We had so prayed  it wouldn’t come to this… this time. He was supposedly only half as impacted as he usually is.  But, what could we do, we had to accept it and keep going. So, the entire rest of the day was spent dispensing the 2nd gallon and dealing with the “consequences.” And those “consequences” take a lot out of mostly Cannon, but us, too. His bed has to be completely stripped and remade every few diaper changes and we change our clothes frequently, too.  Also, the mess from the “consequences” is indescribable (I am sure you are grateful for that fact.) and he’s begun to get very red and irritated “down there.” Which means he screams and fights every time we change him. My poor buddy! In between changes, though, he has been much more complacent and cooperative than yesterday. As long as no doctor or nurse is bothering him, he was fine for the most part. We spent the day mostly watching videos, playing with the iPad, reading books, and playing with a small Buzz Lightyear toy Townsend found in the playroom and brought for his brother.

There was one fun surprise, though. Three students for the college here knocked on our door and asked if they could come in and play some music for Cannon. We said “sure!”   One guy played his violin, one girl sang, and the other girl played her flute. Songs from the movie “The Lion King.” The boys both really enjoyed the distraction and we cannot express how much these moments brighten our day!

Cannon finished gallon two around 9 p.m. and another x-ray was taken around 10. I was so certain we were done after how far the first gallon moved everything. We just had to be, right?! But, unfortunately, the last little bit inside my baby does not want to make its exit. So, we had to begin a 3rd gallon of Go Lytely solution around 1 a.m.. I was a bit devastated by this. Our day began so filled with hope. We had even started talking about when we would go home. I just hate that he will have to go through so much more! It really does break my heart!

I had a conversation today with the Attending Doctor. She has taken care of him many times before, knows him well, listens to me,  and is overall…..quite wonderful. We were discussing how a Resident had told me earlier in the day that one thing was protocol and I knew that it was something we never do with Cannon. She said that he is the “anti-protocol.”  They treat no other patients in this hospital for this issue……the way they do Cannon. They never use anesthesia to put in an N.G. tube. They never use Valium in scheduled doses throughout a clean out like they do Cannon. They always draw labs in between each gallon. But they don’t do that with Cannon unless they absolutely have to.  They never keep a patient as long after and/or send one home with Valium to address pain management.  His sensory issues change the game completely!  These issues come along with Autism and are so consuming, burdensome, and misunderstood.  My prayer is that over time, I can shed some light on this topic and improve understanding.   I am so thankful that my child is being treated in a hospital where they consider him…..the individual.  Not him……the standard procedure patient.

In conclusion, I want to share a song with you that I have been hanging onto for a while.  Waiting for the right moment.  We have been singing it during worship at our church off and on for some time and I have loved it so much I had to email our Worship Leader for its info.  I would say that I am very thoughtful in my worship.   I really try to focus on the words that are coming out of my mouth.  Not anything else.  The first time I heard this song, we had taken Cannon home from the hospital the day before.  I was spent, emotionally and physically.  I was up to my ears in new diets to try, meds to administer, and research to read up on.  But mostly, I was blown away with love and thankfulness to my Lord for his provision for my family.  So when I got into church and heard these lyrics, I almost couldn’t breathe.  (And every time I have heard it since…..I still feel the same way.)  They were exactly what my heart wanted to say to my Father in heaven but didn’t have the creative talent to put together.  The song talks of the foundation established when you give your heart to God and how it allows you not to be shaken in times of trouble.  Boy, is that true in our situation!  We hate what our son has to go through all the time but we are so thankful for the confidence and strength that God allows us to have every single day.  The chorus is what really gets me.  It says……”You are my shield, my strength, my portion…..deliverer.  My shelter, strong tower.  My very present help in time of need.”  I mean…..seriously??!!  Can it be said better than that??!!  It is the kind of praise my God deserves and now gets constantly thanks to my love for this song.  I sing it all the time!  Be blessed!

Friends……we have received so much love and thoughtfulness over the last few days! Emails, voice mails, hospital visits…….Thank You!  We are blessed beyond measure to have each one of you in our lives!  I know I say it all the time but I do not take gratitude lightly.  So thank you for your prayers and love!  It means the world to us!  God bless!

http://www.youtube.com/watch?v=lc9kjeAZWbU