I am so sorry I have made all our faithful followers wait to hear the final results of our trip to Nationwide Children’s Hospital in Ohio. Exhaustion had gotten the better of me. Every time I have sat down to type the last couple of days…..I have fallen asleep. Forgive me.   Here we go….

Friday morning at 9 a.m., we met with the Chief of the Pediatric Motility Center, the Fellow we had been working with, as well as the Pediatric Psychologist that is the Clinical Lead for the G.I. Clinic. They had a computer set up so that we could visibly see the results of the Manometry tests they had completed, diagrams on the wall to help us understand as they explained their way through this, as well as other documentation from our visit.  And most importantly, they gave us plenty of their time (an answer to prayer)!  The Doctor began with some good news. Cannon does NOT have Gastroparesis as was previously thought. The tests done disproved this with 99.something or other degree of certainty. We don’t know what caused the scope back in May to look the way it did.  The one that started all of this.  But it is virtually and definitively not so.  This is wonderful. Gastroparesis is a life long, debilitating condition that we wanted no part of. That was the good news. Then, they placed this diagram in front of us……

……..explaining that each of issues within the circles have to work together to have a positively functioning G.I. system. Through the testing that was done…..Cannon’s problem appears to be with his nerve endings and has led to issues with his Nervous System. The Manometry test done on his colon made this plain as day. I wish I could explain the uber specifics of the tests but I will most assuredly butcher it. I will sum it up by saying that they measured the contractions and compared them to that of a normal person. They determined that Cannon’s contractions of his colon are normal…..perfectly normal. But we, ourselves, witnessed his reaction to those normal contractions and it was awful. He was screaming, fighting, and posturing like crazy. It was hard to watch and get him through. So, what this tells us is that his nerve endings are giving his brain faulty information and causing the eruptions that we see every day. His organs are so incredibly sensitive that they cannot cope with even what is normal.  For almost 5 years now, we have known that Cannon has a Sensory Processing Disorder.  And when he was diagnosed with that disorder, I remember the Physical Therapist telling us that this affected all areas of his life.  But I NEVER thought it would go this far.  It truly breaks my heart.  My poor sweet boy.  He just has so many things making it so desperately hard to reside in his little body.  This information gives us so much insight into why he acts the way he does about digestion and so much more.  Sensory issues are quite hard to explain and I am not sure I have done a good job.  Feel free to ask questions if you have them.  I guess the best summation I can think of is this…….Cannon’s body is so very sensitive that even normal bodily functions and sensations cause great pain.  Sigh.  But now we know……and have to figure out ways to help him.

(On a side note, you may remember that Cannon ripped out one of the tubes that was to be used to do the same sort of Manometry test on his stomach.  Therefore, that test could not be done.  The doctor feels confident that Cannon’s gastric emptying study eliminates the possibility of Gastroparesis and that the findings in his colon will translate to his stomach contractions as well.)

And  now, here it is.  Our all new, comprehensive plan for Cannon……..

1)  The doctor believes that the formula we are using for the daily flushes of the Chait Button in his abdomen is flawed. We use a combo of sterile saline and an agitant (liquid glycerin). This irritates his colon enough to get it moving. When he first got the button 3 years ago, we tried to just use saline but it wasn’t strong enough to do the job. We had to add in the glycerin. And keep adding and adding and adding. Now, we use 50 ml’s of glycerin to 80 of saline. The doc feels it needs to be more like 10-20 of glycerin to 200-300 of saline. He feels like too much agitant could be contributing to his intense nausea and that adding so much more saline will soften things and do the same thing as Miralax and another drug he takes for the same purpose.

2) Another idea the doc had was to remove 2 out of the 3 doses of reflux medication that Cannon was taking daily.  We had described to him how horrible his breath can be at times.  I don’t just mean your run of the mill bad breath.  I mean…..it smells like the very strongest of chemicals.  It can have a “light your nose on fire” type of effect.  He believes that by suppressing too much acid was probably allowing more bacteria to grow.  Something like that.

3)  Cannon was already on an antibiotic but has been for 1 1/2 years.  So, we are going to change it up and do something a little different.  He would like us to fill prescriptions for 3 separate antibiotics and use one on one week…..another the next week……and then the 3rd the following week.  And just keep rotating that way.

4)  He feels we should stop 2 drugs altogether …..one was for reflux and the other helped with hydration in his stool.  He doesn’t think he really needs them.  But he would like to add a med for nausea.

5)  We are dropping some of his diet restrictions.  Not jumping to processed foods or anything…..but he has had to eliminate all kinds of fruits, vegetables, and more due to the bacteria issue.  This doc feels that this is no longer necessary.  We will keep things very organic and continue to eliminate dairy, gluten, and artificials.  But loosen up a bit.  We have to keep the mindset however that his body is incredibly sensitive.  If he can’t handle normal bodily contractions and functions without pain and because it is so darn sensitive…….we have to be wary of all ingredients contained in anything he eats.  That part is nothing new and I am fine with it.

6)  Finally, he wants us to speak with our Developmental Pediatrician about anxiety meds that are successful within the ASD  (Autism Spectrum Disorder) community and that are more time released.  Years ago…..prior to putting him on a med for ADHD…..his Psychiatrist tried him on several drugs for anxiety.  All were horrendous failures and made things so much worse.  The Psychologist we met with in Ohio quizzed me about which ones were tried and commented that those were all “fast acting.”  He feels that those types of meds may have shocked his sensitive little system and done more harm than good.  We agreed.  He feels that the implementation of a “slower acting” or more time released med could help Cannon so much with his response to the pain he feels.  Particularly when he has the urge to be sick.  He says that because he is in pain so very often…..that throwing up during this time has become a “learned behavior.”  Not something Cannon wants to do or makes himself do but something his body has just learned. “Oh, ouch…..that hurts!  I throw up now.”

That was all probably WAY too much info and I will apologize for that.  Sorry y’all.  But, we have had so many of you ask for specifics and also have so many friends in the medical field now that I figured being vague wan’t an option.  As you can see…..the doc had a lot of ideas.  And that is EXACTLY why we wanted to go to Ohio.  We felt like over the last 5 years, medicines and restrictions have continued to pile up and not much was ever eliminated or changed.  We absolutely hated that and felt like we were beating our heads against a wall.  We needed “fresh eyes” and a totally new perspective.  And we feel that is exactly what we got.  Now, we have a plan in place that we are happy with.  One that addresses all the issues…..his flushes, reflux, nausea, bacterial overgrowth, diet, and anxiety.  This will not happen quickly.  He will still feel very similar to when we left for Ohio for a while.

If we don’t do this slowly…..we won’t know what is working and what isn’t.  We are starting with adjusting his flushes.  Hoping to find the right balance between what doesn’t overstimulate his colon and cause it extra pain……but not so little that we can’t get it moving at all or cleansed completely.  And we are in the process of dropping the 2 drugs I mentioned.  The Ohio doc’s recommendations are going out to 4 of Cannon’s docs in AZ this week hopefully via a letter.  I will then have to make appointments and/or speak with them all to get things implemented and prescribed.  Hopefully, with a slow but steady pace…..we can get all recommendations in place as quickly as possible.  So, that’s the plan friends!  And we are so prayerful and hopeful that doing these things will make a difference and help life in that precious little body for our incredibly sweet boy much, much more bearable.  One friend said to me that she was so sorry we had gotten the misdiagnosis of Gastroparesis. But you know what?  I’m not.  It’s unfortunate but not terrible.  If it hadn’t happened, we wouldn’t have ended up in Ohio.  If we hadn’t gone to Ohio, we wouldn’t have this totally new plan. This new plan with the fresh perspective we’ve been craving for years.  The Manometry tests that were performed there are not done many places and gave us the specific data to know once and for all what is really going on.  Every difficult test and procedure was necessary information.  In short, this trip was part of God’s plan for Cannon.  We are so confident in that!  We are thankful for it!  We got the HOPE we were looking for!

One last thing…..I’ve said it before and I will say it again……y’all are awesome!  The absolute outpouring of love and support for Cannon and our family has been so positively overwhelming!  The prayers have seriously kept us buoyant and strong as well as full of faith and hope.  AND THEY WORKED!  We are just so incredibly blessed!  We have had donations via a couple of sweet friends doing fundraisers through their respective businesses.  AND from strangers and even one anonymous friend!  Seriously!  How could one be more blessed?!  I just don’t know!  We do not have the words.  Plus, we have had so many precious gifts given to our family.  Thoughtful, heartfelt gifts that have provided us with things like hot chocolate on frigid days (Starbucks gift cards),  fully bellies (snacks galore in the hospital), warmth (handmade blankets for our boys),  distractions (toys, books, games, and entertainment), discounts (on meals and more), and tokens of support and love (a wall hanging made by a new, creative friend in honor of our “year of hope”).   Until I can get around to each and every one of you…..please accept this faulty, mass, cyber thank you for all that y’all have done to support, encourage, bless, and love on us during this time!  It will never be forgotten!  God bless you ALL!

Lastly, Cannon has something he’d like to say……..

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“Every time I think of you, I thank God for you.”  Phillipians 1:3

Hello there precious blog family!

Let me start tonight’s update with a huge THANK YOU! I know I keep saying it but I will just never be able to say it enough! I seriously cannot keep up right now and what a blessing it is to have this “problem!” Between texts, emails, FB comments and messages, letters, cards, the most thoughtful and helpful gifts, calls, and such…..we have been so inundated! Some even by perfect strangers!  To say you have blessed our socks off is such an incredible understatement! Please forgive us for our tardiness in proper thank you’s and just know that our cup is seriously running over! We feel the love and WE ARE SO GRATEFUL!

That being said……I will tell you about today. This morning at 9 a.m., we arrived at the hospital for Cannon’s final test of the visit. The Gastric Emptying Study. We were a bit worried he might get sick as he looked really weak and nauseous. So, we decided not to perform his flush today after calling to speak with a nurse. We wanted so badly for this test to be successful and didn’t want to open the floodgates so to speak. As he gets sick during his flush lately about 60-70% of the time.  Upon arrival, Cannon had to eat a meal that contained radioactive material.  They prefer that he eat 2 scrambled eggs and 2 pieces of toast with jam…..as well as to drink a small bottle of water in a 15 minute time period.  Cannon absolutely hates scrambled eggs.  They make him gag.  But we were able to motivate him by reminding him that this would help the doctor better understand why his tummy hurts.  He was able to eat 1 egg and one piece of gluten free toast with jam and drink 2/3 of the bottle of water.  It wasn’t perfect but it was far better than what he had been able to get down in the 2 previous tests.  He immediately had to jump up on the table…..lying still for several minutes to have the first of 3 nuclear scans.  Afterwards, we were free to roam about for a while and come back in 2 hours for the next scan.  Our home hospital does more frequent scans during their Gastric Emptying Studies but I guess there is variability between hospitals.  We decided to hang out in the Columbus Blue Jackets Family Resource Center while we waited.  It is an awesome area of the hospital donated by their NHL hockey team.  Cannon enjoyed playing in a play area there while we relaxed in a living area and went over our questions for the doctor afterwards.  2 hours came and went……and we returned for the 2nd scan.  He was a bit wiggly on this one but all was okay….the tech said.  This time, we roamed a bit.  We went down to the Emergency Area where there is a cool aquarium, visited the gift shop, observed a lot of the unique decor this hospital has to offer, and ultimately ended up in the Chapel.  We spent some time there just praying together and it was quite precious.  My nerves were creeping in and I wanted to squash them!  We prayed for many things……the doctor, the tech performing the procedure, the potential infection site, accurate results, and that there would be resolution at the end of all this.  We placed this journey in God’s mighty hands and now we wait.  We are in a holding pattern.

We had been told to go to the G.I. Clinic 30 minutes after the final test was complete……to get all the results and the doc’s recommendations.    I was nervous about this as I wondered if it gave him enough time to properly review everything.   Also,  he has been so busy and just popping in and out…..never truly finishing a thought or conversation.  I thought if we just arrived whenever…. without a scheduled appointment……we would definitely get the same him.  After sitting in the clinic for a little bit, one of his nurses came out and told us that the doc wanted more time to review his results.  Could we come back tomorrow at 9 a.m.?  I was so thankful.  All I had prayed for the night before and day of was to have some good time with him and for him to be focused and prepared for us.  We were so thankful!  So, we came back to RMHC for the night and will head back to the hospital in the morning.  Who am I kidding?  Today.  Sorry y’all…..I fell asleep trying to write this post last night.  

Specific prayer requests for today…..

1) A good block of time with the doctor today.  No matter the results…..we have a few important questions and we need time to properly go through them.

2) Continued prayers for the doctor to have real empathy towards Cannon.  To truly take his time, consider all of his diagnoses, and come up with a comprehensive plan of attack to make his life not just better but much healthier.

3) If he feels that more testing is required…..that we will be able to change plane tickets, adjust Mark’s work schedule, and that my parents can spare the time.

4) There is no sign yet of infection from the mishap in surgery.  We pray that continues.  It could take up to a week to show up.

Thank you again for everything our beloved friends.  I am so very hopeful that the next time I am updating y’all……it will be with tons of new, clear ideas and solutions to the issues that plague our sweet Cannon.      GOD BLESS Y’ALL!

Today was a drama filled one….to say the least.

We were taken down to a surgery waiting area early this morning to talk with and sign consent forms for both Interventional Radiology and Anesthesia. I felt ok about each meeting afterwards but wasn’t too sure they were taking me totally seriously about a couple of things. We were urging Anesthesia to give Cannon something on the tail end of the procedure to help him come out of it slowly and easily. The alternative can be a quick, agitated, and combative response were he is extremely upset and can possibly hurt himself or others. Our home hospital does this every time without issue. But apparently this didn’t happen today. The other thing we begged was that as soon as they took Cannon from Surgery to Recovery and BEFORE he began to wake up…..to come get us. It allows us to get his movie set up, along with all the things that make him comfortable and to be there to help hold him if things get bad. I mean, what 8 year old wants to wake up from surgery and see a bunch of strangers? You want your mom and dad or it’s scary! Especially with Autism. Well, this didn’t happen either. I was told it was hospital procedure that no one comes back to see the patient before they wake. I get it. It just know that it could have helped the situation and it stinks.

So, today he was having all the Manometry tests (Antroduodenal, Colonic, and Anal). He was having 3 sets of catheters inserted in these various places that would be left inside to measure contractions of these areas. The first would go down his throat, past the stomach, into the top of his small intestines…..I believe. The 2nd would cause his Chait Button to need to be removed and 2 tubes to go in in it’s place. The 3rd would go “where the sun don’t shine” and do its measurements there. The 1st and last were placed successfully.

I want to press “pause” for a moment and thank all who prayed for Cannon to get anesthesia FIRST today…..before his I.V. This DID happen and was actually done beautifully and with lightning speed. It could not have gone better. While waiting for anesthesia to get set up, Cannon began to “script” about a favorite topic…..Charlie Brown and the Peanuts characters. The Child Life Specialist heard this and produced a Peanuts coloring book for him to flip through. And some other guy in the procedure whipped out his cell phone and pulled up a Peanuts episode somehow! He loved it and was totally distracted when it came time to put him under. I sat on the table with Cannon in my lap, holding his arms. An anesthesiologist came in behind me and put the mask over his face. It was so quick and he fought so little. He just watched Charlie Brown on the phone and I even heard him say something about Sally calling Linus her “Sweet Baboo” through the mask. Silly boy! We were off to a great start!

We had been told that the procedure would take about 30 minutes before he would head to Recovery. But after an hour and some change, I was starting to wonder what was up. Then, someone came out of the OR and got us. We had been told a nurse would come out of a different door and take us to a totally different area when all was said and done. So, I was alarmed from the start. Also, the doc usually comes into the Waiting Area and tells you how it went before the nurse comes. But no doctor….just the nurse who came from the OR and took us to a small room with just a table and a couple of chairs and asked us to wait there for the doctor. I cannot tell you how quickly my heart began to race. I just put my head down and began praying with all my might. Eventually, the Interventional Radiologist came and started explaining a few things. The NJ tube and anal tube had gone in well and they had already performed the manometry test they needed on the lower part of his body. But, there was a problem with the placement of the colonic catheter. They successfully removed his Chait Button from his abdomen and replaced it with a slightly larger tube than the Chait in this pathway. This tube contained the catheter. He was also asked to place a much smaller tube next to that one and in the same pathway. This tube would allow those performing the test to administer food directly to his colon and move the test along. When he placed the first tube, he noted it was a tight squeeze. When he went to place the second tube, it was really tight but he continued anyway. He struggled to get it in and at one point decided to inject contrast to see if it was getting where it was supposed to. Once he did that, he can watch a screen that shows him Cannon’s insides and see where the contrast went. Well, the contrast didn’t go where it was supposed to which led him to believe that the second tube nicked or perforated the Chait’s pathway and it had gone in there. He said he wasn’t 100% positive that was what happened but he is very suspicious. So, Cannon could develop an infection. We have to start watching for those signs and get him on meds immediately if that happens. The IR doc would have preferred to begin them immediately as a precaution but the Head of G.I. has decided to hold off and wait for signs of infection. I felt so bad for the IR doc. He was visibly upset about this. He noted that he does this procedure so often and this very, very rarely happens. I am not upset. Things happen. It stinks but of all the things that they could have taken us to that little room for…….I think I will take this over some of the alternatives. Gotta keep it positive and keep moving forward.

We went back to the Waiting Area and waited for the nurse to come take us to Cannon. When she did, he was already awake. Grrrrr! I was not exactly happy. And sure enough…..he came out of it wildly. No med was given by anesthesia for easy waking and we weren’t there to hold him. AND he pulled the NJ tube out of his nose immediately. I will say I was upset about this one. When you advocate and advocate and advocate and tell people that these are the kinds of things that happen…..it’s really frustrating when it is disregarded! We came here to find out about his stomach. And this tube was the one that would have provided that info. And he was now awake from anesthesia. You cannot have anesthesia twice in one day. This particular tube has to be placed under anesthesia. It was a done deal. No test for that part of his body. I almost had to leave the room for a minute and cry. But I couldn’t….Cannon needed me. And didn’t need to see me upset. The G.I. doctor came in later and said that we will wait for the result of the test tomorrow. If it shows a problem with his stomach, he will consider keeping us here longer to re-do that part of the test.

We continued with the Colonic Manometry test for several hours. They were injecting sterile water through the catheters to measure the contractions and his body’s responses. During this time, we had to fill out some paperwork from the Psychiatrist that is apart of the Motility Team. He came in for a bit and spoke with us for a few minutes but was called away and never returned. I was disappointed that we couldn’t chat with him more. There were 3 nurses in the room with us for most of the day and they just fell in love with our angel. They doted over him…..talking and playing with him as much as possible to help keep him comfortable. One of the nurses even went out and brought him a snowball to play with. He had fun feeling how cold it was and touching Daddy’s face with his cold hand. When he said he wanted to build a snowman….she went out and got a cupful of snow. Then, the nurses began searching the room for “buttons (some red caps)”, “a hat (a medicine cup)”, and “arms (a tongue depressor broken in half.” It was precious! They were too sweet. One nurse, also, let Cannon squirt Daddy with a syringe of water. He loved that! I am so thankful for how incredible these precious women were with our sweet boy.

After the test was complete, we had to go back to surgery to remove the catheters and re-place his Chait Button. But, as I mentioned yesterday…..we hoped to have them REPLACE the Chait so we didn’t have to put him through another procedure when we returned home. (This button has to be replaced every 9-12 months and he is due for that change.) Since he could not have more anesthesia, this was going to be a bear. We had never even entertained the thought of attempting this back home with nothing. I immediately hit up my Facebook friends with an urgent prayer request and prayed under my breath like crazy. When I saw that there were only going to be 3 other people present, I admit I really worried. My husband was our rock today, though. Confident that Cannon could do it and that this was the safest and quickest way to get it done. I leaned on that and trusted his leadership. Sure enough…..CANNON DID IT! Our sweet boy did it! He got through the difficult removal of the crazy, long catheter (like this thing was SERIOUSLY LONG) and placement of a shiny new Chait Button like a CHAMP! He fought minimally and was so insanely brave! I was just staring at him in total awe! This was the power of prayer at work people! There is no other explanation! I watched God work in that OR today! My child is never that calm! To those who prayed……THANK YOU SO MUCH! You truly made a huge difference in my baby’s life today!  I just cannot express my gratitude enough!

I gotta wrap this up! In short, we were unexpectedly discharged after a little while in his room. We are back at the Ronald McDonald House for the night. Head back to Nationwide in the a.m. for the final test. The dreaded Gastric Emptying study. He will have to eat a meal that contains scrambled eggs with radioactive material in them. He will then have a series of x-rays at various time intervals there after to watch them proceed through his body. To see how long it takes, if it gets hung up in a particular area for too long, etc. It will go from about 9 – 1:30 tomorrow. Afterwards, we will head over to the clinic and meet with the doctor for ALL the test results and recommendations.

Specific prayer requests for tomorrow…..

1) A complete, clear, accurate, and definitive result on the Gastric Emptying test. This will be our 3rd and we need this one to be a good one. The first couldn’t be completed because he kept throwing up. (He can’t take his reflux medicine the morning of and that day…..his body couldn’t recover.) The second, we feel was dumbed down too much. His doc was so concerned with just getting the test completed that he put him on clear liquids for 2 days prior. So, he virtually had nothing in his system and the meal passed right through. We want to know how his body reacts to FOOD. Because we want him to be able to eat FOOD all the time from here on out. He has eaten 2 meals and a snack since coming off clears earlier today. We hope this is enough to get an accurate picture. And that he will not throw up at all before or during the procedure!

2) It is midnight and Cannon is still awake. Something is bothering him. I am praying he is not developing an infection from the mishap in the OR this morning.  Prayers for no infection would be so great!

3) Please pray that the test results will show WHY Cannon is hurting. We cannot go home with nothing. We have waited too long and come too far.  Please pray that no matter what they show…..that this doc will have compassion for him and try to come up with solutions to give him a better quality of life. The Psychiatrist today asked us why we were here. My response was that all we have done for the last 5 years is watch Cannon suffer and deteriorate. We seek a better life for him. One that is relatively pain free, where he can eat food, and be a happy, healthy little boy.  That is it….plain and simple.  This is the big one!  The biggest prayer request of them all.  This meeting with this doc…..tomorrow……has the potential to change the course of Cannon’s life for the better……finally!  Our knees are raw over this one.  We need this.  Cannon needs this.

Good night friends! If you have read this far…..you are a saint. Thank you for praying us through today’s drama. Hope will lead us on!

This is going to be a bit short and sweet.  For me.  I am so tired and not even sure if this is saving as the internet here has been spotty.

We arrived at Nationwide this morning for our 8 a.m. check-in.  All went well getting paperwork done and finding our way up to our room.  We set these next to his bed to remind him how strong he is.

Orders for his Go Lytely solution were already in upon arrival.  The first praise of the day was that I WAS able to get the docs to agree to put the solution through the Chait Button in his abdomen.  NO NG TUBE!  Such a relief!  Upon sharing some background info with our nurse…..she decided to go ask the docs if we were able to keep him drinking consistently…..did he really NEED an I.V.?  They agreed to hold off as long as he drank and kept it down!  AND HE DID!  This was huge!  And another fantastic answer to prayer!  The Fellow (who is an Attending in his own right…..just doing a rotation in Motility) came in to go over Cannon’s history.  Mark and I had gone through all my notes from the last year the previous night and had a really good timeline down as well as a good list of current symptoms.  I felt so very good after talking with the Fellow.  He was a great listener and really seemed to get Cannon and be so very caring.   All the while, the solution was running, running, running through my boy.  And no “results” were being produced.  It took several hours before he even produced one diaper’s worth.  And then his Chait Button began leaking at an alarming rate.  So, they disconnected him from the Go Lytely and gave him a break for a bit.  Eventually deciding we should do a cleanse with the medication we do for at home, daily clean outs on top of what they had already done…… but with their equipment.  So, the nurse got everything ready and ran that through his Chait as well.  But because it was going through an I.V. bag, tubing, and pump…..It took much longer.  About 10 minutes when it normally takes us less than one to put it in via catheter syringes.  The “results” began and remained fairly constant for a while.  When they seemed to be done…..we took a walk around the floor and ended up in the playroom.

We had been there about 5 minutes, when he had some more “results” and we had to return to his room.  A sweet volunteer stopped by right after we got him cleaned up and offered to play a game with him.  He played a sweet Daniel Tiger game with her and was talking back to her well.

The art cart stopped over and left some paint and a wooden whale carving to paint.  He enjoyed this and then went to sleep.

There were some decent downs to this day.  From sun up to sun down, Cannon was incredibly, incredibly anxious.  I am not sure a minute went by all day that he wasn’t begging us to take him home or back to the RMHC.  He cried “rescue me”, “save me”, “help me please mommy.”  All the things that break my heart and are accompanied by sad, sad eyes and crocodile tears.  I felt like we were just getting him through this minute without completely losing it….. and then the next….. and the next.  It was a marathon…..today was.  And then there was our initial meeting with a very important doc.  After speaking with the Fellow, I was so encouraged.  This place is going to really go to bat for him.  Really pool all their resources and get this thing figured out once and for all.  After 5 long years…..we are going to put this pain and lethargy to bed.  BUT……let’s just say I was caught quite off guard by the next doc we came into contact with.  I would prefer not to get into it.  I was so stunned and dumbfounded by him…..his questions…..his take on what might be going on with Cannon.  Completely dumbfounded.  And so, so disappointed.  We have waited almost a year and looked so forward to meeting HIM.   At one point during the conversation, I even feared he might pull the plug on the whole thing.  It was…..I don’t know……Just not even in the ballpark of my expectations.  I am trying, in my heart, to just chalk this up to poor beside manner.  It really wasn’t that but I am trying to tell myself that so I can remain positive.  It is time to trust and let God work.  Let the results of the tests speak for themselves……and then go from there.

Tomorrow morning at 8 a.m. the fun really begins.  They will take him down to Interventional Radiology and put him to sleep.   He will have several catheters placed in his colon and stomach.  These catheters will stay in for most of the day and they will measure and give data based on their contractions.  They are looking to see if there is a weak link, if his stomach is working together well or not at all.  Tomorrow evening, as he is going to sleep……they will place another catheter…..let’s just say “where the sun don’t shine” and measure those contractions.  All this information, per my understanding,  will confirm or deny his Gastroparesis diagnosis and/or show if there is nerve damage.  And they say this will be uncomfortable and he will have to tolerate it.  Wanna hear a 3rd praise of the day?!  Cannon’s Chait Button has to be removed tomorrow to place one of the catheters.  And I jokingly…..but not really jokingly…..mentioned that they could just replace (that’s “replace” not “re-place”) it when they went to put it back in.  It has to be replaced yearly and he is due for it in the next month or so.  They think that they CAN!  This would save Cannon from having to go through another surgery when we get home!  And us the drama of figuring out where to do it and which doctor to do it back home.  You may remember if you’ve been following our journey that this surgery was botched last year and had to be re-done later.  We do not want a repeat performance and are so grateful that they just might do it here. Where this procedure is done VERY regularly!

Specific Prayer Requests of the Day……

1) That they will agree to NOT put the I.V. in first in the morning.  That anesthesia will put him under and THEN they will place the I.V.  This saves him so much anxiety, fear, and discomfort.

2)  That he can tolerate the discomfort of the contracting catheters and that the results will be accurate and clear.

3) That they WILL replace his Chait Button tomorrow when they remove the catheters.

4) That the doctor’s heart will soften towards Cannon and that he will use every ounce of his ability to figure out what is causing his pain and lethargy.

That’s all for tonight folks!  I’m wiped!  I sure hope this posts!  WE LOVE YOU ALL!!!!  YOU BLESS US BEYOND MY CAPACITY FOR WORDS WITH ALL THE SUPPORT!

Hi beloved friends and family! I will spare you my sad attempts to justify my blog absence and get right to the point.

WE ARE IN OHIO!!!!! Yes, yes, yes it’s true! We are literally in snowy Columbus, Ohio!

In the Ronald McDonald House across the street from Nationwide Children’s Hospital right now! We could not be more grateful! It just isn’t possible! Some of the best doctors in the world for Cannon’s particular issues are going to be looking my baby over starting tomorrow morning! It’s such a miracle!  We check in at 8 a.m.!

It was a bit of a rough trip out here. Recently, Cannon has developed quite a fear and/or anxiety in regards to leaving home. He can hardly handle it. Going places had become restricted to the bare essentials…..church and therapies. Grandma’s house was even out. He will become almost breathless…..There is intense fear in his eyes…..He asks constantly to go home…..And if I say we can’t right now, he will ask for the game plan over and over and over and over right up in my face. He will finally cry hard and have a complete and total screaming meltdown. I have talked to him about this and asked him why. He just says “I’m going to throw up.” Poor kid. He has just about “christened” everywhere we go…….church, the movie theater, etc. If we all felt like we were really going to be sick constantly…..I think we would be afraid to go anywhere, too.  All the more reason to write him a good social story for the trip……

So, as I was saying, it was a rough trip out here. We had to wake him at 3:30 a.m. to do his flush and be ready to leave for the airport by 5. On the ride and the flight from AZ to TX…..he mostly just asked for the plan intently over and over. He got a little teary but was mostly ok.

But then we had a 3 hour layover in Dallas and he really struggled. He was weak and tired and it was all just too much. We found a play area and that helped for a little bit……

…..But while we were trying to grab some lunch…..He completely lost it and I had to take him out of the restaurant and to the bathroom.  I gave  him some Valium and later Tylenol. It was very, very intense. He calmed slightly and began to fall asleep just as we were about to get on that last flight.

But woke up in the transfer from wheelchair to plane. He truly tried but couldn’t get back to sleep.

That last flight wasn’t easy. It was all I could do to keep him calm. He was also incredibly nauseous and spent most of it with an air sickness bag by his face. He drew this pic on the iPad for me.  When asked, he said it was a sad boy pointing to his tummy and saying “I’m hurt.”  Sigh…..we are where we need to be.

As I mentioned, we are staying in the Ronald McDonald House across the street from the hospital. It is such a beautiful place with so many wonderful caring people. I can’t wait to tell you all about it AND to go home and volunteer at the one in our city. For now, I will just show you some pics from all the amazing spots in this house. I hear it is the largest one of its kind in the world. So impressive! So helpful! We are so, so grateful to be able to be here.

Today, we are just hanging out and exploring the house in VERY short stints. Cannon is very sick and weak. We are only able to give him clear liquids for nourishment all day and lots of Miralax. We also have to lay off some of his meds. And he has to be NPO (no food or drink) as of midnight. Not easy! And it shows.

So, tomorrow……..the plan is to check him in and begin another cleansing process with Go Lytlely solution. Our old friend from all our hospital cleanses. Known to most as “that horrible tasting stuff you have to drink before a colonoscopy.” My understanding is that doing a full history, initial evaluations, labs, and cleansing are mostly what is on the agenda for Day 1. I will tell you more about Days 2 and 3 later.

Many of you have asked how you can pray……I actually do have specifics…….

1)  My understanding is that the first thing that will be done is to stick Cannon with an IV and get an NG tube in.  The latter is a tube that goes in through his nose and down into his stomach.  This may not sound that bad but it is such torture for my Cannon.  So much so that LONG ago, our home hospital began putting him under each time he needed this done.  To be as humane as possible considering all his issues.  We don’t even change him and put him in a hospital gown.  We walk into a room…..fully clothed…..and they immediately give him the mask and take him down within 30 horrible seconds.  But it’s only stressful for 30 seconds.  Once he’s out……they undress him, gown him, put all tubes, wires, cuffs, and I.V.’s in, put the “no-no’s” on his arms (velcro cuffs that go over his elbows and don’t allow him to bend them), and tape socks over his hands so he can’t pull anything out.  When he comes to, all is done and it’s still not easy.  But it’s the plan we came up with over time to keep things as calm as possible.  BUT tomorrow, we can’t do that.  Anesthesia slows motility and that is what we are testing.  So, it’s a no-go.  He has to tolerate it or we have to FULLY restrain him or stop all together.  So, prayer request number one is that he tolerates the initial I.V. and NG tube placement.  I am also trying to convince them to put the solution through his Chait Button in his abdomen.  He would still have to have the I.V. but no NG tube if this can happen.

2)  Another thing we discovered over time was that while the Go Lytely solution is going through his system…..we had to keep him under conscious sedation.  This is Valium through his I.V. to keep him chilled out enough to tolerate it all. Another example of how I kept hearing him called “the anti-protocol” by the docs.  Cannon has a Severe Sensory Processing Disorder.  This affects all areas of his life.  Any ingredient (even a trace amount), medicine, etc that causes mild to moderate irritation in us…..sends him through the roof.  He is like an animal!  But….Valium slows down motility.  So, he can’t have it. Prayer request # 2 is that he can tolerate this visit with no pharmaceutical help.  That’s a big one!  A huge one – actually.  We have waited since May 2014 for this trip to happen.  They have told me that if any motility related problem exists in our Cannon…..their equipment and procedures are so advanced…..they WILL find it!  But he has to get through the testing AND somewhat cooperate throughout.

We have dubbed this year…..2015….“The Year Of Hope” for our family.  Between this opportunity to get him before the best health experts for his issues AND getting the service dog in November…….It’s a big year!  It has so much potential to change Cannon’s (and our family’s) life so very drastically for the better!  We would cherish and so lovingly appreciate your prayers!  We believe with every fiber of our being in the ONE who hears those prayers.  And that he listens!  Tonight, I read this book to my angel…..in preparation for the next few days.  It was perfect!  I highly recommend it!  The moral was to trust God….even in scary tough, confusing situations.  He has a wonderful plan…..He loves us……He is kind.  And in the end…..it really will all be okay.  To know and remember this in your heart and mind.  See…..perfect!

GOD BLESS YOU ALL!!!!!!!!!!!  WE LOVE YOU!!!!!!!!  HOPE WILL LEAD US ON!!!!!!!

“I am with you and will watch over you wherever you go.”  – Genesis 28:15

“I love you, Lord, my strength.  The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.” – Psalm 18:1-2