Last week, Cannon had to go into the hospital for another procedure…..a Barium Enema.  This is the last of 2 tests the surgeon ordered to help him determine what surgery to do on Cannon.  We had to be at the hospital at 8:15 for the 9:15 procedure.  He couldn’t eat after midnight nor drink after 7 a.m. due to the fact that he would require sedation.  We arrived on time, checked in, and were taken to our room.  Thank goodness for our brand new ipad (which I will blog about soon!)!   It kept him occupied while we waited and helped him deal with his anxiety.  Every time a nurse or doctor entered the room, you could see him visibly tense up.  His voice also got louder and he wanted to snuggle a lot and hide behind me.  Even the Child Life Specialist who was with us commented on it the incredible tension in his little body.  So, we allowed him to play the ipad as much as he wanted.  His apps of choice that day were a bongo drum app, memory game type app, and a fill-in-the –missing- letter app.  The nurse immediately put some numbing cream covered by a large, clear sticker on the inside of his elbows.  She said this would help when it came time to start the I.V.  This has been tried on previous visits and I told her the stickers would bother him more than the I.V.  It’s just one of those sensory things that don’t necessarily make sense.  He continually responded the way I predicted for about 10 minutes……so she eventually took them off.  I also told her that he and the I.V. always do better when you place it on the front of his forearm rather than the other spot.  They checked for veins and saw that I was right.  They were juicy veins!  So, when it came time to put it in……they listened and put it where I suggested.  There was a nurse to stick, a nurse to hold the arm to be stuck, a nurse holding his legs, I held his upper body, and the Child Life Specialist tried to distract him with the ipad.  Eventually she even had to jump in and help hold him.  It takes a village to get an I.V. in my kiddo!  He is freakishly strong!  But once it’s in…..and you stay vigilant with watching him like a hawk so he can’t pull it out……he does okay.  The doctor then came in and explained the procedure.  It wouldn’t take long, they decided to use a different contrast besides barium (honestly can’t remember why), and that I could stay with him if I wanted.  I chose to…. even though I wasn’t sure I wanted to.  When it came time to start, I carried him to the procedure room while the Child Life Specialist followed closely behind showing him the ipad all the while.  He was following along and reading the Dr. Seuss story “Hop On Pop” at this point.

When we got to the dimly lit room, I laid him on a long table with a huge x-ray machine above it and they began to push the I.V. medication to sedate him because he got very upset!  Even with the ipad.  It took a few minutes but eventually, he got sleepy.  I was put in the heavy anti-radiation gown along with an extra piece that covered my throat.  Cannon played the ipad till the end.  And it was so funny!  He was even reaching for it once his eyes had closed and he was almost completely out.  🙂  Once he was down for the count, they began placing the tube.  I think you can guess, even though you probably don’t want to, where that one went.  The doctor then came in and they got started.  There were several nurses, the doctor, resident, myself, and the Child Life Specialist present.  My observation of what happened next was that the doctor would squeeze a small bulb that was connected to the tube inside Cannon.  This allowed contrast in….a little bit at a time.  Then the machine would take an x-ray.  He would squeeze a little more, another picture was taken.  And so on and so forth for about 15 minutes.  Then, they removed the tube and attempted to drain some of the contrast.  I asked the doctor if he saw any evidence of an impaction (because his behavior as of late had been somewhat consistent with that).  He said he didn’t see an obstruction.  I informed him that Cannon doesn’t get obstructed but gets horribly impacted.  He never answered and the nurse told me later that that is not his job.  He administers the test and evaluates the results….. but that is not what he is looking for.  She said I needed to call our G.I. doctor for him to look at the films.  We called his office and are STILL waiting to hear back.  We then went back to our room to wait for him to wake up.  The nurse told me it would be about 30-45 minutes.  I told her how they said the same thing at his last procedure and he was asleep for 4 hours.  After 2 hours with not so much as a stir, they began to try and force him to wake up.  The cold wash cloth was the thing that finally did the trick.   Once he showed that he was really awake and would drink something…..we were free to go.  The report from the procedure was finalized before we left the hospital but we have to wait to meet with our incredibly busy surgeon before we get to hear the results.   Hours later, Cannon was in terrible distress.  Presumably from the lingering contrast in his body.  He screamed like crazy in a squatting position for an hour and a half.  I was in shambles!  I was just about ready to rush him back to the hospital.   Our last idea was to try a bath.  He wouldn’t sit down.  Just screamed the loudest scream imaginable.  So, we turned on the shower.  After allowing him to stay in there for about 20 minutes…..he relaxed somewhat and at least the screaming stopped.  You could still tell he was in pain but it wasn’t as extreme as earlier.  We were so thankful.

However, Cannon’s behavior is deteriorating.  It may be that he is approaching another impaction.  Or it could be that the tapering off of the seizure meds is hitting his little body hard.   We know for sure that the lack of meds is causing him to sleep about an hour and a half less each night.  4:30 a.m. is his new wake-up time.  This was the norm before he began this particular medication.  Also, due to Cannon’s language delay, we have had to use behavior as our way to evaluate how his tummy was feeling.  Now, we are seeing all kinds of tough, new, and complicated behaviors that were being suppressed by the seizure meds.  Along with a harsher version of all the things he normally does when he is not feeling well or impacted.  So, it has become incredibly difficult to tell what is going on with him.  We met with our neurologist last week to discuss the headaches that have come out of nowhere, the increased behavior and staring spells, and what to do about the seizure meds.  She wants to continue the tapering off.  She said we need to brace ourselves for the tough behavior but that we have to give this a fair shot.  To be absolutely sure before we do surgery that we tried everything.  Next week, it will be time for him to come completely off the seizure meds.  So, his neurologist has decided to put him in the hospital for 2-3 days to monitor him.  They will hook him up to a 24 hour EEG and put him in a room with cameras.  So, if he has a seizure….he will be in a safe place and we will know exactly what we are dealing with.  She thinks the headaches are either bad heredity or a result of the med change.  And the staring spells could be a behavior or a seizure.  It is impossible to tell or know without an EEG hooked up.  Here is a pic from his last 24 hour EEG.  So, you can see what it looks like.  We were able to go home with the machine in January when this was done.  This time will be different.  He will have to stay in the hospital room for the length of the test.

I have a Scripture Verse A Day calendar in my kitchen.  Today’s verse was from Hebrews 13:5-6 out of the Message Bible.  “Since God assured us, “I’ll never let you down, never walk off and leave you,” we can boldly quote, “God is there, ready to help; I’m fearless no matter what.  Who or what can get to me?” I was blessed with the strength that radiates from these words!  God bless each and everyone who reads this (even the spammers!)!

Working with a child with Autism, there will always be a mixture of victories and setbacks.  Over the last year and a half, our experience has constantly been that every time Cannon met a goal in therapy or exceeded our expectations……his tummy would flare up again and we would lose the momentum and many times…..the skill all together.  It has been an incredibly sad and frustrating thing to deal with!  This has especially been true in his speech therapy.  See, Cannon talks A LOT!  But his language is, for the most part, not functional.  His speech sounds like a script of a movie or book.  That’s why it is called “scripting.”  He will also resort, at times, to something called “stimming.”  This is when he makes these strange sounds that have no logic or purpose (aka: vocal self-stimulation).   And they can be very grating!  He tends to do both of these when he is bored, anxious, and/or not feeling well.  I can’t tell you how many goals he has mastered in speech, only to regress.

Anyways……a couple of months ago, all of a sudden, after one of our hospital stays…..Cannon began talking more.  Prior to that you could ask him a question but you had to phrase it in the form of a yes or no question.  And give him the options or he wouldn’t understand how he was supposed to respond.  And even then, sometimes he would respond….sometimes he wouldn’t.   You could also ask him to label anything and he could do that but he just couldn’t use it in any kind of sentence.  So, you can imagine how excited we were a couple of months ago when phrases and close to full sentences began to come out of his mouth.  As a matter of fact, for a few days, it was like he was lucid.  He made killer eye contact with me and smiled and laughed a bunch while looking right into my eyes for extended periods of time.  (A major feat for a child with Autism.)  It was thrilling!  I remember telling my dad that I felt like I was witnessing a miracle.  And my biggest fear every night when I put him to bed was that he would wake up the next morning….his old self.  And all the progress would be gone.   And that did happen for the most part.  I feel certain, in my “mom gut,” that his tummy played a huge roll in that.  We think he was feeling so much better after the cleanout that the real potential of Cannon came through temporarily!  However, there has still been great progress!  He has been talking so much more.  Let me give you some examples.  In the mornings now, he tells me “Hi Mommy” and Townsend, “Hi Townsend.”  He tells us he loves us and if we tell him this first….he will say “I love you, too.” He often asks, “Can I have a snack, please?”  Or “I want to go outside.”  These are actually “scripts” that he has memorized and found that they are appropriate in these particular situations.  But according to our speech therapist, that is the way he will learn to speak. 

Anyways, one day about a month ago, I kept hearing laughing and talking in the playroom so I snuck down the hall to see what was going on.   I peeked in and saw Cannon standing behind their little grocery store stand playing with the toy cash register.  There is a pretend credit card that goes with it and a place to swipe it.  Townsend would pull the credit card out of the slot and hand it to Cannon.  Cannon would say “Oh, thank you Townsend” and they would both crack up laughing.  They did this over and over until I stepped in and said something.  I asked Cannon what they were doing.  He said “He’s giving it to me.”  This was the most complete sentence we had ever heard him say.  My mouth hit the floor and I ran to the kitchen to tell Mark.  Then, of course, I cried.  I was so excited!  I hugged him like crazy and told him over and over how proud I was of his “great talking!”  He used personal pronouns, the proper verb tense, and described the action perfectly!  I was in awe! 

And then over this last weekend…..another awesome sentence came out!  Our neighbors have horses and the boys love to go over there and feed them carrots or an apple.  Saturday, we decided to walk over so I grabbed some carrots.  Mark, Cannon, and Townsend each fed the horses a couple of carrots.  I did not.  I am not a big fan of horse drool on my hand.  Eeeeew!  I didn’t say anything about not wanting to feed them…..I gave up all the carrots and just simply didn’t.  As we were walking back home, I asked Cannon if he fed the horses.  He said, “Yes and Mommy was shy.”  Please think about that statement for a minute.   He answered me, made an observation, and figured out the right feeling word to describe it all.  AMAZING!!!!!!!  I practically dove for my cell phone when we walked in the door, to text his speech therapist.  She loves hearing these stories!  Her response was that she was crying and so excited.  It is wonderful to be involved with such a beautiful therapist, inside and out.  Who loves our little guy and wants to hear about every victory!

We have another other piece of news that is also good but unrelated to speech.  Cannon’s results are in from the test with the “crazy capsule.”  And they were so unbelievable that we almost questioned them.  As, you may remember from a previous post, Cannon had to swallow a special capsule with 24 rings in it and return in 5 days for an x-ray to determine where they all were.  They should have been expelled by that point but the test would determine if they were and if not, where they were hung up.  Amazingly enough, THEY WERE ALL GONE!  AND …..there was no evidence of impaction and/or abnormal gas pattern.  Cannon was taken off the 7 motility meds that he takes daily during the testing period and it has required that much to keep us from being in the hospital constantly.  So, imagine our surprise that this happened!  Or didn’t happen!  It was wonderful!  We are still having trouble with lots of headaches so life isn’t perfect.  We have an appointment with his Neurologist next week.  He is also having more staring spells than normal which could mean seizures and that the tapering off of his seizure meds is not going to work.   And we still have one more motility test, the Barium Enema, to help us have a true picture of his motility, the degree to which his colon is stretched from multiple impactions, and to give us the tools to make a final decision about surgery.  But, in our world where good news is hard to come by…….we will take good news!!!!!!!!!!  Especially when it could……….maybe just maybe……mean he won’t need such a drastic surgery.  We are cautiously optimistic, prayerful, and thankful …..so thankful……for all of your prayers and kind thoughts! 

 I was listening to the radio the other day right after we got the good news.  I heard a more modern version of the old hymn “Tis So Sweet To Trust In Jesus.”   The song put a smile on my face and joy in my heart!  I love the lyrics to this song!  My favorite lines are “Tis so sweet to trust in Jesus……Just to take him at His Word……Just to rest upon His Promise……And to know “thus saith the Lord”….. (Chorus) Jesus, Jesus….How I trust him…..How I’ve proved Him o’er and o’er …..Jesus, Jesus…..Precious Jesus…..O for grace to trust him more.”  I wanted to scream “Yes!”  I am so thankful for the ability to trust Him, for a God who is so amazingly worthy of such trust, and I would LOVE to find the strength to trust Him more!  🙂   Please have a listen to this beautiful song!

If you prefer a more classic presentation……listen to this link…..

http://www.youtube.com/watch?v=-DdgkvnsHjM

If you don’t mind your hymn a little amped up and added onto………this one is for you! 

http://www.youtube.com/watch?v=kKaVt2t8Tuo

I so enjoy both versions.  I love both traditional and modern worship!  There are just great, great elements to both.  I pray that you will be spoken to by these precious lyrics and encouraged to beg for the grace to trust him more!  Much love!

Yesterday morning, Cannon had to swallow a capsule.  And not just any capsule.  You may remember that his surgeon wanted him to undergo 2 more tests before he decided what surgical option to go with.  Well, this capsule is the first step of the first test.  The exterior capsule itself looks much like any other capsule you would see.  Clear and plastic-y.  But, the inside is bizarre.  There are, according to the instructions I received, “24 radiopaque polyvinyl chloride O-rings” inside.  He was to swallow it and the little rings will be released into his little colon eventually.  On Monday, we will go in for a simple x-ray, I am told.  The x-ray will be evaluated to see how many of the O-rings still remain and where they are located.  The info provided says that if you have “expelled” 80% (19) of the rings…..it will be determined that you have “grossly normal colonic transit.”  If one retains 6 or more, they will require follow up x-rays and anyone who has their’s accumulate in a certain part of the colon will need a cleanout and to repeat the test in a few weeks.  “To determine the location and extent of the elimination of the markers.”  He had trouble swallowing the capsule at first.  Spit it out 3 times.  But the 4^th time was a charm and he got lots of hugs and praise afterwards for his efforts! 

Cannon is also not allowed to take ANY of his motility medication for the next 5 days.  He currently takes 3 capfuls of a laxative, 3 capsules of one drug, and 1.25 ml of another daily for motility alone.  We are so concerned as he is already (27-ish hours later) in bad shape.  His sensory system is on overload, his behavior is terrible, he’s asking us to rub his tummy a lot, doesn’t want to eat, and his body isn’t “producing” much.   Yes, we may have answers at the end of this, but the in between time is going to be rough, to say the least.  I will not be surprised at all if he is back in the hospital when this is over.  Severe impactions can also be fatal.  But we would never not take him directly to the hospital if we thought things were in a grave place. 

Cannon has also begun having headaches.  He had 3 last week so I called his pediatrician, as he has never had one to our knowledge before.  She said that some kiddos had been having a difficult time with their allergies lately with how windy it has been and with certain things blooming.  She suggested allergy meds and to call her the first of the week.   On Tuesday, he had 2 in the same day.  This morning, he had one as well.  So, I gave her a call once again.  She is concerned that it could be the result of us tapering him off his seizure medication.  But we are going to try a different allergy medicine before we go on assuming that.  Mark’s family also has some migraine history.  We are just praying that we do not have a new problem on the horizon here. 

Yesterday, I practiced with Cannon for his second to last night of AWANA at church.  This is a program for children that contains a club atmosphere where they learn Bible stories, do crafts, memorize Bible verses, sing songs, play, watch a puppet show, have a snack, and also tons of fun!  He has had a blast being in AWANA over the last 2 years at our precious church.  He wears a special vest for his club meetings and has earned all of his patches for it so far by memorizing a verse a week and completing a lesson.  That’s 24 verses!  A lot for a 4 year old, I think.  Last night, they had a uniform inspection and he received a green ribbon.  He smiled from ear to ear and can’t stop talking about his “Riv-on.”  I am so proud that he has been able to accomplish all he has in AWANA……with all the ups and downs of the year!  In the beginning, he couldn’t relax and focus at club enough to sit still during story time and/or to say his verse.   So, I would video him saying the verse at home ahead of time and show it to the leader when we got there.   Now, he says them in a quiet corner with no problem, for the most part. And he will tolerate me sitting with him, keeping him on the carpet for most of the story time.  It may not sound like much but it is a big improvement.  Last night’s verse was James 1:22.  “Be doers of the Word and not hearers only.”  As I struggle with my doubts and emotions sometimes, I try to remind myself that I must do what God says and not just hear the nice words.  I must live out what I am reading …..and not just let it go in one ear and out the other.  I must remember …….” Do not be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests to God.”  (Phillipians 4:6)  I can’t just talk about it…..I have to do it!  This is a tall order but all things are possible with God’s help!

About every month or so, I have a baking day.  Cannon’s diet is so complex and difficult to execute.  So, I like to have a baking day to stock my freezer with items I can pull out easily.  This weekend, I planned out what I was going to make and shopped for ingredients on Saturday.  Then, I spent Sunday afternoon and evening cooking away in my kitchen.  “The Kid Friendly ADHD and Autism Cookbook” saves my life!  It is my go-to cookbook due to its sheer volume of recipes, ease of preparation, and visible listings of what common allergens each recipe contains.  Cannon’s doctor has prescribed a diet free of dairy, wheat, gluten, soy, corn, refined sugars, and all artificials (colors, preservatives, and flavors).  He says that the gluten and refined sugars, in particular, feed the specific intestinal bacteria that Cannon has.  There are also other restrictions outlined in a diet that he gave me.  I summarized it (yes, this is the summarized version sadly enough) in a chart for my fridge. 

 There is a front

….and a back.

I had a good cry over the diet when I first received it but then had to buck up and figure out a way to deal.  And one of the ways I deal is by making quickly re-heatable foods for my freezer.  So that I am not constantly having to make complex food from scratch at every meal.  On this particular baking day, I decided to make banana muffins, 2 kinds of veggie muffins, chicken nuggets, and meatballs.  I began by whipping up a batch of banana muffins and got them in the oven.  To make these ok for Cannon, I use quinoa and brown rice flour along with xanthan gum and tapioca starch to replace key gluten-filled ingredients. 

While they were baking, I put together and rolled out a whole heap of meatballs and got them going in the Slow Cooker. 

These contained organic beef and gluten free casein free (GFCF) brown rice bread among other things. 

Then, I got some batter ready for my first batch of veggie muffins.  They contain a GFCF cake mix, carrots, zucchini, and GFCF chocolate chips.  The boys go crazy for these!  After my first 2 batches were done cooking, I got my last batch ready for the oven.   These contained a puree of carrots and green beans along with organic applesauce.  When those were getting toasty in the oven, I finally began getting my last recipe together.  These are awesome but they take forever!  The Chicken Nuggets!  I chop up about 6 large chicken breasts, dip each small piece in an egg and rice milk mixture, and “bread” them in crushed up Sea Salt Kettle Chips.  (The latter are great because they are solely made of potatoes, safflower oil, and sea salt.)  The finishing touch is to drizzle them with ghee (clarified butter with the dairy element removed).  These really taste great and the recipe makes 3 large trays of them. 

Really all of these recipes are not as bad as you may think.  They may not be my personal first choice of something to eat but they are not a bad substitute.  And Cannon is such a trooper that he eats most anything.  By the end of my baking day, I was wiped but took a break before forcing myself to tackle the dishes. 

If you are going through something similar to what we are…..please consider what I do as an option.  It makes day to day life so much easier.  If I am tired and don’t feel like making waffles or pancakes one morning, I reheat some banana muffins. 

If I need something for a quick lunch or dinner for the boys, the meatballs and chicken nuggets are perfect.  And I use the veggie muffins as a occasional side at dinner or a special treat.  I also always have a batch of GFCF cupcakes frozen.  So, whenever we have a birthday party or school function where there will be sweet treats…..I can reheat one quickly and bring it with me!  This makes life and the diet so much simpler to handle.  Check out the fruits of my labor!   2 dozen banana muffins, 2 dozen of one type of veggie muffins, and 2 dozen of another.  Somewhere around 180 chicken nuggets, and a whole bunch (I have no earthly idea) of meatballs.  Not bad for a days work and a recipe for an easier next month!  God bless you my friends!

I visited a friend in the hospital today.  She has just had her first child…..a son.  A tiny little miracle I was privileged to hold in my hands.  What a sweet time to get to share with them!  Doing this brought back a lot of wonderful memories of the birth of my firstborn……my precious Cannon.  I will never forget that day as long as I live.  Holding him for the first time was the most miraculous and spiritual moment of my life.  To think that God, my Father in Heaven, knit this tiny little person together inside of me and then allowed me to have him and trusted me with such an incredible gift……what an undeniable blessing.   I remember how unbelievably joyful I was.  How I couldn’t stop smiling….even through the exhaustion of actually getting him here.  Mark and I thanked God that he was healthy and had no birth defects or other apparent issues.  We never let it enter our minds that someday things could change. 

Four years and some change have passed since that day and sometimes it feels like a lot more.  As a matter of fact, honestly, the last year and a half feels like a decade in itself.  I never in a million of those years imagined I would be facing the things I do today as Cannon’s mom.  But I tell you this with every fiber of my being.  I am honored and privileged to be Cannon’s mom.  I would change NOTHING!  The God I serve is perfect!  His plan is, too!  And he intended, for whatever reason, for things to be the way they are.  This journey has and continues to teach me so much about myself……both good and bad.  But the main thing it teaches me is how much I need God to be a good mom.  To be strong and kind, to have courage and patience , to have the willpower to get through the hardest days.  Autism or no Autism.    To say I am grateful for my Cannon and my Townsend…..is silly because it is the world’s biggest understatement.  Words can’t express the joy I feel when I look at their sweet little faces.  I will spend the rest of my life on this Earth praising God for these little miracles and being awestruck at their creation and Creator. 

Mother’s Day wouldn’t be Mother’s Day without a shout out to my Mom.  The greatest Mom there is as far as I am concerned.  No one could possibly have been better.  To list the things she did for me would take up the entire internet.  She was amazing!  Mind Blowing!  Selfless! I didn’t always appreciate her the way I should but I think I grew up and she knows now how special and invaluable she is in my life.  But most of all she taught me about Jesus, how to love him and why I should.  How to lean on Him when the going gets tough.  Momma…..I love you!  Thank you for everything you did, everything you are doing, and everything you will inevitably do in the future for me and my family!  I was blessed to be your daughter and I will always be grateful that God allows me to call you Mom. 

To my friends and family.  To those Mommies that touch my life with your friendship, love, and kindness.  I thank you.  Thank you for being a blessing to me and for teaching me in all your unique little ways….different things about how to be a better mom.  You challenge me.  And I appreciate it!

And this one is for my sisters out there…….my fellow “Mother Warriors”……..to the Moms who are in the same boat we are…….riding out the storm.  I give you this precious poem.  Stay strong and have a very Happy Mother’s Day!

http://www.rdrpublishers.com/f/A_Mother_s_Autism_Prayer.pdf

Wow!  What a week it’s been!  I told you guys in my last post that I wasn’t sure if I could hold off getting Cannon checked out until the 2 motility tests got done.  Well, I couldn’t.  Only one test is scheduled and on Wednesday, we had reached our breaking point.  Cannon was so incredibly emotional and erratic.  He cried and screamed most of the time and had no vocal control.  He was crashing into everything possible; doors, walls, furniture, appliances.  He was stimming (vocal self-stimulation) and scripting nonstop and at a feverish pace.   He was starting to not eat or drink very much, either.  Even his Preschool Aide and Swim Teacher agreed he was acting similarly.  So, I packed our bags just in case and hit the road for the E.R.  Cannon has never re-impacted this quickly.  In a month…..yes.  But, not 2 weeks.  We have x-rayed him a week afterwards a couple times before… …because his behavior was consistent with this problem and we wanted to head it off.  It was always…..well…… really bad gas.  Sorry guys, I know this may be TMI.  But because of Cannon’s severe sensory issues, having a lot of gas is almost as bad as an impaction.  Very excruciating and he can’t express it vocally or tell us how to help him!  Well, the short version is that after an x-ray, it was confirmed………no impaction but a horrific amount of gas.  My poor baby!  So, on one hand…..it was great!  No hospital stay and cleanout!  But, on the other hand….there was nothing they can do for him.  We can try Mylicon drops (don’t work for him) and Ibuprofen (same result) but that’s it.  And the other thing is…..it makes us gun shy to bring him in the next time. 

On the way to the hospital, I was grasping at straws.  I was trying to think of anything possible to avoid the partial colon removal surgery that has been proposed.  I called our Allergist.  She has done extensive testing before but I wanted to hear her say that she had done all she can do one more time.  She confirmed this.  I also called our Neurologist.  Our Pharmacist had informed me that there is a 5% chance that Cannon’s seizure medication can cause constipation.  He first began this medication about 2 months after his tummy trouble began a year and a half ago so it is not the cause.  But I wondered if it could be making it worse.  She thinks that it is worth a try to take him completely off of it and see if that helps.  She has never been sold on the idea that Cannon has seizures, even though his EEG’s were abnormal.  As I mentioned in “Our Story,” there are 2 causes for an abnormal EEG.  One is seizure activity and the other is just that there are funky charges in the brain caused by the Autism.  So, I guess now we will find out if he does or he doesn’t.  I have always believed that he must have had a seizure at one point, probably in his sleep, that caused his dramatic and almost instantaneous loss of fine motor skills.  That is just my opinion but I believe it in my heart.  So, this idea scares me very very much but I am willing to try anything to avoid this undoable surgery!  The plan is that we will spend the next 5 weeks slowly tapering him off his seizure meds and see if the constipation gets better.  We will also do the 2 motility studies in the meantime.  Our pediatrician thinks we should set a goal of making a decision about surgery by mid July.  She also prescribed a SMALL amount of Prozac to take the edge off of his anxiety and maybe help him sleep.  That was a very pleasant side effect of the seizure medication.  Cannon used to wake up screaming 3-6 times a night for at least 20 minutes at a time prior to starting it and this stopped the very week we began it.

So, friends, we could use your prayers!  Please pray that this will work so that Cannon will not require this major abdominal surgery!  And pray that he does not really have seizures.  I am so frightened of what the sight of my baby seizing would be like.  I just don’t ever want to know!  I am not the best under pressure and not sure how I would react.  Thank ya’ll so much!

I was watching this movie last night called “Faith Like Potatoes.”  It was a true story about a farmer in South Africa who chased material wealth until he realized the hole he was trying to fill could only be filled by God.  He then became a preacher as well….sharing with anyone who would listen the freeing power of Christ.  God did amazing things in and through this man’s life.  And one year in the midst of a drought, he did a crazy thing.  He decided to go on faith and plant potatoes.  These require a lot of water to grow and you have no idea until harvest time whether they have grown at all.  Because they grow underground and cannot be disturbed.  Well, like any good movie, it had a happy ending.  The potatoes not only grew but they were huge.  What a witness to the entire community who came out to see what would happen!  He later talked to the people about how you have to have faith like potatoes.  Faith in a God that you can’t see but you believe and trust with all your heart….is there.  He spoke of faith so strong that you can feel it and hold onto it.  I was inspired to strive even harder in my own life to have unshakeable faith and also reminded of Hebrews 11:1 …. “Now faith is being sure of what we hope for and certain of what we do not see.”   God bless ya’ll!

We are still waiting to have the 2 tests that the surgeon wants before deciding Cannon’s next step.  The surgeon’s office was supposed to schedule it and get back to me but they haven’t.  So, they have had the joy of hearing from me daily.  Today, they finally informed me that the surgeon called one of the procedures one thing and the hospital where it will be administered is calling it something else.  And the surgeon is on vacation until tomorrow.  So, hopefully this will all get ironed out tomorrow.  It’s rough though because Cannon has been in very bad shape for about 4 days now.  He has done nothing but script and crash.  He’s just like the Tazmanian Devil.  I have almost taken him to the hospital numerous times and he has even asked for it!  My hope was that we could get the Barium Enema soon (the one that takes all the pictures and can give him a little cleansing action if need be) and that could take the place of yet another x-ray (radiation exposure).  But we will have to see if we can wait that long.  I feel very guilty trying to stretch him but he has never re-impacted this quickly so I am banking on that.  Thank you for all of your prayers and concern.  We are hanging in there!

To some, this may look like a messy playpen.  To us, it is a happy accident.  To Cannon, it is a sensory haven!  This playpen has almost always been in our living room since Cannon was born.  When he was a baby, it was a great place to play with his toys and just hang out.  He took some naps in it.  I would also drag it back to our bedroom when I needed to take a shower.  It disappeared for a bit but when Townsend was born…..it reappeared.  And Townsend used it for all the same reasons.   But then he got a little old for it…..yet it still sat there for whatever reason.  Collecting dust.  In early Fall, I got new pillows for the couch.  I was out of closet space to put the old ones in so I threw them in the playpen until I could figure out where to stuff them.  A month or so later (I know, I’m a slacker), Cannon was having a particularly rough day.  Totally over-stimulated and out of control.  Bouncing off the walls and crashing into everything.  I was watching a football game with a friend when Cannon ran over to a chair that sat next to the playpen, got up on it, and used it to propel him into the playpen.  He dove under all the pillows and just laid there and played with the toys that still remained at the bottom.  It was the quietest and calmest he had been all day…..and lasted quite a while.  He got out a couple of times and then repeated the process.  Later on, he was so relaxed and we realized the beauty of this “happy accident.”  By jumping in, crawling under the pillows, and laying there with the pressure on top of him…..he was getting the sensory input he was seeking and didn’t need us to figure out how to help him get it.  I also think since he is too long for it, stretching out into it and feeling the resistance from it…..helps.  I don’t even remember who dubbed it “The Cave” but the name sure stuck.  Now, on days when he is particularly out of whack, we tell him…..”go jump in your cave.”  He loves it and It always seems to help…..to some degree.   His favorite use is as his #1 preferred hiding place for Hide and Seek.  He’s easy to find though…..just listen for the giggling.  😉