Follow Up

There are a couple of things on the horizon to catch you up on.   So here goes……..

Cannon goes in for surgery next week.  Wednesday to be exact.  Every year that he has the Chait Button in his abdomen it will need to be swapped out for a new one.    I am trying not to get nervous.  It will most likely be just fine.  Even outpatient if all goes perfectly.  But there is a chance that the tube will not go back in.  See, internally and underneath the tab that is externally visible is a long, spiral tube.  It goes all the way into his ascending colon.  Because of the spiral nature, it can be difficult to re-place correctly.  I actually had someone write in to this blog once and tell me that this happened to their child.  The up-side is that the procedure will be performed by an Interventional Radiologist.  They will inject dye into the pathway and be able to watch what they are doing on a screen.  Doing it this way has a higher success rate.  So, we are hopeful that this will be a simple deal and he should heal quickly.  When talking with the surgeon about when to do the surgery, my only stipulation was that he needed to be healed in time to go surfing in August.  Now that we are scheduled for next week……we should be in very good shape by then!

Cannon has been struggling mightily with getting sick during the daily flushing of his Chait Button for some time now.  Since November really. And it has been progressively getting worse and more violent (projectile).  We have tried a few different strategies but nothing was working.  As you might remember, the flush started out as a 3 man job and had become a 2 man job.  Due to “staffing,” I was having to wait until around 11 in the a.m. every day to perform it.  Or I would have had to go it alone.  Well, his G.I. doc finally said that I was going to have to do just that.  We could not continue to allow him to get so sick and throw up all his food and morning meds. I would have to buck up and try to handle it on my own.  So, I practiced for a couple of days with Mark there but me trying to do it by myself.  You really do need all 4 hands but we figured out a way.  And thank goodness, Cannon has been awesome and laying really still.  I am happy to report that after a year of having his Chait Button…..the flushing IS now down to a one man job and Cannon is doing much better.  Hasn’t gotten sick once since we started doing it this way!  Thank the Lord.  He has a lot of indigestion during but nothing on his stomach to omit.  So, we are in good shape in that department!

The scoop on Townsend is that we still don’t really know.  The results of his EEG were negative.  He had to be sleep deprived prior to the procedure but my stubborn little man managed to stay awake regardless.  (Of course he was asleep within 5 minutes of the drive home, though.)  So, the neurologist wants to be thorough and try one more time.  Especially since this is a second episode.  Next month, we will check him into the hospital for 24 hours and they will monitor him in a special room.  (If you have been following our journey since the beginning, you may remember Cannon had to do this a while back.  His was for 4 days, though.)  He will be hooked to an EEG the entire time and the room has cameras with constant monitoring.  We will see what happens with that in June…….

Townsend wanted to say thank you to the firemen and paramedics who answered our cry for help when he had his seizure.  So, what does our family do?  We bake!  We made some Chocolate and Peanut Candy as well as Malted Milk Chocolate Chip Cookies. Townsend loves to bake with me so this was perfect.  He also made some paintings and cards for them.  One Tuesday, when I took Cannon to town for all his therapies…….Mark and Townsend visited the fire station to deliver the goodies.  Everyone there was so nice and “Mr. TJ” took him on a tour and let him check things out.  When I got home, he was so excited to tell me all about it!

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To leave you on a funny note, I want to share with you a couple of examples of the typing program I am doing with Cannon.  If you haven’t seen the news magazine show and later viral video of Carly……please look below and be amazed.  It is the story of a non-verbal teenage girl with Autism whose parents were told that her IQ was incredibly low and that she did not have “much going on upstairs.” Therapists discovered that she was quite the contrary and began having her type.  A whole new world opened up.  It is just the best story! Have a look now if you have missed it!

Anyways, even though Cannon is verbal-ish……I wanted to explore this concept with him.  To see if his language might be more complex and/or articulate inside.  So, here are some examples of our first couple of tries.  I say something……and then he does.  We alternate back and forth.  Have a look and get a little laugh at my stubborn boy.  I will share more in the future but this is a taste!  He is not really happy about doing this just yet.  But I have faith that he will get better and more confident with practice!

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LOL!  Have a blessed day and we will be in touch soon!

4 thoughts on “Follow Up

    • Right?! I cry every time I watch it! And I have watched the story quite a few times! I can’t wait for her book to come out!

  1. My dear I’m catching up now with your amazing journey and by golly WoW! I am excited to see more example of how that handsome Cannon is going..continuous pray for you , Cannon , Towsend and Mark.

    • Thank you sweet friend! It has been quite a journey but we are praying that the worst is behind us! Cannon has incomparable strength, courage, and determination! I, too, cannot wait to see what God has in store for this incredible human being! My little hero! Thank you so so very much for the prayers! <3

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