Inconclusive: My New Least Favorite Word!

Ahhh friends! I have been waiting and waiting to post an update on Cannon’s condition for some time now. I wanted to wait until we had something concrete to report. But it is now a few months later and we still don’t have that information. We have results from a bunch of tests that are almost all (my new least favorite word)……inconclusive. Blah! I hate that word! It tells us a whole lot of nothing! In late November, Cannon had an Endoscopy/Colonoscopy because he was vomiting frequently, burping constantly, and having a lot of intense indigestion. The doc found a lacy or “cobblestone-like mucosa” all over his stomach. When he came to talk to us after the procedure was done, he said he thought it was a bacteria called H. Pylori. We took immediately to WebMD and looked it up. The symptoms associated with H. Pylori read exactly like the list of symptoms we had gone to the doctor with. We were told that we had to wait for the biopsy results to confirm it but it looked an awful lot like this was what was going on. I was relieved immediately because there was treatment for this condition. The worst part of many of Cannon’s issues is that there is little definitive treatment. It stinks to put it mildly. So when the biopsy results came back negative for H. Pylori, we were flabbergasted! How could this be? Then, what was it? “The results are inconclusive,” we were told. UGH! The test showed Gastritis, Esophagitis, and Gastro-Esophageal Reflux Disease but no erosions, no ulcers, and no H. Pylori. So, the bottom line is we know that there is something all over his stomach, that it wasn’t there on his last scope 2 years ago, that he is in pain, and that his stomach and esophagus are inflamed. And we don’t know why the 3 highest doses of medication possible that he has been taking daily for the last 2 years haven’t improved this condition more, how to stop his pain, and if the bacteria will turn into something else over time.

Through the last couple of months or so, he has experienced a lot of lethargy. He will just lay around, want to be held often, nap out of no where, and ask to be carried everywhere. We tested his blood thinking the iron supplement for the Anemia must not be working. Nope! Nothing! Iron level is improving slowly but surely. So,the explanation for the lethargy…..the results are inconclusive! His blood did show concentration so a urinalysis was done. And all looked ok. So, again, no reasons…..no answers. He has perked up slowly over the last couple of weeks but now has become increasingly “fight or flight.” Super tense and at times….angry. He hits his fist on things and grinds his teeth hard.  He also probably tells me he doesn’t feel good around 75-100 times a day. I kid you not. I feel so bad for my little punkin.

Keeping things in perspective……this time last year……Cannon was in the hospital every 2-3 weeks. So, anything other than that is an improvement. Now, we just have to keep at trying to make adjustments that could possibly turn the tide. I met with a dietician last week to further tighten up Cannon’s diet and we also trying a new kind on milk. Wait for it……CAMEL milk. Stay tuned for details and analysis of how that works. It’s quite interesting. But I want to have more data before I “publish” my findings.

So, that is about it for us….for now. Lord willing….these new changes will help and/or he will just get to miraculously feeling better! In the meantime……since he has perked up……we are turning our focus to getting caught up in homeschool.  We have had some REALLY ROUGH days getting back in the swing of things but I dare to say that I think we have finally found our stride.  We are using a Christian curriculum called “My Father’s World” this year.  It is wonderful and I love it!  Most days we begin our day singing this sweet, old children’s song!  Enjoy a listen before you log off!  Love to all!

Happy! Happy! Happy!

MolthanFamilySmall-171

 

Well, it’s a new year!  Yahoo!   2012 is now behind us and in our family’s opinion…..that is not such a bad thing.  It was a rough year…..to say the least.  We learned a lot and are thankful for those lessons.  But now we begin anew.  And conger up many new aspirations, hopes, and dreams for the next (God-willing) 365 days.

Last year, I shared some goals with y’all.  A few things I hoped to accomplish throughout 2012.  Five goals actually.  Let’s see how I did……shall we??

1)  Get better with computers so I could be more independent in executing the blog.  My little sister had created this blog for me per my instructions and specifications.  I was hopeless to do any of it myself.  I used to write my posts in Word and then email them to her.  She would then cut and paste and insert them into this lovely WordPress blog while adding the photos and videos I asked for.  Well, I have to say it has been quite some time since I have needed that kind of help.  She still helps me with glitches here and there.  And is going to help with a re-vamp here soon enough.  But I do most else.  I even create the Power Points now (which I had never done at all prior to this year ).  I have definitely accomplished this goal.  Proud to say!

2)  Decide on and implement a specific play therapy program.  Done!  The Son-Rise Program is alive and well in our home therapy room.  We need more hours in the day so that we have more time for it.  But otherwise, this goal was accomplished!

3)  Do more.  Do not allow Autism to keep us at home any longer.  As you read in my last post (our Christmas letter), we have definitely gotten this done this year.  Even with all the medical drama and extenuating circumstances.  It wasn’t easy and wasn’t always pretty….but we got out!  And got out often!  And had a variety of fun experiences!  From Disney World, to picking apples at an orchard, to surfing!

4)  Make our house better so that it would meet Cannon’s needs.  With a lot of hard work on my husband’s part…..this was achieved as well!  He knocked down a porch on the back of our house and enclosed it to make a new playroom for the boys.  A neighbor assisted us and this was completed in a few months over the early part of last year.  Then, we moved on to Cannon’s room.  Due to the space constraints, it was going to have to serve as both therapy room and bedroom.  So, we removed the closet doors and had a bed built inside.  Then, we padded the walls with gymnastics mats and the floors with rubber puzzle matting. We put up a tent and filled it with pillows along with putting his squishy cushion and ball pit in there.  All for supportive, sensory play.  I will share pics soon.  We took a far too long break and are now preparing to finish the room.  We need to get a special bracket for the ceiling so that we can install the therapy swing.  We also need to pad and upholster one more wall.   And get a new ball pit.  I can’t wait to finish this and share with all of you!

5)  The final goal was to continue with my original goals when I began the blog.  They were to update, educate, and inspire all who would chose to take the time to read it.  I know that I haven’t always been quick to update…. but for the most part….I think we covered that area.  The education part was not as much as I had hoped.  This year was unfortunately and unavoidably overwhelmed with all the constant medical drama.  But hopefully that will change in 2013.  I just so desire to give our readers a true understanding of what living with Autism is like.  To walk in my son’s shoes and see the world the way Cannon does.  So that you can understand his behaviors, act accordingly, and truly empathize with his plight.    The last portion of my goal….to inspire…..is totally up to the opinion of the reader.  Cannon is my hero!  To deal with all he deals with each and every day is amazing.  I can’t help but be totally inspired!  And I hope you are, too!

Voila!  5 goals mostly accomplished!  Pretty good if I do say so myself.  Which I do.  🙂

As for this year’s goals……..

 

I hope to finish Cannon’s therapy room once and for all, complete the homeschool year with AMAZING progress, and find more time and ways to implement the Son-Rise Program…..which will bring us closer and help him feel more accepted and loved.  Maybe even visit the Son-Rise training facility.  Get Cannon feeling MUCH better!  (Quick update:  His iron deficiency is kicking his little booty right now.  New labs to be drawn in the next couple of days.)  Get caught up on this blog and stay caught up!  We hope to put Cannon back in school next year…..if that feels right when the time comes.  We will continue to strive for a closer walk with our Lord.  And lastly (and this one is in homage to our current favorite show, Duck Dynasty) to be “Happy!  Happy!  Happy!’’  No matter what!

 

photo-43

(Here is one fun way a friend shared with me….to help focus on the positive and remember 2013 for all the blessings there will surely be!)

In conclusion, I want to share an amazing video with all of you.  My aunt sent it to me the other day and it just blew me away!  I have heard this guy preach before and knew he was dynamic.  But the message he shares in this clip……you have to hear it to believe it!   Please!  I beg you to take the time to listen!  If you don’t have 15 minutes now…..promise yourself you will come back later!  It will bless you like crazy!  I PROMISE!  He talks about the fascinating miracle that is us.  About the glorious plan of God for our lives.   And something called “laminin.”  You will be amazed to hear how at the very core of our being…..Christ is literally holding us together!  Start your year off right!  Be amazed at God’s beautiful creation….you!  And revel in HIS ability to love us in the incomparable way that HE does.  God bless you all in this new year!  Much Love!

 

https://www.youtube.com/watch?v=iYFHQzLp4fM&feature=youtube_gdata_playerSent