Saturday, April 4, 2015

Taking Chances...And Thinking Outside The Box.

My journey with Sam...those four simple words hold so much emotion that it is often hard to give an accurate description.  When Sam was diagnosed with Down syndrome I thought it was more than I could handle and then God added a brain injury and respiratory issues, heaped on a helping of hearing loss and speech issues, tossed in a swallowing issue, sensory issues and a weak immune system and then added hip dysplasia and Perthes to what appeared to be more than enough challenges. No where in the Bible does it say God only gives us what we can handle...God gives us way more than we can handle. 

Hmmm...but what God does give us is faith, grace and hope heaped with a big helping of love...and those 4 things make up the glue that holds me together...and sometimes...just barely.

I remember a blog reader who told me that Sam's Down syndrome and his other challenges were not from God but instead from the Devil and the evil in our world.  I believe that God created Sam just the way he wanted Sam to be.  If you read the Bible God gave his people both blessings and on earth has never been all happiness and rainbows. 

It's funny but I often feel that my journey with Sam is more about the person God would like me to become, lessons I need to learn and Sam is my teacher.

However...about 3 weeks ago I again found myself questioning God.  Sam has had a tough winter with 90+ days of illness, immune & auto immune reactions, pneumonias and his doctors felt that all the stress on his system caused a severe GERD reaction which was causing severe weight loss, pain, behavior issues and making Sam in general...miserable.  I had hoped that once we did the scopes and figured out that his issues were being caused by GERD, a simple medication would turn things around.  At first it seemed to be working and Sam began to eat again but then the mouth ulcers began to appear and it wasn't just one mouth ulcer, at one point Sam had 3 mouth ulcers at the same time.  We all know how much a canker sore can hurt, can you imagine having 3 active ulcers in your mouth. Each day and week Sam seemed to get worse instead of better and my heart broke.

I decided to visit Sam's naturopathic/holistic doctor in Neenah. We stopped at an Ihop to eat breakfast but the young man that was sitting across from me was only a mere shadow of the Sam I knew and loved.  By this point Sam had lost over 30+ pounds, he looked tired, in pain and sad.  He did not greet or attempt to talk with anyone including me in the restaurant.  He had a blank stare and just kept repeating over and over "My mouth hurts."  If he tried to eat he would drool and spit out food.  He would repeat that statement every 15 to 20 seconds and I closed my eyes and began to pray. I noticed the people in the booths around us staring at Sam with that look of pity, that look that says "Boy I feel sorry for you and having to put up with that all day and man am I glad my child isn't like that." I know it is probably not what they were thinking but in my mind and how I was feeling...I was sure of it.  I wanted to cry...I wanted to scream...I felt alone and frustrated and my heart and soul yearned for the old Sam, the healthy, stable Sam. The Sam that greeted everyone even when I didn't feel like meeting new people, the Sam that does chores and thrives on being independent, the Sam that talks to himself as he works through his day and smiles and laughs and is living, loving and enjoying life. I knew that Sam in his current condition could not travel and would be extremely difficult to have on vacation...and our vacation was only a little more than a week away. I thought if Dr. Vu was unable to help Sam I would have to tell Jeff that Sam and I could not go to Arizona.

I ate my breakfast as fast as I could and asked the waitress to box up Sam's...and he didn't care...and again my heart broke.  As I wheeled him into Dr. Vu's office he again seemed to be stuck on "My mouth hurts." He didn't want to be touched, he didn't want to participate, he couldn't follow a one step instruction, he was angry, he pushed back on his wheelchair every chance he got and he made everything difficult. This was not Sam...this was a child desperately trying to communicate in the only ways he knew how.  Yes, I wish he could just tell me what is wrong, I wish he could give me some direction, I wish he would help me help him more...and then I realized he was and God was.  In my research the night before I stumbled on The Amish Remedy for acid reflux. I felt the need to go see Dr. Vu and have him muscle test Sam to see what his body needed.  The muscle testing was hard to complete with Sam pulling away and being difficult at every opportunity but we persisted.  Sam's central nervous system was blocked as soon as we began testing so Dr. Vu had to figure out what was blocking it.  Sam's digestive tract was the block and when we began to focus on what the digestive tract needed more things came up, support of his hypothalamus gland, enzymes, immune support... To read and understand all of this appointment please read through my last blog post which covers muscle testing, Standard Process supplements and a different way of communicating with a person that is not able to verbally express what is wrong with them. In that post I explained the process but in this post I want to explain the feelings and what resulted.

So much with Sam is faith, grace, hope and love. The four things he exudes in every fiber of his soul and that he desperately tries to instill in me. It is always scary to take chances and to think outside the box. When I started my journey with Sam I believed wholeheartedly in so many things. I listened to doctors, therapists and teachers and believed they were the experts on Down syndrome and Sam. I cherished our relationships, learned so much through them and still do but the piece of the puzzle that changed was me and my coming to the realization that I was the expert on Sam and how his many different diagnosis affected him. I no longer just took direction...I researched, asked tons of questions, problem solved and looked for professionals that had that same drive.  Sam is an individual and a wonderful one at that...he is not any of his diagnosis...they simply change the way I work or think about things for him.

As Dr. Vu finished his examination of Sam we talked about the next week and what needed to change in Sam's medical routine.  Weaning him from the medication weighed heavily on my mind.  I had come to the conclusion we were harming more than helping.  Sam has never handled pharmaceuticals well so just changing medications did not seem promising.  I decided to believe that I stumbled on the Amish Remedy for a reason and I needed to try tested again.  I hoped the combination of the Amish Remedy and Dr. Vu's new protocol would begin Sam's healing process and allow us to enjoy our vacation.  I prayed for the grace to get through this all, quiet my anxiety, sooth my concern and comfort and heal Sam.  I knew that no matter what, vacation or no love for Sam, Sam's love for me and God's love for both of us would see us through.

I began giving Sam 2 servings of the Amish Remedy a day, morning and night. This was difficult because putting vinegar on mouth ulcers is not a pleasant reaction, but after a couple of sips it must have reduced the GERD enough for Sam to feel the difference and choose to continue drinking. I brushed Sam's teeth and mouth as much as 7 times a day with Tooth Suds.  I pumped in 30 capsules and tablets a day with apple sauce (Standard Process supplements and Protandim).  I gave him 2 tsp. of colloidal silver a day. I increased Sam's B12 injections to twice a week, injecting him on Wednesdays and Sundays. I offered food and water as much as he was able...and I prayed...a lot.

Sam's weight stayed above my goal of 110 pounds.  Eating and drinking took a long time and much encouragement but slowly I began to see Sam come back.  He began to complain about his mouth less and I was able to decrease the brushing to twice a day. He began to eat and drink more and I could ease my concern about dehydration or further weight loss. He began to talk again, to us and to himself as he worked through his day and thoughts. He began to want to go places and after a week or so on the new protocol we travelled to Arizona.  Sam followed instructions and he travelled well.

Here he is enjoying his vacation!!

Having fun in the pool!!

Brotherly love!!


Playing with Dad!!

Loving on Grandma!!

Selfies with Mom!!

Sam at the Brewer Game!!

Sam having fun with Mitchell!
Sam still can not be weaned from The Amish Remedy but he is down to once a day. He will be checked again by Dr. Vu next week to see if the supplements need to be changed. GERD still produces minor mouth pain but he has no more mouth ulcers. Taking chances...thinking outside of the, hope, grace and love and I've got my Sam back! So much to be thankful for this Easter. Wishing all my readers, their children and families a blessed Easter celebration!

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