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 challenges...life 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 it...faith 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 vacation...my 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!!

Family!!

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 box...faith, 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!

The Tough Days

If I told you that everyday in my journey with Sam is easy...I would be lying...however, everyday in my journey with Sam is precious...that I will always realize and forever be thankful for.

Sam has had a tough winter and by tough I mean 90+ days of illness, 2 bouts of pneumonia, auto immune reactions, immune reactions, sudden onset of GERD, mouth ulcers, severe weight loss, increase of OCD sensory issues along with daily smiles, giggle fits and some much needed sarcasm on my part to get us through.

Whew...and I thought the external fixator was going to be the toughest 4 months of my life...it was...this winter is running a close second...hmmm, maybe third after the time spent in the ICU when Sam stopped breathing and suffered his brain injury.  The really, really hard part is watching Sam go through so much and not really being sure if we are helping him or hurting him. I realize as a Mom and chief caretaker of Sam that it is my responsibility to watch, analyze, pick up on the small things, research, ask 8 million questions, drive his pediatrician crazy (God love that man), worry (wait not worry...pray instead), scream, cry and sometimes just hold him so close that I hope whatever is bothering him somehow transfers to me and I can deal with it, figure it out and make it go away. When Sam hurts, my heart hurts more and I will do everything in my power to make him feel better.

Our winter journey began at the end of our road trip to Montana when Sam caught the Enteriovirus 68 that swept across the country and claimed many innocent children's lives. After that virus he never got back to stable, it seemed like he had one virus after the next and when that wasn't enough he threw in some autoimmune reactions and then his body decided to try a different strategy and brought on GERD which led to a couple of pneumonias and a GERD medication that appears to be causing mouth ulcers that required narcotic pain medication but not before we had a full oral examination done under anesthesia so we could rule out a tooth problem. Yep...a whole load of crap and one little guy that still feels terrible, has lost 44 lbs. and just wants the same thing I do...stability. Not sick, not in pain, not unable to eat...just stable.

I decided to begin to wean Sam from the GERD medication to allow his mouth to heal, unfortunately his GERD symptoms decided to take on a life of their own and today was a very tough day which followed two sleepless nights of trying to deal with Sam's mouth pain issues and the hyperness that results from narcotic pain medication. Oh joy!

During my late night research I came across a couple of interesting facts about GERD, GERD medication depletes B12 which unfortunately Sam is already depleted on...so I decided to up his B12 injections.  GERD can be caused by too much or too little of stomach acid and GERD itself can cause mouth ulcers as well as the medication used to treat GERD.  Most nutritionists believe that GERD is caused by bacterial overgrowth.  I really liked this article on GERD written by a doctor with a strong viewpoint on nutrition versus medication. http://www.proteinpower.com/drmike/gerdacid-reflux/gerd-treatment-nutrition-vs-drugs-3/

So as I headed up to see Dr. Vu I had a couple of thoughts in mind.  I can treat bacterial issues with colloidal silver, I can up his B12 injections and I can try adding an organic Amish remedy for acid reflux as I wean Sam from the medication, but how do I get his body to stop over or under producing acid.  His diet is the anti inflammation diet and we have already further removed any potential foods that could cause reflux.

To say Sam was in a mood today...is an understatement of epic proportions.  Sam didn't want to see Dr. Vu or any doctor for that matter, Sam's mouth hurt and he was fixated on that and Sam was having congestion issues caused by his GERD symptoms which made him more uncomfortable and Sam was hungry and wanted to eat but his mouth ulcers made that difficult too. Sam fought both Dr. Vu and I through the entire muscle testing segment.  For those who don't know Dr. Vu he is 

Vu Nguyen, D.C. and has been working in the Fox Valley area since moving to Neenah, WI in 1998. He received his Doctorate of Chiropractic degree in 1996 from Palmer College of Chiropractic in Davenport, IA. Dr. Vu works to improve his patient's whole health with chiropractic adjustments, physical rehabilitation, nutritional counseling, lifestyle modifications, work modifications and prevention education.  He is a Certified Chiropractic Spinal Trauma practitioner and Certified in the Cox Flexion/Distraction technique for low back and radiating leg conditions caused by disc herniations. Dr. Vu will treat the neck with a specific adjustment called the N.U.C.C.A. technique that uses low force and low pressure that does not produce the "cracking" in the neck. Dr. Vu also performs treatments for allergy and sensitivity problems using muscle testing, NAET, Standard Process supplements and without the use of needles or medication. Dr. Vu works with his patient's as much as necessary not to just improve their pain, but improve all aspects of their lives.

 

In our world Dr. Vu helps Sam's body communicate what it needs or what it is struggling with when Sam is unable to.  He does this through muscle testing, and I know someone is saying "What the heck is muscle testing?" Muscle testing is something you have to experience to really comprehend and yes it is different than anything your traditional doctor will do but it has been unbelievably accurate and helpful in figuring things out for Sam.  Here is a video that describes the process:

 

 

Well if you are still with me, you are beginning to think outside the box.  Now lets take it one step further and add that when we test Sam, since he will not cooperate with this, Dr. Vu tests through me while I hold on to Sam.  Are you freaked out yet??  Sooo...instead of answering all the questions swirling through your mind about what appears to be an unreal way of reading the body I am going to instead tell you what Dr. Vu figured out with Sam today.

 

Before I do that I will tell you about a past experience.  When Sam had the external fixator on his hip we had issue after issue with pin problems, infection, granulation tissue and Sam's body appearing to fight this thing with all it's might.  We had tried antibiotics, manuka honey, different dressings and ointments to no avail, Sam continued to have black flesh, granulation, infection and then Dr. Vu treated Sam for a body/brain imbalance and an issue with Sam's body fighting it's own RNA and miraculously the last month of Sam's external fixator was uneventful and his pin sites looked the best they had during the entire four months.

 

Soooo today when Dr. Vu began to test he first checks to see if Sam's nervous system is functioning and his was blocked.  He then determines what is blocking it and it was Sam's digestive tract. As he tested further he determined that Sam needed enzymes but more importantly he needed some supplements to help his brain and nervous system to work with his digestive tract, basically his brain wasn't communicating properly with his digestive tract (my mind pictures his brain not getting the message through to produce or not produce stomach acid).

 

So, we added these supplements to his protocol:

 

Multizyme:   Multizyme contains digestive enzymes to support the proper breakdown of proteins, carbohydrates, and fats.

• Enzymes provide support in the gastric and intestinal phases of digestion
• Supplemental pancreatic enzymes support pancreatic function

Hypothalmex: 
Before detailing Standard Process Hypothalmex, people have to understand the importance of its impact on the hypothalamus gland. This gland keeps everything running in a smooth way, even while sleeping. Despite its size, this gland is very powerful and can be found beneath the thalamus on both sides of the third ventricle of the brain. In order to be able to keep up with bodily changes, the gland communicates with the other organs in real time. In fact, it actually coordinates blood pressure, electrolyte and fluid balance, body weight that should be kept within normal ranges, depending on the internal and external conditions, as well as body temperature.
In addition, hypothalamus secretes a variety of hormones which are able to control any gland contained by the endocrine system, thus receiving the cue from chemical signals which are sent throughout the organism. These hormones are then released in the bloodstream in proper times and amounts and later stimulate growth of adrenal gland while also promoting protein synthesis every bodily cell.

Chlorophyll:  Chlorophyll Complex supports multiple body systems.

• Provides antioxidant activity
• Supports vascular health
• Supports the body's normal immune system function
• Provides cardiovascular support
• Maintains skin and hair health*

Black Current Seed:  Black Currant Seed Oil contains the essential fatty acid gamma-linolenic acid.

• Encourages proper eicosanoid synthesis (central nervous system communication)
• Supports the body's normal tissue repair process
• Supports normal blood flow
• Supports healthy immune system function*

Cataplex AC:  Cataplex A-C helps support immune function and maintains healthy cells and tissues.

• Helps maintain healthy mucous membranes
• Supports a healthy immune response
• Provides ingredients with antioxidant activity
• Supports the hematopoietic system
• Helps maintain healthy epithelial and connective tissues
• Contains a combination of key ingredients from Cataplex A and Cataplex C along with Echinacea

Symplex M:  Symplex M supports the healthy function of the testes and the adrenal, pituitary, and thyroid glands.

• Provides uniquely derived nucleoprotein-mineral extracts that support cellular health
• Contains a combination of key ingredients from Orchic PMG, Drenatrophin PMG, Pituitrophin PMG, and Thytrophin PMG*

RNA:  Ribonucleic Acid (RNA), derived from yeast, supports cell replication, growth, and protein synthesis.

• Promotes healthy cellular growth and development
• Supports healthy cellular functioning*

Our goal is to wean Sam off the GERD medication, by using the Amish Reflux Remedy which includes organic apple cider vinegar, ginger and garlic, all things his body can digest without adverse reactions.  Use the supplements to kill the bacteria, support the immune system, improve the central nervous system communication, boost the brain and hypothalmex function, regulate the thyroid and pituitary and help promote healthy cellular function.  Use colloidal silver to further kill bacteria and keep the system clean.

We leave for Arizona in a week or so and I hope and pray, and pray and hope this all works and Sam gets to enjoy his vacation.

Sam Mayer Update

It has been a while since I have had time to blog.  For those who are new to the blog, I share my journey with Sam, the good, the bad and the ugly.  Sam is 13, he has Down syndrome, a brain injury, aphasia/apraxia, dysphagia, bilateral hearing loss, respiratory/immune issues and at the age of 10 we added hip dysplasia and Perthes.  But none of that...all of those labels...describes the amazing little man I spend time with each day and in my eyes he is none of these things...he is just uniquely and perfectly...my Sam. Since his diagnosis of hip dysplasia and Perthes Sam has undergone 3 hip surgeries, including a double osteotomy and an external fixator for 4 months.  The first surgery put him in a body brace for 7 weeks, the second was an external fixator (a huge halo device that was externally mounted but went through his skin, muscle and into his bones and required daily pin/medical care.)  We have had a heck of a journey and 3 years of rehab.  About 3 weeks ago Sam again lost 60% of his mobility.  I noticed a change in his gait, his movement decreased and his right leg showed physical signs of weakness...and his right leg is his good leg.  His left leg is the one with Perthes and is in a flexed position which causes him to walk on his tip toe on the left side. I have watched Perthes slowly destroy and twist Sam's perfect gait that we worked so hard to achieve after his brain injury had weakened his right side.  But Sam and I don't give up...so I began the quest to figure out how to help Sam regain his mobility yet again. I have noticed that as Sam compensates his gait to accommodate his hip, his right ankle is pronating inward severely causing his knee and ankle to be out of alignment and twisting. His altered gait is also twisting his spine and causing his feet to change shape.  Sooo...after checking to make sure the hips were stable I decided to work on finding someone who could help shore up his good leg so that we can hold on to his mobility and lack of pain for as long as possible.  Sam's final option for his hip is a hip fusion or total hip replacement. Due to Sam's extreme flexibility and low tone he is not even considered a good candidate for a hip replacement.  The hip fusion surgery would put him back into a body brace...this time for 4 months.

Today was one of those days that tested me...what have you learned from your life with Sam??? Sam continues to have mobility issues so upon referral from his pediatrician we went to see our third orthopedic surgeon.  To say I dreaded seeing another surgeon would be an understatement. As we sat in the room awaiting his arrival the familiar doubts entered my mind but I pushed them aside and decided that I'm here for a reason, it is always good to get a fresh pair of eyes on a situation...so let's hear what he has to say. I had given the nurse Sam's hip x-rays because in my mind a doctor should know the whole picture, what is happening from head to toe that is causing the issue. I chuckled when she asked me why I had brought a hip x-ray in for a knee/ankle appointment?  Hmmmm....could it be because I have always looked at my child as a whole, I don't piece him out, I don't only look at one area at a time but I observe his overall function.  This observation is something Sam taught me.  Sam doesn't express pain in words...he instead moves differently, moves less, or you notice a change in gait, in his stance, in his expression. You observe his frustration level, his breathing, his....just being. I believe this is a lost art in our medical fields. We think all information can be obtained through questions and speech...not so much with a child that has processing/speech issues.  We rush through appointments to get more people in but at the same time as we rush...we miss crucial pieces of the puzzle.  In my life with Sam so much is about time. Giving him time to process and answer, giving him time to complete his work/chores, giving him time to practice his speech even if he repeats things over and over and taking time to show him, teach him, talk to him...just be with him. I spend a great deal of my time observing Sam, how he moves, how he breathes, how he understands and I try to incorporate what I learn into how Sam and I interact.  Some days...I fail, miserably...but I try to remember that my frustration can't come close to how frustrated Sam must feel when he speaks but people don't understand what he is saying, or he struggles to pull out the right words, or he is unable to convey what he is feeling or thinking, or he hears only a portion of what we say or worse yet when someone underestimates his understanding and ability, spending more time thinking about what he can't do instead of working with him to figure out how he can do it.

As we waited...Sam, the boy who perceives so much so well...knew I was nervous, knew I was worried how he would react to yet another doctor.  He pinched me to get my attention and then proceeded to smile and make a face at me.  I smiled and looked away...so he said "Uh Mama" and I turned to him playing with his eyelashes on one side and his finger in his nose on the other. I laughed and said "So you are willing to misbehave to get my attention." He laughed and said "Talk to me." So we talked about the classical music playing which I said was "Bach" and Sam said "No, not bad...pretty." We talked about the picture of the foot on the wall which I said showed the bones and muscles...and Sam quickly showed me his best Hulk Hogan pose. I asked him what he wanted to do when we were done at the doctor, he said "Go home (and smiled)...um McDonalds??...zoo...Daddy work and go to movie."  I said "Woah, that's a lot for an afternoon." He said, "Good evening" which I interpreted as meaning we can do some in the evening too because he followed it with a smile and strong nod of his head.  By the time the doctor walked in we were both smiling, laughing and ready for whatever might come our way.

The surgeon shook Sam's hand and I love when a doctor will talk to Sam first and then me. He examined Sam's ankles and knees and watched him walk back and forth. He agreed with my diagnosis and Sam's need for a possible ankle orthotic and knee brace.  As he explained that Sam's posture and issues were extremely unique I only smiled...thinking to myself...you have no idea just how unique this little man is.  Although he was not able to help me, he suggested another doctor and helped me put the last pieces of my thinking together...sometimes we meet people for the sole purpose of bringing us to the next level of our own problem solving.  He confirmed that Sam needs someone who can work closely with him to design and fit him with orthotics and a brace that would fit him perfectly and would give Sam a sense of comfort or stability so that he would want to wear them. Sam is a perfect gauge of if something works or not.  He has high sensory issues so he never wore a hat but when he wore a baseball hat with a bone conduction hearing aid on it he found out he could hear and understand better so he continued to wear the hat until his hearing improved and then he promptly handed it back to me after wearing it for 3 years. When we rechecked his hearing both ears had improved to the bottom of the normal range and a hearing aid was no longer needed.

Soooo....I need the guru of orthotics.  Someone who is keen on observation, ready and willing to take on a challenge, thinks outside the box and can fit and alter an orthotic to Sam's twisted form.  I need someone who understands movement, non verbal communication and has the patience of a saint.  As I talked with the doctor, I had my Sam moment...the surgeon was talking about a doctor from Children's, someone we had seen before...and my mind...well my mind was remembering a conversation with a PT about a fellow PT that was unhappy with standard orthotics and went back to school to develop his own.  I thanked the doctor, took the name and number of the doctor from Children's and then promptly called Sam's PT from the parking lot to get the name of the PT who just may be my knight in shining armor.  Sam stayed quiet while I left the message and then when I put down my phone said "Okay, all done...about McDonalds???" I said "Sam, thank you for all you have taught me."  Sam said "What the heck...over der...I see Culvers" and we both walked into Culvers laughing.

I love this crazy, tragic, awful, BEAUTIFUL life! Stay tuned for next Tuesday's adventure with the PT and custom orthotic fitting....oh joy!!

An Overview of NACD and How They Work With Children With Down Syndrome.

Some of my loyal blog readers brought to my attention that I never finished my post on the NACD videos.  Well...life happened!  Now that life has stabilized a bit...let's get back to that.  To view my post on the first 5 videos click on this link.

As a refresher to get started on the next six videos here is a little information about NACD.  In my blog post I often refer to Sam's home program through NACD, and his evaluator, Ellen Doman. Sam has been on program with NACD since he was 18 months old. I originally found out about NACD as I was researching Down syndrome and brain injury and I came across a letter that Bob Doman (the founder of NACD) had written to parents of Down syndrome children. Bob's letter spoke to me because it was the first time I heard anyone say that a child with Down syndrome has an unlimited potential. I often wondered how the medical professionals I had met when Sam was a baby could give me such bleak predictions of his future when we hadn't even tried to work with Sam. As I researched further I appreciated the fact that their programs were individualized to the child and their family situation. I knew early on that Sam was not just dealing with Down syndrome, he also had a brain injury and other medical issues related to his respiratory/immune system and I was already questioning his hearing. I really needed someone to help me with Sam from head to toe. With the help of this amazing organization Sam exceeded the medical professionals opinions by the time he was 3 years old and at that point my husband and I could finally focus on Sam's unlimited potential.

In this video Bob talks about speech...whew...this is a big one for Sam.  When we think of speech we have to remember the two components, speech and language.  Speech is how you articulate and language is what you say.  Most children with Down syndrome struggle with language, Sam struggles with speech and language. When looking at speech you have to consider the auditory issues first, in Sam's case a bi-lateral conductive hearing loss was not helping his speech production.  He couldn't hear speech sounds well.  Structure and function is the next area to consider, this includes jaw placement, pallet size, congestion, size of tonsils, size of tongue, tongue movement, jaw strength, chewing and lip strength. Oh...where do I begin with Sam??  Basically, Sam had issues in all of these areas.  Sam's oral cavity was small, Sam's tongue was large (being able to touch your chest with your tongue is not a benefit for speech unfortunately), Sam did not know how to chew and he began life swallowing solids whole (a benefit when it comes to having to learn to swallow tablets, not such a great benefit in preventing choking, aspiration and producing good speech sounds), Sam had a ton of congestion which is why he also had respiratory/immune system issues (removing dairy was the first step), Sam's tonsils took up 70% of his airway uninfected so when he got sick he lost that airway which led to stopping breathing and oxygen deprivation/brain injury.  Sam had his tonsils and adenoids removed at 11 months and has had his adenoids shaved two more times. Infants tend to give big ole wet, open-mouth kisses, Sam  did this until the age of 4 years old, his lip strength was very weak.  Sucking on a straw, a puckered kiss and candle blowing were dreams we had and our NACD program assisted us in all of the areas described.

The next video deals with motor skills.  NACD feels there is a direct correlation between motor skills, cognitive function and efficiency of the central nervous system.  I can't express enough how important this area is.  Often times children with Down syndrome walk later and therapists don't always follow the developmental steps of tummy crawling, creeping, walking, running and jumping. In Sam's case Down syndrome probably caused low tone and his brain injury caused right side weakness similar to what you would see with a person that has had a stroke and caused a dysfunctional central nervous system. Sam could touch a hot surface and not realize it was hot until he was burned. Sam did not react to cold either. Sam would use his head to help him roll but he didn't try to crawl.  Sam could roll over his right arm and never realize it was in a bad position even risking dislocation. We had to start at the very beginning and in Sam's case this meant deep pressure, hot and cold compresses...basically letting the brain know that there was an arm and a leg on the right side and it needed to use them. From there we moved on to tummy time, cross pattern tummy crawling which meant two of us would move Sam's arms and legs for him to help his brain learn the pattern. Then we moved him to an incline surface to help facilitate forward movement with the patterning. Sam had been in 0-3 since he was 6 weeks old and at 18 months he was not tummy crawling, he was not moving beyond his rolling, after two weeks of our NACD program Sam was tummy crawling. The rest of the developmental steps took time as we assisted and strengthened Sam with the right side of his body and at 3 1/2 years old Sam began to walk independently, something we were told he may not be able to ever do.  We worked on his gait, his walk, his run and coming up and down stairs.  At 5 years Sam had a beautiful cross pattern and could walk, run and go up and down the stairs, however he never learned how to jump.  Possibly that was an indication of our future diagnosis of hip dysplasia and Perthes.  Those two diagnosis destroyed the beautiful gait we worked so hard to achieve but that foundation has given him a better chance at regaining the mobility he once had.

The next video deals with social development.  This was a major concern of mine in regards to Sam. I struggled with the concept of homeschooling and the perceived lack of socialization.  Hmmm...well let me tell you...I was wrong.  I had thought that if Sam was in a school environment he would learn to become social by watching the other kids.  A few problems with my thinking, Sam had an undiagnosed hearing issue, Sam's global development was that of a 2 year old in a class of 4-5 year olds and Sam had other neurological issues.  Let's be Sam for a minute in a classroom setting.  A teacher is up front talking of which Sam is only hearing bits and pieces (think of the teacher talking in Charlie Brown), children approach and ask questions that Sam may hear parts of but is unable to process the number of words they are using, when Sam doesn't respond they learn not to talk with him. Sam becomes isolated, unsure of what he is expected to do or how he is to respond...he begins to withdraw, stim more and becomes frustrated, acting out his frustration with negative behavior. Now change to one on one communication with Mom (someone who loves him and isn't going to give up).  First I had to enter his world, do things he did so he could see I was interested then we exchanged sounds and I added a speech sound, soon those exchanges became more frequent and the sounds became words. Aphasia and speech issues made this exchange, our communication, a slow and cumbersome task....but I wanted Sam to be social, to communicate.  Sam still struggles with back and forth communication but I don't think anyone who meets him would say he isn't social.  Sam loves to talk at people, we are working on talking with people...but all in all, not bad progress for a child we were told may never speak due to his brain injury, small oral cavity and large tongue.

The next video deals with one on one interaction. My life with Sam is based on one on one interaction because when you put Sam in a group he chooses to withdraw, he chooses to limit his frustration by not participating. I often wonder what Sam would be like if I hadn't spent the years I did working with him one on one....was it easy....no....crucial....yes.  Sam has spent most of his life being significantly behind his peers including his peers with Down syndrome due to his complicated neurological profile and sheer stubbornness, a very strong family trait, thankfully I was blessed with it too.  Sam is the kind of guy that doesn't really work at something unless he wants to or sees a reason to.  My son Ben was the same way, the difference...I could reason with Ben, we could talk about it and come to an agreement...not so much with Sam. With Sam's hearing issue, auditory processing level and neurological issues from a brain injury...he needed one on one more than most.  As Bob says when you work one on one you alter your approach as needed by how your child reacts...how does a teacher do this in a class of 10, 15, 20 or 30 all indicating very individual and different needs?  It is impossible.  My thinking with Sam was that we had a lot going on and if I had any hope of reaching him, teaching him, helping him reach a better potential he required good, strong, productive one on one.

The next video is about educational placement...a thought process I struggled with for years.  Considering so much of Sam's life was different than what other people had experienced...our NACD program was intense, Sam had a lot of therapies, doctors and doctor appointments I kinda wished...kinda hoped school was going to be easy.  Yeah, not so much. I just wanted the "easy button" in one area and instead my NACD evaluator was trying to convince me that the best placement for Sam would be homeschool. Ummm...not even remotely what I was thinking or wanting or willing to consider. I tried pre-school but Sam was sick more than he was in attendance. NACD's gentle suggestion was becoming a strong plea and I was beginning to listen.  I hated our hospital stays and it seemed we were becoming frequent flyers at Children's, a designation without any perks.  I kinda thought all the illness and ICU stays were God's way of changing my mind.  Soooo...I began to think about homeschooling and I hated the very thought of it but slowly, ever so slowly I was beginning to think outside the box and realize that for Sam with his respiratory/immune, hearing and auditory processing issues...it may be the optimum placement.  I took the jump...and it was the best thing I ever did.  Now I'm not going to tell you that each and every day I enjoy homeschooling Sam, if I am honest there are days I would pay that little yellow school bus to come and carry him away but in all honesty...this was the best thing for Sam and me (yes, I said me too). Sam returned to school when he was 10 and was placed in a kindergarten class to work on his speech and language, he was very popular since he was the biggest kid in class, but one month in and his diagnosis of hip dysplasia and Perthes came about and I decided it was another sign that Sam should return home.  The important thing that Bob stresses is that you need to look at your child as the unique individual that they are and figure out what is the optimum placement.  Half days, full days, public, private, typical classroom, special ed. classroom or homeschool and don't be afraid to try different placements. I did and it helped me figure out the right one for Sam. The route I took was not easy and is not for everyone...but it was the right one for Sam.

The next video is a discussion of Down syndrome and Autistic tendencies.  I agree with what Bob presents in this video but I also have an area that I will agree to disagree.  I wholeheartedly believe that any of our children with Down syndrome can have autistic tendencies, low processing which can create a rut where the child gets stuck.  Sam was stuck at a 3 in processing for what seemed like FOREVER! His behavior was stimmy and erratic and as a parent it would have been easy to throw in the towel and say "I give up".  He was at this level while in school and would often flap, play with his eyelashes, get too close to things and any number of other stimming behaviors when he was bored or lacked any kind of engagement. I'm sure over time he could have been given the label of autistic based on his behavior but Sam had focus when engaged, Sam could stay focused for short periods and he had some social interaction behaviors.  I have met other children with Down syndrome that did not have any focus, refused social interaction, had excessive stimming and have the label of Down syndrome and Autism.  I understand that any label is an umbrella of symptoms, Down syndrome can mean speech, hearing, tone, joint issues but each child is different and may not present with all these issues.  Autism describes an umbrella of symptoms too and yet each child is unique in their challenges. When a child's challenges become excessive, when they don't move forward as fast or far as other children even though they receive the same input a parent begins to sense that something else is wrong, something further is involved. Getting a multiple diagnosis is both a blessing and a curse.  As a parent you feel better knowing that your child has unique challenges other children may not have but it is also easy to give up, to feel hopeless to let their challenges become the focus.  When Sam received multiple diagnosis I had that sense of relief that he was different, more unique...but in my mind it just meant that we needed to be more creative, think further outside the box, question and research to figure out how to make things work for him. Having added a physical disability to the picture makes everything more difficult...but not impossible.  I am not going to tell a parent that their child does not have a multiple diagnosis but I will tell them what Bob is saying that everyone, no matter who or what, can function better.  I may not be able to get Sam into the super kid category but I will get his potential higher, he has already surpassed all medical expectations...for us the sky is the limit.

When It Rains, It Pours!!! NAET, Road Trip, Lingraphica Speech Device, Audiology, PT, OT, Speech...

I have had a lot of inquiries and people checking up on why I haven't been blogging.  I promise you it is not a lack of topics or things to report but instead...lack of time. Sometimes life just gets so hectic and everything seems to happen at once and you feel as if you are being pulled into 20 different directions.  I have been riding a rollercoaster of grief as I continue to come to terms with the loss of my Mom and my best friend. I have had to refocus on both Sam and my health needs, physically and mentally which meant more doctor appointments than normal and a renewed commitment to taking some much needed breaks, taking some long walks and praying for guidance, resilience and patience.

During the 4 months of Sam's external fixator and the loss of my Mom I noticed that I wasn't feeling very good.  I know stress can do terrible things to your body and I was pretty sure I was in trouble.  I was beyond tired. I went to sleep tired and I woke up tired and yet I had difficulty falling asleep or staying asleep.  I noticed my hair was thinning first in the front and then in all areas. I also had an inability to stay focused on something for any length of time.  I would start something and never finish or I would think about all the things I needed to do but didn't ever seem to get moving on them. I felt bloated all the time (some days I would have swore I looked like I was 6 months into a pregnancy) and noticed that I had gained more weight in my midsection.  I wanted to eat more at night than anytime during the day. I often woke up with my heart racing or feeling jittery. I was getting sick and catching things more and more easily, often times easier than Sam (who has a weakened immune system). I would often feel overwhelmed by simple day to day tasks and I had difficulty thinking things through. My therapy of writing which normally comes to me without much effort was tedious and I didn't seem to be able to write from my heart as effortlessly as I had in the past.

I knew if I went to a traditional doctor and told them what had been happening in my life, it was likely I would hear that I was suffering from depression, anxiety, maybe a thyroid issue or something like chronic fatigue syndrome.  I was surprised to see my blood pressure much lower than what I would normally see during stressful times.  A good friend of mine had told me about a NAET doctor that also did muscle testing along with sensitivity testing.  I chose to go see this doctor while Sam still had the external fixator and we were struggling with keeping the pins sites stable.  Sam's body just didn't seem to like the external fixator and was throwing everything at it it could including black flesh, excessive scar tissue, over healing, collapse, granulation tissue, granulomas and just plain looking bad. I made progress with Medihoney but could never quite get them looking stable.  Both Sam and my medical issues changed when we met Dr. Hoan-Vu Nguyen, whom we refer to as Dr. Vu.

As I explained in a previous post:  NAET is considered a journey to better health. I have long felt that most medical professionals are taught to look for and treat symptoms rather than to look further to find their causes. You can click on the NAET link at the beginning of this paragraph to learn more.  The process uses a computer program and analyzes through the central nervous system.   Sam was found to have the following sensitivities:  RNA, Vitamin D, food coloring, soy, selenium and magnesium. Through muscle testing the doctor figured out his pituitary gland was not functioning correctly which would make sense since Sam was recently diagnosed as hypothyroid and the pituitary gland stimulates the hormones for the thyroid.  Hmmm...we knew Sam had a soy allergy and Vitamin D makes sense since he has always had a deficiency in this area and now we learned his body didn't know how to use Vitamin D properly.  Vitamin D and magnesium are both essential for good bone health.  It all kinda makes sense doesn't it.  Sam's biggest sensitivity was RNA, Ribonucleic acid (RNA) is a ubiquitous family of large biological molecules that perform multiple vital roles in the coding, decoding, regulation, and expression of genes. Together with DNA, RNA comprises the nucleic acids, which, along with proteins, constitute the three major macromolecules essential for all known forms of life.  Seems like a pretty important process that a person should not have a sensitivity or issue with.

I didn't have any major sensitivities like Sam but I showed a brain/body imbalance, hormone/estrogen issue, minor sensitivity to bacteria, salt, acid and chocolate and through muscle testing my adrenal system was no longer working properly.  When I did further research all of my symptoms would point to adrenal fatigue or failure.  Instead of going on an anti-depressant or anxiety medication or just treating my thyroid, Dr. Vu got to the core of my problem.  Along with correcting my brain/body imbalance and hormone issue I began to take Standard Process supplements for my adrenal system.  I noticed a difference shortly after taking them, like waking up and actually feeling rested.  As I have continued to treat my adrenal gland I have noticed that I have more energy, can stay on task and my normally busy schedule does not seem so overwhelming. As I began to take the supplements I noticed I felt nauseous at times and brought that up to Dr. Vu, after further testing he suggested a digestive helper.  To treat my adrenal system I began taking Standard Process Adrenal Complex, Immuplex, Drenatrophin PMG and Zypan for digestive help. You can click on each of them to learn more about the supplement and what it helps to support.

I feel better and find myself making better health and dietary choices. I am exercising again, drinking more water, cleaning out my house and closets without feeling fatigued, blogging and have stayed healthy since starting these supplements.  Sam is off his thyroid medication and we will be doing blood tests to see what his thyroid and Vitamin D levels now look like.  He is moving through his rehab process and no longer takes any pain medication for his hip, this is remarkable after having been on narcotic pain medications for the last 6 months.

Sam is walking with his walker throughout the house and only uses the wheelchair for distances outside our home.  Here is another recent accomplishment:

This summer we took another road trip, this one to regroup, reconnect and relax after a very hectic year of medical issues and the loss of my Mom.  I took my Dad, sister, Danielle, Isabella (Danielle's friend) and Sam to North Carolina.  We had a great time and enjoyed our time together.  The trip was in June while Sam was only 4 weeks out from his third hip surgery so he was pretty much wheel chair bound at that time but the pool was wonderful for his rehab and the ocean always helps lift his spirits.  Here is the beautiful home we rented for the week in Duck, North Carolina.

The girls and Sam loved the pool.

Even Aunt Wendy and my Dad found the trip relaxing!

Wendy and I took many walks by the ocean.

 The ocean is always calming to me.

 Usually my niece Brooke is on our road trips and always takes a feet picture.  This one is for her.

 Sam found the perfect place to relax! 

Being in a wheelchair didn't keep him from enjoying his vacation!

On one of the few days that it rained Grandpa played cards while Sam worked on a puzzle.

The girls played a game!

The ocean walkway was only 5 houses away from us.

Sam and I would walk down and check everything out in the early evening.

 Sam even got his toes in the sand!! 

I knew sitting at the ocean would bring back memories for my Dad of doing this very same thing with my Mom when they vacationed in Florida.  We all shed a few tears but I had told my sister that if we saw a dolphin it meant Mom was there with us.

And sure enough a dolphin surfaced at least 10 times but only when we took my Dad to the ocean!

 Sam had fun taking pictures with my camera!

 

He even got Grandpa to smile through his tears.

 AND SAM LOVED THE POOL! 

He spent a lot of time under water!

He also like the hot tub! Good to soothe the hip after all that swimming and diving.

 Sam and I went on walks in the area and always found interesting spots to take a picture!

And some of the most unusual flowers!

 Sam was so happy to be out and about!

 Sam loved the big surf board! 

Like me, Sam finds the ocean comforting!

I wondered if he was imagining himself out there surfing!

Whatever he was thinking...it made him happy!

The girls enjoyed the pool, the beach and riding bikes into town!

 At night, Wendy and I would head to the beach to search for crabs. So much fun to watch them scurry around.  Sometimes I think they can move sideways faster than going frontwards or backwards. 

Some of them were pretty big and it was fun to scare Wendy by telling her one was coming at her.

There were crabs of all sizes! 

 Some great pictures of the girls loving the ocean!! 

One of my favorites!!

Bella and Danielle have been friends since elementary school!

 We laughed a lot as Danielle tried to get Bella's hair out of her face for the picture!

Having fun!!

Then they got creative and wanted to do the heart photo!

 It was a great day!! 

 

 Fun afternoon with my girls!! 

Another favorite picture taken in front of the house we rented! 

Grandpa and the girls!!

 Returned later to the ocean to try to surf those big waves! 

 They had a lot of fun and spent a lot of time fighting not surfing the waves. 

 Even found a message in a bottle.  Wendy and I were so hoping it was from Mom but it was written in red crayon by a child and said "We sin but God forgives us". 

 Enjoyed seeing the squadron of pelicans!

Wendy and I collected a lot of shells along with our message!

Loved our time in North Carolina!

Due to Sam's limited mobility and the houses being on stilts in North Carolina we had to figure out a way to get Sam up and down the steps.  Sam weighs approximately 130 lbs. so this was no easy task but if there is a will there is a way and Bella and I got quite the workout while on vacation.

When we returned from our vacation I felt relaxed and re-energized and one evening as I was doing some research on the internet I came across a free trial of a speech device for people who have had a stroke or brain injury.  The website is Aphasia.com.  I have often looked at speech devices but didn't want a device to talk for Sam.  I'm not sure how I came across this device....guessing divine guidance...but the Lingraphica device not only speaks for the person but it has a lot of speech exercises and practice sessions which is what really interested me. As I looked at the device I realized I had downloaded some apps on Sam's Ipad that he loved from this company.  The pieces of the puzzle were beginning to come together.  Sam is 12 years old but the combination of Down syndrome, brain injury, apraxia, aphasia, hearing and processing issues have kept Sam delayed in speech production.  Sam has certain phrases that are very clear and can be understood by most people.  But after working for years with Sam I know his processing and word retrieval issues cause him the most difficulty.  I really think Sam knows what he wants to say and understands much more than what he can demonstrate through speech but retrieving the right words and getting them through a tangled oral motor system is really, really difficult.  Sam's clear phrases of "I want water please Mommy dear" have come from years and years of practice.  Due to Sam's hearing issues he has always paid more attention to a person's mouth, like lip reading, than overall facial expressions and because he struggles with oral motor issues seeing how proper sounds are made helps him to better form his words.  The Lingraphica app on the Ipad that Sam was drawn to showed a mouth up close at it said different words and phrases. When you find things that draw Sam in you run with it.  Another issue due to Sam's hearing has always been active listening.  It is work for Sam to hear and process so he often chooses to bypass this and just talk at you not with you. He shuts down if you ask him questions but it doesn't mean he doesn't understand or can answer correctly.  I have found that Sam can't verbally produce the right answer but given a picture or word choice he can answer correctly about 95% of the time.  Here is some information on the apps I use with Sam.

TalkPathSM Suite of Therapy Apps

The Lingraphica TalkPath Suite of Speech Therapy Apps for your iPad gives adults with aphasia or apraxia therapy activities designed to help rebuild speech lost due to stroke or other brain injury.

Developed by a team of speech-language pathologists and Lingraphica, the TalkPath Suite of Speech Therapy Apps moves you through specific skills helpful in the quest to redevelop speech. With easy-to-use unique features common to all of the apps, the TalkPath apps can be used with the guidance of your SLP or on your own. 

TalkPath apps, designed specifically for adults, use proprietary content and media created by Lingraphica for use in our speech-generating devices, the AllTalkTM and the Touch TalkTM.  The icons used in the apps “project” -- which is a methodology we developed over years of research and experience working with adults with aphasia and apraxia -- to stimulate your senses and prepare you to complete a task. In addition, verbs in the app are animated to more clearly demonstrate the word and add proper context. All voices in the TalkPath apps are recorded, adding to the friendliness and usability of the apps.

The TalkPath Suite of Speech Therapy Apps were developed with the guidance and input of Lingraphica’s clinical review board and our Chief Scientist, Richard Steele, Ph.D.

The TalkPath apps are available for purchase and download at your convenience from the App Store.

1. Lingraphica TalkPath Reading - Available on the App Store

   
   With three types of exercises, the TalkPath Reading app is designed to help rebuild and improve reading skills for adults with aphasia or apraxia. This app provides you with basic word, letter, and phrase identification, and word and picture matching exercises, all designed to be of help with language challenges.

2. Lingraphica TalkPath Writing - Available on the App Store

   
   Designed to improve basic spelling and letter-to-sound recognition, the TalkPath Writing app works on fundamental skills helpful for communication as it moves you through three levels of activities in two sets of exercises.

3. Lingraphica TalkPath Speaking -Available on the App Store

   
   The six types of exercises in the TalkPath Speaking app are designed to help rebuild your memory, word retrieval, and spontaneous speech through naming exercises, repetition activities, and flash card naming activities.

4. Lingraphica TalkPath Listening - Available on the App Store

   
   Through activities such as common pair matching, opposites identification, object identification, yes and no questions, and Wh- questions, the TalkPath Listening app helps with word discrimination, word association, short-term memory, and other skills useful to help rebuild speech.

The device itself can be individualized to the person who will be using it which I think would draw Sam in further.  Sam's speech therapist has been trained by Lingraphica to work with Sam on the device and we will start this next week.  Now the real test will be Sam and does it draw him in or does he decide not to use it.  I will let you know what happens.

Speaking of Sam's hearing and listening...I recently took him to his audiologist to have his hearing tested.  Since Sam's last surgery he has been refusing to wear his BAHA hearing aid which is attached to his baseball cap.  As usual Sam does not tell me why he won't wear it his behavior just indicates that he has his reasons...now as Mom I need to figure out is it behavior, improved hearing or a problem with the BAHA that is causing Sam to not want to wear it.  What I wasn't prepared for was the idea that Sam's hearing had improved to the very lowest normal range.  The BAHA would be too loud but yet Sam would still require some type of amplification to pick up all speech sounds and weed out background noise. We had a Phonak FM System to use with Sam's BAHA but he didn't like when I used it.  However if it could be used with a desktop speaker it might be more viable for him.  So I began to work with Brent Bowman from Audiologyshop.com to see if we could use an Oticon desktop speaker with a Phonak microphone.  This is still a work in process.  Brent has been extremely helpful in letting me know my options and shipping demo devices to try and see how Sam will work with them. I will be attempting to use a complete Oticon system with Sam this week to see how he reacts to it.  If you click on the highlighted Oticon system above you can see what it looks like and how it works.  When we tried to combine the Phonak and Oticon systems there was too much feedback and my sensory boy will not tolerate any type of mechanical feedback.  The system would be helpful as I tend to work with Sam one on one and at a distance while we work in the house and outside.  I think Sam would pay better attention and pick up on more with this type of amplification and we could use it on field trips too.  But as usual it will be up to Sam to like it or choose to shut down with it which is why I am thankful that Brent has been so helpful in letting me try it before I buy it.

After Sam's last x-ray Dr. Standard asked us to throw everything we have at hip extension which is by far Sam's biggest remaining issue.  So we work on hip extension in the pool twice a week and will start PT once a week.  Add in Sam's speech therapy and 4 to 5 days of homeschooling per week and you get the jest of my schedule along with working 2 1/2 days a week at Duluth Trading and a few hours a month at another job.  Obviously my energy level has picked up and I am so looking forward to field trips with Sam once everyone else returns to school, that's my absolute favorite part of homeschooling along with not driving in bad weather or having to send Sam out in bad weather.

Well, that is all I have time for right now.  I hope everyone is enjoying their summer, enjoying their children and figuring out how to get to that next level in whatever you are working on.