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.

Bootiful!!!

There have been many times in my 12 years of life with Sam that he has told me "Mom bootiful" or something is  "bootiful". Each time I smile and I accept his wonderful compliment and yet a part of me wonders what Sam thinks beautiful is.  I don't really think his "bootiful" is about appearances or outward beauty.  And then the other day I came across this quote:

And now I get it...I immediately thought of Sam...not because of his telling me I'm beautiful but instead because he is beautiful.  Read the quotation again and think about Sam.  Yeah...that pretty much describes Sam and what really hit me is the life lesson Sam is again teaching me.

I'm often asked "How do you stay positive?" Hmmm...well I live and learn through Sam. Yes, it would have been easy to give up when Sam was diagnosed with a brain injury along with Down syndrome. I could have given up when I learned Sam was going to have hearing, processing and speech issues beyond what other children with Down syndrome encounter. I could have thrown up my hands when Sam's diagnosis of Perthes  hit and we went through one surgery with limited success and a second surgery that challenged me beyond what I thought was possible.  Add in the loss of my main support system, my mom, while riding the challenges of the 2nd surgery and no one would have been surprised if I just fell apart.  And I did...and I do...but then I look at Sam and I learn from his example.  Sam has faced more challenges in his 12 years of life than most of us will ever face....AND HE IS BEAUTIFUL!!!

It is because of the innate beauty of Sam that I feel more, love more, appreciate more and have become the person I am.  Since Sam's birth I have always prayed that God guide me every moment of every day and I could have questioned if that were occurring considering the twists and challenges in our journey and my life but as I get older and I reflect on my life I see the guidance.  The people, the events, the challenges, the joy that have been placed in my life are forming me, changing me, redefining me into the person God wanted me to become.  I think He still has a lot of work to do but I trust Him.

I really had to learn to trust in the last 4 months.  I knew the surgery in Baltimore was going to be difficult and I tried to prepare myself for that but I don't know if anything prepares you for the sight of the external fixator sticking out of your child.

Add in a few infections that included blackened flesh, new holes opening up and just plain goop coming out of your child along with a heart rate of 133, fever and an absolute refusal to stand or move and the stress mounted.  When Sam feels bad...I feel bad.  All of this added stress took a toll on my health and I could do nothing but trust in God.

I have always promised to show the good, the bad and the ugly and because I also have Perthes parents that read my blog I want to share some graphic photos on Sam's pin sites.  If you are squeamish you may want to skip these but I think it helps to show the progression of healing.

The first row of pictures was the worst pin site which is located on the back of Sam's thigh.  The first photo was after the antibiotics for the 2nd infection.  You can see the blackened flesh which was much darker before the antibiotics, the hole that opened above the pin site and the fleshy goo.  Now keep in mind that the first picture is actually an improvement from the original onset of the infection.  This particular pin site has left a huge depression in Sam's thigh which I will show in the next photograph.  The second row of pictures are the hip sites.  The two lower holes also turned black and now only show bruising.  The third row of photos are the 2 lower thigh sites.  These were by far the largest holes when we started since Sam flipped around a lot after surgery and tore these open.  The far right photos show Sam's pin sites about as stable as they get. The next photo shows the divot in Sam's thigh and the bulging of his revised scar surgery from the hardware removal of the first surgery.  Not the easiest photos to look at...I know...I'm living it.

It wasn't the antibiotics that got him stable.  It was a combination of prayer, Medihoney rope and NAET allergy elimination that has finally gotten him stable but all of them came to me through guidance from God.  My goals for Sam have always been the same, three things...healthy and happy and to reach his full potential.    For my Perthes parents Medihoney is a calcium alginate dressing that is impregnated with Manuka Honey which is a medical grade honey. Medihoney wound & burn dressing helps promote moist wound healing in challenging wounds and assists in autolytic debridement. I came across a medical study of Manuka Honey in treatment of pin sites and decided to give it a try.  NAET was something I had researched through the Autism sites and a good friend just happened to meet a Wisconsin NAET doctor's wife while traveling on a train in Chicago and she knew she had to tell me about him.  The next photo shows Sam pin care process with the use of the Manuka honey.

Alright...you have made it through the worst of it and within the next couple weeks I will have made it through too.  Sam's external fixator removal is set to occur in Baltimore on May 17th.  We will leave on the 15th and on the 16th he will be fitted for his Scottish Rite Brace pictured below. He will wear this brace for at least 4 weeks, maybe more...23 hours a day, 7 days a week.  After that point he will wear the brace at night for an additional 4 to 6 months.

I also want to provide some information on NAET and muscle testing which is responsible for getting both Sam and I back on the road to good health and good energy.  My journey into holistic medicine began with Sam and I have long been familiar with muscle testing.  For those who are not...muscle testing is based on the concept of internal energy fundamental to traditional Chinese medicine, muscle testing is a noninvasive way of evaluating the body’s imbalances and assessing its needs. It involves testing the body’s responses when applying slight pressure to a large muscle, to provide information on energy blockages, the functioning of the organs, nutritional deficiencies, and food sensitivities, among other things. It can also be used to test the body’s responses to herbs and other remedies.

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.  I will try to share more about our experience with NAET in a later post.  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.  Hmmm...stress can cause an imbalance in your adrenal system and many of my symptoms are related to adrenal imbalance such as fatigue, hair loss, acne, difficulty sleeping, anxiety, abdominal weight gain and mental clarity issues.

Sam and I are feeling better, recharged, stronger and ready for the next leg of our journey. Dr. Vu uses a combination of desensitizing treatment and supplements to take care of these issues.  I have provided a lot of information in this post and am happy to answer questions and I will try to expand on NAET in a later post.

But I want to end with some positive thoughts and reflections.  The last 4 months have been the roughest to date.  I am still in the grieving process and miss my Mom each and every day...but there are blessings to be found.  Each time I transfer Sam from his bed to wheelchair, wheelchair to recliner, wheelchair to commode....Sam stops and gives me a great big hug and pats me on the back.  I love and look forward to those hugs and I am thankful.  Sam and my health issues have caused me to try something new in combination with something I had already found helpful but had not kept up with and I am thankful. Random acts of kindness from family, friends and strangers have reaffirmed and strengthened my belief in the human race and added to my support system and I am thankful!  My husband telling me I'm a good Mom and listening to my worries and concerns, helping me in Sam's care as much as he can and making sure I know I am appreciated...I am thankful.  I pray more, trust more and recognize the guidance I am receiving and I am thankful!

As I watch movies, read books or think about my life I can't help but see so many of the pieces begin to fall together and make sense.  This life...my life has made me appreciate the things that at one point I may have found unimportant or may have taken for granted. The challenges have built me, strengthened me and humbled me.  I strive to be Sam's kind of "bootiful" and I know that over time I will continue to develop the understanding, sensitivity and appreciation of life that Sam innately exemplifies. Good Night everyone, may God bless you and your families and make us all "bootiful"!!