Friday, April 26, 2013


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. 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 codingdecodingregulation, 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 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"!!


  1. Thanks so much for sharing all of this Sue! Praying for continued healing for both of you and a smooth trip out east again.

  2. Sam is beautiful, and so it his mom. I'm hoping and praying for a great outcome from his May Baltimore trip.