Thanksgiving

An update on Bo's progress is long overdue.  Over the past five months we have experienced tremendous healing.

June- The month of June was more of the same.  Bo continued to suffer with sleepless nights and red burning skin.  The oozing did subside some.  We spent two weeks at the beach.  Bo did not get in the ocean or the pool while we were there.  He had fun doing the activities and overall, his energy began to improve.  We began using some new products during the month including Young Living Lavender Essential Oil and pure zinc/ shea butter mix.

When we got home at the end of June, we had a huge breakthrough.  Bo decided to get in the pool!

July- Throughout July Bo continued to swim and take baths.  He suffered with water prior to now.  We continued treating him with the zinc/shea cream and lavender essential oil.  We also began to eliminate red food dye.  His skin healing during July was magnificent!  However, during his three year check-up we found that his height dropped to the 6th percentile.  His height has continually dropped since 9 months old.  The pediatrician recommended scheduling an appointment with an endocrinologist.  

August-October- More healing! Bo's skin continued to heal, but the amazing this was the internal healing that was evident.  Bo had swollen lymph nodes for years.  They were the size of a marble at the largest.  During this time, they shrunk to normal size!  He also began feeling well enough to do things other three year old boys do!  I was so worried as we entered the school year and Bo went back to the sitter's house.  He also started pre-school at our church.  I met with his teacher and the director prior to school starting.  They are familiar with Bo and had an idea of his skin troubles, but we talked and made sure a care plan was in place.  Overall, he did well starting school.  During the hot months he did get itchy on the playground and had to put on his pajamas after recess.  When the weather cooled down, he was able to wear clothes all day long.  During this time he also began sleeping more!  Sleep, glorious, sleep!  Remember, this child had not slept through the night since he was twelve months old.  He began sleeping through some nights and waking up once or twice others.  A huge improvement!

First day of pre-school

Florida game with dad Labor Day weekend

Enjoying a park in September

Visit to a farm in October

Dressed as a doctor for Halloween

November-  Everyday, I wake up and pray for Bo's health. This is not new.  I have spent countless sleepless hours holding him, crying, and praying.  The difference now is that we have experienced health and I'm fearful of regression.  I know another flare is probable.  Many people have clear skin for months and then flare.  I am also very concerned with Bo's asthma. Every November of his life he has had an asthma attack that resulted in emergency care.  We are living on a prayer... thanks Bon Jovi.  

Bo getting his hand painted.  His skin is finally well enough!

Sweet little healed face!

November 24, 2014

During this month, we also visited a pediatric endocrinologist concerning his growth.  Yes, it took five months to get a new patient appointment.  She asked the normal questions to rule out genetics for Bo's growth delay.  She also ordered a panel of tests.  (I do not want to ever have to take him for blood tests again!  He did really well, but it was traumatic for both of us.)  Overall, she said that the results of the blood test would rule out a hormone issue.  If the tests come back normal, she is prepared to conclude that the steroid treatment for eczema stunted his growth.  If that is the case, he should catch up with time.  He has already grown 1.5 inches since his July appointment!

November 24, 2014

The last 20 months have taught us so much.  We are Thankful for healing.  Our church family, friends, and community have been a huge support in this season.  Pastor Chris spoke on seasons of life a few months ago.  Until then, I had not considered how long this winter season of life was for us.  For three years we have been slaves to Bo's skin.  Worse, the poor baby has never felt well.  Kate has learned patience and sacrifice.  One night when Bo was crying, she asked me to sleep in his bed because he might itch and need help.  She sincerely cares about him and knows the treatment plan.  We are thankful for Ms. Pam.  She has cared for and loved Bo even though he has been very sick and required more time than a normal child.  We are thankful for my parents.  They have kept the children a few nights so that we can get a full night sleep.  We are thankful for our pediatrician who has supported us through our out-of-the-box treatment.  Also, we are thankful for our online support community.  The other families going through this are the only ones who understand completely. It is amazing that something as awful as Topical Steroid Withdrawal can help us see our many blessings, but as this season ends, we are thankful for a "spring" of new beginnings.

Several have asked how we are treating Bo.  Currently, we are using olive oil sparingly on extremely dry areas, zinc/shea balm from www.thehomeapothecary.etsy.com on the red broken spots, lavender and RC essential oil in a diffuser at night, melrose essential oil with dead sea salts in his bath, and a humidifier for cold, dry nights.  Of course, NO STEROIDS!!!