Biography
Our little Davis has turned our world upside down from the moment he
was born. Once he smiles at you and looks up at you with his beautiful steel
blue/green eyes, you are in love.Davis came out of the womb covered in eczema.
I knew he didn't look like our daughter, Carolina, did when she was born. He
had terrible reflux from the start, and nursed every hour and a half around the
clock for six months, and then he did finally start sleeping 6 hours at night
but kept his nursing schedule through the day the same. Unfortunately, I didn't
realize at the time that he was nursing so much because he was trying to soothe
his pain.We did find out he was allergic to cow's milk at 4 months old. Not
lactose intolerance, but anaphylactic allergy. He was also diagnosed with
asthma then, too. So we were off into a whirlwind of trying to figure out how
to keep milk and all of its derivatives away from him, as well as learning to
manage the asthma with daily nebulizer treatments. He was on meds for reflux as
well. He also had to take antihistamines to help him sleep due to the itchiness
of his eczema, and use prescription creams (and still takes all of these meds
plus more at almost 5 years old.)When he was a little over a year old, we also
found out due to a failed in office food challenge that he is allergic to
peanuts, as well. Testing showed egg and tree nut allergies also. We were
completely overwhelmed.Davis was also not growing or gaining weight. Around this
same time, Davis started visits to a local GI doctor, and had his first
endoscopy. We found out through those results that Davis has a condition called
eosinophilic esophagitis. One way this has been described to us is that it is a
food allergy but you only see it on the inside. That is a rather simplistic
explanation of a more complicated disorder, but it is still helpful to picture
it that way. When Davis consumes foods that trigger his EE, it can cause white
blood cells called eosinophils to congregate in his esophagus causing pain and a
lot of other problems. He was put on a special restricted diet, (he already
couldn't eat milk, eggs, peanut, tree nuts, fish, or shellfish) and so this
meant we also took wheat, soy, tomatoes, strawberries, cinnamon, green beans,
green peas, and white northern beans out of his diet. He also started a
supplemental elemental formula called Eo28 Splash to help him get the nutrients
and fat he needed. Unfortunately, this diet still did not help to clear all of
the eosinophils from his esophagus, and so we had to cut all foods out of his
diet. This was from February of 2010 until September of 2010. We then have had
many food trials, where one food is tried for at least 3 weeks (unless it makes
him sick early on) and then called a tentative pass if he has tolerated for at
least that time, and then has an endoscopy to make sure it wasn't causing silent
problems. At present time his body has started rejecting the only three foods
he previously had passed on endoscopy. So unfortunately, we have to go back to
the drawing board and he has no safe foods he can eat at this time except for
his formula.He has had 4 endoscopies so far, and more are in his future. During
one of the endoscopies, a special motility test was done and it showed that he
has a motility disorder - weak peristalsis. This means his esophagus does not
squeeze his food/drink down the right way. The food/drink can sit in there and
cause more pain.He also had a swallow study which showed that he does aspirate
his food/drink down into his lungs at times. This means that he cannot have his
formula or water without a special thickener added to help him to swallow it
properly without choking on it.In October 2010, he was not gaining enough weight
and still having a lot of problems that we attributed to not getting enough
formula into him, so he had an NG tube inserted. This showed us and his doctors
that a feeding tube would help him so much, because he started growing by leaps
and bounds.In December of 2010, he had surgery at Wake Forest University Baptist
Hospital and had a G tube put into his stomach. This has changed his life as
well as ours. He is finally getting enough formula to thrive. We do hope that
someday he has enough safe foods to be able to come off of the G tube, but right
now, we have no way of knowing that it will happen for sure. Davis continued to
have pain and problems in areas that the eosinophilic esophagitis should not
affect. We took him to a geneticist, and she has discovered that he (and our
daughter as well) have a disorder called Ehlers-Danlos Syndrome Hypermobility
Type. While this causes hyperflexibility, it also causes pain and weakness. It
causes problems in his digestive tract as well - so it along with the
eosinophilic esophagitis and esophageal motility disorder cause a lot of stomach
problems. Eosinophilic esophagitis as well as Ehlers-Danlos Syndrome illnesses
are considered lifelong, but we hope someday for cures for them. He is such a
strong hearted little boy, and through it all he has kept his sense of humor and
he has the mind of an engineer. A recent quote from him to a sweet lady who
suffers from illness at our church - he told her, "I am a healing lion." Anyone
is welcome to keep up with him at www.caringbridge.org/visit/davisturbyfill.We
do appreciate prayer. We thank the Lord for the many blessings in our lives,
including our precious son Davis and daughter Carolina.
