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Wednesday, July 30, 2014

Ezekiel's "Condition"

For those of you who haven't known us for the past 4 years or haven't heard Z's story.  Here it is.  Facebook just doesn't have enough space for me to reflect and get it all straight.

Around a year and a half he started having "asthma" issues.  They didn't diagnose him with asthma at the time, but he did breathing treatments and have attacks along with lots of ear infections.  He had his first set of ear tubes when he was 2.  It helped a little.  We moved to Zephyrhills, FL in July of 2009.  His asthma would flare on many occasions, and he just wasn't a healthy kid.  On August 31, 2010, Z had his first severe asthma attack.  His oxygen levels dropped.  I didn't know.  He turned pale.  Z and I took an ambulance ride from the doctor's office to the hospital.  He was discharged that afternoon, but his oxygen levels did not stay up overnight.  Daniel took him to the doctor first thing in the morning.  He, then, drove Z to the Pediatric ICU at the hospital where he was hooked up to a continuous nebulizer treatment, hoses, cords, etc.  He was at the hospital for 5 days before his oxygen levels stabilized.  The day after we returned home, Z was walking around the house and suddenly had pain in his knees.  He crawled around the house for the next two weeks.  Yes, I said, crawled.  Our very active, very athletic 3 year old was crawling, not walking because it hurt.  It was believed that he had a virus called transient synovitis.  This virus coupled with a sinus infection had caused the severe asthma attack.

In October of the same year, Z had another severe asthma attack.  This time, he did not have to be put in the ICU.  He was hooked up to a nebulizer and oxygen for 5 days.  He had begun to "walk funny" after he started walking again from his virus.  He began walking on his heel and not using his toes on his left leg, only.  It caused atrophy in his left leg.  He hyperextended his knee and kicked it out to the side.  He had 2 different MRIs, but we could never get a doctor/specialist to look at the results and give us an answer to what was "wrong" with Z.  In February 2011, we had to cancel the boys' insurance.  They were uninsured until September of 2011.  We controlled Z's asthma through children's zyrtec, and God was so faithful to us.  Through all that time, he was healthy and did not have to have many breathing treatments at all.

Z's left leg continued to deteriorate as he continued to walk in his own special way.  Z is a very flexible, adaptable child.  This is great, most of the time.  It is, also, a weakness in this instance.  He formulated his own way of walking so it wouldn't hurt, again.  In September of 2011, when insurance kicked in, again, we started him in physical therapy.  He saw a neurologist, orthopaedist, and a pediatric physical therapist.  The neurologist and orthopedic doctors found nothing wrong.  His PT was awesome!  He made such great progress!  He had a brace for awhile, but he broke it twice.

July 2012 we moved to PA.  We had a hard time finding a pediatric PT and settled with a non-pediatric one.  He didn't make as much progress as we would have liked.  It just wasn't Ms. Julie Ann.  In January 2014, we moved to Clearwater, FL.  I had such a difficult time navigating the "insurance" world.  We kept getting sent back and forth from the FL kids insurance plan and Medicaid.  In July (this month), we finally were able to figure out the insurance and get Z going to a doctor.  So, now, he has a neurologist, orthopedic, and pediatric physical therapy referral.  He will be going in the next few weeks for a full brain/spine MRI scan.  I don't think there is anything wrong.  He doesn't seem to have any developmental delays.  He was a little behind when we moved schools, but he caught up by the end and is on level.  He keeps up with all the other kids.  You don't notice that he has an issue unless you pay close attention.

So, that's it in a nutshell...sort of.  His left foot, now, seems to be about a whole inch shorter, and that is concerning.  BUT, I know that our God is so much greater than anything that Z may be facing :)