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My Story

Welcome to our CaringBridge site. It has been created to keep everyone updated about our sons. Nicholas, Nathan, and Daniel have Mitochondrial Disease with a defect in Complex I. They were found to have a genetic mutation and polymorphisms on the ND1 mDNA gene. Despite dealing with Mito, they are happy, smart, mischevious, and loving little guys!

We have been travelling this medical road for quite some time now. We had been looking for answers to our older 2 boys' health issues for almost 5 years before we finally found a doctor who could help. After countless unanswered questions, endless tests, and dead ends everywhere we looked, our boys were finally diagnosed with Mitochondrial disease in October of 2007. When Daniel was born, he was diagnosed as well.

Nicholas was born prematurely at 35 wks.  He has had constant health issues fromt he start.  As a baby, he had reflux and motility issues that required a fundoplication and placement of a feeding tube and hypotonia that required therapy.  He used to wear AFO's. but is able to go without them now.  Recently, he has been dealing with a number of issues including gastroparesis that requires continuous j-tube feeds, possible cyclic vomiting, nearsightedness, hypotonia, immune deficiency requiring IVIG therapy, temperature intolerance, easy fatiguability, and disordered sleep requiring oxygen.

Nathan was born at 37 wks after preterm labor began at 26 wks.  He had severe muscle tone issues from birth as well as reflux.  He was very delayed in all his motor milestones and speech, but caught up by the time he was 3 with everything.  He used to wear AFO's as well, but no longer needs them.  His reflux progressed to the point where he required a fundoplication and g-tube placement due to reflux damage to his vocal chords (causing vocal nodules and severe irritation and inflammation) at age 6.  Recently, he has been dealing with a number of issues including slow motility, nearsightedness and optic nerve issues, hypotonia, immune deficiency (previously requiring IVIG therapy), migraines, leg pain, temperature intolerance, easy fatiguability, and disordered sleep requiring oxygen.

Daniel was born at 38 wks and had issues with reflux right away.  He has had relatively normal motor development and had speech therapy until age 3.  He will need speech again when he is older, but we are waiting to see if he outgrows any of it.  He has had the most trouble with arthritis and requires long-acting steroid injections to combat pain and swelling.  Recently, he has been dealing with a number of issues including reflux, slow motility, slight hypotonia, arthritis, immune deficiency, temperature intolerance, easy fatiguability, and disordered sleep requiring oxygen.

None of the boys let their Mito slow them down.  All 3 take TaeKwonDo and the older 2 have earned World Champion titles based on their performances at tournaments.  They enjoy all the normal boy stuff like watching every sport imagineable on TV and in person, reading, playing outside (as the temperature allows), taking day trips to do fun things, playing with their dogs Bella and Sully, and watching movies.  Nicholas wants to grow up to be a sportscaster or commentator, Nathan wants to be a baseball player, and Daniel wants to be a policeman.

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Melody Pohla posted a new journal entry.

Today was certainly an eventful day! Nathan has been having issues focusing on and off since he was 4.  It is something that I always ask his teachers about and everyone ... Read more

Melody Pohla posted a new journal entry.

Today was certainly an eventful day! Nathan has been having issues focusing on and off since he was 4.  It is something that I always ask his teachers about and everyone ... Read more

Melody Pohla posted a new journal entry.

Nicholas is still sluggish and tired.  I know he is getting tired of all this.  We have him in bed by 8 and up at 7 and he seems ok, but is totally dragging by the time ... Read more

Melody Pohla posted a new journal entry.

Day 7 We woke VERY early Thursday morning to come home.  We got dressed, finished last minute packing, loaded the car, made one last sweep of the villa, and bid goodbye ... Read more

Melody Pohla posted a new journal entry.

Today makes day 3 Nicholas has fallen asleep on the bus on the way home.  I sure wish there was a way for him to catch up on his sleep somehow as he is just exhausted ... Read more

Melody Pohla posted a new journal entry.

Nicholas is hanging in there.  He went back to school today for the first time basically since before Christmas break (since he was barely in the classroom last Tues ... Read more

Melody Pohla posted a new journal entry.

Nicholas is plugging right along...happy to be home and doing well on his feeds.  He is slowly trying different foods to see how his stomach reacts and trying to add ... Read more

Melody Pohla posted a new journal entry.

Sorry for the hiatus...we were forced back to reality as the fallout from overdoing it on the trip slapped us in the face a few days ago.  Nicholas started back to school ... Read more

Melody Pohla posted a new journal entry.

Ok...the adventure continues! Day 2 We woke up early the next morning and got breakfast.  It was drizzly and yucky weather out, so we stopped by the GKTW front desk for ... Read more

Melody Pohla posted a new journal entry.

I hope everyone had a wonderful Christmas and New Year's Day, filled with family and friends.  We had an amazing break and it is drawing to a close now as the kids will ... Read more

Melody Pohla posted a new journal entry.

Merry Christmas everyone!  I hope you all had as wonderful a holiday as we did.  Today we actually stayed home and didn't have anywhere to go as we did Christmas with my ... Read more

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