Our Smiling Sweeties!!!

Welcome to our children's web page. It has been provided to keep people updated about Nicholas, Nathan, and Daniel and their medical issues.












Nicholas was born prematurely at 35 weeks on November 11. 2002, with severe GERD and battles severe Delayed Gastric Emptying/Gastroparesis, Reactive Airway Disease, Myopia (nearsightedness), and Transient Hypogammaglobulinemia of Infancy, which is an immune deficiency. Due to the severity of his reflux, he has had a Nissen Fundoplication and a pyloroplasty, as well as having a G tube placed. He is fed by pump through this overnight and receives a special hypoallergenic high calorie formula called Peptamen Jr with Prebio. He also has some developmental delays and Hypotonia. Nicholas currently receives OT and PT. He wears bilateral AFO's (Ankle Foot Orthotics) to help with ankle pronation, knee hyperextension, and weakness. He was diagnosed as having a Mitochondrial Cytopathy on Oct 5, 2007. He currently takes 13 medications divided into 6 doses per day.

How the Mito affects Nicholas - low muscle tone, easy fatiguability, heat and cold intolerance, GI issues, poor growth/short stature, inability to gain weight, poor suck/swallow reflex, enlarged liver, reactive airway, nearsightedness, developmental delays, and immune deficiency.







Nathan was born early at 37 weeks on March 23, 2005, and has reflux and moderate delayed Gastric emptying/Gastroparesis. He had been diagnosed with mild Plagiocephaly and Left-Sided Torticollis, both of which have resolved. He has Global Developmental Delays, Myopia (nearsightedness), and Hypotonia. He is receiving PT and wears bilateral AFO's (Ankle Foot Orthotics) for ankle pronation, knee hyperextension, and weakness. He has been diagnosed with Transient Hypogammaglobulinemia of Infancy like his brother. Due to this, he has had to have ear tubes places twice and have his adenoids removed to help prevent illness. He had a muscle biopsy done in July 2006 and it back positive for a mitochondrial disorder. He was diagnosed with Mitochondrial Cytopathy on October 5, 2007. He currently takes 11 medications a day divided into 6 doses.

How the Mito affects Nathan - low muscle tone, easy fatiguability, heat and cold intolerance, GI issues, short stature, slow speech development, poor suck/swallow reflex, heart murmur, reactive airway, nearsightedness, developmental delays, and immune deficiency.<







Daniel made it to 38 weeks before he was born on March 6, 2008. Thus far, he has ben diagnosed with reflux and we suspect he has gasgtric emptying issues as well. He has Laryngomalacia which causes his airway to collapse at times. He is thought to have Mito also since there is a genetic mutation in the family and is showing signs of it already. He s also suspected of having immune issues as well since he has struggled with infections since birth.






Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.





We appreciate each and every person who has spent time here reading about them and hope these updates find you all healthy and happy as well.





Team Pohla Power ROCKS at the 2007 MDA Stride N Ride Walkathon!!!

Here is a picture of our awesome team at the walk...we are still waiting on the final total to be calculated, but it looks like we were able to bring in over $1,300!!! You all ROCK!!!!



Top (l to r) - Michelle (sister in law), Chuck and Barb (Doug's parents), Woody and Sara (Melody's parents), Nancy and her husband (Nathan's AWESOME PT)
Bottom (l to r) - Jon (Doug's brother) holding son Connor, Dana (the boys' godmother) holding Nathan, Doug and Tyler (Jon's son), and Melody with Nicholas. My sister and her family were unable to be there due to her surgery and they were missed.

THANK YOU to our AWESOME team and all the WONDERFUL effort you made to help us with this walk. The funds we raised will go to help kids like our boys and we are SO PROUD of ALL of you!!!! Thanks to all who donated funds and prayers to support us. We could not have done it without the support and God's grace. We are truely blessed!!!





Upcoming Appointments for the boys:


May

Daniel sees GI
Daniel sees Immunology
Daniel sees Cardiology
Daniel's EKG
Daniel's Echocardiogram
All 3 boys see Mito specialist
Nicholas and Nathan's bone age scans
Daniel has a sacral ultrasound
Nathan's ARD
Nicholas' screening

June

Nicholas and Nathan see Endocrinology

July

All 3 boys see GI
All 3 boys see Immunology

August

All 3 boys see Mito specialist





Thanks for stopping by and checking on us! The boys (and us!) like seeing who has been here and reading the guestbook entries, so please drop a quick note to let us know you have been here!!

E-mail Author: pohlarbearpack@comcast.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.