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Jan 7, 2017
Welcome to our CaringBridge website. We've created it to keep family & friends updated about Zackary, then Kaitlyn, and now John, too.
Feel free to grab a cup (or more) of coffee and start by reading the introduction to our website, My Story. Thanks! God bless you!
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guest book.
Here is a quick-nutshell background story :) ...
Zack is a blessing from God ... he was hard to conceive. I had secondary infertility, in fact, doctors said my first pregnancy was a miracle but anyway I was on fertility to conceive Z, had given him to God like a Hannah request. He was my Samuel. I knew I was pregnant with a boy. It was a stressful pregnancy because my soon-to-be brother in law was in a horrible car wreck that nearly took his life and right around 12 weeks gestation is when that happened and that's when Z's brain and organs were formed. I'm not at all blaming stress it's just an interesting twist for deep thinkers.
When Zack was born--April 1, 1999--I fell in love all over again. A joy unspeakable. I love K8, too, beyond words ... Zack was apparently healthy, perfect apgar score and all that. Besides the yell of "NO!" when my water broke on April 1st, and every nurse and doctor proclaiming that he would live up to his date of birth in personality characteristics, I was glad he was here and wouldn't you know, right on time, just like K8. :)
Fast Forward: We moved and within two weeks (January '01) Z was so sick we ended up at CHOP, Abington for a week. He had splenohepatomegaly. Basically an enlarged liver/spleen of unknown origin. Thus began our CHOP visits and our relationship with Dr. Mamula, GI.
It wasn't until 1 year ago (2008) that drs finally found out the cause of his liver issue all these years.
Back to the timeline: October 2002: Z had a fever, not feeling up to par, gave him Motrin ... anaphylactic shock=4 EMTs, two ambulances, a thrown lampshade, tossed coffee table, a Mary Poppin's like measuring tape, and three doses of epinephrine on the way to the hospital. No more NSAIDs nor additives, preservatives, or food dyes.
December 2002: Hydrocele hernia operation, Left Side. Drs famous last words, "chances are this won't happen again ..." We discovered that these words are not good when speaking of Zack.
January 2003: Hydrocele hernia operation, Right Side.
By the way, throughout these years include trips to the ER with croup, and CHOP, GI visits for the liver, as well as, regular visits to the allergist.
August 2006: Z was attacked by our rescue dog, Andy. We were part of the Great Dane Rescue League and Andy had been with us two weeks. Attacked Zack in the head ... by God's grace the teeth of the lower jaw went up under his front lip, under his nose, and the teeth of the upper jaw went into the top of his scalp. That was approximately 9:00 p.m. Went to ED.
11:50 p.m. home from ED. Typically any medial upset results with Z in our bed. Praise God. Within 10 minutes he was having, what we now know was, a seizure. Called 911. Thought he was having anaphylactic shock from the meds at ED. EMTs arrived ... back to hospital.
In August 2006, Zack was diagnosed with Epilepsy. Funny thing is, his first neuro stated those words, "Chances are..." Well, he's had ongoing seizures, changed meds, MRI's, EEGs, etc. ever since. We've since changed neurologists at CHOP and we're quite satisfied with our current neuro. No more dr. death, as Zack so-called the first one.
2007-2008 were probably the best and worst years. We discovered the Family Hope Center ... and Zack entered the realm of Genetics and Hematology at CHOP which began a series of testing--not the most comfortable for Z. We liked the geneticist, she was determined to figure Z out. Because of her discoveries were made. Praise the Lord!
Because of the testing it was found out that Z has a heart defect. A heart fistula in one of his arteries. Update 2010: 2 heart defects.
Z endured a skin biopsy, a liver biopsy, and a bone-marrow biopsy. The latter two gave him an overnight stay in the hospital due to complications. However, because of his bravery and the determination of the doctors, God directed Dr. Mamula's hand to take the correct sample of Z's liver ... the next week, I received a call from a liver disease specialist, Dr. Kammath. She studies liver diseases. She explained, finally after all these years, that Zack has Congenital Hepatic Fibrosis. Wow. How surreal. We now have a name.
... There is more to the story but I ran out of character space! Go figure. :) ...
During one on Z's trips to the ER--I believe it was his first seizure, possibly his second or third--as he lay on the gurny in the ED he said, "I don't know why God is allowing all this stuff to happen to me, He hasn't told me yet, but I know He has a purpose." He was 7.