Category Archives: Uncategorized

Time to storm heaven again with prayers for our family. Not for Matthew, nor for Kari, but for our yet-to-be- born first grandbaby girl. Jeremy and Sarah are expecting in Jan 2022! We are so excited to be entering this new phase of life – Grandparenthood! Last Monday Sarah had a 20-week routine ultrasound andContinue reading “Turner Syndrome”

Today is day 11 of Kari being served a mitochondrial cocktail. A cocktail “generally comprises three or more liquid ingredients, at least one of which is alcoholic.” In Kari’s customized mixture there is no alcohol but there are lots of ingredients – seventeen in all! Most of these are vitamins and the key item isContinue reading “The Cocktail”

The decision as to whether to have half of our son’s brain disabled was now in our lap. Many tests had been performed. 40 specialists at CHOP had reviewed the case and all had given the green light (not a single hesitation). Matthew was an ideal candidate for a Hemispherotomy. “If he were my son,Continue reading “Pavers”

I was appalled when Joan’s mom (with dad’s assistance) removed every wisteria branch from our garden arbor. It had done so well that spring and summer, covering the arch with green leaves, creating shade over that area of the brick walkway. It had taken a few years to grow so well. And now it wasContinue reading “A Severe Pruning”

Joan’s mom passed away yesterday morning. Joan and her dad were with her at the time. We had just finished singing “It is Well With My Soul” to her and then as dad read to her from the Bible she left us and entered heaven. We miss her already. We cared for her in ourContinue reading “In Heaven”

Matthew and Joan came home one month (to the day) after his surgery. As I was nearing the hospital Joan called me and said “Everyone is waiting. Park the car in (such and such a place – illegally, by the way) and run! They are about to start the “parade.” I made it in timeContinue reading “Home”

It is really happening. Matthew and I are leaving CHOP tomorrow, May 12!! It was exactly one month ago when we came here. The staff here will be throwing him a party, which is awesome, but our earlier than expected departure is very much mixed with grief. Over the weekend my mother became weaker. AfterContinue reading “Homeward Bound”

It is day 23 here and if the doctor’s prediction is accurate we are over halfway through this hospital journey! That makes me smile, but to be honest, it also carries with it anxieties and challenges. Matthew’s seizures are gone and everyday I am so amazed. I only realize now how many Matthew was havingContinue reading “Enduring”

Got a chance to squeeze in a quick trip to CHOP. Who’s happiest here? Really hard to tell (Kari is tuned in and loving it too – just not as expressive). Don’t we have awesome “kids?” Brothers – not sure which one appreciates the other one more. Really hard for me (Ron) to leave theseContinue reading “May Day”

Ain’t no sunshine when she’s goneIt’s not warm when she’s awayAin’t no sunshine when she’s goneAnd she’s always gone too longAnytime she’s goes away Wonder this time where she’s goneWonder if she’s gone to stayAin’t no sunshine when she’s goneAnd this house just ain’t no homeAnytime she goes away And I know, I know, IContinue reading “Sunshine”