The Fall Setback

Sunday, April 17, 2016


The Fall Setback

We had a wonderful celebration yesterday for the first anniversary of my mom’s passing.  Several of her friends came, along with the entire crazy family.  We attended an anniversary mass, and then had everyone back here afterwards.  It was a great day and evening, and judging from the number of sibling hangovers today, there was no shortage on fun.  My mother would have expected nothing less.  So the timing of this along with where we are in retelling our past year’s events with Coleman is perfect. 

After our appointment with Bock in late September, life went on as we eagerly awaited the arrival of the prescriptions and supplements.  Coleman celebrated his 11th birthday, and for the first time, we had a ‘friend’ birthday party for him.  We don’t usually do this because, well honestly, he doesn’t like birthdays.  He doesn’t like the Happy Birthday song, he doesn’t eat cake or ice cream, he doesn’t have ‘friends’, and he doesn’t like to open presents.  So pretty much birthdays aren’t his thing.   But this year, we had Kidzone in our bag of tricks, and we knew how much he loved that place.  We invited a very small group of kids, primarily neighbors, to join us at Kidzone for play and then had them back to our house for cake and ice cream. 

All I can say is that we are very, very blessed to have these families in our life, let alone our neighborhood.    Best birthday celebration we’ve ever had, hands down.  Coleman didn’t stop smiling the entire time there, and he ran around with those kids for a solid hour and a half – without any involvement from me!  He’d run up to me every so often with some comment like “You go on the slide?” and I would act all excited for him and say “Oh yeah! Have fun!!!” and off he would run to the slide with the quartet of kids.  God, they were good to him.  Asking him questions, following where he led, and even, on a very close call, holding him up when he was centimeters from falling back down the inflatable slide stairs.  There wasn’t a lot of conversation between them, and I’m sure much of what he did say they didn’t understand.  But they never said a word, never complained to their parents, never asked when it was time to go.  They laughed and smiled, and coaxed him with “Where should we go next Coleman?”  They were like mini adults, taking his hand, helping him up the ladders, down the slides, and through the bumpy houses.  It was an outstanding 90 minutes. 

A few days later the package of supplements finally came and we officially began our road to recovery.  As luck would have it, we hit a bump only three weeks in.  Coleman stopped drinking his juice.   And then he stopped eating too.  He wasn’t getting much yet in terms of supplements – we were supposed to add a new one in every 2-3 days, leaving just enough time between each to see if there was any reaction.  But I was cautious – I didn’t want to rush into anything, so I was doing 5 days before adding each one in.  So I felt pretty sure it wasn’t the supplements.  Still, since they were being mixed in his juice, I backed off to see if he would start to drink again.  He didn’t and remained irritable and still refused to eat anything.  By the end of the second day, I was sure it was strep.  This was exactly how he had presented in the past.  We went in for a strep test, and sure enough, it came back positive.  Due to a very serious strep infection the prior year that involved several trips to the ER and nearly led to a much bigger throat infection (all because he did not respond to a 10 days dose of Amoxicillin) we were prescribed Cephalexin and went on our merry way.  Only not so merry.  He vomited for 60 hours before we could even get the antibiotic into him.  After 5 days he ate his first bite of food.  2 days later he began pooping blood.  A lot of it.   We were terrified.  We went back to the doctor and provided stool samples for testing, but had to wait another week for results.  The heavy blood continued the entire week.  He was so sickly, laying on the couch like he hadn’t since the Leukemia days.   The bacterial tests all came back negative, but still the blood continued.  It was extraordinarily frustrating as our pediatrician didn’t seem very concerned.  She felt it was possibly a reaction to the Cephalexin and that we’d just have to let it run its course.  Coleman had been out of school for more than 2 weeks.   We were begging time at work, slipping in late, leaving early, trying to cover the hours he was at home along side Sue, who thank God was able to come most of the days.  After another weekend with bright red stools and 8x/day diarrhea, we went against our doctor’s suggestion and called Children’s Emergency and spoke with the GI doctor on call.  I needed to be seen, I said.  I cannot wait any longer.  I was a wreck and thought something was very seriously wrong with my boy.  We went in on that Monday morning, 17 days after it began.  And as I held Coleman’s hand walking through the parking lot into the hospital, he stopped.  He looked up to his right side, smiled and then looked back toward me.  “Where is nana?” he asked?  It was the first time he had even mentioned her name in the 7 months since she had passed.   He looked around like she was walking with us. “Where is nana?” he asked again.  “Can we see her?” he continued, still smiling.  Honest to God.  It was as if she was there, whispering to him.  It was the most comforting sign yet.   I know it sounds nutty, but I am absolutely sure that he could see her.  “I think she’s right here with us buddy” I said.   He just smiled and kept walking.  I knew then that we were good.  No matter what happened, she had his back.   

That very afternoon things improved.  No joke.  And the next day, he was 100% back to himself.  No blood, no diarrhea.  And I thought of my mom, pictured her smugly nodding her head, so thrilled she is able to help like this:  “See what I can do from here?   You’re welcome.”

So finally healthy again, we started again where we had left off in the Bock plan.  It was the end of November, and the weather was starting to turn colder.  Hopefully by the spring, I thought, we’ll be able to see some changes.  Turns out, it would be much sooner than that. 

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