October (Edited to add...)

October has proven to be a difficult month for Lennon each year.

His first October (2016), he had what seemed like constant viral infections.  His stomach seemed to be constantly upset and his diapers proved it. (I know, TMI.)

He was still very cute though!

This was when he was meeting all his milestones and before the diagnosis, but I remember thinking that something just wasn't right.

His second October (2017) we learned just how quickly a good day can turn into an extended hospital stay.  This ended up being his fourth stay at Wesley Children's Hospital.  We'd had a fantastic morning and afternoon.  He knocked over the trash can SEVERAL times, tried on his Halloween costume, and tried to carve pumkins with the big kids.  Then in the early evening, he spiked a fever and the seizures started.

We knew that we needed to be concerned.  We had already begun genetic testing and had actually just submitted our own blood samples for the genetic variance analysis, but I don't think we ever would have imagined the changes that we've seen.  It's crazy how long ago this seems.  It was one year ago today.

part 1

part 2

This is his third October.  Just a couple of weeks ago, we had our most recent hospital stay.  We've found that those viral infections are STILL a likely cause of his decline, even when we can't pinpoint what he had.

Lack of bowel movements has been a concern for quite some time, so we'd seen Dr. Moffitt for that earlier in the week.  In addition, for several days, we had noticed more movement, increased difficulty breathing, breakthrough seizures, and episodes of very high heart rate.  We hoped that by getting his bowels emptied, those symptoms would decrease.  Hello Miralax 4x daily...

Oxygen saturation 96% and Heart Rate 173 bpm

Thursday Oct 4, we went to the ER and had our first successful IV Argenine infusion in Dodge City.  His heart rate settled and his movements slowed, so we went home.  Friday, we went back to Dr. Moffitt to repeat tests since his heart rate was still too high.  They did rapid tests for influenza, RSV, and strep.  He came back positive for influenza A and B, so a flight to Wichita was arranged.

Upon arrival HR was still too high, but... the Miralax worked... really, really well.  If you have a weak stomach, skip the next sentence.  They said he eliminated a liter of poop in two stools.  How is that even possible??  Anyway, nurse Sally has forgiven Lennon, Dr. Moffitt, and me.

The EEG revealed that Lennon had continuous seizure activity on the right side of his brain.  We were able to follow the plan that was used in July for seizure control and we repeated his viral panel, only to find that influenza was not indicated at Wichita.  In fact, we didn't get a for sure diagnosis while we were there, so he was just treated with respiratory support and seizure control.  Medications were adjusted for weight gain.

Now after 2 weeks, it appears that the new levels are appropriate, but we had breakthrough seizures daily, especially when waking up for at least the first week after discharging from the hospital.  To help him during this viral season, we're adding a nebulizer and albuterol to his equipment.  We've also submitted requests for a percussion vest, and cough assist to insurance.  He also got fitted for custom AFOs since his feet are too big for the quick fits.  Those should be coming soon. The design is pretty awesome!

Although Lennon's health is our primary concern, we have also decided that our little guy is a living legend.  We want to make sure that his experience helps other kids.  I hope that when I create my next post it will be to give a full update on Lennon's Legacy Foundation.  We filed the Articles of Incorporation at the end of September, but there are a few more steps in the process.  As always, thank you for reading and for your support!



I originally posted this October 21, 2018, thinking that our October issues would be over.  I was sadly mistaken.

October 14th he flew back to Wichita after a seizure episode and was released the following day without further testing.

October 26th we flew back again and found continuous seizure activity, despite much improved outward presentation.  Several boluses of Keppra and Lacosamide later, he was mostly seizure free, although even yesterday (and today) he continues to have seizure discharges.  Most of his activity is in the right frontal lobe which presents as facial movements and nystagmus (eye twitching.) 

Considering there are only THREE days left in October, I am optimistic about being done at Wesley Children's this month.