And a Little Child Will Lead Them...

Last Thursday Eamon had a follow-up appointment with his pulmonologist. This necessitated our leaving the house, no small feat lately. One nurse, one mom, one prince, a rolling piece of luggage - aka, new diaper bag, suction machine, pulse oximeter, oxygen (just in case), kid cart seat and stroller base - whew! We were quite a scene in front of the building now trying to upload our gear. I was struggling with
the seat/stroller when an observer offered his assistance. I accepted, rather unlike me. Success was found, and off we went to the elevator. Again, the good samaritans stepped aside, holding the door and allowing us to use the elevator first. That's when it hit me, Eamon brings out the best in people.

After "Ears for Eamon", a group from WaltsBasement.com started to send gifts so Eamon could enjoy Disney at home. Packages from around the U.S. and Canada keep appearing filled with pixie dust and goodies from total strangers. People touched by Eamon, and inspired to do good for another.

Another pair of Ears - personalized to boot!

Mickey, in various shapes and sizes, trached-out for my boy.

Today's box - overflowing with love.

My incredibly talented friend and founder of "Ears", Miss Jodi, created this amazing compilation of pictures, quotes, and comments left on Facebook. Words meant to encourage, heartfelt prayers lifted on our behalf, and strength evident in numbers joined with one purpose - to believe for Eamon.

A sweet friend of my sister, Jenny, is getting married this coming Saturday. She and her future husband, Ryan, have decided in lieu of favors to make a donation in Eamon's name to Mary's Fund. A fund which supports many local special needs children, Eamon being a grateful recipient.

While shopping in Vera Bradley for some Easter gifts, I spotted a rolling piece of luggage. I thought it might work for Eamon's supplies while still being a bit stylish. The price tag was too steep, so I reported the bag was not even for travel but for my son's medical supplies. With just a bit of Q and A, the saleswoman suggested I call her privately so I could utilize her generous discount (50%). Instant friendship rooted in wanting the best for the prince.

Another friend and her husband pray for Eamon daily. He was already interested in medical "stuff", but after exploring trachs and their care has decided to make a career change, going back to school for respiratory therapy.

Little-ones and older-ones lowering their heads to intercede. Food prepared, coffee sent, help in various forms offered, perspectives altered, and choices impacted because Eamon lets "his light shine before men, that they may see ... and praise God".

There is no greater reward than knowing Eamon's life has influence and impacts, for good, the world around him.

Ears, take 2!

Thanks to my friend Miss Jodi, the prince has an actual group on Facebook called "Ears for Eamon". The "Ears" we were believing for Eamon were of the Mickey Mouse variety. Eamon didn't make that trip to Disney, but two sets of mickey ears found him anyway.

On Easter, I subjected my little bunny to a photo shoot adorning his latest "Ears".

Eamon is so patient with me, and doesn't he look dapper for the big day!






Once I started, there was no stopping me ...

Eamon's godfather walked in mid-placement of the pink ears, Uncle Joe was not appreciating the look.

I'm thinking the prince agreed with his Godfather

Maybe this "Ear" stuff will become seasonal, who says we need to be married to Mickey. Any ideas?!

Maeve and Myles were enjoying the silliness from a safe distance - no Ears for them, but dressed in their best to celebrate.

What a Difference a Month Can Make

It started like a normal day.

M&M had school, the prince had occupational followed by vision therapy, nursing from 10-6, dance class, food store - just a normal Wednesday. What was NOT normal was the car that blindly crashed into my side as I drove to pick up the kids. The poor man was so shaken I couldn't possible be mad, it was an accident. My concern was not over the car, but in the delay the incident imposed on picking up my M&Ms. After the police report was taken, the afternoon progressed - off to dance then a quick run to Whole Foods. Conversing all the while with the insurance company, a representative from Special Child Services (the waiver program), and intermittently with David about the extent of the damage. Back to get my dancing superstar, and the race home to relieve Connie, today's nurse.

Again, all normal for Wednesday. But what was NOT normal was the car alarming with news ...Fuel Low. No problem, there was an Exxon close by, but my car said I had 0 miles left. I stop at the light, I can see the gas station through the intersection, when my car died. I ran out of gas! Literally, ran out of gas. I have heard of people-silly, unprepared people running out of gas - but not me.

So there we sat, cars beeping, arms waving, expletives flying - there's, not mine. I calmly called David. He raced to us with a gas tank in hand, flagged down a police officer, and pushed me out of harm's way. My tank was justly filled at the oasis, a.k.a. - the Exxon station. David and I laughed at the scene.

Do you realize how many times my car must have shouted a warning to me - Low Fuel, but I never heard it. My mind is clearly focusing on some other matters. David and I were not even upset with the afternoon events, no one was injured, the car was drivable, and after all - cars are replaceable. Not a normal reaction, but evidence of a perspective shift completely inspired from the places we've walked these past several weeks.

One month ago, Eamon's CO2 level made him "incompatible with life". There were difficult options being presented to us. One in particular was to allow "nature to take it's course". They assured me that Eamon would be kept comfortable. There weren't any promises that a trach would alter the nose dive his health, specifically his respiratory system, had taken.

But oh, what a difference a month can make! Eamon was trached, and continues to strengthen. The prince is NOT requiring supplemental oxygen. He is enjoying his days, sleeping through the night peacefully using the vent, and is most definitely compatible with this life - thank you very much.

I have tried, on several occasions to dress Eamon up in his new Disney shirt, Ears in place, holding the newly trached stuffed mouse. But something always seem to preclude the much desired photo (sorry Jod!) I have not abandoned the official "Ears for Eamon" photos, but wanted to give you a glimpse of his mouseketeer cuteness.

"Hey, what in the world is on my head?!"

M-I-C-K-E-Y M-O-U-S-E!

What a difference a month can make!

Seeing is Believing!

Maeve told her teacher that she has seen a miracle. Mrs. Slootmaker responded with, "Oh really, what was it?" Maeve was quick to offer her answer, "My brother, Eamon, is a miracle!"

Maeve's observation is true, Eamon, against all odds continues to fight the good fight. He had a tremendous day. Having resumed in home therapies, Eamon boarded his scooter this morning anxious to get moving. His little leggers kept kicking Miss Ellen, prompting her to take action - scooter races! Well not an official race, but he certainly exceeded his last high speed and distance. A miracle. Eamon usually takes many weeks/months to recuperate after any illness, literally not returning his strength for some time.

Eamon is still on room air, no oxygen support, day or night. Since December 2007, the prince has required some degree of supplemental O2, everyday. But, now, He is flying solo and his numbers have NEVER looked so good! A miracle, surely!

And the miracle that I see on a daily basis - grace. Grace covering Maeve, Myles and Eamon . Grace custom fit for David and I. Grace given freely. Grace, more than sufficient.

All Miracles for us to see.

Where in the World is ...Eamon Joseph?!

Home. And doing well, really well. So much has happened since last Tuesday, the day we were discharged. Our transition home has been smooth. The details are still being ironed out, but in general, Eamon and his crew have landed softly into our "new normal".

Some highlights from the week for the prince's faithful fan club:

• I, the mother/nurse-in-training, changed the trach the day of discharge. Mostly it was my idea, wanting to experience it with backup. I was supported by 3 nurses, all encouraging me, but not stepping in to assist. It was all mine. Supplies were set in place, I was gloved, and at the point of dislodging the old trach utter panic almost consumed me. I announced the threatening sob, they tirelessly focused me, I took a deep breathe and went for it. The trach slipped out, and the new one slipped in quite easily. This will become a bi-weekly activity.
  
• 16 hours of nursing per day are in effect. This caused me great distress the week leading home, but actually has been wonderfully helpful. The nurses, all pediatric, are great with the prince, M&M, and us. I am heading up all care for Eamon, but am enjoying the camaraderie and support. I have the freedom to run out without packing up all the loot that accompanies the prince these days.
  
• M&M are home, making friends with the various nurses. Myles is thrilled, little brother is home and available for constant handling. Maeve has assumed the role of "nurse". She is cautiously welcoming this "new normal". She so adores the prince, but is a bit nervous with the bow tie. Tonight, was the first time she initiated cuddles with Eamon, somewhat forgetting about the trach, and just laying on the love.
  


• The prince has basically been on room air!!! During the day, Eamon wears a trach collar which provides a warm, humidified mist. If needed, oxygen can be attached. At night, Eamon is hooked up to the ventilator - the LTV 950, sounds like a fancy car - costs as much too! This smart machine offers pressure support on inhalation and exhalation. Most importantly, should the prince become apneic, the vent demands a minimum of 5 breaths per minute.
  


• The nursing, equipment and supplies are very expensive, and not fully covered by our insurance. But there is a season for everything. I have been pursuing various resources to assist us for months, even a year plus. One in particular, the CRPD-PDN waiver (Community Resources for People with Disabilities - Private Duty Nursing), which I started the paper work/interviews/home assessment in September was just approved - March 19th to be exact, right on time for the onslaught of additional costs. God is good. This program requires nursing, to which I was against, but still pursued with the hope of durable medical equipment support. I thought several times, what a wasted effort because I do not want PDN (nursing). But God knew, and provided a means. Oddly, I now can't imagine life w/out nursing. There is a season for every purpose under heaven.

There is more, but I will save it for another day. For now, I leave you with a teaser of the photo shoot I am planning - so stay tuned, Ears for Eamon coming soon!

Ready for some fun!

"With a wink and a smile..."

Happy boy on trach collar

He was out!

But still, so full of joy!