Saturday, September 8, 2012

Update on Brian - Reminiscing on China

Greetings!  Well done, Sean, for keeping up with the blog while in Ireland/China.  I thought I'd be more inclined to write, but I just wasn't.  There was plenty to write about, but I couldn't get my thoughts together enough to make sense - if that makes any sense.

Apart from the increased movement to his upper left side, Brian hasn't experienced any significant changes yet. He can now hug you with both arms.  Go ahead and ask him -  he would be delighted to show you.  He said "I haven't been able to do that for three years! Yahoo!”  Any change is an improvement.  The waiting game is painful for all of us, but especially for Brian. We were not expecting Brian to open his eyes and be able to see, or even jump out of his wheelchair and walk towards us, but I think Brian was expecting more changes, more quickly.  We may not see the cell regeneration on the outside.  Brian had such damage to his brain that the stem cells could be regenerating parts of his body on the inside only for right now.  We don't know when there will be significant changes, but most results happen between 6 to 8 months.  I think he went through a little rough patch right after China.  It's to be expected, really.  For 3 whole weeks, Brian had family 24/7.  His every whim and request was granted.  What we realized, thought, is that if there are 5 people in the room with Brian, he wants ALL the attention, and usually wants about 5 different things.  If it's two people with him - he's the same. When Jonathan & Nevis arrived, we tried to take a back seat, but we moved from Yanda International Health City in Beijing to Qingdao, 2 days after Jonathan & Nevis arrived.  The facility at Qingdao has more more advanced physical and occupational therapy, as well as acupuncture and massage therapy, so it was a great move. 

Getting Brian on and off a plane is no easy task.  Airline staff couldn't have been nicer, though.  When they would realize Brian couldn't see (which was usually because one of us would point to Brian's eyes, and motion that he couldn't see) they were extra vigilant with safety.  I have to admit - there's no way I would have been able to manage Brian by myself.  I'm so grateful that I have strong men in my life!  We were always first to board, because it took a little longer, but last to deplane as it also took a little longer.  I never paid attention to people pulling their belongings from the overhead compartments until traveling with Brian.  I was ready to pounce on anyone who swung a backpack or suitcase anywhere close to him.  I must have looked like a crazy person.  If the shoe fits and all that!

I decided there's nothing glamorous about flying anymore.  Even business/first isn't as fancy as it was in the past.  I've only ever flown business/first due to being bumped, but it's just not that special now.  Sure, you get showered with eye masks, ear plugs, and enough champagne to sink a ship, but I was okay in coach (even with 34 kids on the flight from Beijing to Frankfurt).  Shane and I actually had a good time.  Sean and Brian flew business because Brian needs to be partially sedated and then monitored.  Who wants to sit pretty much upright when you have sedatives in your system?  Brian had to be able to recline, and though expensive - he needed a companion. With a brain injury - you can't take any chances that a seizure will occur, and you're halfway to the moon so they're not about to land the plane.  Sean took excellent care of Brian.  We will always be grateful for his company/help/expertise, etc, etc.

Oh, the grocery stores - Lotte Mart, where you could purchase everything from live eel to fruit that is so ugly it should be thrown at hardcore prisoners.  I'm pretty sure the look on my face would have stopped a clock.  I just couldn't get past the "animal parts" - ALL the parts!  You can also purchase a wide variety of candy, but I couldn't find toothpaste. There's NO sparkling water in the grocery store.  NONE.  If you want something with bubbles - buy a beer.  I'm sure that's why I was so dehydrated and developed the bladder infection from hell.  Note to self - next time....bring a soda stream machine!

God bless Starbucks.  I never go to Starbucks, but we found one in Qingdao.  They sometimes had the chicken Cesar wrap, which isn't a guarantee it's chicken, but since they're corporate, I ate several.  They couldn't grasp the concept of "no sugar or syrup" in my passionfruit lemonade, so I just rolled with it.  Ice is a luxury there.  Now, maybe other parts of China are more "tourist" orientated, but we didn't really hit those spots.  Sean and I were looking for Tienanmen Square one afternoon, and a lovely Chinese lady told us we were walking in the right direction, but should grab the #1 bus instead of walking.  She even walked to the bus stop with us.  I'm pretty sure there were 300 passengers on that bus, but they yelled at you to squeeze in, until you were uncomfortably close to the person next to you, so more people could fit.  Chinese people do not shave their arm pits. 

Chinese people stare a lot.  They also spit a lot. That's right - spit.  It's disgusting.  I can barely handle kid snot, but adults spitting.  NASTY. 

I have a lovely, sweet friend who grew up in China.  His reaction to my stories was "oh, no - you experienced all the things I didn't tell you, because I was sure you wouldn't experience them".  Loan me your soda stream if I have to go again, and we'll stay friends!

Medically speaking, Brian got what we went there for.  It's amazing how fear of the unknown causes people to form opinions about medical treatments that they should really keep to themselves.  We heard everything from “What?, China?  Why would you go all the way to China"? to “Well that's just a waste of money.” Really? I'm amazed that people would tell someone in Brian's condition anything other than "go for it Brian - even if there's a slight chance that you could improve - do it".  Stem cells are the wave of the future.  Nothing hurt Brian, and nothing hurt his principles or beliefs. 

We met the most amazing families in China.  We now have "family" in Columbia, Chicago, Iraq, Spain, and Argentina!  We love them all dearly.  Each family made different sacrifices to be in China for stem cell therapy.  Each family had a different story, but one that was as heartbreaking as the next.  The thing about being in China for medical treatment - it didn't matter how much money you had, or didn't have.  You were there because your family member needed something that couldn't be found anywhere else.  Barriers that may have been evident in other arenas in life were broken if not shattered.  Family is what mattered.  It was one of the most fulfilling experiences of our lives.  We laughed and cried together.  That's what it's all about.  Oh, we also drank a little Irish whiskey together! 

In my last update I asked for friends and family to send Brian a letter/card/message of encouragement.  WOW!  We had over 120 letters/cards/emails.  That doesn't include all the people who sent lovely, encouraging Facebook and text messages, and called us on the phone right up to our departure in Dublin.  Thanks so much!  It's because of your  love and support that we can do this (you know who you are).  Never underestimate the power of words.  I heard a friend of my mam tell Brian "you are my hero".  I had to imagine Brian in a cape and tights, or I would have cried. 

The airport goodbyes are getting harder and harder.  I usually make it as quick as I can, but it's our tradition to say goodbye, then wave at one another from the bottom of the glass that separates traveling passengers to those "dropping off.”  Of course life can change in a split second, and every minute spent with people you love is precious.  I'm not sure my heart can take any goodbyes for a while. It also can't take the cards my mother writes and sneaks into the suitcase.  Why does she insist on telling me that she always wonders "will I see my child again?”  Mam loves to give dating/love advice too.  She always wants us to marry someone that will "put us on a pedestal"! How about we just marry someone two feet shorter?!

Between July 4 and August 17, I've been on 12 flights, stayed in 5 hotels (not fancy - believe me), 3 medical facilities, and 3 continents.  I'm tired of living out of a suitcase!  I just finished unpacking this evening.  How do I accumulate so much paperwork, though?  I kept receipts for everything from taxi rides to grocery store visits.

And I arrived back in New Orleans just in time for Hurricane Isaac!  I hadn't unpacked from 6 weeks in China/Ireland, when I was packing the bare essentials and heading 3 blocks away - to stay with friends.  The storm hit New Orleans as a "category 1,” which means "minimal" damage.  In my neighborhood, almost every single house lost all power by 7pm on Tuesday, August 28. I tried sleeping in my hot house (88 degrees and 95% humidity), but I tossed and turned like a fish out of water.  After 6 days of being a hot, sweaty mess, I GOT THE POWER (along with most everyone else)!  Hurricane season doesn't end until the last day of October, so we may experience this all over again!  I'm leaving town next time.

Thanks to everyone who reads this blog, supports us in any/every way.  We're grateful every day, believe me.

Much love and best wishes,

Grainne and all the Hogan Family xx

Brian Using BOTH arms!

Here's our man Brian hugging his sister Nevis for the first time in three years with BOTH arms! Thanks to everyone who made this possible!

Friday, September 7, 2012

Want to see some results of all your generous donations? Here's Brian's first two-handed hug in three years! Thanks to everyone who made this possible! Yes - YOU!