Wednesday, December 29, 2010

December Happenings

Yet again, I have failed to report in over a month.  Let's recap December.

We started off the month with Sam's 2nd birthday.  We had one birthday party at my parent's cabin in Tennessee, and one at Chris's parent's house.  Sam didn't really understand either event.  Next year maybe...

Then, I flew to Las Vegas for one last half marathon before I get too full of baby to run.  I met some friends from work, school, and from way back when.  It was a great race, beautiful weather, and I added to my half marathon finisher metal collection.  The only down side was that my finish time was pathetic.  For the first time ever, I had to stop TWICE DURING THE RACE to wait at a portapotty...running with a baby sitting on your bladder is no fun!

We attended Sam's Kids at Heart club's Holiday party, where Sam got his yearly Santa photo.  Clearly, Sam wasn't so thrilled.  Santa was a trooper, and commented that THIS photo will be the one we look back on and laugh at.  Sam also got to see his heart buddies Emery and Matthew, and met some new heart friends.  It always shocks me how many children there are with stories similar and yet so different from Sam...and these are just a sampling of children who are seen at Sibley Heart Center in Atlanta and Georgia. 

We spent the last few weeks of December shopping and wrapping gifts and attending doctors appointments.  Sam had a check up for his tubes which went great.  His hearing is back in the normal range, and we don't have to go back for 5 months.  Sam also had a 2 year pediatrician check up.  She said he looked great, and he was a trooper for his one shot.  To top off Sam's MD visits, he had a check up with his cardiologist.  He was a trooper for the EKG (he hates the stickers for the leads).  Dr. Cardis said keep on keepin' on.  Nothing new on the planning for anything - still years away from the next big decision.  I told him I was pregnant and he did schedule ME for a fetal echo.  Once you have a child with a MAJOR heart defect, your chances of having another are increased slightly.  We will have that done in late January. 

Speaking of the baby, all is going well.  I had my second OB visit and got to hear the heart beat.  So far I have been able to keep the weight gain at zero, although after this Christmas break I will have probably shot up in size.  We scheduled our 20 week ultrasound for mid January.  Chris and I aren't nearly as excited about it as we were with Sam.  We found out about Sam's heart defect at his 20 week ultrasound, and we have been scarred ever since.  We are praying for a happier experience this time around.

We drove down to Mobile for Christmas.  We did Christmas eve and day with Chris's family, who had all come in town for the event.  Sam is wishy-washy about playing with his cousins.  For one, he is not used to sharing Mom and Dad's attention with other kids.  Secondly, he is still at the solitary play phase, when his cousins would rather have physical contact with him at all times.  These, clearly, don't mesh well.  He had a great Christmas, though, and got insane amounts of toys and clothes.  He is splitting the rest of his vacation times between Chris's and my family.  Tonight we are going to Bellingrath Gardens, where they have a huge Christmas light display.  Tomorrow is Chris's and my 4th wedding anniversary, and we are planning on going out to a super nice dinner.  It has been a great holiday, and we have lots of hope and excitement for the future.

I have to end with a quick note about some heart friends.  Steve Catoe, one of the oldest surviving people with Tricuspid Atresia (Sam's defect) passed away at the beginning of this month.  We are so so sad with his passing, but much more happy that he lived and contributed as much as he did to the CHD community.  Also, a beautiful boy named Matthew, who is from our home region in South Alabama, has been born with HLHS and other defects.  He has had a whirlwind life so far, including a trip to Boston for surgery and his first bilzzard!  Say a prayer for him and his amazing family!  You can follow their blog (Matthew's Journey) which is listed in "Sam's Heart Friends" blog list to the right.

~Kathy

Monday, November 29, 2010

Could Life Be Anymore Busy??

I think not.  We have had 3 busy busy weekends.  So much for posting more often.  And sorry for no photos in this post...takes too much time, and I don't have any to spare these days...

Three weekends ago Chris, Sam and I flew up to Fairfax, VA and met up with Chris's sister and her family.  We left Sam with Chris's Mom and the rest of the kids, and Chris, Shannon, Mark and I drove to Richmond, VA for the Richmond Marathon (Mark) and McDonalds Half Marathon (the rest of us).  With the exception of a HUGE fail moment (I, Kathy Wimberly, left my entire bag of running attire in Fairfax...don't worry I bought a whole new wardrobe the night before the race to make up for the mistake, and I appologized to Chris for blaming him even though it was my responsibility), the race was glorious.  Rather flat course, fair amount of distraction, and beautiful weather.  Being preggo, I didn't set out to break any records, but I ended up finishing far better than I thought I would!  Everyone else had personal bests, including Mark in his full marathon.  We drove back to Fairfax after the race and spent the next day limping around Washington, DC.  Sam enjoyed the city, until it was past nap time.  Sam has truly be around this country in his short life.

The next weekend we had Chris's other sister Lydia and her bf come for a visit.  We had a pre-thanksgiving dinner, complete with my first roast turkey!  It was beautiful.  Sam, naturally, enjoyed having people around to entertain.

This past weekend we took an extra day off work and drove up to my parent's cabin in Gatlinburg, TN.  We spent most of the Thanksgiving holiday lounging on the couch.  Chris and I went for a run in Smoky Mountain National Park, we had a birthday party for my Mom and a pre-party for Sam's birthday, and, of course, made more food for Thanksgiving than the 7 of us could eat.  Sam had a friggin' blast hanging out with Nana.  I'm pretty sure he wouldn't have batted an eye if Chris and I drove away and left him for the week.  He didn't so much enjoy my brother, John, who spent most of the weekend trying to annoy Sam.  Anytime Sam would see him or get near him, he would start making little whiny noises and flicking his hand at John telling him to go away. 

We were all back at work and school today, which was sad.  But no fear...the busy times never end.  Sam's 2nd birthday is Friday.  We are taking the day off and heading to Mobile for a party with family.  Then, Saturday I will be flying out to Las Vegas for the Rock n Roll Half Marathon with several local PT/OT buds, a PT school classmate, and an undergrad friend.  Not to mention Sam's cardiologist appt, pediatrician appt, ENT appt, and my OB appt!  Guess I should probably get some sleep!

~Kathy

Shutterfly is Awesome

So I love a deal.  I have recently become a master coupon-er.  My friend just posted about a deal Shutterfly has to get free holiday cards.  50 free cards, to be exact.  All you have to do is be a blogger!  Ok, a few other things, but it's totally worth it.  I have used Shutterfly for all of my photo cards in the last year, as well as all of our family photos.  I have never been disappointed with the photo color, which is something that was always lacking at our local pharmacy photo centers. These are probably the three groups of cards I search for and print the most of:
Christmas photo cards: http://www.shutterfly.com/cards-stationery/christmas-photo-cards
Holiday cards: http://www.shutterfly.com/cards-stationery/holiday-cards
Thank you cards: http://www.shutterfly.com/cards-stationery/thank-you-cards
They have a great selection, clearly.  Now, if you are a blogger, go RIGHT NOW and check out the link below for how to get your own 50 free holiday photo cards!  Totally worth the effort!
http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/

~Kathy

Sunday, November 7, 2010

Strong Legs Run Results and Sam's BIG Announcement

WOW it has been a month since I have posted!  Many, many fun days have come and gone since then.  Here is the brief recap of happenings and news, then the longer update will follow:

1. We took a trip to Florida to hang out with good friends and party on the Florida campus for the LSU vs FL game.
2. Sam had successful 'tubes' surgery and hasn't had any ear problems (knock on wood) in weeks.
3. Boo at the Zoo was wonderful.
4. Halloween was a busy day, with a 5K, birthday party, and Sam's first Trick or Treat adventure.
5. We raised over 3000 dollars for Sibley Heart Center for the Strong Legs Run thanks to good friends, faithful family, and wonderful coworkers.
6. The Strong Legs Run was a big success, and Sam had a glorious time being the center of attention of both my family and Chris's family this weekend.
7. WE'RE PREGNANT!!

Ok, so we'll start back at number 1.  Back at the beginning of October we took a trip down to Florida to meet up with one of my best college friends and her wonderful boyfriend.  They are getting their PhDs at Florida, and it was a good opportunity to visit and tailgate on Florida's campus for an LSU game!  Sam had a great time hanging out with all of their dogs, meeting horses for the first time, biking around campus, and getting lots of attention from new people.  LSU won...a bonus.

2. Sam had his tubes put in a few weeks ago.  There was a slight hiccup, as the anesthesiologist failed to notice the note on our preop paperwork about a family history of an anesthesia allergy.  They had to give him an IV instead of gas, and we had to stay in recovery longer.  BUT he came through fine, and has really been sleeping better and talking more.  We had a very 'David Goes to the Dentist' moment after they gave Sam his loopy meds to calm him before they took him back.  The video is priceless.

3. The Kids at Heart group had their Boo at the Zoo event again this year.  Sam was a little more interested in the animals this year, and he figured out the Trick or Treat thing (though he never actually said Trick or Treat).  It was good practice for Halloween.

4. Halloween was nutty.  We did a 5K early in the morning, attended our neighbor's kids 1st birthday party, and then took Sam for his first Trick or Treat.  Chris pushed Sam in the stroller for the 5K and he did pretty well.  Sam loved the party.  Our neighbor made some super cute cardboard box houses for the kids to play in, and they had great finger food that was perfect for little Sam hands.  With all of that stimulation, Sam was a little done by Trick or Treat time.  He wasn't a huge fan of going up to people's houses.  He did, however, LOVE hanging out at our house and watching the kids come to the door!

5. We have been raising money for Sibley Heart Center for the Strong Legs Run with our own team, called Sam's Lub Dub Club.  We were OUTRAGEOUSLY successful.  We had a ton of friends and family donate, and had some of our team members raise literally hundreds on their own for the team.  Chris's cousin, Josh, who has battled and beat cancer TWICE raised almost 400 dollars alone!  Then, my co-workers decided to help us raise money by having several in-office events, including a silent auction.  They raised 600 dollars through those events, and then the company gave us an additional 250!  Just amazing.  We raised over 3000 dollars!  For everyone who donated, thank you for supporting this cause.  It means more to us than I could put into words.

6. Chris's parents and my parents came up this weekend to participate in the Strong Legs Run with.  Needless to say, Sam LOVED the attention.  The run itself was wonderful, although quite cold.  Chris and I ran in the 10K.  Chris had a PR, and I did pretty good, considering the circumstances (see 7).  Our parents and Sam walked the 5K.  Chris's cousin Josh and his wife also participated in the 5K.  Josh, who has half a lung due to his last bout with cancer, ran his first 5K and had a PR, too!  Josh's determination to train and participate and lead a healthy life have inspired us, and will certainly inspire Sam when he looks back on this weekend.  Josh, with half a lung, and Sam, with half a heart, are real miracles.

7.  WE'RE PREGNANT!!  We are 9 weeks along and are due June 10.  We told our parents when they arrived for this weekend's events.  I had a tshirt made that said 'Big Bro'.  When Chris's parents, who we told first, took off Sam's jacket, it took them a min or two to see the shirt.  The same moment they were realizing what the shirt said and what it meant, Sam swung the computer chair around and hit himself in the head.  He immediately started crying and then coughing, and then puked ALLLL over his shirt!  We had to rush it into the washer and dryer to get it pretty again to reveal it to my parents!  We had just enough time to put the shirt back on Sam when my parents got there.  It took them longer to see the shirt and realize what it meant.  I practically had to read the shirt to them.  Of course, everyone is thrilled.  Sam doesn't have a clue, and it's probably better that he just live out his last days of only-child-ness without knowing what the future holds!  Please say a prayer of health for this baby!  So far so good!

Wow what an update!  We have some big weekends ahead of us, including a half marathon in Virginia next weekend!  I'll try to update a little more frequently!

~Kathy

Wednesday, October 6, 2010

Strong Legs Run to Benefit Sibley Heart Center

Yes, it is that time of year again! Children's Healthcare of Atlanta is teaming up with CVS to hold their 26th annual Strong Legs Run (the full name of the race is Strong Legs Run That Weak Legs May Walk). Last year we participated, along with my parents and Chris's parents, and it was truly a lot of fun.

Just like last year, we are participating both in the races and in the fundraising. All of the money we collect will be designated for the Sibley Heart Center Cardiology group, who are Sam's surgeons and physicians. Last year, as a family, we raised over 500$. I would love to raise more this year, and get more people participating!

Race day this year is November 6 (Saturday) at Turner Field in Atlanta. There will be a 10K, 5K, one mile fun run, and 100 yard dash. The 100 yard dash is just for kids 12 and under, and they race against a whole mess of local business mascots. If you enter any race, you receive a t-shirt, and kids who do the dash get a shirt AND a finisher ribbon! This year they have more planned for the spectators, including a moon walk. Please check out the main page of CHOA to see the details (http://www.choa.org/default.aspx?id=2061)

To raise money for Sibley this year, we have started our own team! The team, in honor of Sam, is called Sam's Lub Dub Club! There are a few ways you can help us raise money:

1. To make a one time donation, go to our team page and donate under one of the team members, or under the "General Team Donation" tab! (Team Page)

2. Join our team! If you can join us in Atlanta to run, that would be great! Register from the main CVS/Strong Legs Run page and select 'Join Existing Team' and then use the drop down menu to select Sam's Lub Dub Club. After you pick your race and participant t-shirt size, you will be directed to set up your own personal fundraising page. Once again, anything extra you earn through your own fundraising campaigne, will go to The Sibley Heart Center! (Main Race Registration Page)

3. Can't run with us? Join our team anyway! You can still join the team and fundraise, even if you can't come and race with us. Under the main registration page, where you select which race you want to participate in, just select one of the two options: "Phantom Racer" if you would like an official race shirt, or "Fundraiser" if you would rather skip the shirt but still raise money.

There are benefits to joining our team! If you earn $50 (not including your race entry fee if you are going to race) by TODAY OCT 6, you get a Sibley Heart team tshirt (I know, cutting it short right?? Last year they extended this deadline but not sure about this year). As you earn over 100$, you start to earn gift certificates towards your choice of grocery stores/ restaurants/ etc (last year they also did visa cards). We are also considering making a Sam's Lub Dub Club tshirts to sell and to give to people who earn or donate 100$ or more, so be on the look out for that announcement!

Please take some time and consider a donation, or consider running with us, or fundraising with us! Clearly we think this is a great cause...The Sibley Heart Center is the reason Sam is with us today! If you have any questions, please contact me by email at kathywim (at) gmail (dot) com.

Thanks for your time!

Kathy

Saturday, October 2, 2010

Stuff Stuff Stuff

It always feels like I don't have anything to write for weeks and then BAM I have 100 things to say. 


First, I have a prayer request (or 3).  My cousin-in-law Josh's wife Kimberly's mother died this past week after just being diagnosed with Leukemia.  This was very sudden and clearly they are in shock.  Please say a prayer for peace for them.  Also, two heart families are in the fight of their lives.  Joshua has had 2 open heart surgeries last week, and remains unstable.  Ewan is stuck on ECMO after his heart surgery, and can't seem to ween off.  Both of these children are mere weeks old, and both families are struggling to find peace in their children's suffering.  Please say a prayer for them and their families as they face a true unknown with their babies.


The Wimberly family has had an eventful weekend or two here lately.  After Sam recovered from his fever and ear infection last week, we made a trip down to Mobile and then Baton Rouge for an LSU game.  We took Chris's brother over with us to LSU.  We met my parents and brother there.  We watched my sister warm up with the band (she's in LSU's marching band), walked the campus, met up with old friends, and scored some tickets to the game!  Chris and Johnathan sat together on one side of the stadium and my friend Tamara and I sat together on the other side.  Chris and Johnathan had great brother bonding time, Johnathan really enjoyed seeing a college game and a college band, and Tamara and I had plenty of time to catch up on years of back logged girl talk. 


Once we got back to Mobile, we got to hang out with Chris's family a bit.  We also met our new niece, Penelope Anne.  Sam didn't seem to interested at first, but once he saw me taking photos of her, he wanted in on the action.  He gave her about 10 kisses on the head while I took photos.  He was very gentle, but I know he was more interested on stealing the spotlight than being sweet to her.  She's beautiful though, and I can't wait to see her grow and gain her personality (as I'm sure she got quite a personality from BOTH of her parents)!







 We had an uneventful week this week, with Sam's flu shot being the biggest excitement.  We decided to travel a little north yesterday to see our high school band directors new band again at their football game in McDonough.  Sam had a FREAKIN' BLAST.  He danced and cheered, waved at cheerleaders, and got to play the drums thanks to Johnny. We left at half time to catch some dinner before the ride home.  Sam hammed it up at the restaurant, and practiced all of his animal sounds.  He got quite a few compliments on how cute he was and how good he was being.  He slept SOOOOO well last night!

Coming up this week: Announcements regarding the Strong Legs Run to benefit Sibley Heart Center, me and Chris starting to get serious about running (we have now signed up for a 10K and a half marathon in Nov), and a trip to Florida to visit friends and tailgate for the LSU game!

~Kathy

Sunday, September 19, 2010

What?! It's Mid-September?!?

Holy geez...where is time going?!?

We kicked off September with a trip to Gatlinburg, TN to my parent's new cabin.  They are slowing moving in furnishings to start renting it out as a vacation home.  Sam had a blast running around the big wrap around porch and being the center of attention. 

Sam finished his round of antibiotics from our most recent ear infection, but I could tell he wasn't quite right. This past Friday, he woke up a little warm.  I took him to day care anyway because he didn't have a true fever, and he was acting normal.  I was planning on calling the pediatrician to get a new antibiotic bc I knew the first one didn't do the trick on his ears.  Before I could even get a mile from his day care, and before I could pick up the phone to call the pedi, the daycare called and said Sam had thrown up.  I had to cancel my patients for the day, and Sam and I took a trip straight to the pediatrician who confirmed his ears looked quite bad.  We started a stronger antibiotic and Sam and I spent the rest of Friday cuddled up together. 

He was feeling a little better by that night, and we decided to go ahead with a small trip to McDonough,GA to see our high school band director at his new high school's football game.  Johnny was always so great to us when we were kids...he always felt like one of 'us' and made us feel like we were equals with him.  Some of Chris's and my best memories were with Johnny and the band.  It was so nice to see him again and watch him interact with his students.  Sam enjoyed it all too, and danced in the stands to the music.

Saturday, though, the fever returned with a vengeance.  Sunday (today) wasn't much better.  The fever finally seemed to pass this afternoon, but the crankiness didn't.  This has been by far the worst  ear infection...I'm starting to wonder if we have and ear infection AND something else.  Hopefully he can kick this thing quick, and make it until tubes (Oct 20) without another illness.

Today I got to talk to a sweet lady named Joy.  She is from our hometown, and just recently had a beautiful baby girl who was diagnosed with an apparently quite rare congenital heart defect.  It was so nice to talk to her.  We had a lot of the same feelings and internal conversations regarding diagnosis, doctors, and the future.  I look forward to keeping up with her and her family and helping each other through the craziness that is CHD!

~Kathy

Tuesday, August 31, 2010

CHOA is the Best (and other News)

Sam had his ENT appointment in Atlanta today.  We nearly missed the appointment because somehow we got lost...even though the office was RIGHT outside of Sam's CICU stepdown room from when he had his surgery!  Of course from the second we step in the door, we remember why we love CHOA so much.  EVERYONE is nice, helpful, and truly cares.  Everything runs efficiently, everything is clean...it's just the best place for anyone to take their kid to if they are in need of special care.

Anyway, the doctor was super great.  He looked in Sam's ears with a microscope thing (of course the nurse and I had to totally restrain him which he of course fought with all his might).  He saw right away that Sam has his 8th double ear infection.  He also admitted that Sam definitely does need tubes.  He immediately asked us if we had every had Sam's hearing tested.  Of course we hadn't since he was born.  The doctor ordered a hearing test and the audiologist came right away.  Sam and Chris went into a sound booth and the audiologist did her thing.  In the end Sam's hearing came out below normal, and worse on the left than right.  She says it's probably just because of how clogged up his ears are, and we would retest after tubes were placed.

The doctor (who is the only ENT who does surgery with the cardiac anesthesiology unit at Egleston) looked at his surgery schedule to find us a date.  He is clearly a busy guy.  Not only is he the only ENT who does surgery at Egleston, he is also the only guy who does cochlear implants in Atlanta.  SOOOOO his first open appointment for surgery was OCTOBER 20!!  UGHSLKSHDFLHUGH!  He did graciously tell us that if anything came open before that date he would put us in. 

Poor little Sam, though.  I knew he was getting an ear infection.  Aside from our puke/diarrhea night, he has spent the last few nights crying every 30 min.  I've been giving him Motrin every 6 hours or so for the last day, and he still had a 99 fever at the ENT today.  He was a good boy the whole time (aside from battling me and the nurse).  He didn't like the ENT too much after the microscope incident.  As we were leaving, Sam, Chris, the ENT, and I were walking to the front door.  Sam, who was walking with us, wouldn't take his eyes off the ENT...didn't trust him I suppose.  Anyway, poor suspicious Sam walked right into a wall and dropped to the floor.  Chris and I were laughing so hard, the ENT ended up picking him up off the floor.  Poor kid.

So to recap: CHOA is amazing, Sam needs tubes (Oct 20), Sam walked into a wall. 

~Kathy

Monday, August 30, 2010

Boooooo to Thieves

So last night, our car got broken into.  It was parked in our driveway right next to the house.  Unfortunately, we left it unlocked.  Naturally someone would be checking for unlocked cars on the ONE NIGHT we leave the car in the driveway AND unlocked.  My husband had his Zune and Garmin GPS stolen.  The person didn't take my purse, or some of Chris's work tools.  Makes us think it was probably a teen.  I wrote an email to everyone on our neighborhood directory and got back quite a few responses from other people who had stuff taken out of their cars last night, too.  That really just ruins your sense of safety and confidence in your neighborhood.  And we live in a good neighborhood, too.  Sigh.

Of course, we probably came pretty close to catching the jerk.  Last night, we were up every 30 min with Sam.  He had a good tummy bug (diarrhea and puke).  He was pretty dehydrated today but was fine.  We stayed home together and vegged out.  He did help me do something productive: finish shopping for all of our nieces' and nephews' Christmas gifts!

On deck for tomorrow: Sam's big ENT appointment with the only ENT in Georgia who will perform any ENT based surgery on children with congenital heart defects with Egelston Hospital's Cardiac Anesthesiology team!

~Kathy

Tuesday, August 24, 2010

Successful Cardio Appointment

Sam had his regular 3 month cardiology appointment.  In case you have forgotten our history, Sam is a major doctor-phobe.  You could tell they were prepared for a fighting match.  The intake nurses closed the door behind us when we got into the EKG room, and talked over a game plan.  But Sam was surprisingly docile.  He still isnt a big fan of the stickers for the EKG, but he let them get all the readings they needed.  Pulse oxygen was at 83%, BP at 100, weight was 30lbs and heights was 36 inches (that's three feet tall people!). 

Sam even made friends with Dr. Cardis and his intern and kindly let them listen to his heart with little fuss.  Dr. Cardis ordered an echo which was unexpected on our part, but apparently it was time.  I totally thought Sam would nut up but he was near perfect for the echo nurse.  Dr. Cardis read the echo and said Sam looks great and very stable.  So stable that he wants to cut Sam back to once every 6 month visits after his second birthday.  YIKES...that feels like FOREVER between visits!

Let me take a moment and explain why Sam will be holding off on the Fontan as long as possible.  For one, his anatomy will allow us to do so.  Unlike many hypoplastic right hearts, Sam DOES have a pulmonary artery (even though it is small).  This assists in a small way with getting 'blue' blood from his lower body to his lungs (his anatomy is quite complex now...I'll save the drawings for another post).  But Dr. Cardis explained that in kids who don't have at least a minimally functioning pulmonary artery, the risk of developing small collateral vessels in the lungs rises, which leads to decreasing pulse ox rates and heart failure.  This puts the kids in for the Fontan earlier than with kids who have a pulmonary artery.

After the Fontan, the count down clock to transplant starts.  On top of that, there are consequences for other body organ systems due to the Fontan circulation.  If we can hold all of this off, we will.  Dr. Cardis told us we will go for the Fontan under 3 circumstance: 1)Sam goes into heart failure 2)Sam is unable to participate in regular daily activities due to poor oxygen levels 3)If we feel like we want Sam to participate in more advanced activities (like sports) in a greater capacity than he is currently able.   Well trust me, as much as I want Sam to experience sports, we will NOT be putting his life at risk just to do it.  Soooo, considering only circumstance 1) and 2) will lead us to surgery, Dr. Cardis thinks Sam could go YEARS before needing the Fontan...maybe up to age 10 or more.  He has told us this before, but he gave a great "Sam's Anatomy" review and I understand more clearly how we will accomplish this. 

All in all, a GREAT cardio visit.

Yesterday, a fellow heart mommy hosted a 'blog event' to help heart families link to each other.  Everyone was to share their "Heart Story" and post a link on her blog.  Our story is posted on Sam's Half a Heart page, and you can visit her web page (link below) to check out other families stories.

~Kathy

Every Heart Has a Story

Sunday, August 22, 2010

First Haircut and Other Goings-on

Sam took a 2 hour nap today.  When he woke up, his hair was INSANE.  It was frizzy, knotted, standing up on end.  It was clearly long past time for a haircut.  We took him up to a little place right across the street from our neighborhood.  I totally thought he would freak out the whole time, but he did SOOOOO good!  And the lady was super good with him.  All his silky baby hair is gone...he has big boy hair now.  So sad.  But he looks super cute.  I'm going to get him some gel so we can spike his hair up. 

Two other things I would like to briefly bring your attention to:

1. Head over to our other page (Half a Heart Full of Life) and read the most recent post.  I have a prayer request for a beautiful heart baby on the other side of the world.

2. The Strong Legs Run is coming up in November.  This is a fundraiser for Children's Healthcare of Atlanta's Sibley Heart Center (the group who saved Sam's life, and the group who will some day perform more surgery on him).  This is a 10K, 5K, 1 mile fun run, and kids 100 yard dash with a lot of other fun events scattered in between.  It takes place at the Atlanta Brave's baseball stadium.  This year we are going to make a separate team just for Sam (looking for team name ideas if you have any).  I will post the information as soon as I can.  We may be making team t-shirts to sell as part of the fundraising.  If you want to run/ walk with us, or just want to help us raise money for this amazing cause, keep your eyes open for updates soon!

~Kathy

Sunday, August 8, 2010

Our Week Without Sam

We took our first trip to Mobile in FOREVER two weeks ago.  We drive down for a few reasons: to attend a baby shower for Chris's brother and his wife, to spend the weekend at a resort on Mobile Bay with Chris's family, and to leave Sam in Mobile for a week for his own personal vacation.

We had a super sweet baby shower for my brother-in-law and his wife who are expecting a baby girl.  It was a big Wimberly Family Event, meaning most of Mobile was there.  I brought Sam, since most of the people who were there were at my baby shower and haven't seen me or Sam since.  We had a great time, and Sam was pretty good.  He's still pretty shy.  I've resigned to Sam's low oxygen being the cause of his anxiety with strangers and new places.  We know anxiety is a common occurrence with heart kids, but I just assumed this was part of a normal kid's development.  But he just gets so upset with changes in environment and people that I have to give it another cause.  ANYWAY, it was a great shower...Bradley got some wonderful things, and I can't wait to see that baby's sweet face!

We also spent the weekend at the Grand Hotel in Point Clear, Alabama right on Mobile Bay.  There was no oil to be seen, the weather was great, the food was amazing, the pool was really fun...we had a great time.  Chris's two older sisters and their children were there, along with his parents and younger brother.  Sam got to hang out with his cousin who is just a few months older.  They are still in the solitary play phase, but had some pretty good interactions. 

Chris and I left to home to Macon, but lil Sam stayed in Mobile with my family.  He spent the week between my parent's house and Chris's parents house.  I feel fairly certain he didn't think about us much.  He had a great time...he went to the Explorium, went shopping with my mom and sister, hung out in the Wimberly's back yard with all 6 of his cousins.  Chris and I, on the other hand, got all kinds of things done.  We turned our attic into a new guest room/ office, went out for a fancy dinner and movie date, went shopping in Atlanta, and I attended a continuing education class.  I missed Sam, but I didn't have a hard time leaving him in Mobile because I knew he would be well cared for and would probably have much more fun there than here!

Since Sam has been back, he's been a pretty good boy.  He moved up to the next level class at school (older toddler room).  He went shopping with me for some new clothes...he's super tall, and has hit 30 lbs!  He has been talking in 'full sentences' for a while.  NOT that you could understand ANY of it...he just babbles to you like you're supposed to know what he's talking about.  But recently, I have actually started to understand some of it.  Today, he asked Chris "What are you doing".  He told my mom (over the phone), when asked where Relo was, that "he's outside".  Let's be clear...it is very difficult to understand what he's saying...but I assure you, he is truly saying these things.  He's so smart.  I love him.

~Kathy

Thursday, July 22, 2010

Things Sam Does

Sam is growing everyday.  He's getting taller, getting a sense of humor, and getting vocal.  He has finally picked up a few more words other than Dada, Momma, and Bye Bye.  He now also regularly says Stinky, Dog, Ball, Door, Shoe, Sock, Eye, Nice, Hey, Hi, Ruff Ruff, Car, and PooPoo.  He can say a handful of names: Nana, Pop Pop (which he says in a whisper thanks to a funny incident on our camping trip with my family), YaYa (which he says when he sees the house phone), Pop, and Aunt Amanda (which comes out as a three syllable word similar to 'annannda'.  He has also said a hand full of two word phrases. He can say 'Bye Bye Daddy (or Momma)' and 'Daddy, where are you' (which really sounds like "daddy, ahh ooo"). 

He especially loves all things Dog and all things Car.  I had made a diaper cake for a co-worker, and there was a dog stuffed animal on top.  I was carrying him out to the car and we passed by the cake on my counter.  Sam took one glance and said "Ruff Ruff".  As if I didn't think that was genius enough, we were merging onto the interstate yesterday and Sam said "Ruff Ruff Car".  I thought he was just running through his favorite words, but then I realized the truck just in front and to the left of us had a dog in the back.  SOOOO smart, right??  He really does amaze me, considering we went from nothing to a whole bunch of words in just a few weeks.

His walking is getting much better, although he still falls and trips frequently...more so than I think is normal but then again I don't have anything to compare him too.  They daycare thinks he is doing great, and is already moving him up to the older toddler room.  Even though he isn't as good of a walker as the other kids, the administrator said that he is really good during structured activities in his current room (unlike some of the other kids), and she thinks he would learn more in the next room up because it is more structured.  I kind of hate it though...we JUST moved up from the baby room a month ago!  As long as they don't come to me and say they are moving him on up to Kindergarten in a month, I guess we'll survive.

~Kathy

Tuesday, July 6, 2010

On Grief and Joy

First, a Wimberly family update:  Sam is becoming quite the walker...and door opener...and cabinet inspector.  Chris and I are about to renovate and finish one of our larger attic spaces to make a playroom/office/whatever room.  Our 4th of July was wonderful: bike ride, church (with a successful trial run with Sam in the child care room), great couponing grocery store visit, Sam played with our neighbors kids in the sprinkler, watched fireworks care of Arden Park Daddies, lovely steak dinner.  All is well in Wimberly land!

But my thoughts have been other places these last few days.  A beautiful heart baby, Ruthie, who we have followed for some time, has FINALLY been blessed with a new heart.  On the same day, a beautiful 9 year old patient of mine passed away after 9 years of severe compounding medical complications of a genetic condition.  In both cases, there is joy and grief. 

For Ruthie, and her faithful parents, being on the transplant list since February has been a true test.  They have truly been an example of how to give your worries over to God and trust in the notion that there is a greater plan out there for all of us.  I have said it before, and must say it again: seeing these heart children survive waiting on the transplant list, and then successfully receive and thrive with a new angel heart is so relieving to me.  I know Sam's fate will one day hinge on the results of the same journey.  I marvel in these children and families who go from rock bottom to a birth into a new life.  But to get there, to achieve new life, there must be death.  Another family has to go from life to rock bottom.  A mother and father, sisters and brothers, grandparents and family...all must say goodbye to a life that has hardly begun in order for another child to go on.  Death creates life in a literal sense.  It is beautiful and horrifying.  It is a hard pill to swallow sometimes...that one day we may be praying for the death of another to bring life to Sam via the selfless generosity of a grieving family.  That someone else's grief might bring us ultimate joy...it is a concept I doubt I will ever be able to fully grasp.

I had another encounter with grief and joy this week.  I have been working as a pediatric physical therapist for 5 months now.  In my first few weeks, I met a beautiful little girl with an extremely complicated medical past.  Though her body and brain had been ravaged by years of suffering the symptoms of her condition, two things shined through: her perfect innocence, and her families unwavering faith.  I felt at once completely overwhelmed by her impairments and yet completely compelled to do everything I could to help this child and this family.  I researched what I could, spoke with other professionals, tried to find new medical equipment to ease the burden of caregiving.  Just when I started to feel like a plan was coming together, she got sick.  Within a week she was REALLY sick.  Her years of suffering had finally broken her body.  Her family was quick to point out, though, that this was a moment for joy.  Her suffering would soon be over, and she would be dancing with the angels in heaven in a way she had never been able to dance on this earth.  At the same time, I can't imagine the depth of this families grief, as the daughter they have literally built their lives around slips away.  Their most recent CaringBridge post was two sentences long.  It described the scene of this beautiful creature's passing from this earth to the next, as she and her sister fell asleep together wrapped in each others arms. 

A few posts ago, her mother shared the thoughts of another mother who had also had to watch her daughter fade away.  She said,"Grief and joy danced together as if they had a right to."  I have contemplated that idea deeply over the last few days.  I have decided that rarely do grief and joy NOT appear together, although it is often hard to see one or the other at the time.  Grief and joy shape the most pivotal moments of our lives, and in times of extreme grief, we must find the joy in order to make sense of the pain and to move forward. 

I would like to share one more story.  Krisanna, the inspiration for my career, and her family are another example of allowing joy to wash away the grief.  Though she had been diagnosed with a cancer that would almost certainly one day take her life, she continued to spread the most bright yellow attitude of hope and gratefulness.  Her parents were the same way.  Even now, almost a year since her passing, her mother writes often of the 'coincidences' throughout her day that remind her of her daughter's bright shining life.  When reading the last few passages of Krisanna's life on her CaringBridge, there is very little grief.  Don't get me wrong, the loss of their daughter was absolutely devastating.  But even in this worst of the worst moments, her family chose to share every drop of joy they could find, which has left a true legacy of 'yellow' - Krisanna's self chosen color to describe happiness.  One particular passage I reflect on often was a story Krisanna's mom shared from one of Krisanna's final days.  She was beginning to sleep often and have difficulties telling the difference between reality, memories, and dreams.  She had begun to tell her mother she was seeing angels.  That alone gives me chills.  Her mother goes on to write that Krisanna told her the angels wanted her to choose between two beautiful things.  Krisanna never described what exactly the angels were offering her, but her mother believes they were trying to coax Krisanna away from her ailing body to her rightful place in heaven. 

I'm so glad her mother shared that story.  I don't know what exactly Krisanna was seeing, but I whole heartedly believe what she was seeing was real.  It solidifies the sense that, in the darkest hour, there is something greater awaiting us.  That in our greatest of grief, there awaits joy.  I can see Krisanna playing in a beautiful yellow dress, perhaps the beautiful 'thing' offered to her by the angels.  I can see a whole, able bodied little girl, my patient, skipping and smiling and doing the things she never experienced here on this earth.  I see Ruthie's new guardian angel, birthed into a new life of his/her own in heaven, smiling down on the brave and generous family members who allowed his/her life to grant life to others.  All three of these angels lived a heartbreakingly short life.  But short does not have to equal sad.  All three have touched the lives of many many others in a way that I feel I, in my 27 years have come no where close to doing.  If I have learned one thing from these three stories (and trust me, I have learned MUCH more), it is to find the joy in the grief, and to allow the two to dance together without shame when the music is just right.

~Kathy

Thursday, July 1, 2010

Vacation

After Sam's disappointing ENT experience two weeks ago, we recharged on a family vacation! 

We drove up to Stone Mountain Park in Atlanta for the first leg of the journey.  My parents and sister met us there.  Stone Mountain isn't exactly our idea of a great camping vacation, but we went there for a purpose.  Chris and I signed up for the Muddy Buddy race months ago.  This is a bike/run adventure race that benefits the Challenged Athlete Foundation, which provides special equipment and prosthetics to disabled athletes.  The race is a team event with trail biking, trail running, obstacle climbing, and mud pit crawling.  It was a lot of fun (even though it was 140 degrees outside).

After the race, we drove up to Great Smoky Mountains National Park.  We camped in the park for 5 days.  It was much better weather in the higher elevation.  We did some beautiful hikes, played in the rivers, and tagged along as my parents bought their 'dream' retirement home in Gatlinburg, TN!  Sam had a FANTASTIC time being TOTALLY spoiled by my parents and sister.  He enjoyed camping, too, and got to spend every night on a queen sized bed all to himself in my parents pop-up tent trailer. 

Even better, Sam learned to WALK!  He finally caught the hang of it while we were shopping in a great outdoor sports shop that had a super cute crawl space decorated like a bear's den in their kids clothing department.  I guess he got excited and curious enough to just go for it!  Since then, he's practically mastered walking.  AND he wants to walk EVERYWHERE.  We could not be more proud or happy!

Unfortunately, he did recently master something else: the fine art of temper tantrums.  He now REGULARLY throws himself down on the ground, kicks his arms, throws his legs, bangs his head, and screams at the top of his lungs.  Usually, he does this for NO APPARENT REASON but to try it out.  Ugh.  We are doing out best to ignore it, but if anyone has any other suggestions, I'm willing to listen!

~Kathy

Wednesday, June 16, 2010

Soooo upset...

Well, Sam was supposed to have tubes tomorrow.  We went for pre-op today, and his anesthesiologist chickened out of the surgery bc she was scared of Sam's heart defect. 

I got Sam to the ENT center for Pre-op at 1.  We waited for 45 min.  During that time, Sam and I had an experience I'm sure most mommas have at some point.  He made a big poo diaper...and momma had no fresh diaper on hand.  I improvised...cleaned up Sam and his diaper as much as I could and reused it.  Totally gross, I know, but he couldn't sit it a totally dirty diaper!

After 45 min they brought us back and spent all of 5 minutes asking us basic questions.  I made sure the doctor knew I was worried Sam was coming down with another ear infection. Sam has gotten a runny nose, and then this morning woke up with a croupy cough.  He assured me they could still do the surgery with an ear infection.  BUT he didn't even look in his ears.  Oh well, I thought, move on.

After we finished there we went straight to the Medical Center's Surgery Center.  Sam couldn't have the procedure at the ENT center bc of his heart.  They just wanted him in a more acute care location incase he needed it.  We waited in the Surgery Center for an hour.  For the most part Sam was good.  He did gag on a french fry and throw up all over himself, myself, and the floor.  So if you're keeping track, we are on our 3rd hour of doctors offices, we have a had a big poo, and a nice juicy puke.

We finally got called back and once again, the whole process lasted about 5 min.  They just asked us basic questions.  The nurse was super nice, and wanted to know all about Sam's heart, and I totally indulged her.  Sam, stressed out from the long waits and yet another small doctors exam room, fell asleep in my arms while the nurse and I talked...he hasn't fallen asleep in my arms since he was an infant.

Just before we were finished, I asked when we would get to talk to the anesthesiologist.  I only asked because when our CARDIOLOGIST CLEARED US FOR SURGERY (an important part of this story), he told us to be sure the anesthesiologist was clear on Sam's condition.  The nurse called and brought the head of anesthesiology to talk to us.

RIGHT AWAY, the anesthesi looked totally freaked out when she read Sam's diagnosis.  She immediately started back pedaling, saying that we couldn't do the tubes procedure at the Medial center.  She was saying that if something went wrong with Sam and anesthesia, the Med didn't have the know how to save him due to his complex heart.  She said the best thing to do is cancel surgery and start this whole process again with a doctor at Egleston in Atlanta.

I was BAFFLED.  1) The pediatrician cleared him for this 2) The cardiologist cleared him for this 3) the ENT cleared him for this 4) we KNOW heart kids who have had tubes done at the Med.  WTF!!! 

Trust me, if the HEAD of anesthesi was too nervous to touch Sam, then  I don't want Sam anywhere NEAR the Med.  BUT I so upset we aren't doing this surgery tomorrow.  He's suffered enough with these ears.  On top of that, I feel like the ears are the key to him walking and talking better.  From our checkbook and calendar's perspective, Chris and I have taken off MULTIPLE days to get Sam to this point with the ENT, not to mention multiple co-pays.  Now we are starting all over. 

The Anesthesiologist told us we need to do this surgery at Egleston, where they have a cardiac anesthesiology team.  That's all fine and dandy, but that requires more days off from work and more co-pays and MORE TIME for Sam to continue to suffer with ear infections, poor speech, and poor walking.  I'm so so sick of the medical center.  After our bad experience the night he almost died and now this,  I have pretty much decided we need to just move to Atlanta and buy a house across the street from Egleston.

In a way, that is a joke.  But in a way, it's not.  In reality, we are now an hour or more away from the only hospital who can help Sam with ANYTHING, not just his heart.  Think about what that means for the future.  Chris and I will never be able to just move anywhere we want...we will have to stay near a pediatric cardiac center.  Sam will never just be able to move anywhere.  We're already limited in our travels due to altitude concerns.  I don't want Sam to be held down by this stupid heart thing but everywhere we turn, we hit walls.

So the next step is to get an ENT at Egleston and start this whole process all over again.  Even that will be an act of congress, because our ENT in Macon didn't know anyone at Egleston to refer us to.  To add insult to injury, we had to pay over 600$ today in 'downpayment' for Sam's tubes.  After they officially cancelled the procedure, we were told they couldn't cancel the payment...that we would have to wait for 24 hours until we could put in a request for a refund. 

And after all of this, we are still left with a little boy who is probably coming down with an ear infection.  I got in appointment with the pediatrician tomorrow.  Naturally he would get sick right before we leave town...

The two highlights of the day: Sam falling asleep on my shoulder, and my amazingly good couponing week at publix (spent $40, saved $95).

~Kathy

Thursday, May 13, 2010

Tuuuuuuuuubes

Poor Sam.  He had an ENT appointment today.  Since January, he has had 4 double ear infections and busted his right ear drum once.  Clearly we have a problem here.  Chris has hearing loss due to chronic ear infections, and my brother John had to have tubes.  I figured this is where we were headed.

Other than the pediatrician and cardiologist, we haven't been to any other doctors.  The ENT office was interesting.  It was one of those offices where you just keep getting moved into progressively smaller waiting rooms over the course of two hours before you get to see a doctor.  Sam was an ANGEL during all the waiting.  I was so proud of him.  Then when they FINALLY called us back to start checking out his ears, it just went down hill.

The nurse (who looked 16) told me they had just been delivered some new equpiment, and had just been trained on it, and to please 'bare with' her while she figured it out on my son.  YEAH RIGHT.  She started trying to stick this audiology device in Sam's ear and just COULD NOT get it right.  After 5 min of Sam screaming his head off while I held him down just for this chick to NOT figure out how to use the equipment, I told her this wasn't going to work.  She left to get some back up help.  When she came back she said the Dr told her just to use the old equipment.  Unfortunately that still required ear sticking and me restraining Sam.

After 5 min of fighting with everything he had, Sam was drenched in sweat and purple.  When we were directed back into the small waiting room, every eye was on us.  Including about 20 pairs of completely freaked out little children's eyes who had clearly heard every noise Sam was making in the room.  I took Sam into the hall way so he could cry it out in privacy. 

They called us back to another small room to wait for the Dr.  Just going into a small exam room set Sam off again.  The Dr came in with Sam already screaming, so he just got right to checking out his ears.  After getting Sam settled down with a nice sucker, the Dr told me Sam's ears are full of old fluid that just isn't draining.  He suggested tubes, and soon.  FINE with me!  I'm so tired of him hurting through ear infection after ear infection.  The Dr also said he doubts Sam is hearing very well, and agreed with me that this could be adding to the reason why Sam hasn't started walking.  I told the Dr we aren't gun-shy about this surgery...we've been through much worse.  Sam won't even need an IV...they just knock him out with laughing gas and then the whole procedure lasts 5 min.  Sounds like a plan to me!

We have to get some things squared away though.  For one, Sam has to get a fresh Echo.  That will be the first thing on the list to do tomorrow!

~Kathy

Sunday, April 25, 2010

Where to Start!

It has been a busy busy few weeks!  Go get you a snack and a coke and get ready for a long read...

My parents, brother and sister came up to Macon for Easter.  Sam was shy at first, but he quickly realized he had a house full of people to entertain.  He was more active and playful than I have ever seen him.  In fact, he COULD NOT go to sleep.  He just wanted to play play play.  He got some great new toys from the Easter bunny, too.  He got a gigantic blow up soccer field/ball pit, a push car (he rides, you push), letter blocks, and books just to name a few items.  He was so good for everyone.

The day after they left, Sam made up for his good behavior by being SUPER SUPER cranky and bad.  By the end of the day I realized something more was up than Sam just missing his company.  We had to take him to an urgent care (since it was so late in the day).  Naturally, he had a double ear infection.  This makes the third double ear infection in 4 months.  They put Sam on a strong antibiotic, which totally messed up his little tummy. 

The next weekend one of my best friends from undergrad, Gretchen, and her bf Jeremy came up for a visit.  Once again, Sam was shy but quickly realized he had new playmates and new people to shower him with attention.  They brought Sam a stuffed animal Gator Mascot from their PhD school (Florida), and brought Chris and I homemade bread and wine (FANTASTIC).  It was so great to hang out and catch up, and they enjoyed meeting lil Sam.

We went to a two week follow up on Sam's ears.  When she checked them, they didn't look any different than before the super stong antibiotic!!  UGH.  She put us on ANOTHER antibiotic, and a probiotic for Sam's tummy (at my request), and she is going to send us to an ENT.  She said tubes are a possibility, but that since summer is coming, they may wait until the fall.  I'm all for tubes tomorrow!  I have heard nothing but good stuff from tube patients, and I'm starting to wonder if these stuffed up ears and constant ear infections are what is causing his delayed walking and low vocabulary.  The day after his appointment, Sam was clearly in pain and even threw up.  Needless to say, Sam and Mommy had a day off of school and work, and worked on getting him comfortable and happy.  Once we got a few doses of the new antibiotic and Motrin in, he was much better.

This weekend was a big one.  Chris's mom came up from Mobile to watch Sam while Chris and I drove to Nashville for the Country Music Half Marathon.  Sam quickly got excited about having YaYa to play with, which made it super easy to leave him for the weekend.  Chris and I drve to Nashville and met up with some friends of mine from my old job.  The day of the race was a real adventure.  Traffic was so bad, we almost missed the busses from the parking lot to the start line.  We just made it to the line when the start gun went off.  The race itself was fantastic.  But the weather slowly got bad and by the time I was a mile from the finish line, rain was falling and lightning was poppin.  Chris and my friends had already crossed the finish line, but we were all lost from each other in the crowd and ended up searching the finishline area for over an hour in the rain looking for each other.  After a much needed nap at the hotel we went out to a local Thai food place and celebrated our collective good showing in the race. 

We drove home today, and I think Sam was once again sad to watch his weekend attention factory drive away.  He had a good time with YaYa, and was still so worked up from a weekend full of playing that he refused to go to sleep.  Poor thing. 

I'll post race photos as soon as I get them from my friend (who did a 100% better job than me of documenting the weekend)!

~Kathy

Tuesday, March 30, 2010

1st Glenn-iversary

One year ago this past Saturday: 
- Sam had problems sleeping and the doctor ordered supplemental oxygen
- A quick trip to the hospital to get the O2 turned shockingly bad, as Sam's supplemental oxygen needs went from .25 liters to 3 liters by midnight

One year ago this past Sunday:
- Sam was intubated so they could figure out why he suddenly needed oxygen
- Intubation didn't help...hours past midnight, his O2 dropped to 32%, his blood pressure dropped so low they couldn't read it, and his heart rate shot up to 220 (human max).
- Sam needed LifeFlight to Atlanta, but it was storming so bad they had to send the ambulance.
- We were told Sam had a 50-50 chance of surviving the hour trip to Atlanta via the ambulance.
- We were told if he survived, he would need ECMO (external lung), and may not be a candidate for life saving surgery.
- Chris drove 100 miles an hour in our car while I rode in the front of Sam's mobile cardiac ICU ambulance from Macon to Atlanta as the sun was rising through the clouds...I prayed the rosary the whole way, and had never felt so alone.
- The amazing doctors in Atlanta's Egelston hospital stabalized Sam in minutes, WITHOUT ECMO!
- Sam was alive, but comatose and on more IV drugs than I thought possible.
- They bumped all surgeries back so that Sam could be first on the caseload of the Chief of Cardiothoracic Surgeon.

One year ago TODAY:
- Chris and I, both literally sick from exhaustion and worry, gave our son one last kiss as they wheeled him through the operating room doors.
- We sat with both of our parents in a waiting room full of people who were waiting on their own miracles.
- Sam came through the operation, the Bi-directional Glenn, with no complications, and even came off the ventilator that same day.
- The first time we saw Sam, he was pink from head to toe...something I have decided only a heart family can appreciate the feeling of.

Today, our Sam is just like any other kid on the outside, with the exception of his scar.  On the inside, he is stable and healthy.  It is hard to believe he was so sick just a year ago.  Sam brought many many people throughout this country and even the world to God in prayer, and together with God we all got to see a miracle.  I can't thank everyone enough for the prayers and support we have received, even before Sam was born. 

I think it took me a while to 'bond' with Sam after he was born.  We were so scared about his heart and about his future that we didn't live in the 'now'.  If there is one thing Sam has taught me, it is that we only really have 'now'.  I had no idea what kind of gift I had been given in Sam until it was ALMOST taken away, and then given back to me!  The second they told us he only had a 50% chance, I knew I could not live a second without him.  And I can tell you that I cherish EVERY second with him...even the ones when he is cranky, crying, and throwing food off the table. 

Happy 1st Glenn-iversary Sam!  It is certainly a day we will never forget!

~Kathy

Sunday, March 28, 2010

Bowling for Beads and Hunting for Eggs

Another busy weekend...

We drove to ATL for the 5th time in three weeks on Saturday.  We participated in a fundraiser for a program called Beads of Courage which is coming to the Sibley Heart Center (Sam's cardiologist/surgeon group).  The program gives hand made glass beads for each procedure/hospital stay that a child goes through.  The child/parent journal about each bead, and it is set up as a way for the child to claim an ownership over their medical achievements.  The fundraiser was at a SUPER nice bowling alley at Atlantic Station, a SUPER nice shopping center in DT ATL.  Sam met up with his heart friend, Matthew.  This photo of the two of them looks extremely similar to the last photo I have of the two of them...Matthew is being soooo good and Sam is being a total butt.  Fun was had by all, and I can't wait for Beads of Courage to start at Sibley!

Sunday was great, too.  Our neighborhood (which is relatively new) finally pulled together an active neighborhood association.  They had their first big event...an Easter egg hunt!  We got to see/meet a lot our neighbors and their kids.  Sam hung out with his friend James, who is just 4 days older than him!  We met a family who's 3 year old daughter had open heart surgery  at Egleston a year ago, and who's cardiologist is Sam's cardiologist!  Sam found a few eggs, ate a really messy cookie, and showed off his bike cart to his friends! 

Afterwards, Sam ate dinner and got a bath.  While I was running the water, I stripped Sam down in the bathroom.  He was kneeling by the bathtub and getting super excited to get in; I've never seen him jump up and down with excitement for a bath!  When I finally lifted his naked butt into the tub, I realized he had left a little puddle of pee on the rug by the tub.  Guess the excitement was just too great!

~Kathy

Sunday, March 21, 2010

Cherry Blossoms and Coca Cola

We had a busy weekend.  Chris's sister Lydia and her boyfriend Mike came to visit.  Thanks to some Atlanta traffic, they got her a touch late for Sam, but we braved going out to eat anyway.  Naturally Sam nutted up in the restaurant, and threw up in a bread basket (a common occurance with Sam and restaurants).  He showed very little stranger anxiety though, so that's some good news!

Saturday I took Sam to get some portraits made.  We had a bad experience at this place last weekend, and ended up leaving after an hour of waiting.  BUT they tried to make up for it this time...no pushing us to buy more, took her time, and gave us 45$ worth of freebies.  Afterwards, we went to the Cherry Blossom Festival in downtown Macon.  We watched the Dixie Disc Dog Championships...always fun.  We saw some friends (yes, we do have friends in Macon now) and had a good time in the sun.

Today we drove up to Atlanta and went to the World of Coca Cola Museum.  Sam didn't get a nap, and was pretty much a butt the whole time.  He did like sampling cokes from around the world though.  We went to the Varsity, said goodbye to Lydia and Mike, and then drove to the Tanger Outlets for some shopping.  Sam got an adorable swim trunk/top, hat, and sunglass combo.  Needless to say, Sam went to bed early and all is well!

Keep praying for Emery.  She is having some pressure problems, chest tube drainage problems, and continues to have high antibodies.  She is awake and alert, which is good and bad...she wants to be held but her sweet family can't hold her much because of the chest tubes.  They are hoping for some resolution this week, and maybe to move to the step down unit.  I know most of you don't know this family, but it is important that this heart transplant be a success, not just for Emery, but for Sam.  Sam, too, will some day face a heart transplant if no other technology develops in the mean time.  Emery's success is Sam's success, as it is the success of all of these babies who need transplants. 

~Kathy