Thursday, June 23, 2011

A year ago today: Ramblings on Feeding Issues

A year ago today, I sat at our laptop computer while Jack, then not only 4 weeks old, napped peacefully in his bassinet, and I wrote my first blog post.  At that time we had gotten through some challenges, such as jaundice, an unexpected diagnosis, trouble gaining weight, but we were still facing some other challenges, like my difficulty with breastfeeding.  Our feeding hurdles were perhaps the most troubling for me, as breastfeeding was so very important to me, and it was very frustrating to feel that my body just didn't know how to do it.  What it boiled down to, though, was simply that I wanted my child to get the best nutrition he possibly could, and being a nurse, I knew that the best possible nutrition came from breastfeeding.  And, here I was having to supplement Jack with formula, not because he had trouble breastfeeding, but because I never produced enough milk.

Well, what do ya know?!?!  A year later, we found ourselves facing feeding difficulties once again.  It all started a month ago about a week before Jack's first birthday when he got his first real ear infection, which was not fun.  (Let's just say, no one in our house got much sleep that week.)  As for feeding that week, well Jack just didn't want to eat solids hardly at all and mainly just stuck to the bottled formula.  I didn't worry too much, thinking it would pass and attributing the behavior to the fact that Jack didn't feel well and that the sucking-swallowing mechanism of the bottle probably relieved the pressure in his ear.  After 10 days of antibiotics and a great Well Baby 12-month checkup at the pediatrician, Jack's ear seemed better, and we took the physician's advice to transition Jack to regular milk.  So we did just that, despite Jack's still suboptimal solid intake.  Two words .... BIG MISTAKE!!!

Poor baby boy got so constipated that we had to resort to solutions that I will not go into here, and this all just made his reflux worse, which in turn made his intake of solid foods worse, and so on and so forth.  There were some days that Jack barely ate a bite, and he started taking to aggressively swatting the spoon away with his arm (a move Robert has coined as Jack's "karate chop").  All Jack would take was his bottle of milk.  This crushed me.  I found myself spiraling back into all those emotions I felt a year ago .... worrying about Jack's nutrition, wanting to give him the best nutrition possible, and feeling helpless in my ability to do so.  So, I did what I usually do in trying times ... I read everything I could read about feeding and Down Syndrome, and I called for backup ... I spoke with my CDSA Service Coordinator, our pediatrician, a nutritionist who made a special home visit, our GI doctor, our Occupational Therapist, our Speech Therapist, our Developmental Therapist, and even our Physical Therapist.
Is it reflux?  Is it constipation?  Is it his ear?  Is it something new we don't know about?  Or, is it just Jack being stubborn?!?! 

That brings us to the present.  Despite many different professionals' many different opinions and advice on the topic, Robert and I chose to just listen to our own parental instincts on this one.  We took from the professionals the bits of information that we felt would work for us, and we decided to just "get back to basics" with Jack's feeding.  Until we figured this problem out, we decided to place Jack back on formula because we simply felt we had no choice, since he was not getting the nutrition he needed from regular milk alone.  We started Miralax daily per our GI physician's recommendation for Jack's constipation and continued his daily Prevacid for his reflux.  We also decided to go back to pureeing Jack's food to the consistency that we knew he was most comfortable with until we get him over this hump.  We will work on table foods later.  I felt a little bummed about all this at first, scared that Jack's feeding was regressing.  But I now realize that transitions just have to be more gradual for children with Down Syndrome, and we just simply went too fast with it all for our Jack.  He already wasn't eating well due to his ear infection, and then we tossed another curve ball at him with the transition off formula.  Not fair to the little guy .. and boy, did he let us know it!!!

So far, our new little plan is working.  Jack is eating much better this week.  Not awesome, but better.  Some days are easier than others, and Jack still "karate chops" us during mealtimes occasionally.  But, we've learned to take it all in stride, because after all, it is in fact funny when he resists us.  It's cute to see his sassy little personality blossoming.  We're also finding that if we have fun with meals instead of stress over them, Jack senses the mood and eats better. 

Something that is also different about this week is that I have been home with Jack all week and have been dedicating most of our time to this whole feeding obstacle.  This week, I officially went "relief" at work (meaning I'll pretty much a substitute nurse for the time being).  I was feeling overwhelmed juggling my long work hours with all Jack's appointments, and I craved more time for it to just be "us."  And, it's been WONDERFUL to have that "us" time this week!  This new time together has bred many new things in Jack's world.  This week Jack has not only been eating better, but he he has been trying his best to crawl and pull up to stand, he imitates EVERY noise I make (including a cute little "Indian" call we do), he turns pages in board books, and he drinks from a straw cup while sometimes holding it himself! 

It's so funny how it seems like Jack knows everytime I start to really stress over him not doing something.  And right when I'm about to lose my marbles ... he just does it!  In case I haven't mentioned this before, this kid is STUBBORN!!!  (I wonder where he gets that from?!?!) 

Sunday, June 19, 2011

Happy Father's Day!

Happy Father's Day to the most wonderful father in the world! 

Robert, you strive so very hard both at work and at home so that we can have a such an amazing life together.  We are so very blessed to have you in our lives and don't know what we'd do without you.  Thank you for always being patient, listening with an open ear, giving wonderful advice, always helping others, and loving us so very unconditionally. 

You've been the best Daddy from the very start ...

As you still are now ...

And, we cannot wait to see what the future holds for our family.  Together, we can make anything happen. 

Thank you for everything you do for us.  We love you so much!

Love, Korey, Jack and Forest (woof!)

Tuesday, June 7, 2011

"Make Contact"

I received the sweetest email yesterday that really touched my heart, and so I just have to share it with you all.  The title of the email was "Something to Blog about ... thanks to Jack."  It was from my brother-in-law Stan, who is my oldest sister Kellly's husband.  Before I share more, there are a few background tidbits you might need to know about me, my family, and a certain celebrity athlete.

1) The men in my family are absolutely OBSESSED with sports.  And by obsessed, people, I mean a number of things:
  • My husband, his brothers, his father, his uncles, his cousins, my brothers-in-law (and their fathers and uncles, etc ...) can't talk about ANYTHING other than sports while in one another's presence, seriously.  (Robert's dad being a doctor and his mom being a nurse, I can occasionally engage the crowd in a little medical conversation at the dinner table, but let's just say ... this is rare during football season or MLB playoffs.)
  • My husband and my brothers-in-law wake up early EVERY Sunday before Labor Day each year (much to the chagrin of the women in their lives, as this prohibits us from vacationing at the beach that weekend every year).  On this day, they spend nearly 8 hours at a local bar to perform the very important tasks that entail the thing that gets my husband possibly more excited than almost anything else ... Fantasy Football draft.
  • Both Robert's sister-in-law Alice and I went to UNC-Chapel Hill and both Robert and his twin brother Chris went to NC State ... there are certain days during certain times of the year during certain seasons of certain sports on which Alice and I rarely talk to our spouses.  Enough said.
  • Just when I thought I'd had enough of Fantasy Football and Fantasy Baseball, Robert's little brother Matt had to go and marry the daughter of an ex-professional golfer, thus adding Fantasy Golf to our family life.  (Fantasy Golf ... yes people, it exists.)  No offense, Kelly ... it's been worth having you in the family!  =)
  • My husband and his family are OBSESSED with NY Giants football and NY Yankees baseball.  I've never honestly seen my husband quite as happy as when the Giants won the Super Bowl in 2008.  Just sayin'. 
  • If my husband is home, ESPN is on the television.  It's just pure logic.  He even turns it on to watch during the 2 minutes it takes him to put on his socks and shoes in the morning (which, uh hum, consequently causes this task to take more like 5 minutes.)  That's all I have to say about that.
  • I could go on and on, but I think you all get the picture.  And let me be clear about something (my disclaimer) if you will ... whilst I may come across as irritated by the men in my life's predilection for all things athletic, in actuality I find it quite endearing (most of the time).  On to my next point ...
2)  For those of you who aren't sports fans, there's a man named Albert Pujols out there, and he plays major league baseball for the St. Louis Cardinals.  For those of you who are familiar with his athletic prowess, let me inform you that this Albert is a star both on and off the baseball diamond.  Pujols is in fact a very influential advocate for individuals with Down Syndrome.  Shortly after marrying his wife Diedre, he adopted her daughter Isabella who has Down Syndrome.  Since then, Pujols and his wife have done momentous things for the Down Syndrome world.  By creating the Pujols Family Foundation, this family has made it their mission to promote awareness for individuals with Down Syndrome, help provide for children with disabilities and life-threatening illnesses, and improve the quality of life of impoverished children living in the Dominican Republic, where Pujols is from, and they do it all through their Faith in God.  (Their motto is "Make Contact" ... get it?)  Check out this awesome 60 Minutes segment for more on his life story.  On to my last point ...

3) My brother-in-law Stan is no stranger to individuals with special needs for he has a close family member who, like Jack, needs extra help to do the things that we all seem to take for granted.  Because of this, I have felt a recent and much stronger kinship to his family, as he and his family have to my Jack.  Stan's big heart, special bond with my special little boy, and his love for sports led him to give Jack a very thoughtful 1st birthday gift.  He thought of it all on it own, and now Jack is the proud owner of the smallest and cutest Cardinals/Pujols jersey around!

For all these reasons and more, it is not surprising that I received the following email from Stan just last night.  I hope I don't embarrass him by reposting it verbatim, but the way it is worded is so sweet, moving and endearing, and it brought many tears to my eyes.  I hope you all enjoy it too.  Just read on:
Subject: "Something to Blog about ... thanks to Jack"
Thought you might find this interesting.
Albert Pujols has been in what he might consider a slump this year.  He had not hit over 10 HR before Jack's B'day and his batting average was down compared to most years. 
I thought you should know that our Jack is now his official "Good Luck Charm".  Since Jack's B'day and the unveiling of his first MLB "Albert Pujols" jersey, Albert has been on an absolute tear.  Check out the below Pujols stats starting on the day Jack celebrated the Big #1.

Batting Average = .444 (12 for 27)   This means he basically has averaged 1 hit every other time at the plate ... thanks to Jack.
Runs Batted In (RBI) = 9   This is 9 RBI's in 7 games
Home Runs (HR) = 5   This is 5 HR's in 7 games.  Did I mention that 2 of the 5 were walk off HR's to win the game for the Cards?

Just for Reference
Major League Batting Average 2011 = .252 .... Albert is hitting .444 over his last 7 games
St. Louis Averages 1.1 HR/game in 2011 .... Albert is averaging .71/game over his last 7 games.  This is almost the team average.

Long story short .... JACK IS THE MAN and officially Albert Pujols's good luck charm ... as he is to all of us.

Happy Birthday Jack!

I mean, really .... doesn't this just melt your heart?!?!?  I have the best family in the world.  Thanks so much, Stan, for making our week!

Friday, June 3, 2011

Our Little Monkey is ONE!!!



That's right!  Jack turned the big ONE on Saturday!  We woke up to Jack babbling in his crib early Saturday
morning, and since he'd been sick with a cold and a terrible ear infection (leaving ALL of us very sleep deprived last week), we decided to let him snooze in bed with us for a while, which we hardly ever do.  Exhausted, I felt that this would buy me a little more time to sleep until all the party-planning chaos insued.  Well ... I just couldn't seem to fall back asleep.  Instead, I found myself watching Jack sleep and becoming immensely overcome with emotion.  With tears streaming down my face, I thought back to that very morning exactly one year ago ... I thought about the excitement of that day being the day of our first baby's birth ... my water breaking at 3 am, showering and shaving my legs for the hospital, bursting with excitement and nervousness, waking Robert to tell him it was "time" ... the LONG and hard induced labor and eventual C-section ... I also couldn't help but remember the fear and heartache I also felt that very day ... being told that my brand new baby boy wasn't exactly who we had envisioned he would be ... the onset of worry about what our future would hold, but all the while overflowing with love for this beautiful and perfect baby we had created.  With these emotions came even more feelings (and tears), as I realized how very far we have come in this journey and how different and better things are than we ever imagined one year ago.  Yes, it was not what we expected, and on some days the stress of having a child with special needs is definitely overbearing.  But having this little boy in our lives and knowing that God created him from us, knowing that he is a miracle like any other child, dissipated all those old fears.  We have new fears that we didn't have that day one year ago, but they're more manageable now, as we have been equipped with all the tools and help we will need along the way.  As I watched our baby toddler {insert tear drop here} sleep next to his daddy and me on the day of his first birthday, I was more overwhelmed with love than I may have ever been in my life.  I felt grateful and fortunate for the love Jack has brought our family, for the patience he has forced me to learn throughout this journey, for the much-needed humility he has instilled within me and my husband ... but mostly, for the strength and resiliency he has shown us in just one short year upon this earth. 

Thank you, my dear Jack, for giving me Faith again and again every time I look into your big, bright blue eyes.  You have taught me that all things are possible, regardless of how fast or how slow they are accomplished.  I trust you to show me that your way of doing things is the right way for you.  I love you more than you'll ever know, my little son-shine!

Happy 1st Birthday, Jack!

Despite being sick the week before his birthday, Jack had a FABULOUS time at his "monkey" party.  Love just surrounded our little boy on Saturday.  We were joined in celebration by Jack's Ci Ci, Grandma and Pops, all of his aunts and uncles (he has 8 total), all his cousins (6 of them and 2 more on the way!), and even his great-Aunt and Uncle, Lyn and John, who came all the way from Kentucky for his big day!  We also had several close friends stop by as well, some from Greensboro and some from as far away as South Carolina!  We had great weather, great food and great company ... just a great day!

We have a tradition in our family that we do not buy store-bought cakes for children's birthdays.  Instead, we make our own homemade cakes (which doesn't add ANY stress at all).  Mom and I made banana cake with chocolate chips on Thursday night and froze them (since I had to work all day Friday), and my sisters Kelly and Kasey helped me ice the cakes with chocolate buttercream on Saturday morning.  They were just perfect!

A little monkey smash cake for our little monkey

Each guest wrote Jack a note for this time capsule.  We'll open it and read them on his 18th birthday.

Jack raised over $1000 for The "Jack" Pot Fund!!!

Photo banner of Jack, ages 1 through 12 months.  (It's still hanging in our den nearly a week later ... Ummm, can't seem to take it down.)


Jack managed to fit in a nap on Uncle Chris during the first hour or so of his party (smart guy!)

Jack's BFF, Carter, was certainly a guest of honor

Getting ready for cake ...

Here we go!

A little uncertain at first ...

Clapping and cheering Jack on after singing "Happy Birthday" (which he LOVED!!!)

Pops getting in on the smash cake action

Getting a little more comfortable with the whole cake notion

And, here I was worried that he wouldn't know what to do with it!?!?!
"Ci Ci, want some cake?!?!"

Assessing the damage with Daddy in the hall mirror

Chocolate handprint ... priceless

Why is it when you request no gifts for a child's party, NO ONE listens?!?!  I tell you ... we're going to have to add on to our house to store all Jack's gear!

 Thanks to everyone who helped make our extra-special little boy's big day extra-special!