Thursday, July 29, 2010

Why I'm Walking

So, you already know that the Triangle Heart Walk is less than 2 months away. Thank you to those who have already committed to walking with us and/or raising money! Our goal is to have 20 people join our team, and we're up to 7; we're almost halfway there! "Team Ethan" has also already raised $100 ... way to go!!

If you have not already signed up, and you want to, please do so today. If you have already joined our team, I would encourage you to go ahead and begin your fundraising efforts. It just takes asking 10 people to give $10, and you can raise $100 in no-time!

All of you are aware of the obvious reason I'll be walking on September 26. This little guy's broken heart has absolutely changed mine.

When Jeramie and I first found out I was pregnant, I knew I would experience a love like I've never known; every mom will tell you that, and it's true. But, finding out about Ethan's heart, handing him over to a heart surgeon at 3 days old, sitting by his bed for 2 and 1/2 months, and watching a team of people bring him back from the brink of death has created a love and a passion that only a few of us blessed moms get to experience.
Did she really just say blessed? Has Joye officially lost her mind?!

This is a life that no mother would wish for their child. You don't sit around while you're pregnant, praying that you'll have a sick baby so that you can be strengthened or filled with this unknown passion.

But, when this life is yours, fighting and loving more than you thought you were physically capable of is all you know how to do.

I often times have people say to me,
"Joye, you are so strong. I don't know how you do it."
When, the reality is, I don't know how I do it either. I do know that I have a God who is absolutely bigger than any of this mess and is the reason Ethan is alive and well today; but, the day-to-day appointments, feeding schedules, and medicines? I don't have an option to not do it.

I do it because Ethan needs me to. I do it because I am his mother and it's my job. Does it make me tired, frustrated, worried, or upset? Of course! Do I wish it were different? For him, yes. Do I wish that his pain not be the thing that makes me a better person? Definitely. But this is our life, our reality, and I know that the past 16 months have made me a person I didn't even know I could become; for that I am so very blessed.

Now, for the maybe not-so-obvious reason as to why I am walking in this year's Heart Walk. My daddy was diagnosed with congestive heart failure about 10-ish years ago. The initial prognosis wasn't great, and the doctors weren't sure how long his heart could keep going. Being a daddy's girl, I was devastated and couldn't (still can't) stand the thought of losing him to heart disease. But, thanks to medicine, diet, and exercise, Daddy is still going strong! He has been able to see me graduate from college, walk me down the aisle, dance with me at our wedding, and experience being a Grandpa for the first time.

I am so thankful for cardiologists, like my daddy's and Ethan's, who are using up-to-date research to treat such a wide variety of heart conditions. I am thankful that money is coming from somewhere to drive that research and to allow people with sick hearts to live longer, happier lives.

Currently, research has been done that has allowed one company to create a MRI friendly pacemaker. Do you know how many nights I've wondered what we would do if Ethan were to ever sustain a head injury and need an MRI, but can't have one? Or how many days I've driven to his orthopedist's office and parked on the opposite side of the parking lot so he won't be anywhere near the field of the MRI trailers?

One day, research will make it possible for Ethan to not need another open heart surgery. Research is what's allowing scientists to figure out how to engineer blood vessels from human cells to use during heart bypass surgery, and to successfully implant a laboratory-grown organ into a human. Imagine a heart transplant with no fear of rejection!

If we want the best for our loved ones who are suffering from some form of heart disease, whether it be congenital or acquired, we need to take action! I would be absolutely elated if "Team Ethan" is able to meet our goal of $2,000. It sounds steep, but I think we can do it!

Cardiologists and cardiac surgeons who are in the midst of treating these patients need us to do it.

Older men, like my daddy, who rely on medicines to keep their heart functioning need us to do it.

Kids like Ethan, who require so many surgical interventions and devices, absolutely need us to just do it.

I know we can do it ... who's with me??

Monday, July 26, 2010

Story Time

I met an angel on Saturday night.

I am a firm believer that God puts people in our lives, at specific moments, just when we need it the most. There is just no other way to explain what I am about to tell you.

I went on a mini vacation with my girls from college this past weekend. It's a thing we do every year, and this year was no exception. After a long day at the beach and the pool on Saturday, we decided to go to Olive Garden for dinner. The girls dropped me off to put our name on the list while they parked the car. This particular restaurant had just opened, so it was already slam-packed for dinner at 5:00. Our wait time was about an hour, but the hostess informed me that the booths at the bar were first come-first serve. I waited at the corner of the bar for a table to come available, and we were seated within 10 minutes. Score!

About the time we put in our dinner orders, a man walked by our table. I instantly noticed his right arm and I gasped. My girls turned to look in the direction of my agape mouth and widened eyes and, about that time, I burst into tears. His right arm was an exact, older version of Ethan's left. Take Ethan's arm, add about 30-some years to it, some hair, and there you go.

As I sat with my tear-stained face buried in my hands, I hear one of my girls ask me if I'm sad. I shook my head "no" because I wasn't. I was so incredibly overwhelmed with hope and encouragement. It was one of the most emotional moments I've experienced.

I managed to re-gain my composure just in time for our food to come out. I texted Jeramie to let him know what had just happened and he asked right away if I had talked to him. About that same time, my girls began to encourage me to strike up a conversation with him. As much as I wanted to, I had such mixed emotions.

"He's at dinner with his wife; he doesn't want to be interrupted" ...

"What if I offend him?" ...

"But, what if I don't talk to him; will I regret it later?" ...

"How do I even start a conversation like that?" ...

It helped that he and his wife ended up sitting at the table right in front of us, but my stomach was in knots through most of dinner. I would get myself all pumped up, then chicken out again. It wasn't until I overheard him tell our waiter that he is from the Raleigh/Durham area, that I knew I had to say something.

After we paid for our meals, the girls got up to go get the car and I summoned up enough courage to stop by his table on the way out. I'm really not exactly sure what I said, but I know that I introduced myself and mentioned that I'm from Raleigh as well. I started to talk about Ethan, and then I cried. Again.

He and his wife were instantly open to talking with me and, despite my apologies for interrupting their dinner, they insisted that we go outside and talk some more. He proceeded to tell me about his experience of growing up with an arm like Ethan's and he did not seem to miss out on anything! He played sports (very well, actually), received scholarships, and is a former police officer. When someone told him he couldn't, that just motivated him even more.

His perspective and sense of humor is something that I pray Jeramie and I can instill in Ethan. If Ethan grows up to do half of the things that this man has done, and has the attitude he has about it all, I will be so very proud.

Just to make the story even crazier, he goes on to tell me that he works at Duke for a cardiologist AND his wife used to work in the OR at Duke with Ethan's cardiac surgeon, Dr. Jaggers. I can't even make this stuff up.

We exchanged contact information and I thanked him and his wife, over and over, for talking with me. The amount of hope I have gained from a 20 minute conversation is absolutely unreal.

I find myself reliving that moment of seeing him walk into the restaurant. I can't explain the feeling at that very second. It was as if I imagined Ethan, a confident young man on vacation at the beach, going out on a date with his wife. A wife who loves him for who he is and for all the things that makes him special.

And that, my friends, does this mama's heart good.

So very good.

"Are not all angels ministering spirits sent to serve those who will inherit salvation?"
-Hebrews 1:14

Tuesday, July 20, 2010

2010 Heart Walk

I am excited, happy, giddy, etc. to announce that Jeramie, Ethan, and myself will be participating in this year's American Heart Association Heart Walk! I don't even think I knew there was such a thing until earlier this year. I began seeing other heart moms blog about the event, and I figured it must be nationwide. A quick Google search later, and I was in touch with the community teams representative from the Triangle AHA.

We met for coffee last night and she walked me through the process of creating a team for the walk. I am PUMPED and "Team Ethan" has officially been formed! My goal is to recruit 20 team members, and for each of those members to raise $100. We have set a family goal of $500 and I really think our team can raise $2000 for this important, important cause.

I found out last night that, for our region, 97 cents of every dollar raised goes straight towards research. And, with Duke & UNC being in our backyard, we can feel pretty confident that a good chunk of that stays right here in our area. How cool is that? To think that money we raise this year could fund research that could eventually spare Ethan of further heart surgeries is a pretty dang cool thought, if I do say so myself.

I told you. I'm pumped!

So, where do you come in? First of all, I would love for all of Ethan's supporters and prayer warriors to join "Team Ethan". The walk will take place here in Raleigh. If you're local, we would love for you to join our team, raise some money, and walk with us on September 26. However, if you don't live in the area, or can't participate for other reasons, you are still more than welcome to join and fund raise. You will be with us in spirit on the day of the walk!

Even though the walk is 2 months away, the AHA would like for walkers to be registered on the team page by Monday, August 2. That's only 2 weeks away! If you're interested in joining our team, please register TODAY! Also, I plan to have shirts made. When you register, send me an e-mail at joyemullis(at)gmail(dot)com to let me know what size shirt you prefer.

(Side Note: If any locals have a good lead on a t-shirt designer/printer, please let me know!)

I am really looking forward to this! I finally feel like I have an opportunity to give back, and this is something that has been stirring inside of me for a while now.

So, what are you waiting for??

Go join our team and start raising money. Ethan will thank you from the bottom of his mended heart!

Wednesday, July 14, 2010

All Things Ethan

I just realized it has been a while since I gave a full-blown update on how Ethan is doing. Let's fix that, shall we? Beware ... it's going to be a long one!

Cardiology: As far as we know, Ethan's heart is doing just fine; we haven't been given any reasons to think otherwise. He is pink and full of energy, just the way we like it! We still have two more months until we take him back to see the cardiologist, and I hope that things will continue to remain nice and quiet.

Orthopedics/Nerve: Ethan has not worn his arm brace since June 21!! Aside from the fact that he probably should wear it while sleeping to sustain the correction, this is a great thing! It appears that Ethan's arm, hand, and fingers have regained full sensation. He no longer tries to chew on his index finger and he responds to touch. There is a possibility that his hand is hypersensitive now, but his OT is exposing him to different textures so that he'll begin to explore objects a little more with his left arm. It is simply amazing to watch him play and interact now that he has access to both hands. He feeds himself with his left hand, picks up toys, transfers toys from one hand to the other, puts pressure on the left side of his body, and runs his fingers through his hair (adorable!). This is his normal and I don't think he's going to have any problems, what-so-ever, learning to use his special arm.

(Please excuse the fact that he isn't wearing any pants!)

Ethan has a visit with Dr. W. in a couple of weeks to assess how things are, um, developing down there. I suspect that he'll schedule stage 2 of the surgical repair, which should happen sometime in September.

Feeding: Well, our tube-free trial didn't exactly go as planned. Ethan had a high fever for those two days, and then some, and just didn't feel like eating. Who can blame him? It took him until yesterday morning to really shake all the symptoms of whatever that was, so we're going for Round 2. So far, we've only given him milk through his tube and he's done pretty well at each meal time. By far, his favorite foods are anything crunchy and salty. Between that, and his love for Oreo cookies and chocolate pudding, I'd say he's definitely his mama's child!

He will only drink water out of a sippy cup. If it even looks remotely different than water, he won't touch it. Have any of you experienced this? Any advice or suggestions?

Developmental: Ethan continues to impress us and his OT! Right before we left for the lake, I asked his OT how we could encourage Ethan to stand himself up in the middle of the floor. (At that time, if he fell down while walking, he would crawl over to the nearest object and pull himself back up.) She said it would be difficult because he doesn't (didn't) have access to both arms to stabilize himself in order to push up from the floor. Well, wouldn't you know that Ethan wasn't going to have any of that talk, and figured it out just days following that conversation! I think our crawling days are officially in the past.

Sometimes he walks so fast, I wonder if he'll be running soon. I can't even imagine!! Just a couple of days ago, we turned our backs for a few seconds and he was at the top of the stairs before we knew it. Then, he proceeded to scoot himself down, which was a first!

Ethan has been chomping away with 16 teeth for the past couple of months. The jury is still out as to whether or not his 2-year molars are trying to pop through. His mouth is like a leaky faucet these days and he has been biting on things a little more than usual. He has been an extremely early teether from the start, so I wouldn't be surprised.

He has added a slew of words to his vocabulary (most random word: "keys") and will sign "please", "more", "bath", "all done", "eat", "cold" and something that looks like "milk" but I don't know what he wants when he does it (definitely does NOT want milk!). He blows kisses anytime he hears "I love you" or "bye" and he loves to give hugs! He can point to his eye, ear, hair, nose, and tummy, although he still gets them confused from time to time. He's learning to follow simple 1-step directions, but does not like to share. We're working on that one.

Oh, and he loves to dance!

(We DO fully dress our child, I promise!)

Now, instead of bouncing, he'll wave his arms above his head and sway back and forth. I walked into his room the other day to see him gettin' down to the song on the radio. Precious!

I absolutely love being home with him, watching him reach these milestones and noticing the change from week to week. We've had so much fun going to the pool and story time at the library with friends. I'm a firm believer that he needs as much interaction with other kids as possible, and I'm thrilled that I can facilitate that for him!

So, there you go. Consider yourselves updated! Thanks for checking in!

Thursday, July 8, 2010

Sickness & Death

Thank you all for the prayers you've sent up for my family. Sadly, my Uncle Randy passed away early this morning. I am thankful that he is not suffering any longer, and I smile when I think about the beauty he is experiencing right now.
What a day that will be
When my Jesus I shall see
And I look upon His face
The One who saved me by His grace;
When He takes me by the hand
And leads me through the Promised Land
What a day, glorious day that will be.
I plan to leave Raleigh tomorrow afternoon, and I'll be driving solo to my parents' house where I'll stay through Saturday afternoon. In a strange way, I'm looking forward to getting away by myself, even if it is to attend a funeral. I'm ready to see my family; I feel like I should have been down there with them all along. I long for the hug that only a family member who has experienced this much death can provide.

Of course, that whole plan depends on the sick little boy who is sleeping upstairs. I took him to the pediatrician this morning because he woke up with a fever of 101.5 today and has been so cranky for the past two days. I suspected an ear infection, but everything checked out just fine. The doctor mentioned that this could be the start of another round of hand, foot, and mouth disease, so we'll have to keep a close eye on him over the next few days. His temperature got up to 103 this evening, and I'm praying hard that it doesn't get any higher than that.

I had a moment of high anxiety/fear/worry before he went to bed tonight. It was right after dinner and all Ethan wanted to do was lay his head on my chest. He didn't have any energy and you could tell he just felt bad. I started inspecting the color of his fingertips and toes, I checked his capillary refill, I listened to his breaths, and I placed my hand over his heart, imagining the worst. Reliving the worst.

Just as I felt the tears forming in my eyes, he sat up, asked to get down, and began to play in the floor with Jeramie. I breathed a sigh of relief and said a prayer that whatever this is will not get the best of him.

We're going to alternate Tylenol and Motrin throughout the night in hopes that his temp will stay down and his body can fight off this crud. If all goes well, I'll continue with the above plan.

Pray that Ethan's body will remain strong and cool. Pray that things will get better overnight, not any worse. Pray that I can make the trip home tomorrow. Continue to pray for my mama, and my aunts & uncles, who have lost their baby brother, and for my cousins who have lost their Dad.

Pray for us all. Lord knows we need it.

Wednesday, July 7, 2010

Independence Day

We had an excellent time celebrating the 4th of July this year! We spent a few hours at our neighbor's house, eating some good food and catching up with friends. Ethan tried his hand mouth at strawberries and blueberries and seemed to like them, but hasn't touched them since!

They had a kiddie pool set up, and Ethan got a kick out of watching his friend Brayden splash in the water!

After playing some corn hole...

...and posing for pictures...

(I stole those pictures from Mandy ... thanks girl!)

...we headed to the fireworks with Mandy & family! We had an awesome view and I was really proud of how well the little boys did with the loud booms.

It was an awesome night!

Jeramie had Monday off of work, so we headed to the pool with some friends. Ethan is an absolute fish in the water, and I really enjoy watching him splash and play.

We were able to stay for a couple of hours and then headed home. It was the perfect way to end a great vacation and holiday weekend!

Until today...

Today I took Ethan to see his feeding therapist, as I do every Wednesday afternoon. He ate like a champ and had no problems showing off his new let-me-drink-from-a-cup-with-a-straw skill. She was so impressed with the progress he has made since she saw him last, and suggested that we go TUBE-FREE for the next 48 hours!

Jeramie and I have actually been doing a modified version of that over the busy holiday weekend, but haven't been brave enough to just go for it. Obviously, we will use the tube for fluids if it seems Ethan is not taking enough from the cup, but we will not be giving him any food through his tube for the next two days, starting tomorrow morning!

AAAAAAHHHHHHH!!! (just had to let it out...)

Talk about an independence day! Ethan has been dependent on some sort of feeding tube since the first time he was allowed to eat after his first heart surgery. To think that he is on the brink of gaining his independence from that is just abso-stinkin-lutely fantastic!

We have a plan in place and our hopes are high. I am fully aware that we still have a long ways to go, and won't be pulling out the tube anytime soon, but this is HUGE, my friends! Ethan is interested and ready, so we're taking advantage of that and jumping in with both feet.

Say some prayers for us over the next couple of days! The way I see it, he either eats or he doesn't. Either way, we have the tube as our back-up... but, man. I would really, really love it if, for the first time in 16 months, we can feed our child the way we always thought we would.

Now, THAT will be a day to celebrate!

(again, stolen from Mandy!)

Tuesday, July 6, 2010

Honeymoon's Over

Well, it's official. Vacation is finished. Jeramie went back to work today for the first time in 10 days and Ethan and I began a whirlwind week of appointments and therapies.

I was also slapped with the harsh reality that my Uncle Randy, my mama's brother, will not make it through the next couple of days. He is in the hospital back home where he is joined by my mama and 9 of their brothers and sisters, and many of my cousins (including his son who is a little younger than me). Hospice is with him now and arrangements are being made for his funeral. Uncle Randy will be the first of 12 siblings to pass away, and he's the 2nd youngest. Death has not been kind to our family, and each time someone is unexpectedly taken away from us, it hurts a little more. I would really appreciate it if y'all would say some prayers for our family during this difficult time.


On a happier note, we had a great time on our trip to the lake last week! We couldn't have asked for better weather, or for Ethan to do any better than he did. In fact, I think we were all a little surprised with how tolerant he was of being on the boat, being in the water, having his schedule changed-up, and just overall not being in his normal environment.

I would even go as far to say that he enjoyed the boat and the water! Once he found his sea legs, he was all over the place! He especially loved driving the boat, with PawPaw's help of course!

(Their hats read: "Captain" and "First Mate")

He got lots and lots of attention from his soon-to-be Auntie, too! Lori Ann is absolutely smitten with Ethan and we can't wait to officially welcome her into the family next summer. I especially enjoyed our late-night girl talks and getting to know her a little more. We love "Auntie LA"!

Probably one of my favorite moments of the whole trip was when Ethan fell asleep on me after a long day of being on the boat. As we rode back to our dock, I savored every second of him being still, snuggling with me.

I placed my hand over his chest and was overcome with gratitude for the beating heart that was inside there. This time last year I longed to take him to the lake and have that experience, but he was just too sick. It was so special being there with him this year, reveling in his health and vibrancy.

I mean, really. Just look at those precious, pink, pouty lips!

Jeramie and I were able to steal a few moments together, too. I absolutely love being out on the lake with him, especially when the sun is setting. That is probably my favorite time of day while we're there. There is nothing like cruising on the boat, feeling the breeze coming off of the water, and watching the sun set. It is completely relaxing and inspires such a sense of awe.

Of course we spent lots and lots of time in the water! Some days were a little cooler than others, but we welcomed the lower temperatures by the end of the week. I wasn't too fond of the fish nibbling on my toes in the shallow water, so I spent a lot of my time on the float in the deeper parts! Thankfully, Ethan enjoyed that just as much as I did.

I'm going to work on uploading the rest of our pictures (we only took about 600) to our Flickr site, so be sure to check back there later on. I'll also post some other cute videos we took to our YouTube account.

Thank you, Rick & Amy, for giving us the opportunity to spend such sweet time with the family and to create fun memories that will not be soon forgotten!

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