Happy Halloween!

Love,

Old McDonald, Ethan style

Do y'all remember Ethan's singing debut back in April?

(If you haven't seen this before, you really should watch it. It's sure to make you smile, maybe even laugh!)

Ethan Singing from Joye Mullis on Vimeo.

Well, it appears we have a musical child on our hands. If Ethan hears music, he dances. If he can figure out a way to cause something to make noise, he will. He plucks Jeramie's guitar until his fingers are red, and he can spot an egg shaker from a mile away.

*Side note: To the person who gave Ethan the Elmo CD player, I love you with all my heart. But, one day, I hope you find yourself locked in a room with toddler toys that do not have an off/off switch, or volume control. I digress.

Back to the singing. Jeramie has recently been singing "Old McDonald" with Ethan at bedtime. He (Ethan) is totally into animal sounds right now, so it's perfect! Until this morning, this seemed to be solely an Ethan/Daddy activity, but he let me in on the fun after breakfast.

I hope you enjoy it as much as I did!

Test Results

If you didn't see my Facebook updates yesterday, I took Ethan to Dr. I's office for his weight check and blood draw. I'm happy to report that he was up in weight, by a few ounces, since the last time his weight was taken on October 15! It was just enough to make us all breathe a small sigh of relief, but not quite enough to stop the investigation. So, out came the needle.

Dr. I ordered all the tests I mentioned in my last post, plus another that checks Ethan's prealbumim levels. This is the only time, to my knowledge, that this test has been ordered. The prealbumim results were abnormal, with Ethan's level being moderately lower than it should be (the range is 18-36; Ethan's was 14.8). Seeing as how this is the only prealbumim result we have for him, it's hard to say if Ethan is not getting the nourishment he needs, or if this is him bouncing back (like with his weight). It's likely that this level will be checked again in a few weeks for comparison purposes.

There was also one other abnormal result, and that was in regards to Ethan's CRP level. In a nutshell, the higher the number (1-3 is considered normal), the more likely it is that an infection is lingering somewhere in the body. Ethan's CRP level is currently 5.9. What's interesting is that this number has been monitored somewhat closely, and has been on the rise since mid-April. In fact, his CRP level from yesterday is higher than it was when he was being treated for osteomyelitis (read: severe bone infection that required emergency surgery to amputate part of his finger).

Things that make you go, "hmmmm".

We have no idea what's going on. Dr. I is going to bring an Infectious Disease doctor on board to see what he thinks. Elevated CRP levels tend to cause a bit of a ruckus; they only tell you that something could be going on, they don't give you any indication as to what it is. This means Ethan will probably have much more blood taken from him in the coming weeks, and it could be a little while before we know if these funky results have anything to do with his slow weight gain.

Ugh.

I'd love it if y'all would continue to pray for us. Spread Ethan's name to your playgroups, your churches, your family, your friends. It terrifies me to think that an infection could be hiding out somewhere, and we're missing it. Ethan's team of doctors are on it, though, and I am so incredibly thankful for that. Pray that we would get some answers in the coming weeks, and that Ethan would continue to gain weight at a steady pace. Pray for the wisdom of these doctors who are working so hard to figure this out, and for peace for this mama who just wants everything to be OK.

Quick Update

So, I just had a rather lengthy conversation with Ethan's cardiologist. Before I go any further, I just want to express my sheer appreciation and gratitude for that man's skill, knowledge, and compassion. Two years ago, I had a very vague idea of what a pediatric cardiologist even was; today, he is one of my favorite people. Dr. I, if you ever read here, know you are loved and appreciated by the Tri Mulli!

Everyone seems to have their panties in a wad about Ethan's sudden drop in weight. We all have our reasons as to why it's happening, with the most logical being that when you take away tube feeds and add in high activity, it's going to equal a "leveling out" of sorts. However, with a kid like Ethan, things can't be that simple. It always seems that there needs to be a bigger, more dramatic explanation. Dr. I was ready to bring us back into clinic to perform another echo, just to make sure he wasn't missing anything. The idea is that if Ethan's heart is sicker than we realize, it could be eating up all the calories he is taking in, thus not allowing him to grow like he should. But, after re-scanning the last echo from September, Dr. I decided that wouldn't be necessary. He affirmed that Ethan's heart looks great and there's nothing, from a cardiac standpoint, that could explain the drop in weight.

So, then what?

The new plan is to take him into clinic next week, anyway, to check his weight and have some blood drawn. Dr. I is going to order a metabolic panel and check Ethan's CRP level. This will give us an idea of anything else that may be going on. I'll keep doing what I do ... did y'all know that those frozen packaged burritos have 300 calories in them?! ...and hopefully, Ethan will continue to eat as well as he has been.

I'll be sure to update once we have some results! Thanks for praying us through this crazy, roller-coaster ride. Y'all do remember that I hate roller-coasters, right?!

Wordless Wednesday

Fall = FUN!

Fall is, without a doubt, my favorite season. I love to watch the leaves change, I love drinking my first Pumpkin Spice Latte of the season, I love pulling my comfy sweatshirts out of the closet, and I love the smell of the heater when we first turn it on.

I. Love. Fall.

It seems as though fall is geared towards fun outdoor activities, too. Sure, you can go to the beach in the summer, but there's just something about going to a pumpkin patch and feeling the chill in the air that makes me giddy.

The weather has been gorgeous here in North Carolina, and we made the most of every moment this past weekend; it was truly three days of fall perfection! The State Fair is in full swing, so we paid a visit to the fairgrounds after Ethan's appointment on Friday. We met up with my best friend, her husband, and two boys. Kaleb and Ethan had a great time riding rides together, and I enjoyed hanging out with Brandi and snuggling with baby Karter!

Ethan was overcome with excitement when we first walked through the gate! We walked right into the midst of Kiddieland, and I thought he was going to climb out of his stroller in order to get on the first ride he saw. Thankfully, we went at a perfect time and beat the crowds; we had no longer than a 5 minute wait at each ride, which is particularly nice when you're dealing with an impatient 19 month old!

Of course, no trip to the fair is complete without food! We worked backwards, starting with dessert, then going in for the main course, and then had an appetizer to end the day. Ethan polished off about 1/4 of our funnel cake, had a few bites of my steak and cheese sandwich, and ate more than his fair share of our ribbon fries! In the words of my sister, "If that doesn't fatten him up, I don't know what will!!" ...amen!


On Saturday, we celebrated Ethan's friend, Brayden's, 3rd birthday. Brayden's mom (my good friend, Mandy) is pretty much a genius and hosted his party at a local pumpkin patch. Not only was mostly everything taken care of from a party standpoint, but the kids LOVED it! We started the day with train and hay rides, then went back to the picnic area for lunch, gifts, and cake. All the kids got to take home a pumpkin, too!

After the party festivities, we walked around the farm and I took Ethan down this massive tunnel slide.

It was a bumpy, fast ride and I'm not really sure how he felt about it!

All in all, it was a perfect day to be on the farm, celebrating with the littlest of friends!

Sunday brought about lots of home improvements here on Plum Frost Drive. We replaced our floors downstairs about five weeks ago, but had not finished installing the quarter round and transition strips. Ethan and I left Jeramie at home to finish up those projects, and we ventured out to pick up some paint samples and find some rugs. Some very generous friends gave us a large area rug for the space in the living room, but we still needed some runners for the front and back doors. I found just what I was looking for at Target (of course!), then came home to test out our paint choices.

What do you think??

The gray color to the left will be the primary wall color. The light green will be the color of the kitchen and an accent wall color in our dining room.

New rug!

This is the type of weekend I live for. I look forward to spending quality time with my family and friends, introducing Ethan to new experiences, and having moments of intense productivity. I'd say we conquered all of those things in our three days together!

Here's to the weekends that are to come; I have a feeling this is going to be my favorite fall season yet!

Genetics Update

Disclaimer: I haven't had a chance to run this by my super-smart friend, Dana, yet. She usually keeps me from saying silly things when it comes to genetics so, Dana, I hope I don't embarrass you with this post! :)

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On Friday, Jeramie and I took Ethan back to Duke for a follow-up with our geneticist. If you remember, I posted back in May about the test results of Ethan's first round of genetic testing. That test was looking at a gene called TBX5 which, if mutated, is known to cause Holt-Oram Syndrome. The test came back negative, which told us that Ethan's 12th chromosome does not contain one of the known mutations. However, a negative result does not necessarily mean that Ethan doesn't have this syndrome (read: false negative). It could be that his 12th chromosome contains a mutation that has yet to be discovered, and it may be years before researchers find it. There is no point in testing Jeramie or me for a TBX5 mutation because it is a dominant disorder. Basically, one of us must have one of the known mutations to pass to Ethan, but since Ethan tested negative, then there's no way we could. Clear as mud, right? Right.

So, where do we go from here?

There's another gene, SALL4, that causes syndromes similar to Holt-Oram. According to our geneticist, there is some overlap between presentations of TBX5 and SALL4 mutations, so it's possible (not probable) that Ethan could have a SALL4 mutation. When Ethan goes into the hospital in November, blood will be drawn for additional genetic testing. It will be sent out of state to be read, and we should have those results by sometime in December. If a mutation in found in Ethan's SALL4 gene, then Jeramie and I will undergo testing to see if either of us carries it. (Remember the de novo rate from my last genetics post? I believe the rate for this particular mutation is 40-50%. So, the chances are still pretty high that neither of us passed it along.)

Just to be clear, I am not at all interested in doing this for the sake of labeling my child with something. As Jeramie and I begin to think about planning for more children, it would be nice to know if we possess a genetic disorder that we could be transferring to our kids. As far as ordering additional tests for Ethan and possibly testing ourselves, we are in a good place. However, we would covet your prayers over the next few months, and especially going into the new year as we begin to talk a little more seriously about #2.

#1 looking cute in the exam room

"Wheeeeee!"

A little bit of happy

Which photo makes you the happiest?

Defeated.

This post is going to seemingly pale in significance to what I posted about yesterday, I realize. However, if I've learned one thing over the past year and a half (I say that a lot, don't I?), it's that every person and every story matters.

Sure, Jeramie and I have had to endure more as parents than many of our friends, but does that make their stories any less important? I've had friends tell me something that's wrong with their child, from an ear infection, to a more serious illness, and qualify their story with, "but I know it's nothing compared to what you've gone through." While that statement might be true, their child's ear infection is just as important to them as Ethan's vibrating chest is to me. And, although my concern for Ethan will always be heightened, being that he is my child, I am still capable of showing concern for another child who might not be "as sick".

I don't know what it's like to lose a child, but those mamas who do still express concern and interest for the children who are still fighting battles. We're all in this together, from a congenital heart defect, to cancer, to a splinter in a finger. It's all important, and it all matters.

So, while I am in the midst of being heartbroken for these families, pouring out prayers for peace through it all, and asking y'all to do the same, I am also going to ask you to send up a few for Ethan (and myself).

I took him to the doctor yesterday for this nagging cough (which he now has an antibiotic for), and they went ahead and did his weight check while we were there. Many of you probably saw my post full of excitement on Facebook a couple of weeks ago when it appeared that he had gained 12 ounces in about as many days. Well, it seems as though that was just an illusion. The doctor two weeks ago was comparing a naked weight with a fully clothed weight, and Ethan's jeans, t-shirt, and tennis shoes were enough to make us think he was on the up and up.

The reality is that his naked weight from yesterday, compared to his naked weight at his 18-month well visit, has dropped by about half a pound. I could have cried. I feel so defeated, and completely out of ideas. The pediatrician was, of course, not happy about the weight loss and got on the phone with some people at Duke. He's in the midst of finding a nutritionist for Ethan, since the one that was originally assigned to us seems to no longer be in the system.

Yesterday was also the day we just so happened to have an appointment with Ethan's feeding therapist. I relayed the information from the pediatrician, to her, and she agreed that we've got to do something. Ethan is teetering at a weight that's starting to scare all of us; he dropped from the 25th to the 10th percentile in a matter of four weeks. If he goes much lower we'll be looking at "failure to thrive", which equals bringing the G-tube back into play. Everyone knows how hard we've worked to get him to eat by mouth, and going back to tube feeds now could possibly undo all that we've done.

So, here's the plan. We continue to feed Ethan as we are; adding butter and heavy cream to mashed potatoes, Carnation Instant Breakfast to his milk, fatty oils to grits, giving him spoonfuls of peanut butter before bed ... you get the idea. I told our feeding therapist that, in an attempt to fatten him up, I feel like I'm clogging his arteries in the process. So, if any of you out there have some good high-calorie, heart-healthy options for a picky toddler, I'd love to hear them!

We're also going to try a supplement called Benecalorie, which is a Nestle product. In just one and a half ounces there are 330 calories, 33 grams of fat, and 7 grams of protein! If that doesn't put some weight on his bones, I really will beat my head against the wall.

I am really struggling with "being anxious for nothing". If I'm honest, I'm very worked up about the whole thing. I feel like I've prayed and prayed and prayed for God to take this worry from me, to allow Ethan to thrive, but I just keep getting it all thrown back in my face. I am thankful that Ethan does eat, that he wants to eat. I am thankful that the cardiologist has been able to rule out this being a heart issue, and I'm thankful for a separate team of medical professionals who are wanting to do best by Ethan. Heck, I'm most thankful that my child is even alive and breathing today, and that we have this issue to deal with at all. But, I'm frustrated, and I don't want to be.

I want us to trust Ethan. I want to trust his body to tell him when he's hungry or thirsty and I want to trust that he'll relay those signals to us. But, the truth is, when you've got a kid like Ethan who has had so much stacked against him in the way of eating, that's so hard to do.

So, I'll just keep doing what we're doing, plus some. I'll keep concocting bizarre recipes to maximize his fat and caloric intake. I'll keep offering him chocolate pudding three times a day, and I'll keep sneaking pureed vegetables into his macaroni and cheese. Above all that, I'll keep praying. I'll keep begging God to grow my son into the healthy and strong person his heart needs him to be, even when it feels like I'm not being heard.

Ugh.

This has been an exceptionally frustrating week in the world of congenital heart defects. Friend and fellow heart mom, Stefenie, recently posted about nine lives that have been lost this week to this cruel monster. NINE! Among those nine were two precious, tiny babies that I've been praying for since before their births.

Ewan passed away on Sunday night after fighting for so long and hard on ECMO (twice), and eventually contracting a bacterial infection. He was two weeks and one day old.

Joshua "received complete healing in the arms of Jesus" this morning. He was a little over seven weeks old.

It is SO wrong that either of these mothers should have to walk into a funeral home and pick out a casket for an infant. We need to do more, fight harder, and speak louder. The world needs to be aware of this beast that is taking lives left and right.

Until then, please head over to the blogs of these grieving mamas and leave them some love and warm thoughts.

Do it in honor of those who are still fighting, and in memory of the ones who have lost such a tragic battle.

523 Village Road

When I went home a few weeks ago for Michael's services, I knew it would be hard for a few reasons. The obvious being that I had lost someone who meant so much to me. Feeling that level of pain and sadness in the days following his death is not something I hope to experience again anytime soon.

The not-so-obvious reason is that on the land between the church cemetery where Michael is buried, and the funeral home where we said our final good-byes, is where my old house once stood. I remember my mama calling me a couple of years ago to tell me that it had been torn down and that an empty field was all that remained. I cried when Jeramie and I drove past that empty field not long after, and I often think of the memories we created in that old house.

Standing in my old back yard, looking toward Village Road; the funeral home is to the left, church cemetery to the right. Cars parked for Michael's visitation in the field.

Side note -- We didn't always live beside a funeral home. The establishment that housed Michael's casket, tons of flowers, and even more family and friends just a few weeks ago was our neighbor's house once upon a time. I have very vivid memories of playing in that house. Our neighbors were a little older than my parents, I think, and didn't have any children living at home, so they treated me and my sister as if we were their own. Obviously, their house has since been purchased and turned into a funeral home, and the merging of those two worlds was unreal. Memories of sharing meals and playing tag in my neighbor's house years ago have been replaced by those of crying over a life that was taken from us far too soon.

But, back to where I once lived.

One of the only pictures I could find of the whole (sort of) house. Of course, it was taken during a freak coastal snow storm!

After Michael's visitation, I asked one of my friends if she would walk over to that empty field with me. We walked around the yard for a bit and memories of what stood where came flooding back. At one point, I joked that she was probably standing on one of my dead dogs, and I'm sure it wasn't far from the truth. Living on the busiest (at the time) road in Leland, we lost lots of animals to cars, and it was a tragic event every. single. time. I specifically remember one morning that my mama was having a yard sale. Our dog was out greeting everyone and darted across the road, only to be struck by oncoming traffic. I saw it all happen, ran into the house, and locked myself in my closet. I stayed there for hours, sobbing, until a friend finally coaxed me out. I'm not even kidding about that.

As we looked around the yard, I was happy to see that our pear and pecan trees were still there. As much as I despised picking up pecans out of the yard, it is now a fond memory. Mama would take the fruits of our labor and make more pecan pies than she knew what to do with. That is, when she finally had enough shelled to do so; my sister and I were known to eat the nuts as quickly as she could crack them out of their hulls, which caused much aggravation for her, I'm sure.

One heck of a pecan tree!

We lived in that house for years. I don't remember moving into it, but I do remember moving out. The majority of the time that we lived there it was just my mama, my sister, and me. My parents had gotten a divorce and my daddy lived in Wilmington at the time. About four years later, thanks to a whole lot of love and forgiveness, my parents made the decision to re-marry each other! Daddy moved back in, of course, and we eventually moved into a bigger house across town.

Family photo on the front porch. I must have been 11 or 12 years old here.

You see, the house that once stood at 523 Village Road wasn't exactly what you'd call "spacious". There was a living room, dining room, kitchen, and back porch that took up one side of the house, and one bathroom and two bedrooms that took up the other. The whole house was probably the size of the downstairs of our townhouse right now (about 700 square feet). My sister and I shared a bedroom, and all three of us (four, when my daddy moved back) shared one tiny bathroom.

Living in that house was the only time Jessi and I shared a room, and I wouldn't trade those times for anything! We had some funny moments in there, and I know we drove Mama crazy with our antics. For instance, at one point Jessi was convinced that she could stand at the light switch at the foot of her bed, cut out the light, and jump in bed before the room got dark. At about six years old, she just knew that she was faster than the speed of light, and we spent more time than I'd like to admit trying to prove it.

It never worked.

It took a lot of imagination and made-up games to pass the time in our old house. Just as it wasn't very big, our family wasn't really what you would call "made of money", either. The house was owned by one of the richest men in Leland and he let my mama rent it out for a little over $200 a month. There was no central air, and our heat came from an oil drum out back. When money was tight, and we had no money to buy oil, Mama would heat the entire house with a kerosene heater and an open oven door. I can remember crawling out of bed on a cold winter morning, wrapping myself up in my comforter, and sitting at the kitchen table in front of the open oven. I thought it was the coolest thing, and Mama never let us in on the fact that we were dirt poor.

My mama is also known for having a beautiful yard, and this house was no exception. There were flowers and trees everywhere! Unfortunately, though, huge trees and living 15 miles from the coast don't go hand-in-hand during hurricane season. We spent many summers cleaning up after storms, and being thankful that our home always remained in one piece!

This was a MASSIVE tree that was uprooted during a hurricane. Had it fallen in the other direction, our house would have fallen with it. (The present day funeral home is just to the right of the tree.)

My favorite part of Mama's yard was her "nerve garden" in the back yard. She had a koi pond, tons of water plans, and beautiful flowers out there. At one point, a friendly little turtle inhabited the pond with all those fish. There was a swing, too, and you could sit out there forever, listening to the water and watching the fish swim around. I guess it's safe to say that it was named very appropriately!

More hurricane clean-up. Mama's garden took quite a hit during this storm.

Our house also came with an old, old barn. There was a basketball hoop attached to the outside of it, and we spent many hours playing rounds of "HORSE" during sleepovers and birthday parties.

Gettin' our game on. Y'all know you like my hot pink striped shirt and my purple stirrup pants!

There was a ladder that went up into a loft, and that's where I kept a pet duck that my 2nd grade classroom had hatched. I loved that duck, and I was so excited when Mama told me I could bring it home! It swam around in a baby pool in the loft of the barn, and I was so sad the day it finally flew away. Or something. The barn was also home to many, many litters of puppies. I don't know what it was about my family and dogs, but there always seemed to be a slew of them. Every time a stray dog would find its way to our house, we'd take it in, and she'd push out 10 puppies a few weeks later. I've seen more animals being birthed than I care to remember, that's for sure!

I have no idea what the town plans to do with that land, or what they plan to put in that empty field. Part of me hopes it stays empty forever. But, just as we as people grow up and move on, so does life in a small town. Old houses get torn down, small roads become bigger, and family business are replaced with franchises.

However, regardless of how big the town becomes, or how many new houses they manage to squeeze onto one piece of land, I will always have these precious memories of growing up on Village Road.

Easter Sunday - 1991-ish

Saying good-bye to an old friend, and an older house - 2010