Here’s a post just to commemorate our little guy’s birthday! The big TWO!!
If I had to choose only one day out of the entire year to share something on the blog, it would have to be between today and Liam’s birthday. Today is a day to spread awareness for Kawasaki Disease (KD) – a horrible illness that ravages the body of babies and children. It is also the leading cause of acquired heart disease in babies and children. Kawasaki Disease is an acute inflammation of the blood vessels in the body. If left untreated (10 days is the magic number), it can cause heart damage and does so in about 20% of KD cases (severe heart damage like Liam’s in about 1%). The symptoms of KD are not unlike that of the flu – a severe flu with a rash and a persistent fever. Liam was unlucky enough to present somewhat atypically, which is common in babies under a year. No matter how much I begged the doctors to consider KD because I had researched his symptoms, they would not. This happens a LOT with KD kids because doctors are not well versed on Kawasaki Disease. Plus, they see the common flu with relatively the same symptoms all the time, so are inclined to go with a diagnoses that is not rare. This is why so many kids suffer from coronary aneurysms as a result of Kawasaki. When it isn’t caught in time, it swells the heart vessels into bubbles.
RARE DOESN’T MEAN IMPOSSIBLE!!
The symptoms of Kawasaki are this:
They may present with less than a full set of symptoms and in babies under a year, it is actually often atypical! Liam’s symptoms came and went. His fever even wavered. If your child may have KD, you have to push the doctors hard! There are even KD specialists that will speak with you in Boston and in San Diego. Don’t give up until there is a definitive answer to what is ailing your child! It may not simply be a flu. Listen to your gut! It knows more than the doctors sometimes, believe me!
When the acute phase of KD ended for Liam, we were sent home. We had no idea that his little heart had been damaged. Inside, a terrifying event was preparing to happen. A week later, his artery occluded and he went into cardiac arrest. He almost needed a heart transplant. He almost died.
Liam ended up with one of the most severe cases of Kawasaki Disease all because somebody didn’t know something they thought they did. This can very easily be almost entirely prevented with AWARENESS!
So this is why I ask you to PLEASE share with your friends and family. It really is so important!
Donations to help KD research are always appreciated at KDfoundation.org
Thank you for reading and sharing!
Liam’s KD story: Click Here
I cannot believe I am already thinking about his birthday already. It’s gonna be a Big Two Birthday Bash! I’m such a freak, I swear! I LOVE Christmas. I LOVE holidays. I LOVE birthdays. It’s never exhausting for me to plan and make these things happen and happen as well as I can make them happen. Most parents are frustrated about buying gifts, affording decorations, getting everything all planned out, etc. Not me! People sigh and grumble at me when I say I can’t wait for Christmas in July! “Only FIVE months,” I exclaim! Well, as would be expected, I cannot wait for Liam’s second birthday in April! I am so excited and have so many ideas! And you know what? I don’t have to feel bad about being excited about this one! This kid deserves a celebration! At least once a year, he deserves for the the entire day (or week) to be all about him and how amazing he is and how much of a trooper he is! I am so proud of my amazing kid. I am so incredibly thankful that God gave me this little celebratory miracle kid. Yes, I am cliche! We all think our kids are just the cream of the crop. Well, I am allowed to! *He he*
So, will it be Elmo or Mother Goose Club theme? There’s also Disney themes (or is that my favorite?). Or maybe it’ll be indoor water fun? How about a fun toddler play day with fun stuff like silly string and moon sand? Who knows what will come of this party! I’m excited to see what this eccentric party brain of mine will come up with!!
This morning I woke up, went into our living room, looked outside, smiled, grabbed a blanket, sat on the couch, got on social media, and waited for a text from Will. An hour went by. Nothing. He had an interview early this morning for a job that would let him be home with us in the evenings and on weekends! After deciding to text him myself, I waited and waited for a response. Nothing. Finally, after about an hour and a half to two hours he text me back! They had liked him, he had gotten the job, and they had him start working this morning! I usually love beautiful cloudy days anyway, but today is an extra special one because going forward we’ll have lots more family time and the holidays will be fantastic because he won’t have to work!
Sorry for the all day delay, guys! Liam didn’t get out until about 5:30-6:00 and we needed to slowly get some food into him. They did a whole workup! MRI, stress test, another special medicine to dilate his arteries, an echo, and an EKG (all while he was sedated).
We were waiting to see the doctor when she came down to see us in the waiting room after visiting Liam personally! She said Liam’s heart looks great! She said his aneurysms haven’t remodeled much, but with KD, no news if good news. Plus! She says she doesn’t expect too much in the very 1st year with the size of his aneurysms anyway. Even though his heart has a little scarring, his function is fantastic and he has zero clotting!
Although she doesn’t love how big his aneurysms are, she is actually (for once) relatively happy with where he’s at and how he’s doing!
The best news of all? He’s been getting sedated imaging (CTs, MRIs, etc.) every 6 months thus far. Dr. Jone feels confidant enough to wait 2-3 years before doing routine imaging again!! He’ll still get echos every other month as usual (and if those ever show anything different they’ll look further into it of course – which hasn’t ever happened), but no routine invasive stuff for a few YEARS! We’ll definitely take that!
Just wanted to thank everybody for your continuous prayers and positive vibes. We love you for being with us through the bad and the good times!
Thank God for some good news!
Hanging out with daddy…ALL DONE!
We are officially on our expedition to Denver today. Liam’s cardiac MRI will take place tomorrow at 1:30. We should get results shortly afterward. In March Liam was actually pretty tolerant of, what is to him, a very long ride. This time, not so much. 17 months is definitely not a sit-in-the-car-seat-and-ride-all-day age. Plus, those little molars are scraping their way into existence causing him a bit of chaos on top of it all. It’s making for an interesting drive, but Elmo is making Liam quite content when the cell data allows.
However, soon we will be there and he can run and play to his heart’s content. I’m just praying he doesn’t feel quite as miserable tomorrow!
I will come back and elaborate on the results as soon as I have time tomorrow or on our way back home Wednesday.
THESE BOYS! Noah is Liam’s cousin who was born 5 weeks after him (yes, we know Liam is short…lol). They are so much fun to have around together. I swear it is like a mini social experiment watching two 1.5 year old baby boys communicate and process everything together for several hours. If you just sit back, watch, and sort of moderate them, you almost learn something yourself about natural, raw, unbiased communication! Maybe it’s that I’m just not around kids this age together very often! Lol!
Enjoy these cute faces!!
To anybody who reads this story about our little guy, please know that I am merely documenting a life event. In no way am I asking for pity of any kind for my family. Instead, we prefer positive vibes and prayers! They do so much more good. I feel thoroughly blessed to have a beautiful son and fiance’ and I wouldn’t change my life because I know that God has a perfect plan for each of us should we choose to listen and follow the path.❤
Today marks 17 months, 1 week, and 4 days since the best day of my life…The day my sweet Liam Paul was born! Since then, his mere existence has both broken and restored my heart 10 times over.
When Liam was 3 months old, he contracted a very serious illness called Kawasaki Disease (KD). KD a disorder that causes inflammation of some of the blood vessels in the body during its acute phase. If the illness is caught within the first 10 days and Intravenous Immunoglobulin (IVIG) is administered, most children go on to lead completely normal lives with no further damage. However, when the illness is not caught in a timely manner, the child can suffer severe heart damage in the form of coronary aneurysms. This happens all too often to KD kids due to misdiagnosis. This is why KD is the leading cause of acquired heart disease in children and it is the reason our sweet Liam now lives with what are referred to as “Giant Aneurysms” in his coronary arteries.
On July 31st, 2014, my 3 month old baby had a heart attack in the backseat of the car and went limp in my arms. There is no way to describe the amount of fear that coursed through me as I watched my first and only child go ashen and unresponsive right before my eyes at a gas station in our small town. I can remember each detail as if it were yesterday.
The week before this happened, Liam was hospitalized for a few days due to what they said was a bad virus. I had mentioned and asked for Kawasaki Disease to be considered multiple times (I had looked up his symptoms online), but they told me more than once that it was not KD. One doctor even dared to say he’d bet his life it was not Kawasaki (I wonder where he is now). During this 1st hospital visit, Liam’s heart was slowly being attacked and nobody knew it. We were discharged about a week and a half before the heart attack.
When we were re-admitted after Liam’s arrest and the cardiologist working with him said the words “Kawasaki Disease,” it was all I could do not to burst into tears and scream at the top of my lungs. I knew what was wrong with my baby from the beginning. If only I had pushed harder, maybe his little heart wouldn’t be where it is today.
It took me a long and arduous time to stop thinking about the details and misdiagnosis and to concentrate on going forward. I still think about it sometimes and it makes me crazy.
On the 1st of August (the next day), Liam was airlifted out of state to a hospital that could perform a HEART TRANSPLANT. Those words took a long time to really sink in. At that point, while we were still in Albuquerque, they worried his aneurysms would burst and they would have a harder time getting him where he needed to be (Denver), so the preparation and flight were very rushed. His dad rode with him in the little plane and, because only 1 passenger could ride, I drove. I drove with my nephew in the car and Liam’s Godmother who carpooled. I drove for seven long hours. It was the longest, most painful segment of time I’ve ever been away from my baby. He was sedated and intubated, so he wasn’t aware that I was gone. It was still excruciating.
Upon arrival, the doctors in Denver simply told us that a heart transplant was on the list, but not yet a requirement. First they wanted to see if they could save his own heart, which wash halfway occluded with clots. A single doctor’s executive decision (after talking with us) to treat the clotting in Liam’s aneurysms aggressively saved our little guy’s heart. We will be forever grateful to him for somehow knowing exactly what to do.
Half of Liam’s heart had been occluded for two days by the time they cleared the clots. They told us the left side would likely not beat again and, although his heart would be functional, half of it would die. Once they were able to get Liam’s heart to regain blood flow by use of strong clot busting medication, it started beating once again and literally astonished doctors. His heart had kept a minimal amount of blood flowing into the blocked areas by way of alternative grown passageways in order to compensate until the main arteries were re-opened. More than one doctor told us that it was not their doing that saved him. It was God. Liam was just meant to be here.
Liam is a living breathing miracle!
It is unknown at this point whether Liam will need heart surgery or transplant in the future (some say that he will most likely need something) because his aneurysms are of the size that generally don’t heal very well, but we are of the mind that only God can make those kinds of final decisions. Plus, we know others who have giant aneurysms who have seen some pretty amazing healing that they believe is due to a natural organic lifestyle! So, obviously we have adopted that as well! Clean healing foods and products. Keeping the chemicals out of the way in order to allow the body to use its full healing power. Liam sees his KD specialist about 3 times a year up in Denver and he sees his cardiologist in NM about the same. We hope to reduce the frequency in the future. He periodically gets heart testing done to watch that his aneurysms are not getting too narrow or clotting (he takes lots of blood thinners – including injected ones – to prevent clotting) to cause a blockage again.
Currently, we are living our lives to the fullest every day in appreciation of God’s little miracle that lives with us and reminds us that anything is possible. Liam’s pure gumption at just 3 months of age gives us strength to get through ANYTHING! As long as we remain together, we can power through all of life’s obstacles!
Here’s our little hero! We enjoy him daily! He’s a pretty amazing kid if I do say so myself!
We did the Pinto Bean parade Saturday morning for Kawasaki Disease awareness and I got to shoot a wedding at Tamaya Resort and Prairie Star on Saturday evening! Fun fun!
I was missing my baby love, though. Now I get a few days to spend with my little man before it all starts over again with weddings next weekend.
Wouldn’t trade it for the world!
Liam will be having his 1 year cardiac MRI on Sept. 29th. We had it scheduled for this Tuesday, but unfortunately he came down with a head cold and an ear infection, so they had to reschedule because anesthesia and sicky kiddos is a bad plan.
The last imaging Liam had was a cardiac CT in March. Nothing had actually changed since his diagnosis aside from a tiny bit of remodeling of his aneurysms (a good thing by most standards). However, the blood thinners did their job so well over the first six months that the 6 month CT revealed an aneurysm that was much bigger than the others (bad thing). What we hope is that, although it was startling to find, maybe it actually healed some from when he was diagnosed. Maybe, because it was full of clot in the beginning, they couldn’t tell that it was actually bigger before and it, too, had reduced in size and/or remodeled.
Simply put, our hope is to see some regression in his aneurysms (shrinkage/remodeling). We’ve heard amazing stories of kids healing after Kawasaki Disease ravages their heart arteries. We just pray every day that Liam will get to do the same and we can feel the kind of relief that must be indescribable. However, no news is also good news! If everything stays the same for now, we’re ok with that, too.
If you have a moment, please pray for positive news from his MRI and send him those healing vibes!