I might as well start where it makes the most sense–at the beginning!
After a super traumatic birth with our first son (Cody), Evy’s birth was a dream. True, I was in labor for 23 hours, and I was high risk, aaand my water had broken so we were on the 24 clock, AAAND the Dr was almost ready to prep me for another emergency section, but then HALLELUJAH, he came out naturally!! The only one of our 3 to do so (thank you Evrett!)
Although he was on the small side at 5 lbs 4 ozs, he was extremely healthy. He cried right away, nursed immediately like a champ who was in a marathon, his apgar scores were both good & high, and he was extremely strong. The Dr said that normally babies on the smaller side stay in hospital for 72 hours, but he was so full of health & vitality that we got to go home after only 48 hours. It was an amazing start to his amazing life!
He may have started out small, but man did he ever grow quickly! He went from preemie size clothes to 3 month clothes within about 2 weeks. We called him our “Mighty Mouse”!! He defied everyone’s expectations and rolled over at only 6 weeks of age (some babes take up to 4 months to accomplish this, so when our Mighty Mouse did it so young, we were super happy!), he smiled with us like crazy, had “conversation time” with his dad every day after work (when Scott would get home, and he and Evy would literally smile and coo and laugh themselves silly for 5-10 mins straight!), took to solids like a champ, and said his first word (“mama”) at only 7 months!! He was our happy-go-lucky little ray of sunshine, Mr. Easy Going, never upset, and always fighting sleep to party!!
The tables began to turn when he was about 1 year old. We moved to my hometown that I grew up in, a gorgeous little place called Flin Flon in Northern Manitoba (yup, I’m a Canadian gal) where we thought we would have the slower pace of life that we craved for the kids to grow up in; the safe streets where they could play kick-the-can until sundown, mountainous rocks to climb (and inevitably get their first wounds on!), schools within 5-10 mins walking distance, and a feeling of “home” like no other. Around that time, our little dude seemed to halt in his development. He stopped using the 5 or so words that he had since 7 months of age, and he stopped eating his finger foods. That wasn’t surprising though, as a move can shake anyone’s world up!
However, this hiatus in his development turned in to a more permanent situation. A few months later, I could barely get him to eat solid foods at all. And talking? Nope. Although I was getting concerned, he was only 18 months old, we had had a basement flood since moving in (which, needless to say, sent Mommy & Daddys’ stress levels up!) and he was still Mr Happy-Go-Lucky. We figured he would come around when the time was right.
Shortly after, we were blessed to learn that we were expecting our 3rd baby (our now 7 month old daughter named Lydia). I became extremely and unusually sick, even for a pregnant woman. I ended up having emergency surgery, infections from that surgery, a massive abscess inside my liver (causing me THEE WORST PAIN of my entire life!! Seriously, labor was a cakewalk compare to that pain!), blood transfusions, etc. Evrett seemed to slip farther away from us. He would eat a handful of choice items, was having great difficulty sleeping, and we might as well even not discuss his “talking” at that stage…because it was non existent. He barely looked at us. Calling his name registered no reaction whatsoever. Once again I figured that given all that our family had been through, and all of my time spent away in hospital (in a city 8 hours away), meant that he was simply withdrawing more temporarily. I had hoped once I was home for a while, and could finally pick him up again, that he would again thrive. But that wasn’t how it went….
On his second birthday, Valentine’s Day 2017, I attempted a birthday pic of our darling little bug. True to his easygoing nature, he sat for the picture. But the vacant look on his beautiful face broke my heart. His beautiful blue eyes didn’t twinkle anymore. He didn’t smile back at me. He didn’t know what “look at the camera” meant. He was there….but not there at all. And I cried. I knew something was up with our darling Bug.
Gut feeling can be such a telling thing, can’t it? I took him to see a Dr, who checked him out, asked me some questions and observed him, only to tell me that things seemed “normal” with him. You would think that would have been comforting, but I knew deep down that he was mistaken. I had asked for a referral to our town’s Speech Pathologist (SLP for short), as well as for a hearing test, but this Dr saw no need, and nothing was done.
The months went by, and our little man came no further along. Finally in August, when a friend of mine came to visit our new baby daughter and observed Evrett’s disposition and heard my concerns, she handed me the direct number of our SLP. She herself is a Speech Pathologist, and she said something that changed my world at that time. She said to me: “It isn’t ‘normal’ for a kid not to talk until he’s 4. There’s always a reason.”.
I called our child SLP the very next morning, and that call changed the course of our life as we knew it…
I’m always incredibly nervous to meet new people. If I’m being honest, “nervous” doesn’t even cover it. Incredibly anxious would be a lot more accurate!! But our SLP (let’s call her “K”) has been like our fairy godmother since day 1. She has been one of Evy’s biggest advocates, as well as a true friend to me, and we owe her so much gratitude!!! Right away, she got our town dietician involved, an audiology done, then a Feeding Clinic specialist, E.N.T, family Dr, pediatric developmental specialist, etc. Basically, if you can name the specialist, she got them involved! And the ball began rolling….and rolling…and rolling….
(Side note: I promised in my welcome intro that I would do my best not to bore you, ha!! So I will keep the rest of this summary as brief as I can, by sticking to the main possibilities for diagnoses brought up over the last few months)
None of us could ignore the possible signs of Autism Spectrum Disorder (ASD) that Evy was exhibiting. The often blank stare, the lack of verbal speech, preference for specific foods, and difficulty sleeping. That being said, there were significant ways in which he did NOT fit with what one would expect of a child somewhere on the Autism Spectrum. (I say this with confidence, not only as an educated mother, but as a teacher). A few pieces of what we called the “Evy Puzzle” fit with ASD, but many others were left unexplained. So we all pressed on, attempting to figure out what would work for this unsual little dude.
His Physiotherapist then brought up the possibility of Cerebral Palsy, which once again made sense in some ways. Evy drools a lot without being aware of it, his core has light muscle tone, his little hands kinds of come up to his shoulders when he runs, etc., but as with the autism possibility, this new possibility of CP did not explain half of his issues. The “Evy Puzzle” was becoming even more complex.
Where did our Bug fit?!!
Last week we traveled 9 hours away to Winnipeg (our 3rd trip there in 3 months for Evy’s appts), for an MRI of his brain, osteopathy appt, and ADOS test (the gold standard of autism spectrum testing). We were almost halfway home on the highway when we got the call that they found something on his brain MRI. Something that explained everything. Something called LeukoDystrophy (which means destruction of white matter in the brain). There are no words to describe how I felt turning around and driving the highway back to the hospital that day. It was gut-wrenching.
The next morning we met with his neurologist and his genetic specialist, and found out what it is that has been holding our darling Bug captive: there are abnormalities in the white matter of Evy’s brain, as well as 2 anterior temporal cysts. (The white matter in the brain is what transmits information amongst the grey matter).
My heart sank, and at the same time my spirits rose. That was the oddest dichotomy I had ever experienced. How the hell can both happen at the same time?!! Well, I was relieved that our sweet bug does not have cancer, or a brain tumor, or heart disease that could end his life. But, a brain condition isn’t exactly something any parent wants for their child either.
I was then flooded with a whirlwind of emotions. I felt anger. Anger that anything should dare to be “wrong” with our darling ray of sunshine. He is the sweetest little human I have ever had the pleasure of knowing, and there is something like this holding him up? NOT FAIR, I felt. Then I felt scared. What if this shortens his lifespan? I couldn’t bare it. I couldn’t live without my Bug!! Next came sadness. Sadness that my sweet Evrett should have to go through anything like this. Then, back to anger again. This time, angry at the poor neurologist who was only trying to help answer our many questions. (He spent over an hour with us, very patiently discussing all of the possible diagnoses and their implications, bless his heart!). I’ve never considered myself a particularly angry person by nature, but when something threatens my babies, look out, because Mama Bear is coming.
Now we are back home, and awaiting the results of further genetic tests to find out WHY Evretts’ brain is the way it is. The Dr’s best bet so far is something rare called RNAse T-2 Deficient LeukoEncephalopathy, and my gut tells me they are right. (I would explain this to you….but this is still only 5 day old news to me, and I have much to learn myself yet). There is a possibility of one other type of LeukoEncephalopathy, or that maybe he suffered brain damage prior to birth, or maybe that he has LeukoDystrophy (destruction of the white matter of the brain)…but all of those seem unlikely.
All that we want is to see this darling little man live the long, happy life that he deserves. To see him successfully talk, and progress, as all parents hope their angels do. So far, with the knowledge we have, it looks like he should live that long life. He should continue to progress, though will likely always be “behind”. We can deal with him being “behind”. “Behind” is no big deal. All we want is our darling Bug to be with us for as long as possible.
Please stay with us as we continue along his inspiring journey.
Please send prayers or positive vibes that he progresses in his development, health and happiness.
Thank you all for reading
Great first entry Lacey. Chris and I are wishing all the best to you & the family, especially that love bug Evy. He will no doubt live a long life that is full of love.
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Thank you so much Chris & Vickey
Lacey you are an incredible writer and I will continue to pray for your precious boy. I can not imagine going thru all of this with 3 little ones, but you will get thru this because you of the love and support of so many who love you. Thank you for sharing and educating us on his diagnosis…much love to you and Scott and the family…xo
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Love and prayers that you get the answers you need. Thanks for sharing your journey with us.
Thank you so much Denise ❤️🙏🏼
Thank you for sharing your your story so far. I will pass the message along to all my FB friends. Hugs and Kisses to your whole family😘. Evy is so blessed to have parents like you!
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Evy is such a little sweetheart. My thoughts are with all of you. I hope you receive all the answers soon. Thank you for sharing this journey. Hugs.
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Evy may no longer be “mighty mouse” but he will forever be “MIGHTY” 💪. He will be able to climb that mountain and so much more because of the love you have all given him since before he was placed in your arms 💓💓💓. He feels that love and it will always build him up as he reaches milestones. I know it is hard to be strong some days and that’s ok. Please know though that you are doing a wonderful job, mama. Glad to have you in my tribe 💖 Thinking of you all very often. Miss you!
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