A week ago, the biopsy results from Charlie’s endoscopy came back (normal) as did the labs they drew after the endoscopy was performed (not normal). The blood work revealed elevated levels of an enzyme (CPK) that indicate for muscle distress/deterioration, which along with another elevated enzyme from a previous test (Aldolase) are markers for things like muscular dystrophy. I felt like I’d been sat on by a rhino. Squished. Squished and nauseated. Although the gastroenterologist assured us there were muscular dystrophies that were nothing more than a nuisance, I wanted to be heavily medicated or drunk – it was too much to handle. With our neurology appointment more than ten days away, all we could do was wait.
Thankfully, there was a cancellation and we were able to see the neurologist this morning. Charlie’s fourth ‘ologist. The short of it is, he doesn’t think Charlie has muscular dystrophy, but he will reevaluate him in three months for any regression. The longer of it is, I had done some research on CPK and knew that elevated levels can be reported if it’s a particularly difficult draw. They had to try three times to get his blood that day. I could hear him screaming from the other side of the door. He still has little bruises on his hands, feet and arms. I mentioned this to the neurologist who confirmed my suspicion and said Charlie’s CPK levels should never have been checked after the endoscopy. Of course they show muscle distress – his muscles had just been cut on. He hasn’t explained away the earlier elevated Aldolase levels, but I’m doing my best to swallow that worry and wait for our next appointment. In three months.
Meanwhile, he did notice some weakness in Charlie’s shoulder tone – something I have been picking up on when trying to encourage him to sit. Feeding therapy will include physical therapy, so the neurologist seemed confident it would be addressed and remedied then. If all goes well, we should be starting therapy on August 18th.
So much stress over such an adorable little fella. I hope that his issues are sorted out sooner rather than later. Would he mind if I sniffed his head and then maybe chewed on those delicious cheeks for just a minute?
Poor little man! He’s so cute and brave. Really want to blow raspberries on that belly! I’m sending good thoughts your way everyday. Be strong Mama! I know you can be!
Thatta boy, Charlie! Keep getting stronger and healthier and keep your mama smiling
Let me worry for you. I’m very good at it, and have been waiting for other shoes to drop for most of my 52 years. You enjoy every minute of that adorable love bug, and be confident that I’m fussing internally over every test result, possible dx, unlikely dx, and anything else you need taken off your shoulders for a few hours. Hugs & raspberries to Charlie, and the cats if you’re feeling daring.
Me too. I’ll worry too and you just love on that baby.
I cry after I read each one of these posts… I am happy things mostly look okay, but three months is an eternity. Know that you have people all over the internet thinking about you and hoping things go well! What a week this must have been for you. An awful, awful week. *hugs*
He is incredibly cute though, isn’t he?
He’s ridiculous! Every time I look at him, I’m overwhelmed by cute.
I second what Melanie wrote… that’s exactly what I was going to say. I hope the next three months pass quickly. Thanks for updating and sharing more Charlie pics… he’s just too cute. <3 There have been many times over the past few weeks when I've thought "I wonder how Heather and Charlie are doing?" so yes, your family has an army of supporters here cheering you on.
I check frequently because I am overwhelmed by worry. I had a baby girl just a couple of months before you and having a baby just seems to put you into hyper sensitive mode where other babies and moms are concerned. Sending lots of love, hope and wishes and a little something to help your way.
Oh Momma! I have been reading your blog for many years and have loved following your beautifully written stories. I am so sorry for what you’re going through with your sweet little dude. He is so adorable! I’m routing for you and yours along with everyone else! Best wishes!
I’m so glad feeding therapy is coming up fast.
I am so sorry you are having to go through all of this. You are a very strong woman and a wonderful mother. Keep your head up. Know that we are all here to support you in anyway. Really glad he will be getting therapy soon. He is such a beautiful little baby. Good luck.
That sweet beautiful scrumptious boy. xoxo
I’m sorry they had you worried and glad that there are signs of, essentially, a bad draw.
He’s adorable, as always.
Next time he see the neurologist, maybe ask about myasthenia gravis?
Assuming the therapy doesn’t work. If it does then never mind