Anyone need some CPK bc Tot's got about 9,700 extra

CPK: Creatine phosphokinase (CPK) is an enzyme found mainly in the heart, brain, and skeletal muscle. Your body produces it when the muscles have been injured or diseased.

On Wednesday, Little had his consult with the Neurologist at Vanderbilt Pediatric. Doc Neuro listened to all of our concerns, examined Little, then sent us for bloodwork. Doc Neuro told us that since nothing is jumping out at him as a definitive indication of any certain syndromes, that it could be a long road to figure out why Little is weak and delayed. We already knew that, so that wasn't hard to hear.

On Friday, Doc Neuro called me with the results of the bloodwork. Here's what he had to say:
In a normal 17 month old, the body's levels shouldn't be above 300. Little's are over 10,000. What this means is that he has some form of muscle disorder or disease. There are literally HUNDREDS of conditions that can cause high levels of cpk, so now we must begin the process of ruling them out/narrowing them down. The 1st of these tests is called an Electromyogram (EMG). Basically what will happen is DOc Neuro will insert needles into Little's muscles and send currents through his body to contract his muscles. As this happens the flow of proteins and other impulses will be recorded to see which muscles are damaged the most and what proteins seem to be defficient. It will be painful and it will be scary. He told me to bring anything I can think of to distract Little with. Fantastic.

After the EMG comes the EKG to see if his heart is the damaged muscle. It's basically just an ultrasound, so that's a relief.

After the EKG comes a muscle biopsy from an area that the EMG pointed to as most affected.

After that (or before since we're already scheduled for our consult at the end of the month) comes genetic testing.

If we are lucky, we will get a diagnosis that tells us how best to help our baby boy. Some of the possible diagnosies are mild, treatable and some are downright terrifying. We are trying not to dwell on the wors tof them, but it is impossible to fully clear them from our minds.

It's going to be a long few months...

HE CRAWLED!!!!

I'm too excited to even try to come up with something clever to call this post. All I care about right now is announcing to the world that my baby boy turned 16 months old today and at week 7 of physical therapy, CRAWLED FOR THE VERY FIRST TIME!!!!!!!!!!!!!!!!!!!!!! I am so proud of him! He has so many factors working against him - the muscle tone, the left side weakness, the supinated ankles - and he pushed and pushed himself today during therapy and crawled across the floor to me. If you would have told me 2 months ago that at week 7 of PT, my floppy, weak little love would crawl 5 feet across the living room floor into my lap, I would have called you crazy and rolled my eyes at your ridiculousness. I am JOYFULLY acknowledging that I would have been wrong! Even PT Heather said she never would have guessed he'd crawl so soon. We were thinking 7 months, not 7 weeks. My heart is just bursting with joy and pride for him. And of course, he crawls for the 1st time 2 hours after Mister leaves on a PSU Mission. Hopefully Tot will keep getting better at it and will crawl to his dad when he comes home in a few. :) :) :) :) :) :) And of course I got it on video. You can hear PT Heather and I gasp when he starts to do it on his own and then yeah, you can hear me cry. 'Cuz that's what I do.

"Party Dinosaur"

Supination: the inward rolling of the ankle; turning the soles of ones feet in toward each other TOOOOOOOOTALLY gets it from Sam. Tot had his appointment with a pediatric orthopedist this morning. Doc was very quick - almost dismissive. He stood Andrew up and touched his feet a few times then said, "Eh.....I don't think he needs much....I mean if she [phys. therapist] wants him to use them then I don't mind it. Come back in a year." And that was it - the whole appointment took about 25 seconds. So it sounds like Ortho Doc doesn't think he'll be in the leg braces for long, which is great news! We went down to the Brace Shop in the dungeon of BACH where the team took fiberglass casts of Andrew's feet and legs up to the knee and placed the order for 3.5 D.A.F.O.s that will be here in about 3 weeks. They are SO much cooler than the Forest Gump braces I had in mind. They will be light blue foam on the inside

, royal blue velcro straps , and "party dinosaur" print on the outside. I held out 2 prints

and asked which one Tot wanted and he grabbed the dinosaurs, so if they look silly, it's his own fault. HA! Step 1 - the "sock", bendy tube, and electrical tape

Step 2: fiberglass wrap

Step 3: cut off fiberglass after it sets with large bent scissors and box cutter with a hooked blade

Funny guy swore he'd only cut off 3 toes in his 17 years of casting feet....

baby legs!

He did SO great! He ate Gerber Cheetohs and never fussed once while they were casting him. In fact, he didn't cry until I picked him up to leave!