Tuesday, February 19, 2013

Valentine's Day

Happy late Valentine's. We didn't get to celebrate, we were in the hospital with Casey. I am not sure what is going on and it's apparent the medical community is at a loss right now too. Casey went to bed at 8pm on Wednesday and just wouldn't fully wake up on Thursday. I tried bribing him with food, milk, even The Wonderpets but he was just a little blob on the floor. Eyes open, starring off into space he wouldn't answer to his name or anything. As Ming-Ming would say:

After consulting with his pediatrician we decided to take him to the ER. They ran every test imaginable on my little man. CT, xray, ultrasound, EKG, spinal tap, arterial blood draw, lab work, etc...all that came back was some key tones, low blood sugar and elevated levels of acid in his blood. We were admitted for the evening after he had another "episode" and didn't respond when given his IV. He was so out of it. We were released only to come back the next day. The pediatricians then suspected seizures or a metabolic disorder. We are still at a loss and scratching our heads. Along with the weird episodes the test results came back showing the same shadow in his lung that has been there since his last chest xray in October. Yet another mystery. Our local pediatrician team has referred us to Mayo, so we will be headed to Rochester in the next week for extensive testing as well as more testing back home. While this is the "short" version, I just wanted to start keeping people up to date before I fell behind!

Tomorrow is the EEG to test for seizure activity...we have to sleep deprive him tonight, wake him early tomorrow and then proceed to not let him nap until the EEG at 1 pm. Wish us luck, we need it!

Thank you to all my friends for texting and keeping us in your thoughts and prayers, we really appreciate it!

Sunday, February 10, 2013


I am guilty, I am guilty of thinking that Casey's craniosynostosis would fix itself after surgery. I naively thought that he would be fine after, no complications, no follow up surgeries...we'd just be on our merry little way. Well I guess I was wrong. And it sucks.

It's not the Casey isn't a perfect little 2 year old, because he is. He loves his cars and dinosaurs, he loves his Auntie and family, he has taken to his little sister like white on rice...he sings and dances, climbs and tumbles, laughs and cries, but he doesn't talk. Only one word constantly. Go. Go! It's the only word we hear and it is what he loves to say. My sweet boy.

I've noticed Casey was delayed in speech for what seems like forever now, something in my mommy instinct knew something just wasn't write. It couldn't be. He had said some words, like mama, dada, banana...but very rarely and almost "on accident". My first thought was just a delay, then I thought of autism. I talked to several people about my fears and I was reassured that it wasn't the case by birth-three, his neurosurgeon, his speech language pathologist (SLP) and his pediatrician. He took the MCHAT 3 times and "passed" every time, but something just wasn't right.

I was told "he'll talk when he's ready", "my cousin didn't talk til he was 3", "just give it time", "take the pacifier away" but it didn't seem to dawn on anyone that perhaps this was more than a stubborn little boy who liked to talk "non-sense". His frustrations were growing, as well as ours and it was so hard to see him upset because he couldn't express himself. I was also growing frustrated at friends and family members who thought I was crazy for being worried, for researching and for making medical appointments.

Than I found it, the link between speech delay and craniosynostosis. It also mentioned how the SLP should be part of the process of treatment from the very beginning. We were told that learning disabilities could happen, but it would be rare. I was naive, we wouldn't be part of that 10% and yet here we were. Casey started speech therapy almost a year ago and has a fantastic SLP, she works tirelessly with him, coaching him, guiding me, using all the tricks in her book...nothing. No words. He's stopped trying, he literally buries his head when asked to mimic. He loves to play with us, but don't ask him to repeat, don't prompt him or he'll have a melt down...but show him signs and it all clicks. He learns them, their meaning and then applies when without being prompted immediately.

I guess the puzzle pieces started clicking for the SLP. We knew Casey's hearing was fine, he's had to tested a couple times and passed both times with no concerns. He was vocalizing but not making any sense, his receptive language skills were at and above his age level, he's expressive were rated at that of an infants. Though she wasn't sure, our SLP had begun to expect Childhood Apraxia of Speech as a cause of Casey's trouble speaking. We had ever heard of CAS but once we researched it and asked our pediatrician we all agreed it appeared this was the case. Casey also then had several appointments with the local university's speech department and they have come to the same conclusion.

Back to the craniosynostosis, when Casey had the surgery in July of 2011 we were told it would be a one-and-done. The Pi Procedure had left some openings, some "soft spots" that would correct on their own. We weren't to worry about it, just come in every year for a check up. Well his one year check up came and he had his follow up CT scan. It showed those soft spots had not yet begin to heal, which was odd, but we were told to just follow up again. I called to talk to his neurosurgeon and plastic surgeon recently and discussed that they seemed larger, and also talked to them about Casey's speech delay, both of which were concerning to them. We were supposed to meet with them this summer, but it was pushed up do to these factors.

In March we will be heading back down to Rochester to meet with his craniofacial team. He will undergo another CT scan (we will sedate from the get-go this time, last time was a disaster), and then we will meet with their SLP, a geneticist (to see what his gene make up looks like, to see if his craniosynostosis is related to a syndrome), his neurosurgeon (to assess language development and inner cranial pressure) and his plastic surgeon, all to schedule a second surgery this summer to correct those dreaded softspots.

Those are the details, I really tried not to get into the emotions...that's a whole other blog. Ugh.