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!

Naive

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.

Wow! Update Time!

Holy Crap! I have not updated since my little man's surgery! I have been so busy and honestly just spaced it all out between the surgery, quitting work, school, Casey, the holidays...wow!  Here are some pic's on the little man's surgery that went down on July 6th.

Casey and Daddy in Pre-Op.

Casey was asleep for quite awhile, but always with the Nuk!

Starting to be more active.

Driving around the children's floor at Mayo :)

Here is when he fell in love with fishes :)

By the ride home he was happy to be out!

Finally, some rest!



The surgery went well and our doctors were amazing! He did have a reaction to the anesthesia and couldn't keep any food down while he was in the hopsital. He also required 2 blood transfusions which was scary. We are almost 6 months (!!!) post-op now and you can't even tell he had surgery! :D

Thank you for all the love, support, prayers, visitors, cards, emails, presents and everything. We truly, truly appreaciate it!

July is...

"You wouldn't be shattered on the floor now
If only you had seen what you know now then"

(Taylor Swift)

 

It got me thinking, before Casey's diagnosis we had never heard of Cranio...we didn't know we should be concerned about his head shape...to us it made sense, long skinny baby = long skinny head. It didn't stick out to us. The doctors didn't seem concerned, no one mentioned anything at the baby-well appointments until now. Looking back it's been so obvious. It's even more common in premature babies...why didn't someone check? Why didn't we know? Why didn't it trigger an alarm somewhere? It doesn't have to be this way for other families and other babies...early detection is the key.

 

Please visit my "Resources" blog and look up what you can, educate yourselves and others. Maybe just keeping it in the back of your mind will help someone, someday.

 

 



Just checked my mail...

I always like to check the mail, even though nohting really comes without a stamp that says "You're pre-approved!" but today there was a package waiting for me, and a huge envelope. Well I decided to open the envelope first, as it was from Mayo Clinic. Inside was a 17 page booklet, the first 2 pages were appointments that have been made for July 5th followed by 15 pages of instructions. My eyes were welling up as I moved on to the package,

The package had a return address of Cranio Care Bears, and of course I got excited. My wonderful new friend, Shelby, is a Cranio Advocate for them and told me a package would be coming. It couldn't have come at a better time. It was full of fun stuff- hats, slippers (for both me and Casey), flip flops, wisps, candy, hats, some toys, a super soft blanket and a journal...but what really got me was the beautiful prayer chain they sent.

Now some of you who know me well, know I am not a very religious person, but this moved me so much. Those tears that were welling up earlier were just coming out now. Beautiful and colorful, it is meant to hang from Casey's crib after surgery and there it will remain until we go home where it will find a place in Casey's nursery. It has advice from Cranio families, a little note from a young Cranio kid, and quotes that will stick with me forever, like "Some say I was born with a crooked head, but I like to it's where God kissed me instead" and "They say there is a smile waiting for you on the other side of sadness"...but it was the note from Shelby that said it all...

"Anyone can give up, it's the easiest thing in the world to do.

 But to hold it together when everyone else would understand

 if you fell apart, that's true strength"

Thank you Shelby Davidson and Thank you Cranio Care Bears... I hope someday I can repay the favor.

Cranio Resources

Cranio Angel Network

Cranio Care Bears

Cranio Kids

Cranio at Mayo Clinic

Mayo Clinic in Rochester

The Waiting Game

I feel like a kid in a car...are we there yet? In a week we will be leaving for Rochester to start pre-op workups, like blood-typing and more imaging. We should be getting the call for exact times...it all seems to be hurry up and wait. I do know it will be super early in the morning, they've advised us to come to town the night before.

I keep checking the calender like I check the clock. 9 days...

We have awesome support. Not only have our friends and family been supportive, but support groups have reached out to us as well as some amazing individuals who have been though this all before. I hope to someday have the strength they do.

Right now I am a piles of nerves, it feels like my heart is in my throat. I think I am doing great, then I breakdown out of nowhere. I was at Kohl's looking for some 12month zip-up/snap-up outfits for Casey and I could find every size BUT 12 month. Do manufactures think babies stop needing those once they magically hit that size?! Anyway, I just stood there and started to cry. I know it was something so trivial, but something I really wanted to do that I knew could make Casey's life easier. I ended up finding one pair and later found a Florida Gator's Mascot outfit on clearance...well I had to buy it!

Look, his first Popsicle! :D

Ok, well I am off...trying to get everything in order before I lose my mind. The upside to this all is I have been in touch with a very nice woman whose son has had this surgery 2 years ago and all her advice and information sounds so promising. It helps to know there is such hope and promise and like I discussed with my friend, we are so lucky, it could be worse!