Tag: health

A year later…

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A year ago today, I posted about my 20 week ultrasound and all of the scary tests that followed. At the time, we had no idea how Taylor's diagnosis of aqueductal stenosis would impact his life.

Here we are at 8 months old and I'm happy to report that as far as the neurologists are concerned, he's doing great. The shunt seems to be working well, the MRI they did in April looked good, and while they ultimately decided he does NOT have a cavum septum pellucidum (CSP) it doesn't seem to have an impact on him. We are so grateful that he is doing well on this front.

We get a lot of questions about his shunt. Unless it fails, he will have it for the rest of his life. There's a messy spool of tubing in his abdomen that will unfurl as he grows. The tube connects to the shunt and drains the fluid from his brain to his abdominal cavity. He has a variable shunt, meaning that there's a cool magnetic wand thing that his neurosurgeon puts over the back of his head where the shunt is, activating the tiny magnetic pin in the shunt, so they can easily adjust the pressure in his ventricles.

As a result, we have to keep magnets away from his head. He won't be able to play contact sports when he is older, but that's not a big deal.

Cognitively, Taylor is doing really well. He is very alert and responsive. He hasn't missed too many of those types of developmental milestones.

One of the concerns I talked about in last year's blog post was that Taylor was measuring very small – over a week behind where he should be. Turns out this was what we had to be stressed out about.

I love to eat. I never ever thought I'd have a kid who had very little appetite and needed to be put on a weight gain diet (at age 5 months!). He has been diagnosed as failure to thrive, had an 8 day stint in the hospital at the end of April, and came home with an NG tube. He gets colds that last forever which is the last thing a kid who won't gain weight needs (sucking from a bottle is tough with a cold and there's the whole lack of appetite issue).

Last week's check up with his gastroenterology team was hopeful. While it's still slow, they were all satisfied with the rate at which he gained over the past month.

He has missed physical/motor skill developmental milestones. But his doctors think that it's mainly because he's so tiny. We are hoping that once he gains more weight, those milestones will follow.

All things considered, Taylor is doing really well. We are so grateful for the love and outpouring of support we have received over this last year. It has been a crazy year. While we have had our moments (months?) of frustration and emotional exhaustion, we love this little person so much and couldn't imagine our lives without him.

2015 Retrospect

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I’m the only one awake in my house on the first day of 2016. As I sit here in the quiet of my living room, I figured there was no better time to count down my top 5 moments from 2015.

IMG_35695.  Exercising consistently…for half the year
My goal was (obviously) to workout consistently for the whole year. That didn’t happen. But…I did exercise regularly for half the year and frankly, that’s better and more often than I’ve ever done in my life. So, I’ll take it as a win. And maybe in 2016 I’ll exercise 75% of the year.

 

IMG_74404.  Rebrand ACS
Checked something off my professional bucket list – I project managed ACS through a much needed rebranding. It went quickly and I’m extremely satisfied with the end result. I have hopes that this new look for ACS will help our brand resonate better with the community, but primarily with the youth we serve. Our new tagline, Strength through support, was the top pick of tagline options among the youth clients we surveyed. We chose this for them.

IMG_56513.  Watched Nolan build and develop friendships
Building friendships when you’re three is challenging. One minute you’re best friends. The next, you’re not playing with each other. It’s been so fun and fascinating to watch. He has a great group of friends at school (and their parents are fun for us to hang out with too!). And our neighbors have awesome kids too. My hope for Nolan is that we can try to maintain friendships even after they all go their separate ways (whether it’s heading off to Kindergarten or moving). Until then, it’s fun to watch the cute, silly, and chaotic moments between them all.

IMG_04312.  Spent time with family and friends
We are blessed with a great group of family and friends. Lots of quality family time in this year – in many locations, too! San Jose, Marina, Seaside, Monterey, San Diego, Honolulu… Perhaps one of my favorite moments this past year was having my immediate family and Ryan’s immediate family all together on Thanksgiving.

IMG_4152 1. Traveled to Europe
This. This was amazing. I planned this trip for so long and had been wanting to go for years, but traveling to Europe (with my two favorite people) for my 30th birthday was by far the best part of 2015. We travelled to beautiful places. We fumbled our way through ordering food from people who only spoke French or Italian. We saw the world together as a family. People thought we were nuts for wanting to do this trip with a three year old, but I couldn’t imagine doing it any other way. I hope our future is full of traveling, discovery, and more adventures like this with my favorite people. Bonus: getting my first passport stamp on my actual birthday.

Happy New Year! May 2016 be filled with too many amazing moments to choose just five from 🙂