Back in the EEG ER (doo doo dooooooo)

Yesterday morning we got called into the ER after I sent a video of one of Miles' strange seizure-like things he started doing to the neurologist.  Miles only does this when he is uncomforable and tired and almost always in the car seat so we didn't think much of it but the neuro thought it looked like an infantile spasm so we raced back to our city crib.

Rough night 

You can probably imagine the fun we had putting on Miles' leads seeing that he is a fearful one-year-old who hates hats. There were a lot of big rolling tears from us both. Fortunately, he has been a trooper since then and even miraculously slept well last night. I feel like I slept on a park bench during a winter squall because they only have benches for parents to sleep on and it was freezing under the relentless blasting air, but he slept so that's the important thing.

Miles hasn't had one of his episodes since we have been here and we have been trying hard. Unfortunately they don't want us to leave until he has one so we are (very oddly) praying for a seizure-spasm-tic thing (?!?!). I even had him imprisoned in the car seat while shaking the crib and making motor noises. (My friend Kaetlin witnessed this spectacle and opted to join in as a vehicle passenger.) After the first twenty-four hours we did get a good report from the neurologist - Miles has a healthy and organized looking EEG with just borderline slowing and no signs of deterioration that normally occur with untreated seizures.

My superhero mother-in-law jumped in the car and drove from Spokane to Bainbridge thirty minutes after I let her know we had to go to the ER. My other son was reportedly ecstatic to have her with him so all is well on the home front and since he was still awake at 9:30 last night  after having too much fun with grandma I'd say he doesn't even miss me! We are grateful for family.

Well Miles, never a dull moment; way to really poop all over our last remaining rays of vacation glow (we got back from a San Diego/Disney trip on Thursday). Good thing you are such a charmer and kind of a super stud with all those scars, skin markings, wires and beanie. Haven't you heard? Wires are all the rage these days.

Disneyland May 2017

It seems excessive and expensive and altogether completely irrational to go on a Disney vacation every few months... but when your babies are growing up so fast and the phases and obsessions change with the winds and their eager enthusiasm is unbridled for only so long I just can't stay away, I love it! So tossing rationale to the wind we went to Disneyland again. It was terribly crowded, even in the middle of the week in the middle of May but still wonderfully magical.

At just over 40" Kai was able to ride the big rides this time! Aside from Big Thunder, they were probably a bit too scary for him (the videos show him in an absolute state of fear) but they left lasting impressions on him and he continually reminds us that his favorite ride was Splash Mountain. We do regret focusing so much on Kai and the big kid rides while just having Miles crawl around in waiting areas - but then again maybe that was all he wanted (although he did seem to LOVE every ride and especially Small World).

Kai remembered Disneyland and was very adamant about which attractions he wanted to ride so obeying his command we raced to Casey Jr which was a favorite in November, but he was somewhat nonplussed this time around. Those five months did age him quite a bit!

An Interview with Miles Ray

For this special edition of the Home Dipo blog, in honor of Miles' first birthday we interviewed our little superhero so we could all get to know him better outside of his medical history. Enjoy!

Q: What are your greatest fears?
A: You know I'm glad you asked me that, you would think with a history like mine I'd say nurses, needles, lab coats etc.  but they've got NOTHING on me. The ceiling lights in our house though... something is NOT right with them, you put me near those things and I have to admit I totally lose my cool and even if I'm not near them I always keep one eye on them because you never can trust a ceiling light. Also Roomba. What is that thing? They put a perfectly glowing button right at my level gently pulsing calling you to push it and when you do it tries to EAT YOU. Finally, dare I forget the blender? Just don't get me started. 

Q: What brings you the most happiness?
A: Chipson Chipson Chipson - No matter how many fistfuls of fur I get or sloppy kisses or full-bodied snuggles it is never enough. 

Q: Tell us about your relationship with your older brother.
A: Oh I think it's great! Wherever he goes I follow, whatever he plays with I play with, he is so generous always finding new toys just so I can take them out of his hands. We do have to work on his nomenclature I believe he thinks my name is Nomiles. 

Q: What are your favorite hobbies?
A: One word: Diversity. Change it up: I need to go places, see new people, do new things, find new toys, and wherever there are doors I will open them. And then close them. And open them again. 

Q:What are your goals in life?
A: Oh that's an easy one absorb Chipson through my skin the same way I am learning to absorb food through my skin. I'd also like to keep up with Kai but every time I go to run I fall over... Mom says I need to learn to stand first but that seems like a waste of time. 

Q:What is your workout routine like?
A: Well unlike most other crawling types I really like to put my weight into my crawl. You should hear me go - I slap the ground with hands and knees like I'm playing the bongos and I take pride in the thick callouses I've formed. 

Q: How do you feel about the current administration?
A: Oh I'm not going to take that bait, but I will tell you one thing - unlike my mother I believe in the freedom of speech at all places, and in all times, and in all decibels. I also STRONGLY believe in the protection of unreasonable search and seizures. Mom, Kai, if I find it, I keep it, I eat it. 

Q: What do you want for your birthday?
A: So the present time is pretty good right now but I gather from Mom, Dad, and doctors that the future might be a bit rocky. Donate to my team for our fundraiser walk by going here; I want to win all the swag and help the researchers find a cure for this beast. It's a win-win.  

Q: What message would you like to leave us with? 
A: There are some people that call me a hero. I'm not a hero. I'm just a baby with a broken heart and a broken gene sequence living every day like every other baby out there but with WAY cooler scars, some unusual white birthmarks and insides quite a bit different. The true heroes are the doctors, researchers and therapists that have performed miracles on me and are actively working to make my future better; the friends and family that support and love me for just the way I am; and the people who are working hard to make a change in the world so that anybody regardless of health, intellect, and appearance can find love, inclusion and fulfillment in their everyday lives. Oh and stay far away from ceiling lights.