First Birthday Celebration: Team Miles for Miles

On June 24th, 2016 Seattle Children's hospital at long last discharged us. I remember the day was blindingly bright and after being inside the hospital for so long with sleepless nights, poor nutrition and frequent tears my eyes physically hurt as they attempted to adjust to the sunshine. It echoed perfectly how we felt as we tried to look toward the future: overexposed, indistinct and painful; our joy at being released somewhat washed out.

Exactly one year later 60 people joined Miles' team at the Tuberous Sclerosis Alliance's Step Forward to Cure TSC 5k celebrating Miles' incredible year and unifying in a heartfelt and powerful show of support for our family on the journey ahead of us. As it was the year before, the day was cloudless but yet on this day the water reflected Seattle's famously blue skies in a shimmering deep azure, the grass and leaves showed off summery shades of greens and yellows and the bright red superhero capes of those walking on Team Miles for Miles fluttered in the breeze everywhere you looked. The day was clear and beautiful and our hearts were overflowing.

Team Miles for Miles raised $16,470 for the Tuberous Sclerosis Alliance. Friends and family from all over came to our sides and proudly donned their Team Miles for Miles superhero cape. We felt lifted up and empowered by the many of you who donated, walked with us and loved on our little miracle boy. It was an incredibly meaningful and memorable way to celebrate his first birthday and especially how miraculously well he is doing. (See here for a medical update.)

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Special thanks to Christina Servin Photographs for coming to our walk and making our lovely memories stand still. The whole set of pictures, along with some from the TS Alliance photographer can be found here. Also, thanks to Sara Wilson who designed our Miles 4 Miles logo along with creative input from George Bock Jr. We actually had in mind to use a different logo that blended well their ideas, but the silkscreen company we used refused to print them as they thought it was too close to Superman's logo... all I can say is clearly they have never seen Captain America.

My only regret is that we didn't capture a group photo until over half our team had left! But the memory will always be vibrant of our sea of red-caped friends parading through the fields ready to battle alongside our superhero, Miles. 

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Miracle Miles has earned his name.

About a week into Miles' short life the neurologists at Seattle Children's did an EEG to see if he was already having seizures. What they saw indicated he would start having infantile spasms within a couple months - they said it would be a miracle if he didn't. You know the story, we researched, we studied, we advocated and finally we got Miles started on Vigabatrin preemptively in a sort of Hail Mary pass. The cutting edge study we were referencing is only starting to go to clinical trials now and in it over half the kids that started taking vigabatrin as soon as their EEG started spiking still had seizures within their first year of life. Furthermore, statistically, 2/3 of patients with TSC develop seizures in their first year, and nearly 100% of patients that show spiking on their EEG develop seizures within a couple months if the spikes go untreated. So we were fully expecting them to start and anxiously on guard. However, we knew if we could make it a year without any type of seizure, he had a much greater chance of having a positive developmental outcome and possibly being able to one day live an independent life.

A few months back our neurologist felt Miles was likely having SMA seizures based on a description I provided of a movement he was doing and our hearts dropped because we felt that we had missed a seizure type and had lost our statistical advantage. We increased his meds and they seemed to go away. Then the week after we got back from our San Diego and Disneyland trip we weaned Miles to whole milk since he had just turned one year and suddenly those movements were back in full force along with other movements frighteningly similar to infantile spasms. After three days in the hospital, the doctors were basically wringing their hands worrying about Miles but at a loss as to what was causing the movements. The team decided it was most likely severe reflux manifesting itself as Sandifers Syndrome and not neurological in origin but seemed pretty unsure and we were extremely nervous heading home with a maximum dosage of Omperazole. Of course no pharmacy on the island had the medication Miles needed so it took three or four days after we got home before we could start him on the medication and during that time I nearly booked us a trip to Cincinnati Childrens Hospital which is apparently the top children's hospital for TSC for a second frantic opinion. I was beside myself with anxiety. Then ONE day after starting Miles on his reflux medication, ALL of the movements disappeared. We tried weaning him about three weeks later and the movements immediately returned but as soon as he was back on his full dose they were gone again.

Surpassing every expectation Miracle Miles has not had any seizures. I cannot begin to tell you of the burden I feel lifted knowing all those strange movements we had seen over the course of his life are attributed to reflux. The odds are in our favor now and though there are stories of kids who have poor outcomes even after starting seizures later in their life, those are few and far between. Plus, as icing on the cake, controlling Miles' reflux has made him such a happier baby and his babbling has really taken off. It seems he says "Hi, Mama, Dada, dog, vroom vroom, woo hoo, again, yea" and "All done." He is cruising along furniture, can stand for 10+ seconds on his own and can climb as well as a three-year old. He is globally a little delayed, and he won't point or consistently say his words, but he gets his point across, and he is so very social. We are overjoyed with how well he is doing.

Our next round of specialists starts back up in September so I'm sure they will be stoked to poop all over my optimism but for now I'm feeling pretty giddy about our month away from the hospital, the incredible summers on Bainbridge Island, and our Miracle Miles.

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With all the hospital stays, doctor visits and therapy I spend a lot of one on one time with Miles and Kai gets left behind. Plus, before we got his reflux under control, he was a horribly fussy baby so Kai wasn't even getting half my attention and both of us were putting up with a LOT of screaming. Needless to say, I felt like he and I both needed a break and some quality mommy and me time. So we flew down to visit my cousin and her kids in San Francisco and Miles stayed home with Grandma and Grandpa Dipo.

Our little escape was everything we hoped it would be. Kai was in heaven the whole time with all the new toys, adventures and uninterrupted mommy time and I loved exploring a new area, spending time with some of my extended family and endless Kai time. He is such a fun kid to be around.

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