Team Miles for Miles

Our superhero Miles is looking to build his team of sidekicks and backup fighters. Will you be one and fight this battle with us?

A year ago we shared the news of the tumor in our baby’s heart. Since then you have asked us what you could do to help, and we helplessly wondered the same thing. Through meals, kind words, hospital visits, prayers, fasting and cards we've felt supported and never doubted that if we ever found an answer to that question you would be there for us. 

Well, we finally figured out what we can do, and we need your help. The Tuberous Sclerosis Alliance will be holding their Step Forward to Cure Tuberous Sclerosis 5K in Seattle on June 24. This just happens to be the day that Miles got out of the hospital exactly one year before. When we think of how we want to celebrate his first year of life, there is nothing that would mean more to us than walking side by side with Miles’ incredible team of backup fighters as we step forward symbolically and literally on this new path together.

If we're ever going to go big for Miles, now is the time. The Tuberous Sclerosis Alliance believes it is on the brink of some major discoveries and Miles is at the most critical time of his development. Every dollar that can bring these discoveries sooner to our child is going to help tremendously in his fight for the life we thought forever stolen from him and the 730 children born each year around the world with this terrible disease.

Please help by walking with us at 9am in Magnuson Park, Seattle. We can honestly think of nothing more powerful than feeling your strong presence close at our sides as we walk to support Miles as he is but also fight with Miles to find a cure. In addition to walking with us, or if you can't be there, please help us as we make a huge push to fundraise for the Tuberous Sclerosis Alliance. Last year this walk earned only $12,782 and we want to see this year’s walk blow that number out of the park, but we need you. Just as you would for any charity walk or run, you can join our team as a participant and then seek out sponsors; or you can just encourage others to donate directly to Team Miles for Miles.  

Our little superhero wants just a few things for his birthday: better health, a better future, a better fighting chance, and the hope that one day no child will have to endure this battle. That’s one heck of a birthday wish.

Walk Details:

The Step Forward to Cure Tuberous Sclerosis 5K will be held at Magnuson Park in Seattle on June 24, 2017 at 9am. We will be on the 7:55 ferry. Bring your kids and dogs if they can handle other dogs and people of differing abilities. Though you are welcome to run, there will not be official timekeepers. I will happily create you a medal saying it was a record-breaking time if that gets you there with us!

Here is the Seattle Step Forward To Cure TSC home page: http://giving.tsalliance.org/site/TR?fr_id=1455&pg=entry

Here is Miles' Team Page: http://giving.tsalliance.org/goto/miles4miles 


Here is a wonderful summary our photographer friend wrote about Miles that may help in your fundraising efforts: http://www.cservinphotographs.com/blog/2016/11/26/baby-miles

PS I found the TS Walk website a little difficult to navigate and rather frustrating. I would be happy and honored to help you with the sign up and donating process. I also recommend calling the alliance contacts on the Walk's contact page as they are incredibly helpful and quick to respond on the phone. 

Let's Talk About Seizures and Statistics

It has been a few months of astounding growth at the Home Dipo.

Drumroll please...

...Miles is crawling! Within the last couple weeks, he also learned how to bring himself to sit from any position and is even pulling himself onto his knees to get a better look. He is not a very proficient crawler yet, but he gets where he wants to go (usually wherever Kai is). Kai loves having such a doting brother, he just doesn't know it yet. Oh and in even happier news, Miles started babbling. He says mama, dada and hi... often appropriately, but probably coincidentally. Unfortunately, Miles has been sick the last few months with a relentless runny nose, ear infections and rattly cough. He has been extremely cranky (I'm talking he cries like 2-3 hours of the day each day) and absolutely hates nursing. Everyone says, he must just be teething, or of course he's cranky his ears hurt. Whatever the reason, it is exhausting, and we pray every day that it really is just illness bothering him and not something more... permanent.

At Miles' last 24-hr EEG we got mixed news. At the time, we learned that it appeared he still wasn't having seizures but that his background wave length (I gather code for brain activity) was significantly less than what they want to see for a baby his age. The neurologist didn't seem thrilled with this finding but hemmed and hawed as doctors tend to do that we couldn't necessarily predict anything from this, it was more just showing us that his brain is developing delayed. Let me tell you, I researched this thoroughly and talked with many other doctors to understand what this meant and I believe we are in extremely unknown territory. I've tried to convince myself that the readings were just poor because it was another terrible and painful EEG and Miles basically didn't sleep more than an hour at a time even at night so his brain wasn't showing off (I mean I'd show delayed brain activity if I was kept from sleeping) but the truth is we don't know. We don't know why it's that way or what it means but it is what it is. Miles doesn't seem delayed. I'd have to think if you knew nothing of his background you'd think he was a little uncoordinated, spastic, and extremely curious but you wouldn't think anything of it. He is behind in his fine motor skills, but we'll get there.

Seizures and Statistics:
I've had a few people comment to me that seizures aren't a big deal for one reason or other and I should stop putting so much weight on him not having seizures yet. While I agree that often epilepsy is relatively common and many people lead very normal lives with it, research shows that for children with Tuberous Sclerosis Complex, having seizures within the first year of life statistically shows a greater correlation to intractable seizures (meaning can't be treated with medicines) and severe intellectual disabilities. Of course, that doesn't mean if we get to a year we're in the clear, we'll just feel like for once we will have a statistic working for us.

It's hard to look up TSC. It's difficult to see the faces covered in angry red tumors and read the stories of adult children seizing day in and day out. If I see one video of a baby having seizures, for weeks I have anxiety thinking Miles is having seizures I'm just missing. I have to constantly remind myself that the internet is full of the worst case scenarios, and do my best to focus on statistics, new research, and the stories of hope. So to help keep you from having to wade through the rough territory, here are some interesting statistics.

Accordingly, for people with TSC,

• 80-90% will have seizures (of those, 66% develop intractable epilepsy)
• 60-80% will have intellectual disabilities 
• 50-60% will meet the Autism Spectrum Disorder criteria 
• 40% will need lifetime in-home care
• 90% develop neuropsychiatric disorders  

The statistics vary widely because researchers try to account for undiagnosed populations - so for example, 80% of diagnosed TSC patients show some level of intellectual disability, but researchers think that number is more likely to be around 60% if you were to account for all the people that are never diagnosed. We often remind ourselves that had it not been for that one giant tumor next to his aortic valve Miles would have been undiagnosed as the other 7 tumors in his heart never even showed up on the fetal echocardiograms and we would not have had a reason to scan his brain and his kidneys. Plus, there have been huge strides in medicines the last few years that will likely have a major impact on the outcome of these kids that is not reflected in the statistics. We have a lot of hope - rational and cautious hope - but still hope.

The best thing we can do right now is just embrace this smooth time in little Miles' life and relish the present... I'd relish the present a little bit more if that included consistently good nights of sleep and a lot less crying, but we're close on those points as well. So look at the now, look how cute he is!

(And yes, for those concerned mamas out there, that's a breathable bumper.)