Christmas 2016

I said it before and I'll say it again, the holidays are so much more fun with kids around. Kai really got into Christmas this year and we had a light snow in early December that helped catapult our holiday spirit. But, don't get me wrong, the holidays with kids can be exhausting too take a look:

But we had an amazing holiday most of the time:

Merry Christmas and here's to a MUCH better 2017 than 2016. 

When You Just Need an Excuse to Eat Bread and Butter

I threw my good friend a baby shower themed "bun in the oven" and we went to town with yummy homemade breads, fancy butters and a delectable array of cheeses. I didn't think I'd be able to commit to a party let alone host one only a couple months ago so I'd say this is a pretty big deal and one I'm very proud of. Here are some pictures of our lovely evening:

Phoenix November 2016

We have some family in Mesa and it had been 18 months and one new niece since our last trip out there, so we thought it was high time to go again. It is such a relaxing and fun place to be for families. Boy do they have amenities. The city parks are abundant and phenomenal. We went to one park that had model trains to look at and ride, and another park with ferris wheels and mini fair rides. I mean coming from Kitsap County where we think a park is good if it has a slide and a swing, this was jaw-dropping for us. But mostly, we LOVED spending some quality time with our family.

And of course, the highlight of our trip - our most adorable new family member.

Disneyland November 2016

We went to Disneyland at what we thought would be the lowest of the low season: the first few weekdays of November between Halloween and Christmas decorations. This was a perfect opportunity to see if it is worth manipulating schedules to go to Disneyland in the slow times. The verdict? Though the crowds were low, Disney is a world leader in the art of crowd control and they shut down tracks, remove extra cars, and have less staff during the super slow times and you end up with almost the same line times in the most popular rides (read 45-60 min waits for Peter Pan during Magic Morning on a weekday). They had very few esoteric characters out for short times and had no parades or fireworks. BUT, we got to ride Gadget's Go-Coaster over 15 times with no wait because we were riding at night, and we hopped on to most of the less popular rides with little to no wait at all - I guarantee you that during the busy times that wouldn't have been possible... so tradeoffs. We had hoped to hit cooler weather so Miles wouldn't be exposed to the high heats (it reportedly lowers the seizure threshold) but each day was OVER 100 degrees! That said, it was still fun, amazing and magical because, Disney!

My mom came with us and was so helpful and fun to have around. She was the original Disneyphile in the family and Disney is just not the same without her. Plus, Miles went to sleep one night at 5pm and slept 12 hours straight and my mom made the ultimate Disney sacrifice and stayed with him in the hotel so we could play with Kai in the parks.

Kai is a thrill seeker!! But at 38" he didn't make the cutoff for the roller coasters aside from Gadet's Go-Coaster, but he didn't know what he was missing so he was pretty much on Cloud 9 the entire time. He loved every ride so much but his favorites seemed to be Casey Jr and Gadget's Go-Coaster which he could have rode repeatedly. His reported favorite was the Alice in Wonderland ride, and he still talks a lot about the Nemo submarine and talking with Crush. 

  

First time on Casey Jr and his excitement could not be contained

Though we stayed onsite, we plowed through nap time our first day because both kids seemed to be doing pretty well.  To our surprise, Miles loved all the new sights and sounds and seemed to truly enjoy the rides. He napped well in the Ergo and overall seemed to enjoy the experience. Unfortunately, by the time it got to about 7 the kids both hit their walls and though Kai was still having fun, he was past exhausted. 

Those are TIRED eyes waiting for our last ride of the day

I was quite worried about waiting in the lines with a very active toddler and I packed a duffel bag full of activities and snacks, but turns out we never needed any of it and used only a handful of my endless arsenal of tricks. Right from the start Kai was happy to wait. We played a treasure hunting game where we would toss change into the area around us in the line and he thought he was finding gold every time and kept handing me the "treasure" to hold which we would then re-toss in areas he wasn't looking and it really never got old. I had a couple of his favorite Cars toys which entertained him most of the time and occasionally we looked back at pictures we had taken over the course of the day.  Though we didn't use them this time, the last time we went to Disney we did bubbles in the line with a Buzz Lightyear bubble gun that Disney sold and it was a big hit.

Our second day was a lot harder on Miles. We weren't sure if it was the increased heat or the fact that he could go one day without naps in the land of overstimulation but two was too many, or both, but he definitely hit his wall early in the morning. It was probably about 11 in the morning and already 104 out and Miles started doing the thing that makes me think infantile spasms. I tried to change his set up but the spastic spasm-like things continued and we ended up racing back to the hotel to put Miles down for an air conditioned nap. He and Kai both took long naps and when we headed back out over four hours later (oh the sacrifices we make for our children), Miles was less than happy to be back in the park, and lasted only another hour before he went back down for the night. I think about that day often and wonder if we saw seizures there or if he was just extremely overstimulated and we will never know. It was a scary dose of reality, and I do worry about future trips to Disney or anywhere really... but it's the new normal! Our plan is to avoid the heat, try to take it a little slower, keep packing the Diastat (rescue seizure medication) and wish upon a lot of stars. 

3

Nephrology, Cardiology, Neurology, Oh My.

It's the smell of the hospital that hit me first.

Perhaps it's the omnipresent hand sanitizer, or the perpetual use of cleaning products, or maybe it's truly just the recycled air stale with sickness and bleached with sanitation, but whatever it is after a wonderful couple of months away from Seattle Children's Hospital walking back in to that wall of smell hit me harder than if I had literally walked into a brick wall. My heart rate skyrocketed, my vision blurred with tears then white washed as the blood drained from my head, and it was suddenly hard to breathe. I did not want to breathe in that air. I couldn't.

And this was just a check up.

Today we went back to Seattle Children's Hospital to re-check Miles' kidneys. You likely recall, at birth they said his kidneys were teeming with cysts and diagnosed him with polycystic kidney disease. However, a couple months ago at Swedish (where we have been having most of our care these days), the nephrologists and radiologists were only able to find one cyst and we all thought we had seen a miracle. Unfortunately, today our miracle was proven false and our faith in doctors rocked. The radiologists at Children's found just as many cysts as they did last time and couldn't explain why Swedish would have seen something different. They kept pointing out that they are the leading Children's Hospital in the country for nephrology and that Swedish likely doesn't have the technology or experience to deal with infants... and they may be right, but seriously to go from innumerable cysts to one? We are frustrated, confused and disappointed... the dangers of optimism, I guess.

On a more positive note, last week we saw the cardiologist and got some pretty good news. Though Miles' heart isn't improving and that valve is still completely failed it turns out he actually may not need his second open heart surgery until he is five or six or possibly even later. The doctor said we should be prepared for him to need it when he's two but that most of their patients with this procedure actually go much longer until that second surgery is needed. This is the first time we heard this news and it was very welcome. Taking a toddler in for open heart surgery that can't be reasoned with sounds like an absolute nightmare.  Furthermore Miles is growing astonishingly well. At 15 pounds and 26.5 inches at 5 months old he is now in the 25% for weight and over the 75% for height! Over the course of this last month, he was growing at a rate nearly double the average baby.

Last week we also saw the neurologist and we got some more good news there. Unless Miles is doing things we aren't catching, it looks like he still isn't having seizures. The longer Miles can go before his first seizure, statistically the better his chances are for a good developmental outcome. We are told time and time again to expect the seizures that they will start some day, but we are just hoping and praying for as much time seizure free as possible. Additionally, 50% of people with Tuberous Sclerosis are on the autism spectrum, but Miles isn't showing any signs of being on the spectrum; on the contrary he is extremely social. Until this appointment, I hadn't thought much of his excellent social skills because I know autism is often a degenerative disorder that hits a typical developing child in their toddler years. However, apparently, the type of autism associated with tuberous sclerosis is mostly linked with early onset autism that should be identifiable within the child's first year. So that gives us a lot of hope. Our research led us to believe the worst outcomes for TS kids were closely tied with infantile spasms and severe autism so we are feeling great about that.

If the opening of my post didn't clue you in, I have been struggling with anxiety. Though this was the first time the hospital smell triggered a panic attack, I have found that too many doctors appointments back to back and basically any weird repetitive seizure-like movements from Miles triggers them as well. This is a new thing for me and I'm working hard to find natural nursing-friendly ways to combat the anxiety which include sleeping as much as possible, abstaining from caffeine (chocolate doesn't count), avoiding internet research and support groups, and a whole lot of self talk. I've had a number of really positive doctor appointments which have educated me on seizure types and dangers and I'm under the impression I can put my guard down a bit, but wow is that hard to do.

Meanwhile Miles is growing up. Cognitively he is developing perfectly and he is getting frustrated that his body is lagging. He is behind in his motor skills and has significant torticollis with his head leaning to the right all the time, BUT, he really wants to learn to sit up and is desperate to start eating real food (I mean desperate. The kid won't let you eat anything without trying with all his might to grab it and put it in his mouth.). I finally gave in much to my chagrin (can't he stay a baby forever??) and we started with carrots yesterday and it makes Miles ecstatic. He opens his mouth wide, grabs at the spoon and flaps his little arms and legs with all the joy you can imagine. And you know what? I'm flapping along right with him. People said it would happen and they were right; though his trials run deep, his milestones are truly that much sweeter and something as bland as carrots tastes like chocolate.

Halloween 2016

You can say a lot about the challenges of having kids and they are all true, rarely exaggerated, and completely worth the five million buzz feed articles about it; but there is one thing that is truly 36.5 times better with kids, and it is holidays. Holidays are so much more fun when you have littles around and I can't tell you how happy we are to have the summer behind us and move on into the magic of the holidays.

Here are some pictures from the Halloween season.

 Pumpkin patch fun finding the perfect pumpkin and getting lost in the hay maze. 

We had a little party...

Grandma and Grandpa Jeff dressed up perfectly to complement our group costume.

Miles was the cutest addition to the Toy Story crew making one very adorable LGM... Kai still wishes he would go back to outer space... or Pizza Planet...

The best part of this Halloween is we got to spend a lot of time with Grandma. Update on Miracle Miles coming soon after our big nephrology appointment tomorrow.

Miracle Miles

For those that know me (and maybe you could guess even if you don't) you know that I'm a bit of a Disney addict. It's my mom's fault really. My first ten years of my life were basically spent at Disneyland - she would regularly pull us out of school for "mental health days" and our mental health would be appropriately restored at The Mouse's House. I don't think I ever watched TV but I breathed Disney movies. When I was thirteen my dad asked me what my favorite radio station was and when I told him "Radio Disney" he guffawed and said "No you must listen to real music - " but he was cut short because my mom gently gave him the classic wife lays hand on husband's leg which translates to stop now or you will perish. The act did not go unnoticed and I remember that moment clearly, because it's when I suddenly realized I had no life. (In case you are curious, I became a jazz lover... but mostly because the jazz stations often play incredible arrangements of Disney songs; but when they are jazzified you can feel grown up about listening to them.)

As an adult I get to relive the Disney magic all over again as I indoctrinate my children. (I'm joking, indoctrinate... such a strong word... I'd never... such a jokester.) Though there are a few questionable motifs that I grimace at now (hello racism, sexism, ableism) that were unfortunately reflective of the times, probably the number one theme running throughout the Disney platform is to believe. Believe in yourself, believe in the magic, believe that good triumphs over evil, believe in the happily ever after. So call it a coincidence, Pixie Dust or the Fairy Godmother, but I think Walt's eyes are twinkling, because after our previous resolution to believe in miracles we added a few magic feathers to Miracle Miles' hat. 

When Miles was at Seattle Children's Hospital he had a few ultrasounds done on his kidneys. The results were disheartening as the technicians said both his kidneys were littered with innumerable cysts indicating he had Polycystic Kidney Disease. Though his kidneys were functioning normally despite their heavy tumor burden, we were all nervous about kidney failure during his recovery from heart surgery and monitored his kidneys closely. The cysts could stay the same, or they could grow and multiply. We were told that he would most likely start having kidney problems in early childhood and then would need a kidney transplant, but as with everything with TSC just wait and watch for the problems to start. Fast forward two months and we went to see the nephrologist our TSC expert doc recommended at Swedish. As the ultrasound technician worked on Miles I started getting that jittery feeling, fearing the worst as she was simply taking too long. Finally she remarked, "I can't find any cysts"... wait what? They sent in the head ultrasound tech who came in and looked for herself and found only one 2-mm cyst if she looked really hard. Again I didn't believe it, I had seen the other ultrasounds showing horribly unhealthy kidneys. When the nephrologist came to talk with us she was flabbergasted. She agreed that there was only one cyst but couldn't accept that they had just disappeared as that never happens. After discussing with Seattle Children's, the radiologists and the other nephrologists they decided that it was possible that different ultrasound technologies between Seattle Childrens and Swedish could account for missing some of the cysts, but quite frankly we had seen some sort of miracle as most of the cysts must have disappeared. We have a follow up ultrasound in two months with Seattle Children's to determine exactly the degree of our miracle and look forward to reporting back with hopefully a very miraculous bill of health. 

Now the brain. You've probably noticed we've spent a few nights at the hospital lately doing EEG's. You may be wondering if we are psychotically paranoid parents and I can assure you the answer is yes. This is the disease of paranoia because in the world of seizures anything just a little off can be a seizure and seizures untreated are extremely detrimental to a child's health and development. Infantile spasms are NOT to be messed with. Identifying and treating them should be deemed an emergency (and is for any well-informed hospital) and TSC is one of the leading genetic causes for infantile spasms. The problem with infantile spasms, however, is they are often extremely subtle moro-reflex like movements and most doctors would write them off as reflux or startling until they have become full blown spasms usually many days or weeks later.  We have been trained over and over on how to identify infantile spasms and we are treating Miles preemptively with vigabatrin since he was at such high risk but we are told to still keep on alert and video tape anything he does that's suspect. We send in the video, the neurologists review and they let us know what to do. 

Unfortunately, Miles does weird things. A few weeks ago the video we sent landed us in the emergency room. At the time the EEG showed no seizures but still major warning signs for future seizures. This was the video we sent the doctors earlier this week that brought us back in for another VEEG.  Oddly, it's the little small spasms at the beginning of the video that look most like an infantile spasm, but the big one at the end is the one that makes you really nervous that something neurological is happening here. In case the video isn't loading on your page - you can also check it out here. 

(And in case there are any other Disney addicts out there, yes that is music from Tangled playing in the background.)

After another long 30 hours (this time dad stayed the night, my passive aggressive photo comment on one of the last blogs totally paid off) we heard another miracle. Miles has a normal EEG. He isn't having seizures, and his brain doesn't show any brain damage any more. We don't know if we can attribute this to the vigabatrin, faith, or something even bigger, but for whatever the reason his brain is processing normally. We are increasing his vigabatrin dosage just to keep in line with his growth and will keep him on it until he is at least two years old. We still need to be vigilant watching for seizures and will do regular EEG's but we have definitely seen another miracle and I think we can relax a bit. As for that video - well it signed us up for an appointment to see a pediatric gastroenterologist because yowser that's quite the reflux reaction and these kids can grow tumors in the weirdest places. 

I can't believe how difficult it's been for me to accept these miracles. I keep trying to discount them one way or other and I think it would be absurd for me to wish away his brain tumors because that is simply not possible, but it would have been equally as absurd to wish away his kidney cysts, and yet... 

"If your heart is in your dream, no request is too extreme.

 When you wish upon a star as dreamers do, fate is kind."

TSC Warrior

When I was in grade school and learned about war I had a failsafe plan in place in the event I was ever sent to battle: play dead. I was absolutely flummoxed why more soldiers didn't just lie down on the battlefield, hold still and wait out the storm. Though it seemed noble to be brave, who wanted to be noble and dead? Yup. I had a plan. I was going to master that war thing when one day I was unwillingly forced into the draft. I was going to play dead.

Life moved on. That ever-pending fear of being called to war drifted away with adolescence and one day I was basically too old for the draft. I was safe.

At our doctors urging, when we first learned about TSC we signed up for the Tuberous Sclerosis Alliance. We were put off instantly with their two catch phrases: "Give everything but up" and "TSC Warrior." What sort of kick me while I'm down slogans are those anyway? I didn't want to give everything but up. I didn't want a warrior for a baby. I didn't want to go to war. I said no thanks, turned away, and for the last three months I did just what I figured I always would: I played dead. I expected the worse, I prepared for defeat and decided I just had to hide and do the best I could to survive. I really really wanted to play dead.

But this isn't just my war. When Miles looks up at me with those deep trusting eyes and a full-body smile so radiant it topples him off balance, I am reminded that he also got drafted into this war. If I play dead, who will fight for him? If I play dead, will we live each day in fear, running and hiding? If I constantly bemoan the ugliness of war who will teach him that even in war life is beautiful?

Miles, I will fight for you. I promise to bring joy to this battle. I will teach you that the deepest relationships are forged in the deepest trenches. I will show you that even after our most tumultous days, the stars come out and in their gentle, languid permanence they are magical. We will meet exceptional people, some in battle themselves, others only there to help, heal or protect, and they too will fight for you.  There will be pain, there will be terrible days, but I promise to point out every glimpse of the veracious and steady ocean shimmering through the smoke.  Our legs will grow weary with marching but our knees will grow stronger with praying. We will tell captivating stories and become the best listeners.  You and me kid, we will see the world in a way world travelers never will.

I am hoping and praying we get stationed in Tahiti, shoot I'd even settle for Disneyland Paris, but wherever we end up, no matter the battles we face I won't stop fighting for a transfer, a better life, or even just a laughing moment. I promise to focus on the things you can do, and never give up on tomorrow. I will wish upon every star and believe in every miracle. Turns out I will give everything but up to ensure you are living not just staying alive. Miles, I will never leave you on your own, we've been sent off to war, but I will fight for us.

(Click here for more pictures from our recent family photo shoot)