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."