1,051,200 Minutes

It's 2 years, in case you were wondering. More importantly, it's the amount of time that it took a team of the best pediatric specialists in the world to finally name what happened to my daughter. I decided to create this post, because I think most people are pretty unaware of what a long process obtaining a diagnosis can be. Especially when things can't be clearly tested for with a blood test, can't be clearly seen through facial of bodily features, things that can have varying degrees of severity, present differently due to comorbid conditions...etc. People don't realize how messy this can be. They don't know how many times I've cried myself to sleep after being told my daughter probably has X,Y, Z....which is horrible, but then ended up not having. It's emotional. And if you don't follow up and stay on top of it, no one is going to chase you down. They'd be content forever to say "Lola has muscle weakness, Lola has seizures."

People ask for updates and it's hard to remember who we updated on what. So I get a lot of "I thought you said it was this...." Well you know in January we were told that it was that. So let me catch you up to speed. And people look at you like, "How is it you didn't know....?" Well that is the reality of the diagnostics game. It's ever changing, that is until it isn't.

So let me share with you all the possibilities that were thrown on the table: Intrauterine Stroke vs Stroke at 4 months of age. Cerebral Palsy. Paroxysmal Dyskinesia. Dystonia. ITA Disorder (mini stroke), Epilepsy, Chiari 2 Malformation with Motor Planning Dysfunction, Internal Tibial Torsion with Spastic Reflex, Genetic Disorders....A,B,C,D.E and Pediatric ALS (arguably the scariest thing I've ever heard). And each one of those doctors believed what they were saying.

So believe me when I tell you that these 1,051,200 minutes of Lola's life have been exhausting...emotional...defeating...maddening...and more. When everyone who is the best at what they do, from the best children's hospital in the world, all disagree....what do you do? And every time we thought we were sure, we'd update our friends and family only to be told...."No, it's this."

Diagnostics is a puzzle I never appreciated until I participated in it firsthand. It's not one or two or three doctors weighing in. It's one doctor who weighs in, followed by another doctor, then the two of them get together and refer to another specialist once they've come to an additional question. You go to that specialist who weighs in, then gets together with the first 2. Then the three of them, generate findings and additional questions and call in the 4th and so on until you have 3 Neurologists, an Orthopedist, A Muscular Disorder Specialist, Epilepsy Specialist, Cerebral Palsy Specialist, Geneticist....all working on the same team. And they don't just say...hey it looks like X, Y, Z....no they painstakingly rule out all those "could be's" from the list above.

In these 1,051,200 minutes, I've recounted Lola's entire history more times that I can count. I've taken more pictures and videos as evidence, taken my daughter to more appointments and tests and procedures and repeated them. It's like a shampoo bottle, "Wash and repeat." And Lola, my fierce girl, has dealt with it in a manner that truly fits all the nicknames we have for her; Wonder Woman, Beast, Fiery Pants Cole.

And all those minutes lead you to what you hope is your final stop on the diagnostic express, an answer. So know that when you ask me about Lola and what she has, what happened to her and I say, "Lola has Mild to Moderate Hemiplegic Cerebral Palsy with Secondary Epilepsy due to an acute left ventricular intrauterine hemorrhage." That a lot went into that answer. And yes in layman's terms it means that Lola had a stroke while she was still developing in the womb, the static brain injury resulted in cerebral palsy which in Lola's case also includes seizures. And if we spoke 6 months ago and said "they are worried it's ALS or Paroxysmal Dyskinesia (Both just super scary options." That I wasn't confused. I just didn't have all the puzzle pieces in place yet. That two years of testing and data collection, two years of seizures, mini strokes, occupational therapy, physical therapy, leg brace fittings, MRIs, EEGs, blood tests and so went into this puzzle. Two years of combing through prenatal records, birth records and pictures...all had to fall into their own spaces.

And honestly, for the first time in two years, I'm comfortable with the answer. It finally feels true. Yes this happened to her. And this is what is left as a result. Now that I'm at the diagnostic finish line, I have so many other things I want to say and resolve....like how I was treated while I was pregnant with Lola....about her first few days of life when we were told "babies feet often curl in because how they sit in the womb." How instinct and maternal knowing was brushed off time and time again, until the evidence was glaring. The apology I would like to hear from the person who might very well be responsible for what happened to by child. The one I'll never hear. But those are separate posts. And while I'm 100% certain that Lola deserves that apology, I saw at least 20 children, more impaired than Lola, that need to hear it more than she does.

I don't have a nice wrap up for this post. I'm listening to Lola snoring in her room and realizing I've let her nap too long, so....the realization that sleep is going to be rough tonight is setting in. But maybe I do have a wrap up, because just now...typing that very mundane normal thing, it hit me that Lola's life is way more typical than atypical. Like any other two year old on the planet who has napped until 7 at night, she will be up terrorizing us well past an acceptable hour. Good for her really. I hope she has blast doing it.