Welcome to Holland

Saw this and loved it! Especially because my dad really was from Holland.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Mito

We saw Dr. M today... Just as I suspected all her blood work indicates mito (mitochondrial disease). Her liver enzymes are still elevated too, which is not a surprise. The only way to confirm this is another liver biopsy which we have scheduled right after the holidays. Poor punkin this will be her 3 rd time put to sleep in 4 months. The good news is her muscle strength seems normal so no muscle biopsy will be needed! Also that gives me hope this disease is contained to her liver. This appointment her liver wasn't enlarged but it was hard and Areli has been scratching herself which means her liver isn't working too well.

If the biopsy comes back positive, which we suspect, we will see Dr. V a mito specialist at Children's who already has been consulted to about Areli. It seems like all the doctors have been meeting about her because she is such a puzzle. You don't want to be that patient who gets VIP treatment, yet if you have something wrong its nice to have the VIP.

There are hundreds of mito diseases so it will be Dr. V's job to figure out exactly which one and then we will know if we will need to test Leilani, Areli's older sister. (Who has been healthy so far her whole life). Just to be safe.

SO BRING ON THE BIOPSY!! We're gonna get through this together!

Update

So, as you all know we were expecting some test results before Thanksgiving, well that didn't happen. I did get a call this past Wednesday from our nurse to let me know that two tests were back, but there was one more my doctor was waiting on before she calls me. The two tests came back abnormal, one of which was elevated lactic acid. This is the first time any test (besides the liver enzymes)  has come abnormal so I think we are on the path of figuring this out. We just have to wait for Dr. M to call in hopefully one more week. At the moment I feel anxious to get an official diagnosis and start to move forward with early intervention, but completely and utterly heartbroken that it might be a mitochondrial disease. I guess I'll hold it together until it is official right?....Anyways, here's some adorable pictures of my littles; they always make me smile.