Blog Hop

Kelly's Korner is doing a blog hop about special needs families, which is really nice to see. I'd like to support by participating...it always means something to me when I see another family that is going through something similar, since our particular path has been so rare.

I'm going to use the post from my Sugar Bee Designs website, where I explained how everything happened. I know most of my readers already know the story, but maybe it will give some hope to someone out there....

My husband and I learned that we were pregnant with a baby girl in 2007. We were thrilled beyond words! I had a ton of fun preparing for our new addition, and then in January of 2008 we were blessed with sweet baby Avery. The surgical delivery went well, but within an hour of her birth I was surrounded by a number of doctors with very serious faces.

They were concerned because it appeared that our precious newborn daughter was having small but frequent seizures while under observation in the nursery. My husband and I were absolutely shocked and terrified. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. We tried to think happy, healing thoughts as I recovered from surgery and we waited to hear a diagnosis. We were nervous to say the least, but nothing could ever have prepared us for happened next.

The doctors explained to us that Avery had been born with a rare genetic condition. She was missing the proteins that regulate cell growth, that act as tumor growth suppressors. This allowed benign tumors to grow willy nilly in her brain and heart. You know, only the most vital organs in her little body! She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.

So that's when Avery's brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that's when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.

This is the part where I have to pause. And breathe. Because more than two years after the fact, I can still feel the residual effects of this man's words pulsating through my mind and body. I can still close my eyes and remember the breath stealing sobs I cried as I said goodbye to my week old daughter and heartbrokenly handed her to the nurse that would take her to the operating room.

And you know what? This little girl did beautifully. Her strength amazed us. It still does! She was in and out of surgery three times in her first month of life.

Her daddy and I had to wait anxiously each time, (with an abundance of our family and friends :) praying that this was the right decision.

It was.

Our precious sugarbee came home to us after one month in the hospital. We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better-- i.e. giving the "normal" side of her brain time to take over tasks that the opposite side can't handle anymore...and we couldn't have done it any earlier! More on her surgery HERE.

Avery would actually need two more brain surgeries, at three months of age and at five months, before we saw our very last seizure to date. We count our blessings every single solitary day for the past two and half years that they have not returned. Those things are like monsters to me, and I can't even imagine how confusing they were for Avery. There was certainly little chance of a meaningful recovery if they had continued.

My heart aches constantly for those mothers currently searching for an end to infantile seizures and spasms. It is a black hole of constant meds, false hope, desperation and fear. No one deserves to be there. No one.

So it is always with a heavy heart that I explain Avery currently has freedom from seizures, but we have to remember it could be gone tomorrow...and in such instances as this, our little family has to focus on TODAY. Today, she is healthy. Today, she is growing like a weed. Today, Avery is working harder than you can ever imagine to accomplish her goals.

Just like any other parent, my husband and I want everything in the world for our cherished daughter, and we will do everything in our power to get it for her. That included leaving a job that I had no intention of leaving. I needed to be home every day with my daughter to get her better. In order to help Avery reach her highest potential, I've become her very own special needs advocate. The therapy appointments certainly don't schedule themselves! I mean, who else is going to sit on the phone for hours with the insurance company?! It's definitely been a continuing adjustment in our lives, and we have done it with the love and support of our friends and family.

We still struggle everyday to get Avery where she needs to be. That means a whole lot of therapy and a truckload of patience! It's still a roller coaster and probably will be for a very long time, but every day with her is a gift.

We are expecting a little sister for Avery in a couple months, and can't wait for her to have a new friend that will love and cherish her as much as we do.