Several people had to openly share that they thought that I was doing the wrong thing with my daughter.
They could see that I was researching like crazy. And had to tell me, Julie, it is "just" scoliosis! "Millions" of people have scoliosis, what makes your daughter's case any worse?
The fact that I AM HER MOTHER! And as a mother, I KNEW something wasn't right. It was TOO extreme for a little girl who just turned 8 years old.
She looked like the healthiest little girl ever. The X-Rays were showing something else.
To me, it looked like something was attacking Alexis from the "Inside" out!
And guess what......I was correct.
I knew there was something seriously wrong with Alexis. If I had just listened to these people that kept telling me that I was wrong, Alexis' brain would be compressing on her spine. And she would eventually be paralyzed.
I would have to shame on me, if I was to just sit back and listen to everyone else.
I followed my instinct, and got Alexis the help that she needed.
So, again, in January Alexis was diagnosed with Scoliosis. February, we met Shriner's for the first time, and they told us her X-rays was worse than the one's in January.
They told us we needed to get her checked for something worse, but didn't tell us.
After a few weeks, the MRI came back, and we were waiting for the Neuro Dr. to come back from vacation to tell us the results.
At this time, I had done my research and was about 90% sure she had Chiari Malformation of the brain and Syringomyelia.
People kept telling me that if it was urgent, they would have had Alexis see a different Dr.
BUT, they didn't know that there is only 2 Dr.'s that deal with this in our area. Also, we needed a "Ped's" Dr. and he was the one for this.
So, February 18th was MRI day, results sort of came back a week later, but he wouldn't tell us a whole lot of info.
Actually it was the secretary at Shriner's that told me that they had Alexis scheduled for the Neuro on March 8th.
I burst into tears. She said, I'm sorry, I thought you knew. I said, is it Chiari?
So, March 8th we met the Dr. He was appalled that Alexis was able to function with over HALF of her spinal cord filled with this cyst. It was fully filled. One of the largest he's seen in 14 years.
The only reason we had to wait for surgery was for the insurance to approve it.
They had Alexis in brain surgery within 6 days.
It was heart-wrenching seeing my baby girl suffering. I remember everything. Sitting and waiting, feeling sick to my stomach.
Then the Dr. coming out to tell me what happened. He first said, Alexis made it through ok.
And proceeded to tell me what they did. It was the longest 5 hours ever.
We walked back to the recovery. And the nurse was able to have Alexis move for us. She couldn't talk. But she slightly opened her eyes for a brief second.
I wanted to do this all for her but I couldn't. She was lying there so helpless. We all got to tell her we love her. Chris held her hand and then had to leave to go back to work.
Curt & I stayed with her.
She was settled in Ped's ICU for a couple days. Then off to the oncology unit.
I remember thinking, would I ever see my normal little girl again? The longest week ever.
She was in excruciating pain. The worst imaginable. My baby girl couldn't handle light, sounds, tv, anything.
She wasn't eating. She didn't eat for 12 days straight.
Finally after a week, she got to go home.
Another new chapter, we had Shriner's appt.'s set up. Fittings for her new brace.
After her surgery, Alexis' had a concussion not even a month after surgery.
At 8 weeks post surgery, Alexis came down with Scarlet Fever. YIKES this was terrible!!
I was at a breaking point here. She was as sick as she was in the ICU or WORSE.
But we were at home. And I was my little girls care giver.
It was scary. And I was doing my best to help her get better.
She was in and out of the hospital over 10 time with that scarlet fever. People kept telling me their thoughts, and that she would be better within a week or less.
UH, NO, Alexis had this for at least a month.
After July she slowly started to improve. She had to get another MRI in July. Then prepare for school.
In August, she got another concussion.
This just shows that her little head is very fragile! A simple bump on the head for the normal person is nothing, for Alexis who has a piece of her skull gone, can put her in the hospital.
People kept telling me differently with this, too. Telling me that I am over protective. Or that it wouldn't affect her that bad.
So, after getting through all this, the night of Alexis' 9th birthday, my husband informed me he has had a lump growing for about a year.
Back to the internet that night, I researched all I could. It was a Saturday night, so we couldn't do much until Monday.
On Monday, we got into the Dr. And the Dr. got Chris into the hospital IMMEDIATELY to get ultrasound.
Talk about a whirlwind, we saw the Urologist the next day, and he said he was almost certain it was cancer.
The 3rd week, Chris had surgery. And has survived seminoma cancer. He will be starting radiation soon.
This is our year in a small bit.
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