Saturday, January 30, 2010

Dear Dr. of Neurology

My husband and I sought out your help in identifying my daughters’ developmental delays last October. I appreciated you taking the time to come down to Saint Mary’s and meet with us. You seemed very knowledgeable and the testing you recommended was thorough. To be honest, most of our stay at St. Mary’s is somewhat of a blur. There were a lot of tests and a lot of anxiety. I do remember, rather vividly, the phone ringing as we were being discharged. You had called to let us know that there were no abnormalities reported in Maddie’s EEG, and from what was able to be seen in the MRI, it looked okay. Then the bomb was dropped, you thought it was a possibility Maddie had Rett Syndrome. I understand why you would’ve thought that with her present symptoms.

Before I get to the underlying reason for my letter, I want you to know that I really do admire your field of work. The human anatomy and what makes things tick has always interested me. I remember studying neurons and the transmittal of information to and from the nervous system in college… we also covered various nervous system disorders and what not. I now find myself on the other side of the textbook, and there’s nothing scientific about it. This is real life, this is our child…. and it’s my family’s reality. The neurology referral alone was disheartening; but to hear that you suspected something wrong, that was terrifying.

After our phone call and discharge from the hospital, I cried for 3 days straight. I’m not blaming that on you in anyway whatsoever, it was my way of grieving the normal life every parent wants for their child. Two weeks after the test was performed, I received a phone call from your secretary stating that they didn’t draw enough blood to complete it. I asked her which test, and she said the one that looks at chromosomal abnormalities. I asked her specifically if that was the test for Rett Syndrome, and she responded ‘yes’. My husband and I decided not to re-test. We needed some time to recover from the rollercoaster of our lives. The thought was always there lingering in the back of my mind. Then, last Thursday, we met with a developmental pediatrician who suspected Rett Syndrome as well. This, in my mind, confirmed your belief that Maddie had it. I went home that night and had another good cry. As much as I hate to admit this, I even practiced saying ‘Maddie has Rett Syndrome”, my life was forever changing, or so I thought.

On Tuesday, the developmental pediatrician called to say she received Maddie’s chart from your office, and the Rett testing had in fact been completed, it was negative. The chromosomal microarray was the test that concluded an insignificant amount of DNA. I wonder how long you had known? Please don’t EVER put another parent through this again. It would’ve taken your secretary all of 5 minutes to place a phone call to me or draft a letter when test results came in. I believe this is a standard procedure in most practices, if it’s not, it should be. A negative Rett syndrome test is an extremely crucial part of our daughter's life/medical file. We have wasted time, tears and energy on wondering about this because someone dropped the ball. I know it’s not over; we have a rough road ahead of us as Maddie’s delays are still undiagnosed. Unfortunately, we are going to find another pediatric neurologist to help us with our quest for answers. There has to be an empathetic doctor somewhere.

Stacy Grover

(This letter will mailed out Monday. I'll keep y'all aprised of any responses I get, although I'm not anticipating one!)

Wednesday, January 6, 2010

It's Been Awhile!

So I haven’t written here in awhile….The holidays are a busy time of year, and I’ve been on vacation. I’ve been spending time with the chickens and cows in Farmville. I’m not going to lie…it’s really kind of a stupid little game on facebook, but I love it. Being on the farm takes me away from reality for a little while. I think everyone needs to do something that’s a little mind numbing (in moderation). I’m working on the moderation. Around 8 o’clock last night I realized I hadn’t made dinner yet…so maybe I didn’t ‘realize’ it. George might’ve nonchalantly asked if there was anything to eat …. My response “I finally earned enough money to buy the pink tractor. YaY me!“ Don’t worry I made sure the precious little one was taken care of… she was fed and content playing with all the new toys she scored for Christmas. She doesn’t really ‘play’ with them, but she does really enjoy chewing on them. I wonder if this teething stage will ever end??? George has been spending extra time with her since I started my vacation a few days ago. He taught her how to say kaka. Since she’s a pro at saying ‘mom’, he thinks its hilarious trying to teach her to put the two together… ‘kaka mom’. Not funny. Well, maybe it is a little funny hearing George crack himself up every time he says it. …..p.s… I did get off the game and make some great chicken parmesan. Micheangelo’s has some pretty good T.V dinners ;0)

Update on Maddie…. SHE’S ONE!!! Holy moly… it’s been a year since we started this journey. She impressed the doctor at her one year checkup. She blew her a kiss on demand ;0) I was so proud! Murphy’s law has it that when I say she can do something new and try to get her to show someone, she shuts down. I sometimes wonder if her therapists and doctors think I’m a liar. She’s becoming quite the social butterfly though. I just love her to pieces!!! New pics coming soon…