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.

Sincerely,

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!)

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…

Follow Up to Last Post..FOLLOWED BY SOMETHING REALLY EXCITING!

Maddie had her appt with Dr. Gregory on Friday. I was all nerves walking in there. As Usual, George was calm. They were running behind and it was going to be a 45 minute wait. This was nothing new. In my vast experience with appointments (I've become somewhat of an expert and could write a book on how to stay entertained while keeping your kid happy in a waiting room), I should've known better and should've called ahead of time to see if the Dr was on schedule. We sat there gathering our thoughts on the dreaded feeding tube. There was just nothing I could think of that the Dr could say to change my mind... I'm against it; George is against it. Maddie has taken steps forward with her feeding. She no longer gags on puffs and will eat a few bites of rice, beans, shredded chicken... things that a month ago she'd gag and puke at merely the sight of. She eats 4-5 meals a day of purees and yogurt, and is at least consuming enough liquids to stay hydrated. So what could the Dr of possibly 'found' in this research?... NOTHING! The tube was mentioned  as a plan B in his notes. The Dr. agreed wholeheartedly that the nurse should've gathered more info about our situation. He's going to talk to her about it. He said she's a 'passionate' person, but has good intentions. I have a few other words I'd like to call her. Dr. Gregory was impressed with Maddie's weight gain... she's back on the charts. She's worked her way up to the 10th percentile and is in the 50th percentile for the length to weight measurement. These are good signs! (sigh of relief.. followed by a big WOOHOO!) He also noted how much better Maddie's trunk control has gotten and he saw improvement in the fine motor area as well. Anyways, Maddie was sitting on the exam table and was tired of being poked and prodded, so what does my beautiful little baby do? She reaches her arms out to me and says "mom...mom...MOM" It was clear as day! The Dr. looked at me with a dumbfounded amazement. I grabbed my little one so fast and hugged on her! I didn't realize just how sweet a simple three letter word could sound. Of course, the whole way home George was in the drivers seat saying "Dada Dad Dada" OVER AND OVER AND OVER again Haha!!

The Nerve of That Nurse!

I called Maddie's GI doctor yesterday to re-fill her Prevacid prescription. (I only had enough left for this morning). They passed me through to the nurse who looked up Maddie's file and this is how the conversation went: Nurse: "Ummm, I don't think the Dr.'s going to do that", Me: "Why not?" Nurse: "He wants to do enteral feedings" Me: "Huh? What do you mean enteral feedings?" Nurse: "Based on his research and findings he'd like to install a feeding tube." Me: "What were his findings?" Nurse: "I cannot discuss that with you, you'll have to talk to the Dr." Me: "Can you fill her prescription in the meantime? Tomorrow is the last dose I have. I'd prefer to keep her on the meds until the Dr. and I discuss whatever it is he's discovered" Nurse: "No, I told you I can't", Me: "Can you talk with the Dr. to see?" Nurse: "I can try, but like I said I really don't think he's going to do it". Two hours later.... ring, ring... Me: "Hello", Nurse: "We have a sample packet of Prevacid ready for you to pick up".

"Research and findings... tube" I'm really upset about this. I have an appt tomorrow, but I think the nurse should've approached the situation a little differently! How about "The Dr. would like to try a new treatment method and I see you have an appt Friday, so you guys can discuss it then", instead of leaving me with this doomed feeling. They did blood work at the hospital two months ago; maybe something showed up there??? I hate not having enough information... I WANT TO KNOW NOW!!!

Humble and Thankful

Having a 'delayed' child and what I've faced over the past 11 months has been the most humbling experience in my life. "I've realized the world doesn't revolve around me and there isn't a sacrifice too great that I wouldn't give to make my child better." I've realized the life i've taken for granted and in that I've learned gratitude. Being truly grateful has made me realize what I do have is enough.
What do I have?
   I have the best kind of husband... the kind that continues to love me throughout the worst of times, including those times when I'm just plain unlovable.
   I have a mother who's inspiring. I don't have to ask for help or support... she just knows and is there when I need her in a heartbeat. I hope I can be half the mom to Maddie as she is to me. The Greg has helped shaped me into who I am too.
   I have a father and another mom (yes, I'm blessed with two) who are amazing as well, I may not be a little girl, but I still hope to be like them when i grow up ;0)
   I have a job, and it's not just a job, it's a house full of friends. (I work at a casino, and that's our advertising slogan) I had to throw that in... I crack me up LOL ;0) But really, my co-workers are becoming more and more like family. They might not even know what I'm up against, but their thoughtfulness and nice gestures have given me a lot of strength. My boss is pretty admirable himself: he's compassionate, understanding, and generous. I have a great repor with him, which makes coming to work a good experience.
   I have the BBC board. Did you know I'm not the only one who's experienced such chaos with a child? This is an amazing group of women. They are strong, supportive, and have given me some pretty incredible advice. I've never met any of them face to face, but they've changed me.
   I have a beautiful baby girl. It's too bad there's not a milestone for smiles, because hers would top the charts. I know I've written a lot about the frustrations/headaches Maddie's given me, but at the end of the day I LOVE BEING MADDIE'S MOM. I've learned the enormous capacity the heart has to love from her and that's a beautiful thing.

One last thankfulness line and I'll wrap this up (I have great friends and extended family as well, but they know they're awesome and I love them so i won't get carried away and go on and on like I could) So, that last line which many of you may not know... I'm wealthy.
(No, I don't have much money in the bank... do you know how expensive Dr's and hospitals are, good grief!) But, I am wealthy, and if you still don't know just how wealthy I am, go back and start reading from the top! The people in my life are amazing!

HAPPY THANKSGIVING everyone ... gobble gobble!

-the quote above in italics was said by Maureen, She's pretty great too! I thought that quote was profound so I plagiarized it! Those may of not been her exact words, I don't know.... but it's profound!

LISTEN TO THE MUSTN'TS

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me --
Anything can happen, child
ANYTHING can be.

by: Shel Silverstein

I can’t wait to share this with Maddie… She’s going to hear this one over and over and over again. ;0)

I so badly want her to just get up and crawl. She’s been up on all fours rocking for over a month, but she just doesn’t quite have the coordination to put it all together. She did ‘army crawl’ a few days ago. It took a big motivator like giving her a sip of apple juice, then setting the cup halfway across the room to get her going. I LOVED watching her go. She beamed with pride when she reached her destination (the cup). I happily gave her a few sips then moved back to other end of the room and set the cup down… she was determined. It was Bliss! And she did it again! She did it 3 times. I wish I would’ve had the camcorder out. George was watching too…rootin’ her on. I haven’t had any success since then. She decided apple juice is overrated and too much work. We’ll keep at it though.

I’ve been replaying the comments the Neuro made about Maddie’s development and Rett syndrome. It’s like I’m lost in this indeterminate state. One day I’m extremely positive and hopeful thinking that guy was out of his mind. Then without so much as a trigger, my patience runs thin and I feel this impeding doom about the whole situation. I so badly want her to prove them all wrong. It’s tough not having a diagnosis. We’re in limbo. The fear of the unknown and how it’s affecting my child leaves me with a lump in my throat. That’s just it though, it’s ‘unknown’, which leads me back to the hopes that whatever it is, Maddie will ‘outgrow it’ and ‘catch up’. Are you still following me? If not, it’s okay, it’s not you, it’s me…. I’m up then I’m down, the important thing is that everytime I’m down I get back up. Maddie has made tons of progress, and she CAN and WILL continue to do so, regardless of whatever expectations a neurologist who spent 15 minutes with her might have. I love Shel Silverstein… I really needed to read this poem today, and like I said above… I can’t wait to read it to Maddie.

The Honeymoon is Over….

Maddie’s back to her old feeding ways and has been for a few days. I’m irritated, frustrated, annoyed. (I think you get the point). I called Dr. Gregory yesterday…you might remember him from my last post, Maddie’s GI Specialist and my hero. I just knew he’d know what to do! I talked with one of the nurses. I told her the urgency of the situation… I know I sounded desperate, because I was. She informed me that I’d be better off making an appt to see Dr. Gregory in the clinic. By the time he’d get around to returning my call, I’d of already been seen. I agreed and asked when the next available appt was. Her response almost knocked me off my chair… two weeks. She apologized and explained that he is a busy man, etc… blah blah blah! Hello, this is my daughter and she needs nutrition… two weeks is tooooooo long! I hung up more annoyed than I was to begin with. In fact, irate would be the perfect word to describe how I felt. The Honeymoon is over… I want a divorce. I called Maddie’s Pediatrician, bad mouthed Dr. A-hole, asked her if she’d refer me to another GI Doc. “He’s the only one, you’d have to go out of state.” I then called my husband, my mom, a friend…. How can he get away with this? I truly thought he genuinely cared about our situation. After tossing and turning all night, I get into work this morning to see that button lit up telling me I have a message. I ignore it… I hadn’t had my coffee and was still moody. In the meantime, George took Maddie to Dr Diedrichsen’s office. She’s the pediatrician… She’s amazing, but I’ll save that for another blog. He took Maddie to get her flu shot at 9 am. They did a weight check and believe it or not, Maddie still gained weight. We’re now at 15 lbs 4 oz. Woohoo! Lets go back to that message now, I played it…. The message was recorded at 6 pm last night and guess who? That’s right, it was Dr. Gregory concerned about Maddie. HE DOES CARE! He even stayed late to call! I had left my work number with the nurse… oops! Now I feel like the A-hole. Moral of the story: Quit flipping out! Maddie has an amazing team who’s looking out for her best interests. Oh, and did you know that a couple days of poor feeding is normal considering we have our first tooth, actually first 2 teeth, poking through?