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?

Nothing Short of a Miracle

I'm in tears as I'm typing this. Not the same tears I've become oh so accustomed too these past few months... they're happy tears. We just got home from Maddie's follow-up appointment (see below post). They changed Maddie's meds (appetite enhancer & new reflux meds) while we were at the hospital, and her eating really did improve. In fact, it almost doubled! We went from a struggling, lips pursed, screaming child during feedings (barely getting 16 oz down a day) to a hungry HAPPY feed me every 2 hrs little piggy ;0) I knew she had to be gaining weight... but today was the ultimate test... THE SCALE! (Drum roll please) ................................................... She's gained 1lb 2 oz since we left the hospital 9 nine days ago (yes, you read that right ONE POUND TWO OUNCES a 9% increase). This is nothing short of a miracle! Note to the ones who solicitated your unwanted advice about how medicine just masks a bigger underlying issue: Kiss my you know what....My little girl is growing! I've made another appt with Dr. Gregory (He was one of the GI specialists we saw at St. Mary's). I just want to give the guy a hug!! Yep, I'll make the $50 co-pay just to hug Dr. Gregory. I heart Dr. Gregory!! Sorry to cut this post short, but this is cause for celebration. Maddie and I are gonna go eat some ice cream ;0)

My Heart Hurts!!

Maddie was admitted to St. Mary's Hospital on Monday morning. She had been vomiting so we took her to the Dr. just to get her checked out. They thought it could be possible H1N1 and wanted to take all precautions. My husband told the Dr. if she was going to admit Maddie he wanted her tested for everything... that I was going crazy, losing my mind with the 'what-if's', the trips to the specialists... all the tests and procedures. He wanted all the Dr.'s and Specialists to put their heads together, do all the tests they could possible think of; and figure out why our daughter isn't growing/gaining weight the way she should. The Dr. said ok and she lived up to her end of the deal. When we got there they put Maddie on an IV, drew blood, and took a urine sample. The only abnormality was elevated liver enzymes, which they weren't too concerned about because the stress her body was under being sick and all. The neurologist came in to play with Maddie and ordered a round of tests for day two. They starved her... no formula or food for 27 hours. Maddie was pissed... I've never seen her so upset. We spent the night trying to console Maddie who hyperventilated herself to the point of being put on oxygen. I wanted to feed my hungry baby so bad. Her blood pressure escalated to 128 over 70... I'm not good with those kinds of numbers but know enough to know that it wasn't good. I begged and pleaded with the nurses to let me feed my baby. There was no budging. Good thing George was there... he kept me strong. They did another round of blood work early in the morning on day two. Then later that afternoon we had the MRI. No big deal right... just general anesthetics. We waited for 45 minutes when the door burst open, the anesthesiologist, 2 nurses, and a physician came storming out and proceeded power walking down the hall pushing maddie's crib. I stood up... and saw Maddie lying there with tape over her eyes not moving. I panic'd... felt my knees go weak then it was like I lifted out of body and was watching a movie from the corner of the ceiling. Somehow I found strength ...I ran after them. When I caught up a nurse apologized saying they had to do a CAT scan before Maddie woke up. I wanted to hit the nurse. They put tape over the eyes to keep the mucus sockets from drying out. All was okay except my BP elevated. The results from both tests were normal... and I was finally able to feed my precious LO. She downed 7.5 oz... had never seen her eat that much let alone be willing to take a bottle. Then they came up for the barium swallow test. Of course she wasn't hungry for it, but they were able to get enough down to see that her mouth and throat were okay. Next it was an upper GI scan, which she wasn't supposed to eat prior too... oops no one told us. They shoved tubes down her nose... she threw up... so much for finally eating... they postponed the test for day three. Day three (today) consisted of more blood work, the upper GI scan, and an EEG. The GI scan showed moderate to severe reflux (we already knew this), but other than that all was well there. The EEG was an experience. She had 26 prongs connected to her head then as Maddie's screaming just leave me alone y'all have done enough tests, the tech tells me that he needs her to sleep through it.... an hour and a half test. Did I mention Maddie had just woken up from a nap when the equipment was brought it? My anxiety rose, but my hubby was calm and relaxed Maddie to the point where the tears stopped. The tech put Maddie in my arms, told me I needed to keep her in view of the camera, and asked me if I was comfortable. Maddie slowly drifted off... I felt my eyes getting heavy. We woke up, a lamp flashed overhead a few times and the test was over. At around 6 pm our Pediatrician came in. She said the game plan is we're changing Maddie's reflux meds and giving her an appetite enhancer. It'll be 3-4 wks before we get the results from some of the blood work. She said she'd write up the discharge papers and we could be on our way. (Follow-up appt in her office next wk). I was relieved (and a little disappointed.... still no answers). Literally right as we're walking out the door the phone in the room rang. I thought it was financial services and almost didn't answer, but I did. Nope they weren't hounding me for money... it was the neurologist. He thinks it's a possibility Maddie has Rett Syndrome... I can't breathe... the test is one of those that won't be back for a few weeks. I'm so angry... why suggest it... why not stay silent until there's a positive test... some hard core evidence. RETT SYNDROME? I'm back to being a wreck... I need a cocktail! How can I possibly wait weeks for the results... this last hr has gone by so slowly. Why did I answer the phone? I'm exhausted! My poor baby... why you? Why do you have to go through all this?

First Things First

I married my soulmate... my best friend actually. He's a guy who isn't intimidated by a little housework/yardwork, can cook up a great meal, isn't afraid to get his hands dirty, and knows his way around under the hood of my car. (wink, wink) .. no he really is good at working on cars, but I know what y'all were thinking...sickos ;0) Anyhoo, he completes me. We're blessed with 4 beautiful daughters (3 are my stepdaughters, but I don't like that word).  The youngest of the four, Maddie, was born last December and wow, what a rollarcoaster we've been on ever since. She's an amazing beautiful little girl who lights up my life. But there is a problem...she won't grow. The anxiety and frustrations that come with this are... well... you'd have to have a child with similar issues to fully understand the complexity of it all. We've had over 30 Dr's visits, not including a few trips to the emergency room and a hospitalization. She's been tested for everything from cystic fibrosis to metabolic disorders... all returning normal results. All they can tell us is she's hypotonic (less than normal tone and tension). Glad we're paying the big bucks for these Dr.s because my hubby and I pointed that out long ago....They just came up with the fancy name. We're still on a quest for answers (she has a barium swallow test at the local hospital next week). Hopefully that will explain what's going on during feedings. With all the tests she's been through, it hasn't phased her spirit! She is one happy smiley little peanut! And as for the 'low tone', ... Maddie is sitting fully unsupported and able to go from her tummy to a sitting position. This was something they said wouldn't happen for quite some time... SHE SHOWED THEM! Go Maddie Go ;0) She's up on all fours now too... I think she'll be crawling in no time!