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!