Thursday, December 14, 2006

It's been a while...

Sorry I haven't really posted any long entries lately, but there has been a reason for that. Besides crazy work deadlines, a few things have been going on lately that have made it hard for me to write without sounding like a basket case. But enough time has passed now where I can coherently explain all that's been going on.

First of all, everything is fine. Praise God that He has blessed our Emma with good health. Besides the usual colds kids seem to get every 3 seconds, she is a healthy, growing child with a curious mind and well, a strong personality! We wouldn't change a thing!

But a few weeks ago I decided that I wanted real answers about her silent reflux. I was tired of relying on my own instincts to diagnose her, and I hated that she had been a medication for so long. I needed confirmation that she did indeed still have reflux -- or better yet, that she had grown out of it. When she was an infant, it was easier to tell when it was bothering her, but as a developing toddler, there are way too many other factors and issues that have made it hard for me to tell what's going on inside of her. (Hmmm, maybe that's why we have X-ray technology...)

Anyway, we made an appt. with the GI, and I was all ready to demand a scope, an upper/lower GI, or whatever they needed to do to give us some answers. But instead we ended up talking about Emma's enormous appetite. Now I know what you're all thinking... just feed her if she's hungry... it will all balance out eventually. But she is ALWAYS hungry... before AND after a meal. She practically jumps out of her high chair yelling, "Muh, muh" and will continue to do so until I pry her out of her chair. She eats EVERY morsel, and she eats A LOT. Case in point: Breakfast might include one scrambled egg, whole-wheat toast, fruit, and 6 oz of formula. And she is still hungry after that. The GI agreed -- that was a lot of food for a baby only in the 25th percentile of her weight class. He was concerned she wasn't absorbing her nutrients.

So before I knew it, words like Cystic Fibrosis, Celiac Disease, and Hyperthyroidism were being discussed. Tests were being ordered, and I was being assured that Emma probably didn't have the terminal form of Cystic Fibrosis since she hadn't had pneumonia or respiratory problems. Um, what?!!! It was all happening very fast, and I was trying to stay calm. I only wanted to check on her reflux.

So the following week we did all the tests. I apologize to those of you who feel upset that you are just finding this out now, but we really didn't want to worry anyone until we had answers. It all seem a little far-fetched to us, but we wanted to follow the GI's suggestions. We decided to only tell our parents so they could pray. And boy did we pray!

In the end, every test turned out to be NEGATIVE. Praise God! It took a few weeks to get all the answers, but slowly but surely, we were getting the confirmation of what we had known all along -- Emma just has a sensitive stomach.

So where are we now? Well, Emma has officially been off her reflux medication for one week and all seems well. BUT she has had an ear infection, so who knows. We'll see what the future holds.

We also started soy milk. At first, Emma didn't seem to notice that I was mixing it in with her formula, but then suddenly she wouldn't go near it. This was all around the time of her ear infection, so I don't know if it was the soy or the sucking (she wasn't drinking much of anything). Our pediatrician suggested we go back to the formula until her ear infection clears up. Then we'll try soy again.

I do have a feeling soy may have caused the ear infection because she never had a fever with this one, and it's strange that it took her 13 months to get the first ear infection and only 2 months to get the second. She also broke out in a horrible diaper rash while on the soy, and now it's gone. We're considering rice or goat milk, but our pediatrician isn't convinced soy is the issue. We're discussing it at our follow-up appt. next week.

Emma's diet is still fairly large, but I have also been trying to incorporate more fat into her diet. Because I make all of her food fresh, I wasn't always good about adding fat. I didn't do it intentionally. I just never thought to add it. I even let her eat her first cookie! Since I've been doing this, she seems to be less intense/hungry. I've also been trying to give her more snacks in between meals. Our 15-mo well baby appt. also put her weight at almost the 50th percentile, so maybe it is all balancing out.

All that I can say is that Jeff and I feel more blessed than ever to have Emma. When I was sitting in the waiting room a few weeks ago during Emma's tests, I saw a lot of sick children, and I realized food restrictions really weren't that big of a deal. I would love Emma no matter what, but her sake, I am happy she is healthy.


Anonymous said...

Oh, such a precious little one she is! I hope she is feeling better soon and that you continue to hear good answers, and yes- Praise God it's nothing serious!!

Anonymous said...

Remember back 2 Christmases ago, when you were worried about your pregnancy? And being the 'understanding' mom that I am, I told you "Welcome to motherhood -the worry is here to stay, to one degree or another, for the rest of your lives." What I failed to tell you is that it is so very worth it and the joys FAR outweigh the worries as you are now finding out on your own. Thank you God for the precious gift of Emma.

Anonymous said...

Lisa, the moment I read your post, my heart did a little jump. With our Annaliese, we've also heard words like cystic fibrosis and researched things like that and celiac disease. I was immediately taken back to the day in July of 2005 that Annaliese had the sweat test done to rule out CF...just the anticipation of that test alone and waiting waiting waiting for the phone call after was enough to last me an entire lifetime. I am so so so thankful that Emma doesn't have CF. We said the same thing after Annaliese's test came back negative, too, but we also said this: Even if she DID have it, God is still good. We've learned that over and over during our journey of parenthood. Sending you a big hug from one worrying mommy to another! :) :) :)

Anonymous said...

I had a feeling something big was going on but that isn't what I expected. I'm so sorry for all of you but very happy to hear the tests were negative. My heart dropped when I read that line about the possibilities.

I remember when Julian had his scope at the hospital I saw a bunch of really sick kids and that was the day it didn't get to me that much anymore. But still nothing is easy to deal w/when it's your kid no matter how small.

I hope she doesn't need to go back on the meds b/c I know you don't like them and plus I want her to be able to handle everything Mama can cook her way! Hopefully the soy thing was a fluke. We were doing rice milk but have now switched to Soy exclusively for the higher fat content (and we were doing other soy things so I figured why not). I THOUGHT goats milk was still risky when there is an issue w/cows milk and soy but it does have the smaller proteins than cows...I think - why can't I remember anything?

A friend's baby isn't gaining weight either, like none but it's b/c she's not eating. So she has been seeing a nutrionist and the biggest thing they recommended was adding olive oil to everything she could which is what I used to do on the TED. I don't know if Emma can do olive oil?? And avocado was another recommendation since it's also good fatty but again, not sure what Emma likes or is able to have. And I'm sure you've been researching like crazy and got good suggestions from your GI anyway.

Keep me updated, I'm hoping this is all a distant memory soon. And I'm here if you want to vent away! xoxo

Anonymous said...

Hi, I just happend upon your site by Kellibelly and wanted to let you know that my daughter has had quite a bit of digestive issues and belly issues and goats milk has been our answers to prayers. It's a bit expensive compared to cows milk but it's closest to breast milk and well worth the cost. Hope this helps!

Anonymous said...

I just updated myself.....what a journey!!!

Your insticts proved to be correct...good job!!!