Wednesday, August 10, 2011


During camp, Lily went to the GI here for the first time. Her conclusion was that Lily was suffering from GERD--gastroesophageal reflux disease--and that was why Lily was vomiting. So she put Lily on both Prevacid and Zantac. Lily also was put on Miralax because the doctor believed her constipation might also be causing her to vomit. Camp came and went, and Lily's vomiting did slow down. A lot. But then we moved, and a week later, the vomiting began again.

I believe I did about twenty loads of laundry that week. Not fun. I called the GI, which is when she decided to have the stomach emptying scan done. To recap (which I think I've been doing this past paragraph and a half), Lily's stomach was found to empty slower than normal, so she put Lily on Erythromycin to help with the emptying. I also took her to the pediatrician and found out that Lily had a UTI. Ah ha! That's why the vomiting. Maybe.

Then, near the end of last week, I got a letter from DEHC, saying that they had been trying to reach me regarding a specimen that was sent over to their office from our hospital. I called them the next day (they had the wrong area code for my cell) and found out that the bacteria in Lily's urine was salmonella. DEHC was trying to reach me because they wanted to add Lily's case to their database just in case an outbreak occurred.

I'm stumped. I have no idea how Lily got this. But I'm a little grossed out, too, because I'll tell you: it doesn't just come from chickens. Fruit and vegetables, turtles, farm animals--you name it, it has it. Or so it seems. After hanging up the phone with the lady at DEHC, all I wanted to do was take a nice hot shower. Call me a freak, but I'm washing my hands like crazy! Apparently, this little bacteria shows itself by making you sick for about a week. Then, it decides to play a little trick and lie dormant in your body to fool you into thinking that it's gone away. No. It hangs around for six weeks to two months and is willing to share itself with any and every one who happens to get it on, say, their hands and then put their hands in their mouths. I've got a seven month old and a two year old who thrive on hands in their mouths! I'm wondering if that's how Lily got it. Luckily, it seemed to be a mild case because no diarrhea was involved.

But this is how it always is with Lily. The initial vomiting, I thought was the medicine not working, or Lily's body getting used to it. Then, I thought it was the UTI. Perhaps it was the bacteria. Or just. . .Lily. There's always three or four potential reasons, and no one can ever pinpoint the exact cause.

With a little Omnicef, though, things have cleared up, and I haven't seen vomiting since Thursday of last week. Well, actually, she did vomit a little today, but that's because she gagged when I had her taste Soleil's apple/cereal mix.

As for the Bi-pap. . .on Thursday, we saw the pulmonologist for the first time. This doctor is going to take over the decisions with Lily's breathing. I told the nurse practitioner who saw Lily about her reaction to the Bi-pap, and they've decided to hold off on it for a while and go back to the oxygen. Their reasoning? Lily doesn't understand what's going on. It can be scary for a two year old, period. There's no telling what's going through little Lily's mind with this. Poor thing!

So we're back to the loud, obnoxious oxygen that Lily hates. I've put off putting it on Lily while she was vomiting, and then she ended up catching the virus that Gabriel had, so I didn't put it on her for that reason. Tonight, she has no excuse, so we're giving it a try. She cried, but I gave her her favorite baby doll (which she immediately put in her mouth), and she calmed down. I hear her now, singing. I bet the cannula fell off.

I know this is a long post, but so much has happened here recently. Our friend, Susan (Rebekah's mother) had a terrible appointment with Rebekah's neurologist (you can read about it by clicking on the link for Rebekah Faith on the sidebar), so that's got me, once again, interested in the brain. More specifically, the brain in a child who's developmentally delayed. I've been reading a few books: Teaching with the Brain in Mind and Children with Mental Retardation: A Parent's Guide. Both deal with the brain.

I don't know. Maybe I'm wrong. But I know the brain is a phenomenal organ capable of things we probably will never understand. I know that Lily's little brain is not normal. I accept that. But I believe in my heart that there are things (some unknown to me) that I can do to help her achieve to her fullest potential, and regardless of what that is, it all falls back on the brain.

I could spout off a list of things to do to help the brain reach its potential, some I've done with Lily, others I probably should do. And I don't know if what I'm doing is right, but when I'm playing with her, I'm believing that what I'm doing is good for her, and (call me crazy) I'm "sending" that belief "through" me to her. She sees it in my eyes; she hears it in my voice; she feels it in my touch. And I know that she senses it because I see it in her eyes and her smile and the way her little body gets excited. My gosh, she's so proud of herself when she knows she's worked hard!

And here are some things I know: Lily knows what "dance" means. And she knows what "stand up" and "sit down" mean. She extends her head back a lot, and if I tell her to fix her head, she'll put her head down. If she's in her rocking chair, I can tell her to rock, and it might take a few times, but she'll sit herself up in that chair and move her head back and forth, and that chair starts rocking! She learned how to rock on her own! Tonight, I asked her where her daddy was, and again, it took a few times asking, but she turned her head to look right at him.

To a doctor or a scientist, it probably looks like coincidence. To me, her mother, it looks like one smart little cookie. I nursed this little girl for pretty much fourteen months, and I fully believe I have a connection with her that just knows. . .her.

Now you're probably thinking I'm really crazy, but I have an immense faith in that Invisible that is between us, making connections science will never be able to explain.


  1. It is soooo exciting reading about the things that Lily can purposefully do! Praise God! :) Im so sorry to hear she got salmonella poisioning - that is crazy. I'm sorry you have to battle the oxygen too. My Lilly has adjusted to it but even in her sleep she whimpers periodically and tries to rip the cannula off.

  2. Jill--Time and time again you have demonstrated your God-given instincts about Lily, and they are virtually always right. I celebrate the little miracles that science might like to explain or disprove...I celebrate because they simply can't! I too believe she has potential that some would not even explore; I've seen it, felt it too♥Momma Ray

  3. Lily CAN do amazing things. Maybe these doctors could learn to expect the unexpected when it comes to our t18 miracles. You've done a great job teaching her and working with her!

    Jenny C.

  4. Oh no Jill you aren't crazy. Exactly the opposite! You are so smart and know Lily better than anyone else. Thank you for this wonderful post. Our children are so similar in many things so we can all use the information. Also I was going to say that when we were getting Annabel use to the oxygen because she still can tolerate the c-pap due to c-pap belly and she doesnt' need any more air than she has on her own. Anyway we wait til she falls asleep then places the canula on her nose. Good luck, you are amazing.

  5. I need to remember that about the vomiting too - get a urine culture when it starts occurring for no reason!! When R got admitted Memorial Day, the initial diagnosis was dehydration and UTI. Anyway, let me know what you are learning from that book, because I fall asleep if I read anything these days. LOL. Love ya!