Salmonella

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.

Bi-pap Blues & Other Goings On

Gosh, it's been a whirlwind of a month! Lily finished camp, we prepared for moving, I got sick, we moved, and now we're trying to get the house settled. Dave and Gabriel have started school, and I've been spoiled because Dave's parents are here helping. Sadly, they leave on Sunday.

I feel as if we've dealt with more with Lily this past month than we have her whole little two years. First, she had the unsuccessful sleep study where they decided to put her on oxygen. It made her so sad to put it on, and the tube kept falling out in the middle of the night when she turned on her side. By that time, Lily had another sleep study where they decided she needs to be on Bi-pap, so I decided to do without the oxygen for a few nights. A few nights turned into a few weeks due to paperwork. Apparently, the FDA doesn't approve Bi-pap for children as young as Lily, so extra paperwork had to be done. But one paper was looked over, so we had to wait for it to be completed and filed. On Thursday, we got the Bi-pap.

My grand dreams of Lily doing so well once more oxygen entered her little body while she sleeps have been crushed. Lily HATES the Bi-pap. It's bad! To the point where she makes herself vomit, she gets so upset. Then, the other morning, I got her out of bed to put her in her feeding chair and she stayed asleep. So I put the mask without the cap against her face. She immediately woke up and got extremely agitated. Her heartrate went up to 191! I took the mask off after about five minutes. It took her another five to calm down after I took the mask off. Then she vomited her feed. That was it for me. So now we're playing another waiting game for the doctor to call and see if he'll lower her flow rate to the lowest possible setting so we can increase it in baby steps. We're also looking for a mask that will fit her better. This mask touches her top lip and pulls it up against her teeth. The company is ordering a MiniMe, but they're saying it's bigger than the one she has. May, Vera's mom, recommended a different mask, and it looked like a good fit, but this company doesn't ship to the US.

In between all of that, Lily has been cutting teeth and had a bad diaper rash to accompany it. It's from the rash that she learned she can make herself so upset, she'll vomit. Little devil! She's been running a low grade fever since the beginning of this week, but it spiked to 102 last night. All along, I was thinking teeth, but I took her to the doctor today because of the spike, and it looks as if Lily has a UTI.

We had a pretty good time during camp with a whole lot less vomiting (even though her counselor, Lisa, had to deal with more blowouts), then we moved, and Lily started vomiting again. We're hoping it's because of the UTI. When you have a child on medicine to try to keep her from vomiting, and then she vomits, you wonder why you even bother with the medicine. Especially when you're waking up at 6:30 in the morning to give it to her. But yesterday was a vomit-free day, and today was looking good until the doctor made Lily gag on the tongue depressor. Lily's third feed was fine, and she's got one more to go. I'm really hoping for the best.

Something did dawn on me today, though, while at the doctor. They brought in a throw-up bowl when Lily was vomiting. My first thought was Why am I ruining my towels? All I need is one of these things. Maybe I'll pick up one from the store tomorrow. What took me so long to think of that one?

I've been horrible not posting, especially since I have some really cute camp pictures to share. But my goal when we moved was to not have any boxes in the house. So I didn't totally reach my goal, but I didn't do that bad of a job. Unfortunately, I'm a prioritizer, so when getting everything unpacked is one of my main priorities, it's hard to allow myself to stop and post. But I do have some really cute camp pictures to share. I'll get to it soon, I promise.

In the meantime, if you have any ideas how to get my little girl used to this Bi-pap machine, I'm listening. I can't make myself put it on her right now because I'm afraid if I leave the room she'll vomit with it on. In my mind, that risk outweighs Lily's need for oxygen.