We're not alone!

I was going to post about this past week. Making brownies and licking the bowl clean, Lily eating deli lunch meat and cheese at lunch, sitting down and watching a movie with Dennis...all these little things that made the anniversary of Lily's seizure....
just another day.

Then I decided to skip over all that goody stuff and I was going to update everyone on our feeding therapy session today.

But now, well I did some googling and my heart is so uplifted right now, I just have to share.

First off, we went to UNC for feeding therapy and I told our therapist that I want to take a break, to give Lily some time to grow and figure out what she wants, to see if she can get better on her own. And, I want to stop the prilosec. She was surprisingly supportive and just said that if the gagging started back up, to restart the prilosec, and if Lily still wasn't hard-chewing (crackers, cookies, cheerios) by her 2nd birthday in December we needed to come back and be more aggressive.
Lily's weight is up enough for me to think that what we're doing is working for now. If she's not eating, give her formula, if she eats (mostly at lunch) give her soy milk. It's not ideal but it works.
My theory is this, her food refusal has to do with her sodium. The reason lunch is so consistent (not in what she eats puree vs table food but in actually just eating) is because her sodium is at it's lowest. Breakfast and lunch she is too thirsty to want any foods. Makes sense, right? So we might need to focus more efforts on getting the DDAVP at the right dose.

So anyways, I got home and put Lily down, took a little nap and then decided to research "Diabetes insipidus and not eating" and wow, I just started crying some happy and relieved tears and just thought to myself, "We are not alone" Here's the link to what I found: http://www.diabetesinsipidus.org/4di_to_eat_or_not.htm and actually I read this story first, http://www.diabetesinsipidus.org/4di_i_cant_eat.htm and have read every article because they sound just like our story. And it's so amazing to see that maybe I was right and maybe it is her sodium and maybe, just maybe she'll grow out of this one her own. All I have to do is what I've been doing, offer, try my hardest to be patient, try to get the DDAVP under control and just wait...It's nice to see stories and see that even in my feelings I'm not alone. Like the woman that was so envious of her friends kids eating, oh man, that's when I started crying. YES! Someone understands! Someone else has been there with no direct answers or reasons why, and they made it through it.

It's just what I needed today. Because even though today is just another day in my head, in my heart it's also the anniversary of finding out Lily's diagnosis. We even went and sat in the butterfly garden for a few moments just to say, "hey, thanks universe for taking care of us when we needed it." That butterfly garden was where Dennis and I went after hearing the SOD news and today it was nice just to sit in the sun and watch Lily play with her stroller, grin up at me and point at the flowers.
It is just a day, but it's still a day with a lot of feelings floating around.