The good news I have to report is that Andi is eating most of her intake orally, drinking juice orally too. She's "taken off" on the feeding, and it's been amazing to witness! We're choosing to push it and let her get hungry. We need her to feel hunger, and associate eating with satiating that hunger. Since most g-tube fed kids have a serious disconnect with that association.
Andi is working hard with her walker. Sadly, our living room is super small and she isn't allowed many steps. We try to bring her walker with us when we're going to play group, so she can walk the hall or such. Shocker, the weather outside isn't conducive to Andi working on walking.
We are finally hosting Flat Charlie this week. Flat Charlie has been on the road almost a year, and has visited families all over the globe. He visits a family and they take pictures with him to share on his Facebook group, and then they send him on his way to the next family. Yet, before he goes, the family adorns him with a token of his stay with them - some sort of decoration to commemorate his stay with that family. Charlie's been here a few days and has seen much of the city. He's helped out baking cookies that we'll be giving to Andi's Dr's, nurses & specialists that have helped us come this far. However, Flat Charlie is really a tool to raise money for CHARGE Syndrome Foundation, and raise awareness for CHARGE Syndrome. Here's the link to our personal fundraising page, if you feel so inclined to kick a few bucks in honor of our sweet bean.
As much as she's been through, there are many kids that have endured three times as much as Andi. It's completely unfair that no one knows or hears of 'CHARGE Syndrome'. That only 'autism, down syndrome, and cancer are the struggles you hear about. Sorry, as a Mom who's daughter won the genetic lottery (sarcasm) -- 1 in 8 to 10,000 isn't 'RARE' to me. My kid has been through much more than any autistic kid, or even a kid with Down's Syndrome. Where's the funding for our syndrome? Well, it starts with loud, obnoxious parents like me who are hell-bent on educating the masses without a microphone. *stepping off soap box.*
In any case, kick us a few bucks if you can. Trust me, I know it's the season of giving and all, and I don't even have a few bucks to kick in myself. So, even just going to the page and reading about CHARGE - and somehow telling someone else about CHARGE... a grass-roots sort of spreading the word would be better than just closing this blog and doing nothing at all. It is my hope that if enough people learn about CHARGE Syndrome, that maybe they'll start including it in the genetic testing they do when searching for issues. All the fellow CHARGE Mom's have mentioned a pretty normal pregnancy with no idea their kid would be facing the seven layers of hell and beyond. How fair is that? *really stepping of soap box.*
So, we've been super busy lately between eating like a big girl, and playing tour guide to Charlie.