Thank you. That’s what I needed to start this post with because there is nothing that can express my gratitude and what we’re feeling but THANK YOU is a good start.
In one week we’ve managed to sell 86 t-shirts, raising enough money to put a dent in the medical bills. We’re going in for more tests this week and while I wish that Ari didn’t have to go through this, she has been handling it like a champ. Ari has had to swallow bottle after bottle of chalky, sour tasting barium, get poked and prodded and do all sorts of other unpleasant things but she is taking it in stride. She understands that there is a point behind it all and that point is to make her feel better. For those of you who know her, you know she isn’t a shy kid but she definitely is over having to go to the bathroom in the “poop hat” in order to collect samples for testing! The “poop hat” is a hat shaped plastic contraption that goes under the toilet lid in order to make it easier to collect certain specimens. She is ready to get rid of it!
I explained to Ari that her Dad and I were selling t-shirts in order to raise some money. She knows all about fundraisers from school as they’ve done several this year. “That’s like what school does with their bake sales!” but when I showed her the orders that have come in for t-shirts she asked “these people don’t know me, why do they care if I’m sick or not?”. I explained that while a lot of you have met her in “real life”, all of you have shared in her life over the past 9 years as well as during my pregnancy since it was all photographed and chronicled on both her Mom and Dad’s IAM pages. I explained to her that even though she isn’t old enough to be on BME herself, she is still a part of a community of friends who care for and support each other in times of need. She was absolutely blown away by it and I think it’s an amazing example to show a young child who is growing up in the digital age. The internet brought her parents together and is responsible for her existence and it’s also responsible for helping a little girl feel loved and cared about. Some people say that the internet is ruining our sense of community but to me, things like this show that it isn’t being ruined, it’s just changing the boundaries and dynamics as to what the word “community” actually means.
I can’t express how much it means to me that everyone has come together to help us out. All I can say is thank you.
I also wanted to give you guys an update since you’re helping us to pay a portion of the medical bills. Ari had several tests over the past few weeks. One of them indicated that a portion of her intestines (not sure if that’s the right anatomical word!) are restricting “gastric material”. That “material” is coming back up as undigested food. So some food is getting through but the majority of it isn’t. This is why she hadn’t started showing signs of serious weight loss until last week when the vomiting got more severe. It made me think of people who have had bariatric surgery and since I’ve read several blogs from IAM members who have gone through it. I started giving her much smaller meals spaced through out the day or dinner being spaced out over several hours instead of at one sitting..
We did a practice run over the 3 day weekend. I’ve managed to get it so that she hasn’t thrown up in three days, which is a lot better than we’d done over the past few weeks. She’ll be going to see a specialist once she’s back up in Canada but in the mean time the doctors are putting her on a medication that will hopefully kick start her intestines (again, sorry if that’s the wrong word!) and get food moving. The only thing that is troublesome is that she appears to have some kidney issues that we’re getting further testing on. They don’t know if it’s related to the endless vomiting but if not, then it may have been a blessing in disguise if she has a larger issue with her kidneys. I’m just hoping that we get an answer because not knowing what is wrong with your child is one of the worst feeling one can imagine.
I’m going to be taking the shirts down on Wednesday so that I can get a clear number on the shirts that I need to have printed so if you would like a shirt, they’re linked below.
Thank you all again!
