Oh boy. I'm feeling heavy hearted today. Tyler is home ill again today. Since we've been back from the hospital in Seattle, she's making it to school an average of four days a week, though last week it was only three. There are so many things going on in her body. She tries to stay so strong and positive. She also tries to hide it and put up a brave front for others.
Her new meds are really giving her a tough time. The Methotrexate is really hard on her. That in addition to the Humira injections and the huge doses of anti-seizure medications are tough on her body. I could go on and on and bitch about these meds, it really, really, truly sucks.
Since having her feeding tube removed, she is on the specific carbohydrate diet. Complicated is an understatement. It's gluten free, as well as no bread, rice, pasta, potato, grain, soy, starch, sugar, etcetera. Most dairy is illegal, but aged cheese are allowed which is a huge win since she loves it so much. There are limits on everything, but basically it boils down to fruits, vegetables and proteins. Though there are some fruits & vegetables on the illegal list too. Iye yie yie.
At this point, I figure I've lost anyone who might be reading this. Now it's just for me to clear my mind & get it out. Good old fashioned complaining = )
The diet is a tremendous amount of work, everything is from scratch. Our treat last Friday was a trip to the salad bar! Crazy days yo. We will get used to this, and hopefully it will become second nature for us. After a few months, she will be able to have bites here and there of illegal foods, but that will have to be in much moderation, because we need to get her body functioning properly.
The grocery store is so sad, and frustrating for me. Last Monday, JP went with me. We were there over two hours, checking the legal/illegal food list and scrutinizing labels & ingredients. Basically if there are more than four or five ingredients I can pretty much skip it. The only type of flour she can have is raw almond flour and raw coconut flour. Eight bucks for 16 ounces and 10 bucks for 16 ounces respectively. OUCH! Did I mention I started my grocery list the night before any also tried to use coupons. Fuhgeddabouddit! The grocery bill with card savings & coupons was about $230.00! Now, you would assume that would be two or three weeks of groceries, right? Sadly, not so much.
Price aside, I also mourn for the type of cooking I love so much. I'm now learning a whole new style and way, but it's hard to teach an old dog new tricks. I know there are lots of positives, but right now I'm expressing my frustrations. I am sure I won't mind the price as much and will be much more positive about it when we see better results for Tyler.
On a rewarding note, she and her friend did their project for the science fair on Crohn's Disease and Ulcerative Colitis. They did such a phenomenal job, and Tyler got to do what she has wanted to do for so long. INFORM & ADVOCATE. There was one gentleman that said he had similar issues and that he was going to see his doctor about his symptoms. Talking to that one person, making a difference, helping someone get help, made her SO HAPPY!
Okie dokie, update on The Pixie Project: I still want to become a non-profit. And help lots of kiddos. Tyler wants to as well, and though we'll start small & slow, we are going to share smiles & happiness and little pixie kiddo at a time <3 More on that later, I've got BIG IDEAS & BIG PLANS, but have to keep reminding me that you have to make sure your foundation is strong before you build a house on it = )
Have a wonderful week, we are on the countdown to 8th grade graduation...busy, busy, busy!
Her new meds are really giving her a tough time. The Methotrexate is really hard on her. That in addition to the Humira injections and the huge doses of anti-seizure medications are tough on her body. I could go on and on and bitch about these meds, it really, really, truly sucks.
Since having her feeding tube removed, she is on the specific carbohydrate diet. Complicated is an understatement. It's gluten free, as well as no bread, rice, pasta, potato, grain, soy, starch, sugar, etcetera. Most dairy is illegal, but aged cheese are allowed which is a huge win since she loves it so much. There are limits on everything, but basically it boils down to fruits, vegetables and proteins. Though there are some fruits & vegetables on the illegal list too. Iye yie yie.
At this point, I figure I've lost anyone who might be reading this. Now it's just for me to clear my mind & get it out. Good old fashioned complaining = )
The diet is a tremendous amount of work, everything is from scratch. Our treat last Friday was a trip to the salad bar! Crazy days yo. We will get used to this, and hopefully it will become second nature for us. After a few months, she will be able to have bites here and there of illegal foods, but that will have to be in much moderation, because we need to get her body functioning properly.
The grocery store is so sad, and frustrating for me. Last Monday, JP went with me. We were there over two hours, checking the legal/illegal food list and scrutinizing labels & ingredients. Basically if there are more than four or five ingredients I can pretty much skip it. The only type of flour she can have is raw almond flour and raw coconut flour. Eight bucks for 16 ounces and 10 bucks for 16 ounces respectively. OUCH! Did I mention I started my grocery list the night before any also tried to use coupons. Fuhgeddabouddit! The grocery bill with card savings & coupons was about $230.00! Now, you would assume that would be two or three weeks of groceries, right? Sadly, not so much.
Price aside, I also mourn for the type of cooking I love so much. I'm now learning a whole new style and way, but it's hard to teach an old dog new tricks. I know there are lots of positives, but right now I'm expressing my frustrations. I am sure I won't mind the price as much and will be much more positive about it when we see better results for Tyler.
On a rewarding note, she and her friend did their project for the science fair on Crohn's Disease and Ulcerative Colitis. They did such a phenomenal job, and Tyler got to do what she has wanted to do for so long. INFORM & ADVOCATE. There was one gentleman that said he had similar issues and that he was going to see his doctor about his symptoms. Talking to that one person, making a difference, helping someone get help, made her SO HAPPY!
Okie dokie, update on The Pixie Project: I still want to become a non-profit. And help lots of kiddos. Tyler wants to as well, and though we'll start small & slow, we are going to share smiles & happiness and little pixie kiddo at a time <3 More on that later, I've got BIG IDEAS & BIG PLANS, but have to keep reminding me that you have to make sure your foundation is strong before you build a house on it = )
Have a wonderful week, we are on the countdown to 8th grade graduation...busy, busy, busy!
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