Today is National Rare Disease Day, and a good day for an update. It's strange to see FPIES referred to as a rare disease. The strange part is knowing my daughter now fits into a category of rare diseases. It's tough to wrap my head around, so I have to take that hurt and turn it into advocacy by spreading the word, educating people, and gaining all of the information for ourselves that we can.
After our first hospital visit on January 19th, Acorn stopped sleeping through the night. Prior to that, she was a champion sleeper. I figured she definitely got that trait from me; I could win awards for how well I sleep. I mean slept. Now she wakes up every 1-3 hours throughout the night, an average of four times each night. It's excruciating trying to function on about five hours of sleep total, and those are broken up through the night. A mental health therapist is not a job where you can just slip under the radar through the day, yawning and dozing off. I have perfected the art of yawning without opening my mouth, and making the most of five minute power naps between clients. At first I figured her sleep regression was due to trauma at the hospital and getting out of her normal routine, but I've now read that some people find their FPIES kids don't sleep as well when they are getting their trigger foods from breast milk. It sounds like there is not much agreement about whether these types of triggers can be passed through breast milk, and our first doctor said that it's not. I figured it's worth a try, though, based on what other moms were saying. So I decided to cut out dairy and soy from my diet. I didn't think it would be difficult, but I was wrong. What was I thinking?! I love cheese! I love sour cream! I love ranch dressing! I love chocolate! And soy seems to sneak into everything (even vegan Thin Mints. Come on!!) I decided I'd ask the gastroenterologist her opinion, to see if this is even worth it.
Yesterday we went to the gastroenterologist at the University Hospital. This doctor has 10 patients currently with FPIES, and that is definitely considered a lot. We had already seen the experienced allergist, but wanted to make sure we had all of the information possible and all opinions. This doctor confirmed the diagnosis of FPIES, agreed with the plan from the allergist on how to start foods, confirmed that at age three we'll do a trial in the hospital of milk, soy, and whatever else she 'fails', and gave us another letter to take with us whenever she has to go to the ER. Same information, but comforting to have consensus.
So, I was hoping that I would bring up the fact that I've stopped eating dairy and soy, and she would say that wasn't necessary because it doesn't seem to be passed through breast milk. Wrong again. She said it was a good idea, and I should stick with it at least a month to see if there's a difference. Oh no! You were supposed to tell me it was unnecessary! I think I asked three times, just in case she wanted to change her mind. As I daydreamed about Mexican and Chinese food, she said to me, "You're in this together." And that reminded me, I'd do anything for this little girl. If it turned out she could only tolerate something crazy like eggs and olives, then I'd be making the most delicious olive omelets, egg stuffed olives, olive juice soup with eggs... you get the picture, I'd make it work. So I will make it work.
As I rocked Acorn to sleep tonight, I silently told her that we are in this together, and will always be in it together; whatever 'it' may be. I imagine that any time she hurts, I will hurt. My body gave life to her, she was once a part of me, so I will always feel what she feels. It reminded me of a time many years ago, when I was about 15 years old (18 years ago!). I'd happily left on a date, and came home crying. He had broken up with me, and man did that hurt. As I cried to my parents about it, my mom cried too. Why are YOU crying? You are so emotional! I really didn't get it. But now I do, I totally do.
A few years ago, single and childless me wrote a poem for my future child, and it ends like this:
I would cross over rocks
and tread through water
to say this to you, my son or daughter,
I love you because I've always known you
Inside my heart is where I've grown you
But now I know, rocks and water are nothing, my dear. Throw me hurricanes and avalanches and we will get through. You are an oak tree and I am... a mom. We're in this together.
After our first hospital visit on January 19th, Acorn stopped sleeping through the night. Prior to that, she was a champion sleeper. I figured she definitely got that trait from me; I could win awards for how well I sleep. I mean slept. Now she wakes up every 1-3 hours throughout the night, an average of four times each night. It's excruciating trying to function on about five hours of sleep total, and those are broken up through the night. A mental health therapist is not a job where you can just slip under the radar through the day, yawning and dozing off. I have perfected the art of yawning without opening my mouth, and making the most of five minute power naps between clients. At first I figured her sleep regression was due to trauma at the hospital and getting out of her normal routine, but I've now read that some people find their FPIES kids don't sleep as well when they are getting their trigger foods from breast milk. It sounds like there is not much agreement about whether these types of triggers can be passed through breast milk, and our first doctor said that it's not. I figured it's worth a try, though, based on what other moms were saying. So I decided to cut out dairy and soy from my diet. I didn't think it would be difficult, but I was wrong. What was I thinking?! I love cheese! I love sour cream! I love ranch dressing! I love chocolate! And soy seems to sneak into everything (even vegan Thin Mints. Come on!!) I decided I'd ask the gastroenterologist her opinion, to see if this is even worth it.
Yesterday we went to the gastroenterologist at the University Hospital. This doctor has 10 patients currently with FPIES, and that is definitely considered a lot. We had already seen the experienced allergist, but wanted to make sure we had all of the information possible and all opinions. This doctor confirmed the diagnosis of FPIES, agreed with the plan from the allergist on how to start foods, confirmed that at age three we'll do a trial in the hospital of milk, soy, and whatever else she 'fails', and gave us another letter to take with us whenever she has to go to the ER. Same information, but comforting to have consensus.
So, I was hoping that I would bring up the fact that I've stopped eating dairy and soy, and she would say that wasn't necessary because it doesn't seem to be passed through breast milk. Wrong again. She said it was a good idea, and I should stick with it at least a month to see if there's a difference. Oh no! You were supposed to tell me it was unnecessary! I think I asked three times, just in case she wanted to change her mind. As I daydreamed about Mexican and Chinese food, she said to me, "You're in this together." And that reminded me, I'd do anything for this little girl. If it turned out she could only tolerate something crazy like eggs and olives, then I'd be making the most delicious olive omelets, egg stuffed olives, olive juice soup with eggs... you get the picture, I'd make it work. So I will make it work.
As I rocked Acorn to sleep tonight, I silently told her that we are in this together, and will always be in it together; whatever 'it' may be. I imagine that any time she hurts, I will hurt. My body gave life to her, she was once a part of me, so I will always feel what she feels. It reminded me of a time many years ago, when I was about 15 years old (18 years ago!). I'd happily left on a date, and came home crying. He had broken up with me, and man did that hurt. As I cried to my parents about it, my mom cried too. Why are YOU crying? You are so emotional! I really didn't get it. But now I do, I totally do.
A few years ago, single and childless me wrote a poem for my future child, and it ends like this:
I would cross over rocks
and tread through water
to say this to you, my son or daughter,
I love you because I've always known you
Inside my heart is where I've grown you
But now I know, rocks and water are nothing, my dear. Throw me hurricanes and avalanches and we will get through. You are an oak tree and I am... a mom. We're in this together.