Planning and approaching Ellie's birthday this year was much less dramatic than her first birthday. First birthdays are full of expectations and ideas, and with FPIES I had to grieve the loss of the social accepted norms in order to embrace our new normal. This year I was determined to create a fun second birthday for Ellie that was food free, and as stress free as possible.
The first thing I realized was that I did not want to have the party in my home where I would be expected to provide food, or I would have to watch for cross contamination. The second thing I realized was that I still wanted to have the party nearby so that Ellie could enjoy it on her schedule, and I would not have to pack and bring a truck load of her broth formula. I began calling around, and the third thing I noticed was that all party packages came with food!
I took a step back. Balloons are a risk for Ellie due to corn starch. Food is a risk to Ellie. What can we do for a party that everyone would have fun, and these things would not be an issue. The zoo! The zoo would be a place that all ages could enjoy.
Hopeful, I sent an email to their birthday party coordinator, explaining our situation and asking if they would be willing to let us reserve their picnic area and hold a birthday party without the food portion of their packages. (By the way no balloons are allowed in the zoo for the safety of the animals, and monkeys like Ellie) I cross my fingers, and sure enough! Their events coordinator was fantastic. Kind, considerate, and more then gracious, she helped tailor a birthday party just for Ellie.
Our birthday invitations explained that our party would be for an hour in the zoo picnic area reserved just for us, but that they could arrive early and stay late to enjoy the entire day in celebration of Ellie turning two. Guests were welcome to pack a lunch or eat in the park, but thank you for understanding that there would be no cake or food provided due to Ellie's food free day. Instead there were more than enough carousel rides for everyone, and even though it was not part of the package, we were all treated to a train ride as well.
By the end of our time at the zoo, I was convinced I had made the right choice. I was so pleased with the fun had by all, especially Ellie, and especially her great grandparents who are in their 70's and who enjoyed the carousel and train rides as well. I would highly recommend the Sacramento Zoo as an FPIES and food allergy friendly birthday choice, and we may choose to do it all over again next year!
Showing posts with label new normal. Show all posts
Showing posts with label new normal. Show all posts
Sunday, August 28, 2011
Friday, July 22, 2011
Prognosis
As we near Ellie's second birthday, all of those same questions keep coming up about her future, as well as some new ones. Since I have been asked them so many times, I can only guess there are others who are thinking them as well, so here are the answers.
Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)
No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.
If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.
Will she have this forever?
No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.
Why are you changing the whole family?
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?
Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)
No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.
If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.
Will she have this forever?
No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.
Why are you changing the whole family?
For two reasons:
First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!
Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.
Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.
What about after she is better/no longer reacts/is no longer severe?First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!
Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.
Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?
Thursday, March 17, 2011
Our New Normal
I have always wanted to go to Italy. Seriously. Ever since college I thought it would be fantastic to visit Rome. The history there would be incredible. Granted, I have heard its pretty dirty and Venice canals are pretty mucky. But seeing the sights would have to make it all worth it. Right? Who wouldn't want to go to Italy?
But it will be a long time before I can consider traveling to Italy. I can't even figure out how to get broth to New Jersey. So this summer we are going to focus on camping. That is our new normal.
Our new normal does not include restaurants, but it does include family dinners. It includes being at home most of the time, and packing an ice chest when we go out. It includes making hard adjustments such as doing almost all of our grocery shopping at the farmer's markets, which requires much planning because they are not open 24-7 like the local Wal*Mart. It includes very little sleep, and feeding a bottle to a 19 month old multiple times throughout the night. It includes almost needing a nurse for child care, and wondering if we will ever get to normal things like potty training. It includes hours in the kitchen, and rethinking,...well....just about everything. It is our new normal.
I was truly blessed to be introduced to the new normal last September. A new friend knew exactly what I needed. It was divine timing. Here is the famous poem that touched me tremendously. Grab a tissue first if you are the parent of a chronically ill or disabled child. And by the way, my favorite flower has ALWAYS been the tulip. Good thing I don't believe in coincidences!
But it will be a long time before I can consider traveling to Italy. I can't even figure out how to get broth to New Jersey. So this summer we are going to focus on camping. That is our new normal.
Our new normal does not include restaurants, but it does include family dinners. It includes being at home most of the time, and packing an ice chest when we go out. It includes making hard adjustments such as doing almost all of our grocery shopping at the farmer's markets, which requires much planning because they are not open 24-7 like the local Wal*Mart. It includes very little sleep, and feeding a bottle to a 19 month old multiple times throughout the night. It includes almost needing a nurse for child care, and wondering if we will ever get to normal things like potty training. It includes hours in the kitchen, and rethinking,...well....just about everything. It is our new normal.
I was truly blessed to be introduced to the new normal last September. A new friend knew exactly what I needed. It was divine timing. Here is the famous poem that touched me tremendously. Grab a tissue first if you are the parent of a chronically ill or disabled child. And by the way, my favorite flower has ALWAYS been the tulip. Good thing I don't believe in coincidences!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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