Monday, May 16, 2011

Tallulah's Birthday during National Eosinophilic Disorder Week

This week is National Eosinophilic Disorder Week. I have to admit that until just a couple of weeks ago I did not realize that such a week existed. The fact that Tallulah's Birthday is during this week feels poignant indeed. How do you make a Birthday Party without Birthday Party food? I don't know why I'm so hung up on this, but one of the first things that really got me about Lu's EE was the idea that she couldn't even eat her own Birthday Cake. I remember thinking about it back in January and today it is hitting home harder than ever. Because Lu LOVES Birthday Cake. Anything that looks fun and frilly or has whipped cream on top she points to and calls 'Happy Cake!'- her term for Birthday Cake. She has been pointing to things she can't have and calling out names for them a lot more these past few weeks. And she has also been eating a bit more of the things she can have along with her tube feedings each day. It is encouraging. I'm happy to see her appetite returning and her interest in real foods renewed. But the things she asks for are Happy Cake, toast, egg, yogurt, milk, cookie and ice cream.

For Lu's autism we practice a kind of therapy called PRT during her downtime from other ABA and speech therapies. It's a child led approach where you basically watch to see whatever the child wants, even if it is something that involves a repetitive behavior or obsession because you want to find the things that motivate the child most and use those motivators to create language opportunities. What it comes down to in the eye of the casual observer is that we pretty much give Lu anything she asks for. If we can get her to say it, we give it to her immediately. I have been criticized for this by other parents. 'You can't just give them everything they ask for. They'll walk all over you.' Yeah, easy for you to say with your typically developing child who is able to ask for everything under the sun. If Lu ever gets to the point where giving her what she asks for becomes a problem and seems like spoiling her, well I will be the happiest spoiling parent ever! And we will cross the bridge of teaching her she can't have everything she wants when we come to it. For the time being the focus is still convincing her that there are enough amazing things in this world that it is worth the time, trouble and effort to speak.

However, her renewed interested in food does put a bit of a damper on all of this. She is clearly and loudly asking for things she sees other people and other kids have, but we won't reinforce her requests with the things that she is asking for. I can see her get frustrated. I can see her get mad. She is trying so hard to get through to me, and I do understand, but still I say no. I worry sometimes about messing up the therapy by refusing requests that at any other time we would have fulfilled. How can she understand why I won't give her a glass of milk? I used to give her milk all the time. And suddenly I won't do it anymore. Once she even broke down in tears and wailed "Why? Why?" when I wouldn't give her milk. What (*@$% expletive) mother won't give her kid milk?

I hate EE. I hate it. I want to feed my baby. I want to feed her real and normal food. I want to give her the same kinds of foods that she sees other people eat every day. I am so grateful for the feeding tube system that is keeping her alive, that allows her to grow and thrive, but I hate not being able to give her the food she wants to eat. I want to let her have her favorite ice cream Birthday Cake.

I know there are recipes, there are things to try. I have tried some, but it's just not the same. And after our foray into the world of GFCF diet, I think that Lu might be a little like me. I would rather not have coffee than drink coffee black. I love cream. I love sugar. They are at least half of what I like about coffee. Maybe what I really like is coffee flavored sweet cream. When we tried all the substitutions on Lu it seemed that she would rather not eat those foods than eat the dry, dense, different versions. She would rather eat entirely different food. Or no food at all. Which brought us to the tube.

So what are we going to do for our baby's Birthday Party? The idea we settled on was a chocolate fruit fondue. We found a pretty good chocolate that is completely allergen free. I need to test out how it melts and coats things. But she loves chocolate strawberries. I figure we can just have several trays full of fresh fruit and dip thing after thing into the chocolate. That could seem pretty special, right? And maybe we can try to make some homemade ice cream out of rice milk and frozen crushed fruit or something. And she can still have popcorn and certain potato chips. I better figure it all out pretty soon. Her birthday is tomorrow and the party is on Sunday.

Happy Birthday Baby! 4 years old. Such a big girl who has already been through so much.


Alicia Hart said...

One of our first allergy free birthday cakes was a bunch of strawberries and chocolate! She'll love it! :)

Nathan's Mommy said...
This comment has been removed by the author.
Nathan's Mommy said...

I think you've got a great idea that will make wonderful memories for the years to come! Don't you wish that our kids could catch a break at least one day out of the year on their birthday's so they could eat anything they wanted and not get sick! I am amazed by all of these though kids who have this horrible disease and know that I couldn't be nearly as brave and strong as they are having to life their life this way! Happy 4th birthday Tallulah!

Alison said...

Oliver's birthday is this week also, he'll be two. It is strange to me that his birthday falls during this week, especially since a year ago on his birthday he had his first GI visit and we truly started down the path we are on now. Happy birthday to Tallulah!

mom-b said...

Something about may? We celebrated last week, as did our little EE friend in the neighborhood!!! Wow!
We made the cherrybrook farms GF allergy free chocolate cake.... of course Roe wouldn't eat it but it wasn't bad.