Archive for May, 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.

Myffy Preschool Update

Shortly after that last post I got a call from The Montessori school to say that they had a spot for Myffy at last. I was expecting them to say it was a spot for Fall Enrollment, but amazingly they said she could start that next Monday! So she did. Unfortunately Lu woke up at 2:30am that morning, which is not unusual in itself. I always call the hour between 2:30 and 3:30 the witching hour because Lu almost always wakes up then, but if she doesn’t, then we’re usually good on through to a normal morning hour. The unusual thing about this morning was that she never, ever went back to sleep. I took Lu into the other bedroom in the hopes that at least Myffy could get a little more sleep before her first day of school, but it made a rough morning for all of us. I dropped Myffy off at 8:30am with her hat, coat, change of clothes, sunscreen, lunch box, indoor shoes, outdoor shoes, hand sanitizer, tissues, snacks and all the other things they ask you to bring on the first day of preschool. She was kind of interested as we hung her coat, hat and lunch box on the peg under her name, but then the moment she realized I was leaving her there, this new incredible, earth-rending wail that she has developed lately burst from her and the screaming fit began.

The door closed, but the sound followed me all the way down the hall and through two sets of doors, faded away as I walked around the building, but then met me again through an open window as I got into my car and drove away. I glanced in my mirror. Both car seats were empty. I was alone in my car without any kids. It felt really strange. Like my heart involuntarily jumped a little at the sight even though I know neither kid should be there right then. I headed home to where Lu was doing her ABA therapy and would need me to do her tube feeding in a couple of hours. I spent the next 40 minutes doing all kinds of things I keep meaning to do around the apartment but never seem to find time to do, until the phone rang. It was Myffy’s school. I could hear Myffy screaming in the background, just as she had been when I left her. She hadn’t stopped. They suggested I come get her. Poor baby. Crying like that for a whole hour without stopping. When I got there she was still crying. And she was exhausted. When she saw me her face lit up, she lunged out of the teachers arms and started yelling “Momma! Momma!” I took her into my arms. She quieted down. The crying reduced to sniffing while I talked to her teacher about the best way to ease her into all this. Then Myffy pointed and said “Culla (aka color), culla” referring to the easels where some of the kids were painting. At least she noticed that there were fun things to do in the classroom.

On Wednesday I cancelled my dentist appointment and cleared the whole morning so I could stay at school with Myffy. She started crying as I took off her coat this time and clung to me when we went into the classroom, but I sat down with her, let her sit in my lap, and cuddled her until she calmed down. After awhile Myffy got comfortable with me there and started venturing out a little. Just a few steps at first, then she turned back and launched herself into my lap with a “Momma” and a smile. Then a few steps more. Then she went to check out the birds. And then the fish. And then the instruments. And then the painting area. After two hours I got up to leave. She got upset again, but it was time to go outside right about then and the teacher told me afterwards that she really liked the rabbits and the garden. She cried a little more when she went back inside, but she cried herself to sleep so they put her down for a nap. They didn’t call me until she woke up at 1pm.

The next several days we decided to have her stay form 8:30-10:30 each day and each day it got a little bit better. The hard thing about waiting for them to call and tell me whether or not I need to pick her up is that I either have to pick her up before 10:30 or wait until after Lu’s tube feed and I’ve dropped her off for her afternoon preschool class all the way across town and drive all the way back which makes it around 1:30 before I can come back for Myffy. We’re fitting in both of their ABA, Speech and OT therapies around these 3 day a week preschool classes. Today was Myffy’s 3rd Monday in a row, and today she stayed at school from 8:30-2:30 with a nice big long nap in the middle. She started crying when I got her out of the car, and tried to hold on when I left her there, but when I arrived to pick her up, she wasn’t crying or upset at all. She was standing on a step stool helping the teacher wash the dishes from snack time. The teacher sudsed them up, and handed them to Myffy, and Myffy held them under the tap to rinse all the soap off. She didn’t even see me come in. I got to stand there and watch her for a few minutes before she turned. When she saw me she smiled, put her dish down carefully, stepped down off of the stool and ran to me for a great big hug. Go Myffy Go!