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July 5, 2004
http://f2.pg.photos.yahoo.com/ph/groatmans/album?.tok=phWiwXBBFnm3tO9a&.dir=/8b72&.src=ph
Hi. That is a link above to see some really cute pictures of Maddie and Emma. Please take a look. Most are from this weekend.
So, I'm so frustrated. I'm actually asking for advice this time. I'm fairly sure people read my diary. I haven't received any posts since late April, but I'm not a big poster myself so I understand.
Anyway, I am so completely frustrated with Emma. I feel like I've been on this rollercoaster with her and I want to get off, give up, throw in the towel. I've had enough. You may know that she has been diagnosed with reflux disease at 18 months. She basically does not eat much and it is a constant struggle to maintain her weight. This has been going on forever. She has been on Zantac for almost a month now. Well, initially after being on the medicine she had a huge improvement. There were a few days that we were amazed at how well she was eating. We thought, wow, this is it. They found out what was wrong with her and are making it better. We thought it would be slow, but steady improvement until eventually we might actually have a normal child who eats like a normal person. Wrong. It's almost like we are going backwards. I am back to the desperate state we were when we demanded help for her and they sent her to CHOP. I am back to practically bending over backwards to get her to eat anything. I used to have such high standards for what I would allow my kids to eat. Everything they (or Maddie) ate was free from artificial colors, sweeteners, hydrogenated oils, etc. Usually she had organic foods and normal supermarket food was not in my house. Maddie was practically three before she was allowed to have chocolate, halloween and Easter candy. And tonight I stood in the grocery store and stocked my cart with all kinds of less than healthy foods all in the hopes that maybe she would eat it. I even purchased her a hershey's cookies and cream milkshake because if she consumed the whole bottle it would mean 580 caleries. A year ago I would have thought you were insane if you even considered that I would offer that to my 1 1/2 year-old baby.
My point is here, I don't know what to do for her anymore. I feel as though I have tried everything in my power, every game, every strategy I can think of and then more to get her to eat. And it's not working. I always knew this was a possibility, that I wouldn't be enough to save/fix her. The doctor's said there was a very good chance that she would have to be retaught how to eat. She associates eating with pain. It's not my fault. I am not blaiming myself. I feel like I have given a valiant effort. But I am ready to ask for help, plead for it. Even if it means astronomical medical bills. She's not even being manipulative. Even if it means a feeding tube. She is the sweetest, most loveable baby. Everyone who meets her adores her. It's just that she thinks that eating food is going to make her feel pain. It's so sad. Obviously I'm not going to give up on her. Even though I'm tired of all of this and don't know what to do with her.
So, my question for you is, should we go back to CHOP and put her in the feeding program? Or should I wait? Even if it means having to find someone to watch Maddie everyday for weeks. Our insurance only covers 80% of our medical expenses. So far we already owe $1,000 for one test that she had ($500 deductable and then 20%). I imagine when this is all said and done we will owe about $6,000 (there is a cap on how much we can pay). That is a lot of money. Obviously she is important enough. But should I hold out hope that we can handle this on our own. Please let me know what you think. I don't know what I should do.
Well, I better go. My husband would like to use the computer. I appreciate your reading this and appreciate any advice and prayers. Thank you.
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