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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Friday, August 12, 2011

Accepting, embracing, and moving forward

After moping and questioning and being paranoid for 2 weeks, I'm finally feeling ready to move forward. It really is difficult to put into words why a successful transition from GJ tube to G tube (intestine feeds to stomach feeds) has been so hard for me to accept. I'll try anyway though. First, when you spend 18 months of your child's life trying to document every little detail of her life in hopes that something will be the key to finding an explanation/diagnosis that never comes you end up questioning yourself and questioning whether there even IS something wrong. I know logically that makes no sense because there definitely is something wrong with a baby that vomits 8 or 10 times a day.
And second, when test after test comes back normal though, you start to feel like you are the problem with the equation, especially when you fly her across the country to see a specialist and her symptoms suddenly disappear, only to reappear when you get home. When nobody can find answers and the problems start going away as mysteriously as they started, it weighs heavily on a mother's heart whether that's logical or not. Emotion is rarely logical though. Oh, yeah, and then there's that whole part about how if something seems too good to be true, it probably is. Like a baby who vomits non-stop for 18 months and then suddenly stops...
For the last 2 weeks, I've been living cautiously and waiting for the other shoe to drop. I didn't used to be a pessimist, and I still don't consider myself to be one, but I think sometimes the loss of naivety closely mirrors pessimism. I never meant to look at the situation with a negative point of view, but we've had so many experiences where we've tried to be positive and take steps towards getting Raya to eat, etc. and had them turn out negatively. That makes it hard to trust in the process because it makes me feel like I'm going through a maze with a blindfold on sometimes. And finally, I'm slowly accepting the fact that even though God answers prayers, that doesn't mean He'll explain the answer. That's where faith comes in. When you're asking for miracles, you don't put conditions on your request, and I guess that's what I've been doing. Knowing that we will probably never fully understand the medical reasons for everything (or anything) that Raya has gone through is a hard pill to swallow, but I have faith that if and/or when God wants me to understand those things, He will show them to me. In the mean time, it's time for us to accept the blessings we've been given and move on. In other words, take it and run! :)
We hit a really exciting milestone today that has helped me to feel more ready to let go of the pain and frustration of the last year and a half and look forward to the next phase. For the very first time in her whole feeding tube life, we were able to subtract formula calories from today's feeds because she ate enough of something to replace them. That is HUGE for Raya. She consumed about 100 calories at breakfast and about 50 at dinner. I never thought I'd be counting calories for my 21 month old, but I can't tell you how exciting it is that she ate enough calories TO count! Her doctor said that for now, as long as she's still getting 750 formula calories, she can fill in her other 150 with food as long as she eats at least 100 calories of something healthy. Today, she had oatmeal with banana and black beans & corn. For now, the excitement of having that happen today for the first time is helping me to not think about the fact that EVERY time she eats pureed food, she has to have a bath, which means at least one a day. :) When she eats oatmeal, I end up putting Raya AND the high chair and her bowl & spoon in the shower so I can clean them all at once. Hope all that oatmeal doesn't clog the bathtub drain but it's SO much easier than trying to wash her and then trying to clean up the oatmeal that dries hard as a rock while I'm cleaning up Raya. :)
A few months ago, I had let go of the idea that she'd be eating by a certain point because that was a sad thing for me. Not that I had given up on her, I just had to stop dwelling on something that was out of my ability to control. Putting a time line on a child with unpredictable special needs, at least for me, is setting the stage for frustration and disappointment, so I stopped trying to do that. Now that things are turning another corner, I'm feeling like I can make some new goals for us again. One of the next big goals we have is to get Raya off of her night feed. If we can work her stomach up to tolerating larger amounts at a time, she'll be able to have more during the day so she doesn't have to be on the pump at night. At that point, we could move her out of our room, which would be nice since she's coming up on 2 in a couple months. :) We've never kept any of the kids in our room as long as we have with Raya, but as long as she's being fed overnight, she needed to be in our room for safety and convenience reasons. Not to mention that there's very little likelihood of either of us waking up if the pump alarm goes off when she's in the kids' rooms. :)
She had a weight check on Wednesday. She's now up to 11.47kg, which is a little over 25 lbs. I'm pleased with that and so is her doctor. (Now if we could just get some weight on her "big" sister, who is over 2 years older but only outweighs her by 5 lbs...) I have a few more things I'd like to do with Raya in the next couple of months but I need to talk to her doctor first. I'm so grateful for a doctor (and heer amazing nurse) that listens, values my opinion, and trusts my judgement enough to give me some leeway when I ask for it.
Well anyway, that was a long way of saying I've accepted the unexplained progress and I'm excited about making whatever steps forward that Raya's little body can handle. I'm sure there will still be bumps in the road along the way because a child who eats through a hole in her stomach is bound to have SOMETHING come up here and there, but now I feel like we're ready to get back out on the road and at least try to move forward.

1 comment:

  1. Welcome to Holland.
    And if it's any consolation, I'm still waiting for the other shoe to drop, but it's become less of a present thought and more back of the mind. But it's still there. Probably won't ever go away.
    And oh, to be blissfully ignorant of feeding tubes, surgeries, therapies and insurance hassles. :)


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