Friday, February 21, 2014
Books I read in 2013
I saw another friend with a blog list all the books she read last year with a simple rating system and thought it was a great idea and an easy way to recommend some good books, so I'm going to straight up copy her. Here is a picture of my book list, thanks to Good Reads (scroll down for my rankings):
Monday, February 10, 2014
Feeding Tube Awareness: what i wish i would've known from the beginning
This week is Feeding Tube Awareness Week. The idea is to spread knowledge about feeding tubes, partly so that when a family is brand new to tube feeding, it won't be so scary and foreign. Here are some of the things I wish I would have known when we started tube feeding.
First, the basics. Here are the two types of feeding tubes Joshua has used. This one is called an NG (nasogastric) tube, because it goes in through the nose and down to the stomach.
This one is called a G (gastric) tube. It looks kind of like the blow hole on a beach ball. You will have to learn some new equipment and procedures in order to use these tubes. At first it will seem intimidating, but you will get the hang of it really quickly. You will even learn how to replace the tubes by yourself, and this will save you lots of stress and trips to the doctor's office.
Second, all the things that you will be able to do: I initially had the idea that life would be really limited as long as Joshua was on a feeding tube, but that has not been the case at all. We can and do feed him almost anywhere - at restaurants, in the car, at the zoo, etc. Also, he is able to fully participate in normal toddler activities. He can swim (he's not doing laps or anything, but we can take him into swimming pools), he can play on the playground, he can tackle his dad - all the same activities he would be doing if he ate exclusively by mouth. Plus, there are some new vocabulary words that he has learned and new options for imaginary play (pictured below) as a result of having this added component in his life.
Third, you are going to be the number one expert on and advocate for your child. As long as he is tube feeding, expect that you will know more than many of your child's doctors about what tube feeding is like, what your child can handle (as far as volume and rate and whether something is wrong), and whether your child should be weaning faster or slower than they predict. Doctors are a great resource and can offer great information and help within their particular field of specialty, but many doctors have not been extensively trained on feeding tubes, and it's best to be prepared for that.
Fourth, what it's like: I don't mean to overplay the positives of tube feeding. It can be lonely and scary and stressful. There will be extra doctor's appointments and ER visits. We are eager for the day when Joshua eats all of his food by mouth, and we are hopeful that he will get there this year. But in the meantime, we are grateful that we have a guaranteed way to give him all his food and hydration and medication, whether he's sick or well. I'm relieved that he can work on his oral aversions at his own pace, and that I don't have to push him beyond what he can handle because he has an alternative way to get the missing calories. I have shed many more tears and sent up many more prayers trying to get Joshua to eat orally than any issues related to the feeding tube. The feeding tube actually relieves an enormous amount of stress, because I know that Joshua will always get the nutrition he needs, whether he's willing to eat or not. In the beginning, it was a tool that kept him alive; now, it allows him to keep growing and developing on pace while he continues to learn to eat.
Fifth, it helps to make friends: If you find yourself in the situation where you or a loved one suddenly has a feeding tube, it really helps to reach out and meet other people who are familiar with tube feeding. Facebook is a great tool for this. I love the group Feeding Tube Awareness, and there are often groups available for your child's particular condition.
First, the basics. Here are the two types of feeding tubes Joshua has used. This one is called an NG (nasogastric) tube, because it goes in through the nose and down to the stomach.
This one is called a G (gastric) tube. It looks kind of like the blow hole on a beach ball. You will have to learn some new equipment and procedures in order to use these tubes. At first it will seem intimidating, but you will get the hang of it really quickly. You will even learn how to replace the tubes by yourself, and this will save you lots of stress and trips to the doctor's office.
Second, all the things that you will be able to do: I initially had the idea that life would be really limited as long as Joshua was on a feeding tube, but that has not been the case at all. We can and do feed him almost anywhere - at restaurants, in the car, at the zoo, etc. Also, he is able to fully participate in normal toddler activities. He can swim (he's not doing laps or anything, but we can take him into swimming pools), he can play on the playground, he can tackle his dad - all the same activities he would be doing if he ate exclusively by mouth. Plus, there are some new vocabulary words that he has learned and new options for imaginary play (pictured below) as a result of having this added component in his life.
Third, you are going to be the number one expert on and advocate for your child. As long as he is tube feeding, expect that you will know more than many of your child's doctors about what tube feeding is like, what your child can handle (as far as volume and rate and whether something is wrong), and whether your child should be weaning faster or slower than they predict. Doctors are a great resource and can offer great information and help within their particular field of specialty, but many doctors have not been extensively trained on feeding tubes, and it's best to be prepared for that.
Fourth, what it's like: I don't mean to overplay the positives of tube feeding. It can be lonely and scary and stressful. There will be extra doctor's appointments and ER visits. We are eager for the day when Joshua eats all of his food by mouth, and we are hopeful that he will get there this year. But in the meantime, we are grateful that we have a guaranteed way to give him all his food and hydration and medication, whether he's sick or well. I'm relieved that he can work on his oral aversions at his own pace, and that I don't have to push him beyond what he can handle because he has an alternative way to get the missing calories. I have shed many more tears and sent up many more prayers trying to get Joshua to eat orally than any issues related to the feeding tube. The feeding tube actually relieves an enormous amount of stress, because I know that Joshua will always get the nutrition he needs, whether he's willing to eat or not. In the beginning, it was a tool that kept him alive; now, it allows him to keep growing and developing on pace while he continues to learn to eat.
Fifth, it helps to make friends: If you find yourself in the situation where you or a loved one suddenly has a feeding tube, it really helps to reach out and meet other people who are familiar with tube feeding. Facebook is a great tool for this. I love the group Feeding Tube Awareness, and there are often groups available for your child's particular condition.
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