Bread and Peanut Butter

It has been nearly a month since my son has wanted a bite of bread and peanut butter. He's been sick with infections of different sorts, on and off three different antibiotics and back on 100% GJ feeds.  I get so excited when he's 100% oral Peptamen Jr. and so discouraged when that number dwindles to zero.  After four years you would think this "normal" would just be--well--normal! But it's not.

Sometimes I still can't wrap my  mind around this Noonan Syndrome thing.  I don't question where the syndrome came from because there are no answers. It just "is."  But where is it going? What will the future look like? Will he ever learn to live on table food? Will his little body ever learn to tolerate table food, save two bites a day?  How can food be the enemy?  How can I eat too much and he eat too little?  I am laughing at myself right now.  I feel guilty with a scoop of ice cream and yet I am exhilarated when my son eats one bite! Oh, the craziness!

But in all seriousness, from one mom of a tubey to another, let's take a big breath together and be so thankful for the technology of the various tube feeding products! Because of these I do not have to be afraid of dehydration anymore, nor of malnutrition.  And with all the complexities that we cannot turn on and off, at least we have the power to pump in the calories!  Wow, what an amazing blessing!



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