I appreciate this blog. I am a talker (in case you hadn't noticed). My posts are often simply reflective of our reality, of what I have learned from it, and sometimes just putting out what we are going through in hopes I can learn from others who read and have experience, knowledge and insights to share. I process through my thoughts by talking them out. They aren't always positive thoughts. We're all human, read what Little Henry's mom has to write about that. As I read her words, this mom of 4 catching up on her blog as well, updating on how she and Henry have been doing; I marvel in how closely united we all really are.
Our FPIES world has been difficult again lately as Little Man now turns 2 1/2 and we were supposed to be "growing out of it" by now....and in many ways I feel we are being pushed back to the beginning. Little Man is thriving on TPN (IV nutrition), and I am so.very.grateful for that. He has gained 6#- we are about to hit 30# now, as the geneticist that we saw last week pointed out, it is encouraging to see that his body knows what to do with calories, calories that his gut does not have to absorb (or malabsorb in his case). It IS good, it is all very good. But he is now becoming dependant on this TPN, he has less interest in even eating- how do we do trials when he only nibbles? He is 2 1/2 and has no positive relationship with food except to give food to his brothers and watch them eat. And I am struck with the "what if". What if he isn't outgrowing this? What if we don't find him safe foods? What if we find him safe foods that he refuses to eat, or doesn't know how to? What if his body begins to reject the TPN? What if there is something more going on that we are missing? What if there is some metabolic disorder that is compounding his FPIES that we haven't tested for yet? What if this new normal is our normal now? What if?
I trust in God, it is the thread keeping my peace....I have inner peace knowing that His plan is being carried out. My worry remains with what part I am playing in that plan. What does He want me to be doing? Am I doing enough?
Joy, I am humbled by your mention of my post. I certainly look up to you and much of that is due to your honesty and williness to be transparent. It lets others of us know that we are not alone in our thoughts, our worries, and our common fears. I see and respect you as a mother who is doing much more than enough. You have educated so many and given so many other mom's hope by connecting us to both information about our kids condition, as well as to each other. I can only thank you for all that you've done and are doing. More than anyone else I can think of, you you have whole heartedly fought for Sam and worked and studied to make him better. Rest in that sister, you are an amazing woman and Mom. There may be other pieces to the puzzle, I will pray that if so, God will bring this to light.
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