I guess you could say I’m taking the job as Kiran’s advocate even further as of late.  I have been working to consolidate his medical care wherever possible, and I am questioning each specialist for what they actually bring to the table (and if I feel it is worth the extra appointment time).

For us, I feel our GI appointments have been a bit of a waste of time.  I have never exactly understood the purpose, to be honest.  Kiran gets weight checks regularly with the home health nurse, and I always felt all my other GI-related questions were answered with information I already knew or pushed off to others (like feeding clinic therapists).  Thankfully, our GI doctor agreed with me, that as long as our pediatrician is comfortable taking over G-tube care, we can consolidate in that way.  He will be a resource if and when we need him, when things change down the line.

Nutritionist.  Again, I hate that my blog posts seem so negative around medical care professionals lately.  However, I should not be teaching someone something pertaining to their area of expertise.  Both times I have met with her, I have asked her about something she’s never heard of before.  This last time, it was about a relatively new milk substitute.  I just feel that’s a big piece of nutrition – a lot of people cannot handle cow’s milk for various reasons – I would think as a nutritionist, you’d want to keep up with all the new research and products out there when it comes to this kind of thing.  And it’s not even super obscure – Target and Whole Foods sells it!  I guess I am just frustrated when my own efforts gain me more information than meeting with the experts does.

I am pretty sure I have decided we no longer need to see a nutritionist.  I wanted to see her to get started on the blenderized diet, but now that I have a framework and an understanding, I certainly don’t feel the need to regularly follow up.  Especially since her last request was to get a three-day food log to analyze down to the micronutrients to make sure Kiran is getting what he needs.  Mind you, Kiran has no GI issues, other than he doesn’t eat enough by mouth and is fed through a tube.  I can understand if we were monitoring another health concern like diabetes, and we needed to closely monitor his intake of sugars.  But if he were an oral eater, I am fairly certain no one would be concerned about his nutrient levels.  He’d likely be subsisting on grilled cheese sandwiches and glasses of milk.  I am blending far more healthy foods for him than most kids his age are eating, and he gets a multivitamin every day to boot.  I’m just not doing it.  It’s too much work that I don’t see the benefit from.

I guess you could say I am craving normalcy.  I know we will always have more appointments than other kids.  We are currently trading out the medical appointments (thanks to my consolidation efforts) for therapy appointments (especially once we get scheduled for the feeding therapy!)  I know we have important things to keep an eye on and closely follow up on.  I would never cut out the crucial things in favor of normalcy.  But I will continue to stand up for my rights as his mother and for his rights as a 14 month old boy.  I will continue to question specialists if it is really necessary to continue follow-up care with them if I am just not seeing the point.  And I will continue to build a team around me that is smarter than me, even if that means continuing to play musical chairs with our medical support system.

I am no longer operating on fear.  I am no longer simply doing what I am told.  I am questioning.  I am advocating.  I am doing what I feel is best for my son and for my family.


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