Saturday, October 24, 2009

Its up and its down

I am very impressed with my wife. She is a dietitian, classically trained chef, and when motivated, as dedicated and driven to achieve her goals as anyone I have ever met. Grover is testing this resolve to the fullest extent of his abilities.

She has introduced a gluten free diet to our family - which has improved Grover's physical condition, and all but eliminated Avery's arthritis. She even took it a step forward and implemented the SCD diet. Physical results improved even more within days.

I tell her amazed I am that she has been able to uncover and link the nutrition/diet to the physical ailments present within our children. I am a very lucky guy.

Our dinner last night started out great - a nice smoothie mixture of avocado, banana, coconut milk. Grover ate it bite after bite. As soon as he saw a new food item coming his way - the mood changed. Arched back, mouth sealed tight, flaililing limbs, whining, whaling and any other attempt to communicate a lack of interest occurred over the course of 30 minutes.

He can eat. There is just something in him still telling him that it is not OK.

This is not causing any ill-will towards our son. Do not think this for a second.

The issue is the lack of solution. We have tried almost everything. We play during meals. We sing during meals. We used to watch Elmo videos during meals. We play in our meals. We have held hands down. We have encouraged. We have prodded. We have rewarded. We have (very minimally) punished. We act sad. We act happy. We show Avery and her incredible affinity for eating and insatiable appetite.

And the results are still coming up the same.

I know this is eating at my wife to no end. It is getting to me as well, but I am involved in only 1/3rd of the meals with Grover - and even that becomes very difficult after a number of non-productive sessions.

We have visited GI doctors, Cardiologists, Environmental Health Specialists, Physical Therapists, Feeding Therapists, Occupational Therapists, pediatricians, had DNA testing done to determine food allergies, tested his poops, pees, blood, hair - and everyone still shrugs.

We cannot accept any diagnosis from anyone - from physician to friend to stranger on the street that will chalk this up to "its just how he is". We have already fired 2 pediatricians for saying either these words, or for demonstrating this attitude towards our son.

Grover is (in my opinion) one of the 2 greatest kids in the entire world. If you look in to his eyes, read his demeanor, or watch his body langauge - you can see that he is capable of anything in the world.

So if there is anyone - anywhere - with any experience or advice relating to a similar situation - we would love to hear from you.

1 comment:

  1. so frustrating, can't imagine..

    May be check out and visit the feeding team at Cincinnati Children's would help? it's one of the top 5 or 10 children's in the nation and was an early aduptor of family-centered care so it NOT like dealing with local hospitals..anyways just wanted to share some ideas.. |

    Wish y'all where in Austin we've been through 5-6 OT's and the one we have know is like a fraking baby whisperer or something (jink) cause since we've seen her Ike's been eating very well. Granted it's a whole different story with Ike;-0

    Also, I know Grover T does not have a trach (jink) but a lot of parents talk about this on the message boards of, plus many of the kiddos have T21 Syn. This may be just a lot of white noise for you but may be you could direct connect with another parent via this site? example threads here:

    good luck!