Friday, October 30, 2009

The Grover Week that Was - And a little something about the rest of us too

We have our real Super Grover back! His stay in the hospital proved to be very worthwhile, and provided us with some answers and solutions to underlying issues that could very well be keys to getting this little champ to eat! I'm going to post all of that at the bottom, and you are more than welcome to read it, but first we're going to talk about some happy stuff.

We took the kids out for a pre-Halloween celebration tonight. Going against every morsel of sound logic, we drove from Dallas to McKinney for the Halloween in the Square (or somesuch). Naturally suburban traffic caused us to get there as the Police were unblocking the street - meaning that the event ended upon our arrival. But it did not matter.

Our kids were pure joys to watch. We had them both back, both healthier than either has been in any time that we can easily remember. Grover must have walked a mile all together - waving his arms and yelling at anyone who would pay him 2 seconds of attention. When you have a kid like this smiling from ear to ear yelling at you - it does nothing but make you smile uncontrollably.

And Avery was, well, Avery. I reserved her a domain name recently, and am thinking of ideas for a website for her. But she is alot like Grover in that her site will come with a purpose. If there is one thing she has - it is purpose. Determination. A lot to talk about (maybe not in English at this point - but the words fly out of her mouth). In short - she is a piece of work, and is going to make a difference in this world.

Wild Tangent - completely off topic:
We made a second abnormal Hood family decision #2 and ate at what we thought was Dodie's Cajun Kitchen - newly opened in Allen under the moniker of Dodie's Place. Suffice to say, it ain't Dodie's Cajun.

I have always lived by 3 major rules in life, and I have now added a 4th. The first three are:
never get less than twelve hours sleep
never play cards with a guy who has the same first name as a city
never get involved with a woman with a tattoo of a dagger on her body.
Normally, when you stick stick to that, and everything else is cream cheese.

Let's add a quick 4th item. Sports bars that are dressed up as restraunts in suburban strip malls are not good places to eat - stay away.

Okay, now on to Grover. In case any doctors or research scientists find their way to this - I write this for you!

We found that he does have some abnormality in his thyroid - nothing of great concern from a clinical standpoint, but worth further investigation, as even the slightest of symptoms could serve as a tipping point for other, farther reaching issues. The main things that brought us hope was that his deficiency is often accompanied by fatigue and lack of appetite. I think we had both of those covered in spades by the end of last week.

Also, an Angel of sorts came to meet Jennifer on Thursday afternoon shortly before we were discharged. Well, not an Angel per se - but a wound care nurse. Angel definitely sounds better! She took one look at Grover's Gtube and provided an almost istant fix for the irritation and burning that has plagued him for the longest time.

So all in all - I give this week a solid A rating. Sure, I have not abided by rule #1 of my guide to life (12 hours sleep) - but our kids are great, the weather is turning and my wife still does not have any daggers or any cutlery for that matter tattooed on her body.

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Thursday, October 29, 2009

Grover's Home!

Wednesday, October 28, 2009

Live From Floor #5 - An Evening with Grover and Dad

He's going to really resent me one of these days...

The Grover Store is Undergoing Changes

We are moving our merch to a new location. Please be patient - Buddy Walk T's will be up soon!

Tuesday, October 27, 2009

Playroom fun!

The hospital isn't all tests and poking!

Begin forwarded message:

From: "Jennifer Hood" <>
To: "Chris" <>, "Jan Gerick" <>, "Ginger Harrison" <>, "" <>, "Susan Daum" <>
Subject: Playroom fun!

Monday, October 26, 2009

Another October - Another Hospital Stay

Its kinda strange when you think about it - this is Grover's 3rd October, and each year he has found himself in the hospital for one reason or another.

This year feels different though - we are here for good reasons, and being cared for by people who are listening and helping us find ways to put weight on Grover while encouraging him to join the ranks for the mouth eaters!

We are at Children's in Dallas, working on his weight. Grover's energy levels had been low lately, and it started to weigh on us even more than usual. So Jen and I did the only rational thing - brought him to the ER at 9p on a Saturday night!

They were very quick to get us in, and could tell that our concern warraned their full attention - and that's exactly what we got.

Grover is doing really well, he is getting rest and all of his internal constitutions are being reset quite nicely.  Despite the fact that we are in the hospital, we are all surprisingly upbeat. This has given Jennifer a new motivation (as if she needed any more :) ) to invent even more nutritious and effective ways to feed GT within the confines of his specialized diet.

We hope to be out of here in a few days - especially since we have a Halloween theme this year that will put our previous efforts to shame. We have a title to defend in a number of groups for best Halloween theme!

I just started a SuperGroverT facebook group - look it up if you have time, and please join us. I promise not to send a message, tweet, twit, or whatever everytime he takes a drink of water. Just put it up there to promote this year's Buddy Walk, and to give us all something to look back on in the future when all of this nonsense is behind us, and Grover is in school, playing sports, eating, dating, eating and doing anything else in the world that he wants to do.

That's all for now - thanks for reading!

Sunday, October 25, 2009

What is the deal with hospitals in October for this kid?

Saturday, October 24, 2009

anyone know where i can buy some neocate in dallas?

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.

Thursday, October 22, 2009

Today was not an easy one on Grover, or his parents for that matter.

Day 2 was a step back from day 1, but it was somewhat expected. We were not expecting him to wake up with a healthy appetite and a desire to eat us out of house and home - but we did expect to see the reaction to hunger turn into a desire for food. Alas, there is always tomorrow.

I tell you - this kid is a piece of work. Tomorrow he will have his first run at the treadmill. We have it set up to give him a little something extra from a cardio/activity standpoint. Pics to follow.

Straight Up Grover Tee Shirts from

Straight Up Grover Tee Shirts from

Wednesday, October 21, 2009

Tuesday, October 20, 2009

Funny How the World Works

What an amazing day. Not amazing by way of progress, but one that definitely lead to some interesting discoveries about ourselves, and the people with whom we trust our child's care and well-being with - if only because they have a diploma and bad handwriting.

Let's start with the good - Grover's mom, Jennifer - and Dr. Kao. Jennifer deserves her own post, and it will come in due time. Dr. Kao really showed us something today. First, her office made room to get us in, and by all accounts it was a busy day in the world of pediatric cardiology. I overheard at least one patient being rushed to the ICU upon first glance. Dr. Kao could tell that we were both at our wits end.

We have some physicians telling us that our kid is what he is and to deal with it.

We had another specialist's office tell us that the doctors were too busy, and that if we were concerned, the best bet would be a trip to the ER.

We had another guy tell us that injecting our Grover T with allergens and other strange substances would help determine whether or not he is allergic to. This would lead to us removing all suspect substances, both foreign and otherwise, from his general environment.

Dr. Kao knew that we needed an ear today. We fully understand that she is a pediatric cardiologist. Not a GI specialist, not a surgeon, not a general pediatrician, immunologist, allergiest, nurologist, or any other IST. But today she was an ear, and let us know that we were not alone. It helped tremendously, and provided Jennifer and I with the clarity of mind to make a huge decision for Grover today.

We are going to free him from the tube just like you would ween a baby from a bottle. Remove it. Teach him. Make him learn. Have people over to entertain him as much as possible during meals in order for him to feel the hunger, and see the fun that you can have when you eat. This has been missing.

The scary variable here is that we do not know if he will understand the concept of hunger - and what the feelings are. Its going to be a wild ride, but one that we know is the right choice.

There has been 1 consistent lesson learned through all of Grover's ups and downs. Quite simply, if you want to get something done for your child, you have to make the decisions and act on what you think is right.

Wish us luck - this is going to be very interesting.

Also, I am putting together a Super Grover T store for Buddy Walk T-shirts and the like. I'll post the link very soon.

Monday, October 19, 2009

Big Day Tomorrow!

Operation Free Grover T moves on tomorrow as we will be spending the morning at the Environmental Health Center in Dallas trying to uncover the root of any food and chemical allergies that are effecting his overall well-being.  This has been a very interesting process, but thus far its hard to argue with the results.

We are also scheduled for a visit to our cardiologist, Dr. Kao. She has been very good to Grover T, and we know that she and her team will be very important to us as Grover continues to get bigger and stronger. Its always fun to visit Dr. Kao's office because Grover has a mural sized photograph of himself up in the office. We are really good customers - so good that our picture is hanging there!

The other biggie for tomorrow is that GT will be getting a treadmill. He works very hard with his therapists to increase his endurance, and the promise of a hard-earned Elmo video will keep him motivated to "work out" for 15-30 minutes at a stretch. All of you personal trainers out there better get ready for Grover - he will be your Rushmore.

Wish us luck - here is a pic of Grover and his old man at Dr. Kao's office from our last visit. Enjoy!

Sunday, October 18, 2009

Welcome to the Free Grover T! Blog

For my first blog post - I would like to tell you what I aim to accomplish with this website.

Grover is an absolutely amazing child. Spend a few minutes with him, and you will know that there is something extremely important about him - and when given the opportunity, he is going to teach the world to laugh, dance and enjoy life to the fullest.
Right now, Grover needs your help. After undergoing his first heart surgery, his willingness, ability, drive and understanding of the concept of eating has been non-existent. We have spent countless hours in feeding therapy, GI Dr's offices, undergoing some pretty rigorous testing and tons of at home experimentation to encourage Grover to eat. We fear that his disdain for orally consuming food is starting to bleed in to his overall well-being.

Grover consumes all of his food via G-tube, more specifrically, the "Micky Button". I will not be using any brand names here, for fear of retribution from manufacturers or physicians.

If anyone out there is participating in research, knows of anyone in a similar situation, or has any suggestions - we would love to hear from you.

With that....I will am now a blogger.