Tuesday, December 15, 2009

Holiday Gifts that Keep on Giving

I felt the need to share a few more of Grover and family's holiday adventures....that and I got a new camera that I am learning to use and what better time to do it than during a Tuesday family dinner!

Grover is seen here pondering the usage of the foreign object otherwise known as a "Fork"

Avery is taking this time to express her approval of all things legume - specifically the black bean

This is the new "Anti Tangle" haircut all the kids are getting these days

Grover still opts to take his meal the old fashioned way!

Avery is left to ponder the absence of additional beans.

Monday, December 14, 2009

Merry Christmas!

Normal Rockwell, eat your heart out.  This is what a family Christmas picture SHOULD look like!

In case you do not recognize the 3ft tall brute with the look of fear in his eyes - that would be the same Grover who has gained many pounds in the past month!

Happy Holidays!
Powered by Disqus

Sunday, December 6, 2009

Super Grover T's Newest Friends!

Grover (and all of us for that matter) have had a very exciting weekend!  I'm still shocked at how the story unfolded, so I guess it will be best to give the abbreviated story from the beginning.

A few months ago, Jennifer's aunt Debbie was in Alaska to film a part of a documentary regarding the Alaskan pipeline. One of the interviews she scheduled was with Sarah Palin. When she was with her, Debbie mentioned her nephew Grover, who like Ms. Palin's son Trig, has an extra chromosome.  The next time Debbie was in Alaska, she took a picture and present from Grover to give to Trig, which was a Super Grover doll and a short letter saying "hi".

A week or so after receiving the gift, Todd Palin sent Jennifer a thank-you note that also expressed a wish for us all to meet some day.  On Friday, the Palin family was in Dallas for a book signing, and Jennifer really wanted to take Grover to the event, but the tickets had sold out before we could reserve our spot.

Friday morning, an email came from Todd that mentioned their appearance in town. Jennifer wrote him back, and within an hour, Jennifer and Grover were sitting in a private room at the book store with Sarah Palin! There were so many people at the book signing, and when Jennifer and Grover arrived, one of Sarah's aides escorted them past the crowd in to a private room where The Palins were wrapping up their stop in Plano. They got to spend 15 minutes together, talking about our kids and their exciting lives. The biggest surprise came when Todd and Trig Palin came in to the room. Jennifer never thought that she and Grover would get to meet their little guy!

Jennifer admitted afterwards that both she and Grover felt a little starstruck by the encounter, but were also amazed at the normalcy of their visit. Despite all of the excitement and activity going on around them, nothing mattered but Grover and Trig. Jennifer said she felt like she was sitting with just another mom, sharing stories about their exceptional children.

What an exciting day! We know that Grover made yet another friend for life!

For those of you who know Grover, you won't be surprised to know that he pulled Sarah's glasses off her face! We forgot to warn her about his fascination with designer eyeware!

Monday, November 23, 2009

Vote for Grover T!

Its time for another contest - this give Grover (and me) the chance to sit courtside at a Mavs game. We had a great time putting the video together.

The most amazing thing about this is how much he wanted to walk around on his own. It used to be where we could not get him to move or walk around without picking him up and carrying him from place to place.

Now, he wrestles with you like a fish whenever you try to get carry him. Very independent that boy now is!

Enjoy the video!

It does require that you register to vote, but the good news is that HP will not send you any spam if you ask them not to!

Go Grover!

Friday, November 20, 2009

Sunday, November 15, 2009

A New Week Begins

Grover has been on fire lately! I think that most of it has to do with the additional nutrition that we are giving him through the night, but I also think that we have uncovered a number of physical things that have been hindering him, and now we are able to provide real solutions to help him out.

Unfortunately, this has not translated directly to him mowing through a plate of salmon and green beans like his sister - but we have to think this is something that will get us closer.

I want to thank all of our friends for their support and enthusiasm for my little project - it has been a lot of fun to work on, and really helps us to put our thoughts out there in hopes of receiving any level of feedback from old and new friends alike.

We have some exciting things in store this week, we'll keep you posted. Until then - here are Grover's pictures from the 2009 Buddy Walk. Enjoy!
2009 Buddy Walk - Super Grover T and Friends!
Powered by Disqus

Wednesday, November 11, 2009

In the Interest of WHY?

There is an inherent beauty in innocence. I see it in Avery’s eyes still, yet I know it won’t be there forever. Invevitably, she’ll encounter something, somewhere, someday that makes her understand that there are different ways to look at, and understand things. In fact,I am pretty sure it has already happened. Yep. It is why I am writing this.
In Grover’s eyes I see the same innocence. With him, I think it will be a presence within him that will guide him on his journey. He’ll probably encounter many of the same things as Avery – but his ability to differentiate between situations, moods, feelings and dangers will likely not be less inclined towards self-preservation as his sister’s.

They will both learn about the Yin and the Yang.
The existence of things that are good and the bad.
The difference between the dark and the light.
The expansive gap and fuzzy area that separates right and wrong.

And their individual reactions to these polar opposites will be, well, polar opposites.
This became very clear to me today, probably by chance, or more likely because it’s a lesson I have been subconsciously learning for a little over 3 years now. A lesson that is becoming clearer, and proving a worthy challenge on both sides of the Grover/Avery algorithm.

Just tonight, I saw how powerful a negative experience can be for a self-aware toddler. She is 20 months old mind you. This clarity came to me when I saw the effect a little bit of bath soap had on Avery as it accidentally found its way in to her bright blue eyes last night. It obviously smarted something fierce. Shrieks of sadness came from her, as her trusted ally of good times turned against her. The water that she plays in every night suddenly became an enemy. Something that was fun and free of any negative association now showed that it could be scary.

24 hours later – when bath time came, she wanted nothing to do with it.
Bath time is scary.
The water hurts.

It really stabbed me in the gut to see this. Partially because I was the culprit who let the evil soap in to those powerful baby blue eyes. That is some guilt right there. I’m going to have to learn to live with it and be the strong one. But this is not about me.

It is about Avery.
It is about Grover.

The main reason for my sense of “ugh” (yes, I am a Wordsmith) is that I now know that she knows. And I saw the first sign of the Word coming from her mouth.

She already knew so much more than I give her credit for. She remembers things. Not only things, but things and the reactions they cause. She knows that the reactions can be good and bad. Knowing this leads to the Word being introduced.

It takes a lot of work and effort to make something good. We have worked very hard here to make the things that we have good and trusting for our kids. We make it so they don’t have to use the Word for clarification of something that is either good or bad.

I fear this because it is so easy.

It is so easy, for in one instant – for something, anything -everything- to be viewed in a different light. And the change starts with the Word.

For me, I began to fear the Word because of something as seemingly insignificant as a Wednesday night bath, and it opened up my eyes to the challenges my wife and I will have as we raise Avery. As she grows from toddler, to preschooler and so on, the connotation of the Word will impact everything.
It is very humbling to know that we will not be able to catch her every time something untoward approaches her on the road to adulthood and beyond. The mere thought of not being next to her as her pathway becomes a real road with real hurdles is unsettling. Not being there to provide that soothing answer to the Word, as it echoes repeatedly, for one situation after another.

It is scary.
It is a challenge.
It is an opportunity.

I think this is also hitting me because I spent the earlier part of the day beaming over the innocence and happiness that I saw in Grover T’s eyes this morning when he woke up. Awaiting me as I got out of the shower was a soggy diaper of a mess, ready to roughhouse with his old man after a night of tube feeding.
This is a kid who should be scared of stuff. He’s been through things that I can’t imagine. He should have the Word tattooed on his forehead. Have a stack of business cards that he passes out at random posing the question signified by the Word. Yet he doesn’t.

He doesn’t know the Word exists. Or maybe he does but does NOT see the use in dwelling on it.

My almost 35 years on this planet have not been nearly as eventful as what he has endured. Yet, (almost) every morning, he wakes up with a huge smile, a friendly roar and is ready to hold on to your neck and not let go.

This is not a hug born from fear.

This is not a hug that says “Don’t leave me. I am scared.”
It is definitely not a hug ripe with the emotion of a child waking from a nightmare, or in any type of mental anguish.

The hug does not even have a trace of the Word inherent in its delivery or motivation. It’s a hug that says, “Today, I am happy”. For no reason whatsoever. I just am.

Simple as that.
Happy for today.

Happy not because what will happen tomorrow can be predicted, but happy because today is today.
It’s a mindset that will obviously present challenges to Grover as he embarks on his own journey. I know that Jennifer and I will have challenges with our son that in some respects will end up in tears, both happy and sad. But with him, he might not always know the Word and its proper context. And that is the difference that makes me want to be so protective of both of my children.

As Avery grows older, she will begin to ask “WHY” more and more. When we wish she will stop asking, we will be teaching Grover to ask it at a similar clip.

WHY is that?

My hope is that Avery’s path will be driven by questions. Driven by a quest to understand. To learn, and to use every lesson to improve upon experience. Not just to ask WHY and leave it at that, but to understand the answer, and not ask it again under the same pretense.

WHY does this hurt?
WHY do I have to brush my teeth?
WHY can I not eat a certain kind of food?
WHY do the leaves fall?
WHY does the dog have fleas?

As Grover develops, he will encounter similar situations and challenges, but I don’t know that he will ask “WHY”. I think he’ll adapt. He’ll make the situation whatever it needs to be. However it needs to be. For him. Of course, it may not be an ideal scenario for a situation, and one that Jennifer and I will have to do a predictable share of damage control on. But the differences I foresee at this moment are staggering.
It’s an inverse relationship.

Avery will ask WHY her head hurts. We will try to find an answer

Grover will say his head hurts. We will have to ask him for reasons WHY.

Avery will ask WHY she can’t eat certain foods. We will have to answer that question.

Grover will not be given certain foods. We will need to teach him WHY this is.

The end result is both children needing and deserving to understand.

The non-linear naiveté that I have learned about with children like Grover is a blessing that comes with baggage. But then again, so is our ability to know the truth behind things.

In one day I have seen the pros and cons of each.

It is obviously good to know things to avoid if they cause distress. Of course the ideal situation would be to not know of things like fear and pain (real and perceived), but that is not entirely realistic.

It is also good to see daily material situations and objects in a simplistic, naïve and non-threatening manner.

But that obviously presents a maelstrom of challenges as well.

Maybe the (unrealistic) solution would be for Grover to divvy up his extra chromosome and spread it around with the rest of us. It seems utopian to have the ability to ask “WHY”, but not rely on it as a crutch, nor have it hanging over our heads like a black cloud of answers we dread.

WHY is a useful Word. It is a common Word. It is a Word that is needed for many reasons, and would ideally be avoided for equally as many.

One thing is for sure. The duality of how this Word will exist within my family, my home and my life will be challenge enough to encourage me to have the right answers, and not to be the negatively inclined answer to the question.

Not for my wife.

Not for my Grover.

Not for my Avery.

Not for anybody.

Friday, November 6, 2009

Super Grover In Training!

If the promise of a petting zoo is not enough to persuade you....check out this!

Powered by Disqus

2009 Buddy Walk is Almost Here!

Hello Friends of Grover!

This is a friendly reminder that the 2009 Buddy Walk is Sunday!

It starts at 11am with the official "Buddy Walk" stepping off at 1p.

The event is at Flagpole Hill, which is on White Rock Lake. Full information can be found here:
2009 Buddy Walk - Dallas, TX

This is a wonderful event that provides enormous financial support for the Down Syndrome Guild. This is a great opportunity to raise awareness and show your support for The Down Syndrome Guild of Dallas

The suggested donation for the event is $25 - and all proceeds from the event directly benefit the programs and services offered throughout the year by the Guild.

We had a great time last year, and know that this year will be even more fun. We look forward to seeing you!

Grover can't wait to see all of you!

Tuesday, November 3, 2009

This poem is weighing heavily on my heart today...

Chris Hood
9:12am Nov 3rd
This poem is weighing heavily on my heart today...
To chris2789.supergrovert@blogger.com
Wonderful Story

Chris has shared a link to a note with you. To view the note or to reply to the message, follow this link:

If you do not wish to receive this type of email from Facebook in the future, please click here to unsubscribe.
Facebook's offices are located at 1601 S. California Ave., Palo Alto, CA 94304.

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.

Powered by Disqus

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" <hoodfamily4@gmail.com>
To: "Chris" <chris.hood@futurestep.com>, "Jan Gerick" <jan.gerick@pisd.edu>, "Ginger Harrison" <gharrison2@yahoo.com>, "lowis1@aol.com" <lowis1@aol.com>, "Susan Daum" <daumfamily@sbcglobal.net>
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 Zazzle.com

Straight Up Grover Tee Shirts from Zazzle.com

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.