Update from our trip to Houston

Two weeks ago, we took a trip to Houston for a regular appointment with Dr. G, our uppers doctor. When planning for this trip, we had talked with Dr. Hall, who also wanted us to see a geneticist, so we found Dr. P at Texas Children's. We were able to schedule them on the same day and went down few days early to spend time with my sister, Cathy. It was a wonderful weekend and I can't even begin to tell you how much I enjoyed hanging out with my sister and watching Jackson play with his "Cappy", as he affectionally called her! And Jackson even got to meet his great uncle Sam and his great grandmother.

Dr. P is an amazing and through doctor, who is very interested in Jackson. She met with us for over 2 hours and did extensive visual examinations of all of us. During our appointment, she asked me questions, I have been asked several times, "why do you want to know and why are you interested in this information?" These are two questions I have "struggled" with ever since Jackson was diagnosed. I've said it before, the whys don't matter, they won't change how much we love Jackson, how much we advocate for him or anything else. But the whys do matter as a mother, as his mom, I deserve to know why this happened, will it happen again and for him the whys matter because some day he may want children of his own. Dr. P also asked another question I have heard a million times over, "do you want more children?" The short answer to that question is yes. But the more complex answer deals with the whys. If the doctors and testing could guarantee without question that Jackson's Arthrogryposis is not genetic and there is the 1 in 10000 chance that we will have another child with Arthrogryposis, then sure we would have another child, but if the answer is as we suspect, not so cut and dry or if the cause is definitely genetic, then we will likely not have more children and will explore adoption. Would I have Jackson all over again? ABSOLUTELY!!! But it's not fair to any of us to go into a situation knowing it could be so much worse and that we might not be so blessed next time or to hinder Jackson or another child. We got our miracle and for that we are forever thankful!

Dr. P is running a genetic microarray test and it will hopefully give us more answers. Our appointment with Dr. G went well and she sent us home with some more stretching and will see us back in 6 months.

In other news, Jackson is back riding horses and we are getting set to participate in the International Acadian Festival Pageant again this weekend.

Thanks for checking in on us,

the heckerts

WOW---It's been a while

So I haven't posted in a while, but things have been crazy here. I got a double ear infection, which seems to be starting a trend of being annual, gosh I sure hope not! Jackson had what we believe is an allergic reaction to soy. And, Jon had a terrible reaction to sulfa drugs and ended up in the hospital for 2 days, but he's all better now. So, now you see why it's been so long!?

Tonight, I want to write about something I have only dreamed of for a very long time. About a month ago, my little miracle started school. I don't have a desire for my child to grow up too fast, but school has always been a milestone I hoped we would accomplish and on the first day, that little miracle WALKED to class and was FULLY INCLUDED.

Many of you know the struggles I faced with trying to find a place that would fully include Jackson with his peers. We heard all the logic about safety and accommodating his needs, we were offered "baby rooms", no access and many other irrational things along the way. But God always has a plan and out of the blue I found First Presbyterian in Baton Rouge. They were more than willing to take on a "challenge", invited us to see their facilities, see if what they had would work for us and if they could accommodate Jackson. We went toured, interviewed and fell promptly in LOVE. They offered us a full scholarship if we agreed to find a shadow and pay them. The search began and we found another God send in Nici, she loves Jackson and he loves her. She is a true angel on this Earth and we could not have asked for a better fit.

Jackson has been in school for about a month now and absolutely LOVES it. He has made friends, the kids are so accepting and melt my heart everyday, from climbing off a toy to sit on the floor and play with Jackson to climbing in the sand box to play with him---he's a ROCK STAR and the girls wait for him to walk to class with them! Just tonight he was telling me and Jon that "all the kids want to play with me!" He's learning his ABCs, numbers, months, prayers, etc., working on potty training, and being fully included with a little help. His teachers are AMAZING and everyone there loves and spoils him! It is a perfect fit!

This weekend, we leave for appointments in Houston, first a Texas Children's with a geneticist, which I am a little nervous about and then to Shriner's to see Dr. G----it will be a fun weekend as we will be staying with my (half) sister, I can't wait to just sit on the porch with her and a big glass of tea! Please pray for safe travels and valuable information from our medical team---I'll keep you posted.

All our love,

the heckerts

My "Other Family"

About 2 years ago and when Jackson was not even 6 months old, Jon and I loaded Jackson in the car and drove 6 hours to Dallas, Texas for the 2nd Annual Arthrogryposis Multiplex Cogenita Convention; it was our first meeting of many families I had talked to on the internet since Jackson's diagnosis in utero. Tomorrow, we will board a plane and head to the 4th Annual AMC Convention in Philadelphia, Pennsylvania. If you know me, you know I hate to fly, but I couldn't miss seeing my other family and the opportunity for Jackson to excel at something different---in the past 2 years at conventions, Jackson has learned to hit a ball with his head, throw a ball, straighten his right leg and drink from a sippy cup.

So, tomorrow, we will load our amazing 2 year old on a plane and head to what has become our annual trip to see all those who inspire us over and over again. I can't wait to see them and to see what Jackson learns this year. There will be tears shed, but there will be more happy than sad. 

Advocate Second Only to Mommy

This morning my dear friend Wendy (P.J.'s mom) sent me to read this on the Huff Po website. I was upset at best and words not appropriate for a family friendly blog at worst. After reading the editorial and several other post on Julia's site, I had to do something, so I wrote the following and sent to the Huffington Post:

To whom it may concern:

Let me start off by saying I am extremely pro-choice and a Christian. I have said it a million times over abortion was not the right choice for my family and our situation, but I do understand it is may be for others and their situations. This morning a very dear friend of mine sent me a link to the Huffington Posteditorial concerning the doctor who was killed over the weekend in Wichita, KS. But our story starts way before today. In September 2006, we went in for a routine 20 week ultrasound, in a whirlwind situation, we were sent to a perintologist.   He did the ultrasound and found that our baby (we did not want to know the sex) had clubbed hands, clubbed feet, and arms stuck in extension.  These along with many unknowns were presented to us. On that day, we were given a diagnosis of Distal Arthrogryposis. We were also told and I quote “Some parents choose to terminate”. My immediate response was “I do not.” While I would never judge another mother for making this decision, as I said before, it was not the right decision for me.

All this to say the choice that Julia made was indeed a very personal one and I will not hold that against her, but what I do take issue with is her justification for terminating and her description of Arthrogryposis.

Here is a little of our story:

 Jackson was born on February 8, 2007 at 8:14 a.m. via C-section, because he was breeched. When my O.B. came back, she asked them to have the neonatal team ready, as we knew that Jackson had been given a diagnosis of Distal Arthrogryposis (meaning he would have club foot and hands) and that sometimes children with Arthrogryposis can need a trache. So they proceeded with the section and when Jackson was born, they all yelled "It's A Boy!" I heard him screaming and that was all I needed! Well, they whisk him away and we don't see him again! This being my first section, I didn't think it was that much out of the ordinary. So they fix me all up and tell me that they are going to take me out to see Jackson. And we wait and wait until finally my nurse comes back in and tells us that Jackson has some tubes and wires, but they are helping him, then they roll me out to see him. What a shocker! We later learned that Jackson had to be "bagged" to help him breath, as he had swallowed amniotic fluid on the way out and possibly had some lung weakness. Shortly after his birth, Jackson was given a diagnosis of Amoplyasi, but now they are not sure that is correct---all we know is that he has a form of Arthrogryposis. But hearing those first cries, I knew our Jackson would be a fighter, always was and still is!

Arthrogryposis is not a death sentence; it is not a painful condition, there are no cramping that we have ever heard about from any doctor, therapist, or adult with the condition. Yes, those with the diagnosis are more likely to develop arthritis at an earlier age, but in and of itself, Arthrogryposis is NOT painful—all of the adults I have met will tell you that. They will say that therapies (physical, occupational, etc.) can be uncomfortable, but NOT PAINFUL. Julia states “He would never be able to walk or stand; never grasp anything, never be able to hold himself upright. He wouldn't even be able to suck his own thumb for comfort.” My son, Jackson is now 2 years old, to this day, he does not stand or walk, without assistance. When he was born, we were not sure if he would grasp things, today he does grasp, but cannot feed himself, and it took a very long time before he could hold himself upright. But I am here to tell you that he leads a very happy and fulfilled life. Our “normal” includes therapy 3-5 days a week, several trips to the doctors across 2 states, but it doesn’t mean that life is not worth living for him or for us.

Jackson’s life and living it with him has changed mine and my husband’s. One very bright light through all of the struggles we face everyday has been AMC Support, Inc. This non-profit organization runs a support group board at www.amcsupport.org. I found the site just a few hours after Jackson’s diagnosis inutero.  I found there, parents and grandparents whose lives were forever changed by their amazing miracles---their children and grandchildren with Arthrogryposis. I also met several adults with Arthrogryposis, they are simply some of the most outgoing, helpful, & open people I have ever met. And everyone we have met tells us, they would not change one thing about themselves and especially not take away their Arthrogryposis, because it makes them who they are!

In closing I will say that every day is not all rainbows and sunshine, there are days when it rains, but our lives, including Jackson’s, are nothing short of wonderful and beautiful. I have taken 2 pay cuts since Jackson’s birth, so that I could take him to therapies, doctors, etc. It is tough financially to raise a child, especially one who is differently-abled. Insurance is a battle, every new therapy is a battle, carrying around a 26 pound child who can’t hold on to you is a battle; but everyone of these battles make me a better mother, a better daughter, a better wife, a better friend and our family that much better. And I have done things I would have never done before Jackson and I have met people I would have never met---one of those people is my very dear friend who sent me this article. Do I want life to be “easier” for Jackson? Yes. Do I want him to walk NOW? Yes. Do I want him to feed himself efficiently? Heck, yeah. But would I ever change anything about him or my life since him? HECK NO!

25 Things

I have learned a lot in the past 2 years in this journey, here is the 25 things that I have learned and for all of them I am blessed and thankful:

1.  Just when you think you have hit your low, Jackson will brighten your day.

2.  A simple milestone means the world.

3.  Believing takes on a whole new meaning.

4.  There are people who are our “family” who we would have never known if not for Jackson.

5.  Every scoot, every roll and every step took a team effort and for that we are so proud.

6. Two year old “arguing” was never so pleasent to the ears.

7. Eating Cherrios is a life skill, not to be underminded by playing with household utensils.

8. It’s okay to stop and remember there is more in this world than the daily hussle and bustle.

9.  Digging in the cabinets is a welcome activity!

10. Things other kids get in trouble for are considered therapy.

11. We can and do negoiate with a 2 year old - “if you put on your braces and walk, you can have the chip”.

12. Doctors don’t always know best.

13. It’s okay to cry---happy tears, sad tears, tears of shear exhaustion----they all have a place in our lives.

14. Rolling around the house leads to many new obstacles.

15. Everything happens for a reason.

16. Eating dinner can bring smiles to our face.

17. 2 year olds are amazing comedians, especially when we need it the most.

18. Road trip takes on a whole new meaning.

19. Hero takes on a whole new meaning and no we are not heroes, we are just parents doing what other parents do, caring for our child.

20. Disability does not define a person.

21. Watching Jackson grow by how big his braces get everytime makes us smile.

22. I always wanted to be a teacher, now me and Jackson get to teach many aspiring doctors and therapist.

23. Every milestone REQUIRES a camera no matter how “mundane”.

24. Having Jackson has made me more of a fighter for what I believe.

25. I am a better person EVERYDAY because of Jackson.

We travel to New Orleans tomorrow, please pray for us in our travels and that we have a productive and uplifting trip.

Headed to Houston

With house renovations, starting a new job, and lots of things going on I haven't had a lot of time to post. I still need to get birthday pictures up and lots more. But for now, here is the latest update. We are heading to Houston for a second opinion on Jackson's lowers and for an evaluation on his uppers. We are going to Shriner's there, as they have an Arthrogryposis Clinic. We will see an OT, a PT, a neurologist, a geneticist, an uppers orthopedic and a lowers orthopedic. It will be a long day on Monday, we leave tomorrow, as our appointment is at 8:30 a.m. Please pray for us as we travel, a good day, and lots of knowledge and wisdom for our medical team there. I promise updates are coming, it has just been crazy here! 

xo,

the heckerts

Exciting News

I started my new job today---lots of details to follow, but suffice it to say I am in LOVE.

In other news---I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published the February issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is free, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues. www.seriouslifemagazine.com

Happy Monday and details to follow about my new job.

xo,

Doris

Living on Tulsa Time

We spent a wonderful weekend with family. The first stop was to see one of the many who have become a very special part of our family in the journey ofthe past 2 years, Wendy and P.J. (a five year old AMCer) and Paul (her hubby and their younger son Patric); may not be related to us by blood, but the bond we share with them is inmesureable. I first met Wendy a little less than 2 years ago at the very first AMC Convention we attended, she was a"young" mom too and I identified with that and her son P.J. gave me and Jon so much hope for the future and what Jackson would accomplish. As long asI live I will never forget this:

On the Sunday (last day of convention), Jon had gone out to get the car, I was standing in the lobby with Jackson in his car seat in the stroller. I noticed a typically developing child running as P.J. ran behind them. When they reached the stairs, I thought to myself, how is the heck is P.J. going to get up those stairs, he can't pick up his feet like me. Well, before Icould get the thought completely out of my head, this little amazement hit his knees climb the stairs and took off running again. I cried and cried anda s soon as Jon came to pick us up all I could say was "Jackson will be fine".

Wendy and I chatted during that convention, but life was chaos for us then,between caring for Jackson, changing braces every three hours, pumping andf eeding, there wasn't much time to just hang out. By the time last year's convention rolled around in July, Jackson was doing so well, that we were bracing only at night and I (thank goodness) was done pumping, so there was a lot more time for hanging out and that is just what I did for two and a half wonderful days, when we weren't in sessions, I hung out with Wendy, we sat and talked for hours about our lives, our kids, anything we wanted(while my wonderful hubby hung out with the kiddos). Wendy and I had an instant bond, we left that convention with a new found friendship (and kinship) that will last a lifetime. We talked about it so many times in our numerous phone calls and text messages since July that we needed to visit each other and let our boys hang out. So when Jon asked about going to Oklahoma, I knewthat there was a stop we needed to make on the way---we had to see Wendy and the boys. So on Friday night after seeing Dr. Mathews (it's a story foranother post---but he has AMC too) we drove to Dallas. We arrived around 10 p.m. and stayed up while the little guys played until 1 in the morning. We got up the next morning and had breakfast, P.J. showed us his feeding machine and Jackson tried out his new adaptive equipment Wendy found for us---it's called a dip stick and is made for kids to eat ice cream cones without making such a mess---but it works well for bananas. P.J. and Jackson totally get each other and Jon and I left with yet another beautiful picture for our future and Jackson's. During our visit, several times we heard P.J. scold his brother for trying to hand Jackson a toy "the wrong way"...P.J.knows how Jackson should get a toy, he uses his hands in a very similar way to Jackson. The funniest moment came as we were leaving and we told Jackson and P.J. to give eachother five--they turned their hands "backwards" like that was just how you give five---it was truly amazing to watch them and how well they know each other.

On Saturday, it was on to Aunt Aubrey and Uncle Jason's, their kiddos and Paw-Paws. When we were about 30 minutes from their house, Jackson started asking for Paw-Paw and NeNe (his dog) and was so excited to finally see them when we got there. Jackson had a ton of fun hanging out with his cousins: Alexander, Abby, and Andrew. Andrew is a little younger than Jackson and it was absolutely precious to see him (and Abby) try to roll like Jackson!

It was a wonderful weekend spent with family.

A Visit to the Doctor

So, for a while we have been wondering where we stood on Jackson's hands. We saw a doctor at convention, who told us that Jackson's had were functional and that he would not suggest surgery. We wanted another opinion and we had been told there was a doctor in Zachary, LA--not too far from us---that had AMC, so we decided to pay Dr. Mathews (yes it only has one T) a visit. First let me say that Dr. Mathews is in total agreement that Jackson's hands are functional and his hands and arms are not tight, so he would not reccomend surgery, although he did refer us to Texas Scottish Rite for a second opinion. Secondly and amazing to me, Dr. Mathews has Arthrogryposis also! He is mainly affected in his lower extremeties, but does have some AMC qualites in his upper extremeties. He has lower muscle tone than typical in his upper body and get this he can not turn his hands palm up---yeah and he's a hand surgeon! Just proves once again that you can do anything with the mind set and God's help. It was a great visit and he is very interested in following Jackson, even though he doesn't specialize in pediatrics. Very uplifting and inspirational guy and once again our family is in LOVE with a doctor.

I got a hair cut, I really got a haircut

Enjoy!

Christmas Time is Coming to a Close

I can't believe my holiday vacation is almost over...I really want it to last longer and who am I kidding I need it to last longer, we still have a lot of stuff to do in the house...but it will come. We spent Christmas with my mom, dad is still in the hospital, but seems to be improving, so please keep those prayers coming. It was a great Christmas and a wonderful New Year Celebration. Jackson has grown so much, that I just can't believe it...he continues to amaze me everyday!

We celebrated Christmas mass at our church and the tradition is that the youngest child gets to put baby Jesus in the manger and Jackson did the honors. We had told him all day Christmas Eve about how important a job it was and after he put the baby Jesus in, he looked at me with the biggest smile! We had a great New Year's Eve celebration with our neighbors and a grand time watching the "booms" as Jackson affectionately calls fireworks!

Here is my favorite picture of the season:

And here's to a wonderful 2009 filled with lots of achievements and good health for all of you and all of us.

P.S. Jackson's party is coming soon, can you believe he will be 2?

Christmas is Coming

I can't believe it is already Christmas Eve, we are busy preparing food for tomorrow's lunch with my mom. Daddy is still in the hospital, so please keep him in your thoughts and prayers; it is a sad moment in such joyful season, but I know that we will get thru it. Jackson is excited to see what Santa brings as is mommy. We got letter from Old St. Nick himself yesterday, it says the elves are working on a choo-choo table for Jackson, I bet if he gets it he will be so excited! I have said it before, and I will say it again, I LOVE CHRISTMAS, always have but to see it thru the eyes of a child makes it even more special. And to see it thru the eyes of a child with different abilities is truly a miracle in and of itself. I can't wait to see him rip thru the paper on all his gifts, to put baby Jesus in the manger at church this even and not even need my help (well maybe to make sure baby Jesus gets in the cresh, but not to help him hold it). As I write this he is rolling on our living room floor and I am making sure he doesn't take ornaments (or as he calls them balls) off my tree, last year it was even a thought, I am simply in awe of how far he has come. And really if he takes an ornament off the tree I will be so happy I won't know what to do!

In other news, we went to therapy on Monday and he is so close to walking, with a shopping cart---doesn't like the walker, but loves the shopping cart---once he figures out his center of gravity and balance he will be off in no time!

Enjoy this wonderful season with your family, friends, and neighbors; I know we will. Remember the true reason for the season and see Christmas thru the eyes of your little ones, it will AMAZE you.

RGOs

A few weeks ago we got RGOs (reciprocating gait orthotics). It was a very trying and the hardest fitting I have ever had. I knew that and have always known that there was no such thing as a "miracle brace or treatment", the only true miracle we will EVER know in this journey is Jackson himself. But for some reason, I just thought we'd put them on and he would take off--I knew in my mind he wouldn't, but for some reason I thought he would. So, needless to say when we put them on, he didn't take off and in fact he cried and I cried, it was really hard. We brought the braces home and I put them on him the next day, it was a battle again, trying to help him figure them out, trying to figure them out myself; it was a tough therapy session to say the least. On Monday, I e-mailed another mom (who's daughter wears RGOs) from the AMC support group, my true life line since our diagnosis. I talked to another AMC mom and even though her son has never worn RGOs and she offered support, a just a sympathetic ear and encouragement. The mom who's daughter wears RGOs told me she had the same wild idea about the braces, she offered suggestions and when I got home from work and put them on, we put the RGOs again using her suggestions and Jackson's ability to truly know his mommy and he rocked and kicked through the whole house, I cried again, tears of shear joy!

We did have to go back to get them adjusted as Nick our orthotist made the butt piece a little too short. We got the new piece on Friday and are doing very well rocking and kicking our way around the house.

It's Been a Couple of Weeks

We have had a hard couple of weeks. Some of you may or may not know that Jon's mom has been in a long, hard, and courageous fought battle with cancer for about a year now, on the morning of November 11 that battle ended. No more drugs, no more pain, just the sweet reward of Heaven. It was tough to say the least, but Jon and his brother, dad and sister were with her when she went to her final resting place. Since she was in Oklahoma, they were all there, leaving me here to try to explain to Jackson why mommy was sad and daddy was gone. I know you may think I am crazy because Jackson is so young, you may not think he "gets it", but trust me I know my kiddo and he was just not himself, even his therapist commented that he was acting differently. So, the night after his maw-maw passed, I came home, we ate dinner and I sat Jackson on my lap showed him pictures of her; there was one picture where she was helping him hold his sippy cup (not that he needed it, but that's just how maw-maws are). I explained to him that maw-maw was helping us and that she would always be right above us in the sky with all the other angels who help us. But that me and daddy miss her and we are sad and it is okay to be sad. He immediately began looking at our front door; which has two small windows at the top and saying "Mama, Mama"; so we walked out on the porch and he looked directly at the sky. I told him, we can't see her but I promise she is up there, we blew her a kiss and came back inside. He totally got it---or at least I think so.

I know she is truly up there smiling down and watching over all of us, especially Jackson. In less than a month of her passing, we have seen Jackson making leaps and bounds of accomplishments. He has more words than ever; including "where"--he wants to know "Where ball?, where choo-choo?, where boat?, where water?, where, where, where?" He has started scooting more and more and can even do it on carpet! And my mom and I believe he is trying to figure out how to push his body up into standing, I think before long he will be there.

We have put up our Christmas tree and are making the Christmas party rounds, with therapy and our orthopedic clinic. Today was the therapy party and I truly can't believe how far he has come since our last party there. Today, he fed himself goldfish and scooted all around the room. Last year we were still having to hold him or at least sit behind him so he wouldn't fall over...this year the kid was hanging with the big kids and holding his own! One thing hasn't changed though, he is still not very fond of Santa, but I guess that plays into my plan of making him truly know what this holiday is about---the birth of our Savior and the promise that gives to all of us.

We are heading to a neighborhood Christmas parade with The Wilson's (Braden and mommy and daddy) on Sunday and then exchanging gifts with them. We can't wait.

I want to start posting more here, but I have to find the time, maybe a word of the day or Jackson's funny quote of the day (trust me he has many)---we'll see...but for now I leave you with my favorite word year round, but especially at Christmas---BELIEVE. Believe in Santa, but more importantly, believe in the promise that this Season holds, the promise of our salvation. It has taken alot of Believing over these past 22 months, but every time I see Jackson kick that foot in the RGOs or scoot to a toy or even to our Christmas tree, I know that I just gotta keep Believing.

xo,

the Heckerts

A Little Story to Warm Your Heart this Fall

So I didn't write a blog about Gustav, my daddy spent 21 days in the
hospital due to a bleeding ulcer on his main artery in his stomach, which
required 2 surgeries, he is home now and doing much better (thanks to all of
those who prayed for us and continue to do so, your prayers are definitely
felt). Jon's mom and dad moved to Tulsa, OK to be at Cancer Centers of
America (and Jon's sister lives there). She has had a few complications over
the past couple of weeks, so please continue to keep them in your prayers.
And we are still in battle with our insurance company and FEMA, but it seems
like we might be winning a little, at least for now. And one day, I will
blog about all the chaos of Gustav, but right now I am still in the middle
of it and can't reflect on it too much.

So all that to say, here is a new blog entry and before you start reading
it, I should warn you I am really rambling today...

I know it is really early to be thinking of Thanksgiving, but I am...I love
this time of year, coming to work while the sun rises, watching the sunset
while playing outside with my sweet baby boy, and wearing long sleeve
t-shirts, something about them always made me smile. As the season changes
to fall, I start to think about what we are thankful for and now that I have
Jackson how much our lives change every season, how much he grows, how much
he accomplishes, how much we grow, how much we accomplish. So first, what I
am thankful for...when you are told you will have a differently abled child
(okay that is my new word, I still am okay with special needs, but I so love
the term "differently abled") you start to think about all sorts of outcomes
for them and for me I thought ALOT about Jackson's future, even when I would
dream about him before his birth, I never "saw" him as a baby, it was always
as a toddler. I guess I also knew that once we got through a lot of the
initial stuff (therapies, castings, surgeries, etc.) that our lives would be
more "normal", so I always thought about the future; that is not to say I am
not completely wrapped up in the present.

Well one of the things I think both Jon and I worry about the most is
whether or not other kids will take to Jackson like adults do, kids can be
so cruel. There is a little girl named Sara who lives across the street from
us and is a little younger than Jackson, she is a typically developing
child, and she has loved Jackson ever since she laid eyes on him and
needless to tell you, if you know Jackson, he is enamored with her. If she
sees him outside, she immediately yells "JACK!" Her mom even told me that
when she gets in the windows in there living room (where you can see our
house), she yells "JACK, JACK!"---her mom tells me the running joke is
Romeo, Oh Romeo!

So a couple of afternoons ago, we were outside and so were most of our
neighbors, soaking up the beautiful weather and Sara was in her wagon, her
mom asked Jackson if he wanted to ride, we put him in and buckled him and
away the rode, with Sara's older cousin pulling them. They played with Mr.
Potato Head, bent over and bumped heads and laughed hysterically, and rode
together for about half an hour. As if that wasn't enough to put a big smile
on my face and my heart, Sara topped it last night. We went home, but left
because we had errands to run, when returned after dark, Sara had made her
mom, her grandmother, and her cousin all stay outside with her so she could
have her "Wagon and Jack"---her mom tells me she refused to go inside, eat
dinner, or take a bath; until she had her "Wagon and Jack"; so it looks like
this will be a daily outing. And I can't tell you how much it warms my heart
to see how much another child loves my Jackson.

I hope to get a picture of them soon, so I can share the joy with all of
you.

Thanks for checking in on us,

the Heckerts

UPDATE:

Here are two of my favorite shots from yesterday....

Gustav

I am working on a post about our trials and tribulations before, during and after the Hurricane, but for now here is a post Kodi (Braden's mom) sent me and it pretty much sums it all up, from the current climate here, to the fact that it made me laugh and cry---I have done a lot of both lately

Gustav’s Guide to Hurricane Survival
Lessons Learned During and After the Storm

The hurricane grouch quotient can be calculated by adding the number of children and pets in a home without power, multiplied by the number of days quoted on the Entergy telephone recording, divided by the number of fans or portable air conditioners powered by your home generator, (however if you were last in line at Home Depot and have no generator then multiply by the daily high for that day reported by either Pat Shingleton or Jay Grymes), then add the number of trips to the washateria and the days left until school opens. Discount by the percentage of time spent at neighbors who have power. Recalculate as often as necessary

No matter how many times you flick the switch, lights don't work without electricity.

Vienna sausages only appear on the food pyramid during hurricane season.


Gas mileage is recalculated based on miles per fume.

Lovebugs do not disappear in 80mph wind gusts.

Disasters can cancel one LSU football game but there will be even bigger casualties if we cancel two.


Despite protests, kids can re-live their parents’ youth when there were only 3 tv channels!

Cats are even more irritating without power.

Baton Rouge without traffic lights resembles Mexico City, Rome, Los Angeles and New York City all rolled into a single snarl.

A 7 lb bag of ice will chill 6-12 oz beers to a drinkable temperature in 11 minutes, and still keep a 14 lb. turkey frozen for 8 more hours.

There are/were a lot of really big trees around here!


Just because you're 18 doesn't mean you can stay out as late as you want. Mayor Holden meant business when he said curfew.

People will get into a line that has already formed without having any idea what the line is for.

Calories consumed during a hurricane or power outage do not count.

Telemarketers function no matter what the weather is doing. New Delhi does not check the weather report in Baton Rouge.

Most popular text message after September 1: do u hve pwr

Twenty-seven of your neighbors are fed from a different transformer than you, and they are quick to point that out!

Crickets and cicadas can increase their volume to overcome the sound of 14 generators.

Dirty clothes in an unsupervised hamper multiply at an exponential rate.

Coffee, spaghetti and frozen pizzas can be made on a grill.

He who has the biggest generator wins.

Tree service companies are under-appreciated, except after hurricanes.

Our Lady of the Lake never closes. Really.


Water will fill the Acadian Thruway underpass, even sometimes when it is not raining.

There are a lot more stars in the sky than most people thought.

If you owned a store that sold only ice, chain saws, gas and generators, you would be rich.

With only a small amount of guilt South Louisiana can collectively pray a second hurricane to landfall in another state or country.

And so to our friends and families, some who are still without power and others who have endured great personal loss, you are in our prayers. Hang in there, we are making progress. Thank you to all our first responders, healthcare professionals, service technicians, teachers, police officers, small business owners, and more who join with the thousands of individuals sharing their time and talent to help restore our community to wholeness.

The most important lesson of all learned from Gustav in the last week is that the human spirit has an amazing resilience that even a hurricane cannot bend. Through God’s love and amazing grace we can endure all things.

Amazing Weekend and a Prayer Request

WOW! We had a truly amazing weekend---we picked up Jackson's new HKAFOs on Friday in New Orleans, when we first put them on, he was not so happy about them; but once we got him home and in them again, he was in LOVE! To see him stand is simply amazing---me, my mom, and Jon's mom have all shed happy tears! He is such a big boy---last night Jon and I measured him and he is 28 inches tall! It is a true milestone, that just 18 months after we brought him home from the hospital, he is STANDING!!! On Saturday, my mom and I went to Babies R Us and got him an Elmo table just right for standing and playing with his toys on in his new braces----now when he wants to stand at the table, which is almost every waking hour, he cries "Elmoooo"---it is so cute and so pitiful at the same time! We are working on learning to weight shift and use our walker, I know it won't be long until I am chasing him through Wal-Mart or Whole Foods and I can't wait!

Tonight, I have a prayer request from all. Many of you know our good friend Braden (Dog from our Halloween post), well, he is in the hospital and has been for over a week with respiratory issues. Please pray for him and his mom and dad, they are going through a kind of rough time right now.

Thanks for checking in on us,

the heckerts

8.8.08

It is an amazing date, the day my baby boy turns 1 and a half. It's also the start of the Olympics. Did you also know that the Chinese think the number 8 to be lucky? In Maderin, 8 and wealth are the same word---which in and of itself is a true testament to Jackson, he is my "wealth" and he was born on February 8.

I truly cannot believe that almost year and a half have past since we welcomed our sweet baby boy into this world. He continues to stun and amaze our medical team and family and friends. It's not that he doesn't amaze or stun Jon and I, it is just that we expect it, we always knew he would do great things (even prior to our diagnosis); it's just that our "great things" are what others would call "small things". When Jackson does the smallest of tasks, like pushing a toy with his left hand, we are overjoyed and when he does things other children would get in trouble for, like turn the light switch on and off a hundred times, we congratulate him like he just won a gold medal; so much so that now when he turns the light on and off, he looks at us and says "GOOD!" The kid is truly amazing!

He is learning and exploring his world and discovering new things everyday and he has so many words no that it is hard to keep up---his word of the week though is "COOL!"---Silly boy! He is also getting to the point where he will carry on conversations with you or OVER you, whichever is most convenient at the time. Just last night on the way home, he and I had a conversation about what we had both done all day---he started the conversation and then I asked him, if he wanted to hear about my day and he responded "yes"----what a truly remarkable accomplishment---there was more jabber than anything else, but I know the day is coming soon when we will be able to have full conversations and I can't wait.

On the medical update front, we are awaiting Jackson's new KAFOS and built up shoes, so that we can start using the walker, which me, Jon and Gayla (our PT) have modified to make it more comfortable for Jackson. Once we have the braces, I will post pics of him in it.

I will try to post pictures tonight----not sure how we are going to "celebrate" just yet...

xo,

the heckerts

One Energized Mommy

So after this year's Convention, I feel so energized to start change the world, okay maybe not the world, but doing things to promote and advance AMC Support and to make Jackson's life better. So I am on a mission to get a Miracle League Field near us---hopefully in West Baton Rouge parish, so that the local plants will get behind it. And I am also hoping to get a meet up together for all the Louisiana families. Just feeling so great about all my plans---can't wait to hear back from the Miracle League office...will keep ya'll posted

A Weekend of Shining Starts

I hate to use the word amazing to describe our second AMC convention, because it seems so trite and small compared to the time we had. In the time we spent with other AMC families, we learned that we are on the right track with Jackson's treatment and a couple of areas we need to work on, but all in all, we are doing so well! In just 4 short days, Jackson has learned to drink from a straw and throw a ball. We have also noticed he is straightening his right leg more and more. We met some really awesome families and truly enjoyed our time with a lot of other "family" members. P.J. and Jackson bonded as did Wendy (his mom) and I. Wendy tells me that P.J. looked just like Jackson when he was born and let me tell you watching P.J. "attack" Jonathan made me and Jon feel even better about our long term prognosis. Two high points of the weekend was:

1- our trip to Miracle League Field, it is a baseball field, like no other---just for special needs children, Jon and Jackson played the first round and he ran all the bases in his stroller. The second round, Jackson and I ran the bases together. When we finished, I was a crying mess---I never thought watching my child on a baseball field would bring me such joy, but looking back to the day he was born, I never thought it would happen. And to see the sheer excitement on his face made it one of the best experience thus far!

2- Rick from Positive Exposure---he is a former fashion photographer, who shot the likes of Cindy Crawford, long story short, one of the organizers of this years convention contacted him and asked that he photograph our AMC family--he agreed and I am so glad he did, his work is truly breathtaking and it is hard to be around him and not feel all of his energy---he took some of the most beautiful pictures of our AMC family, you can truly see the life and energy of our remarkable children and Rick's passion for photographing the "genetically different"

Another highlight of our weekend was hearing a geneticist and hand surgeon speak, the geneticist shared some very interesting things (that I will hopefully be able to process and post about later this week) and the hand surgeon said that Jackson's hands look really good and functional! 

We had a great time with our AMC family and can't wait until Philly next year!