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!

Happy 1st Birthday JackJack

He did it! He did it!

Last night, for the first time Jackson fed himself! It was a truly amazing accomplishment! Needless to say I had daddy and the camera on standby and we caught it! Wow!

After the first puff made it in the mouth, Jonathan and I sat and held Jackson and each other and just cried. I have to tell you it was one of the proudest moments of our lives together thus far. And the best part is he figured it out all by himself! The little things really do mean so much more! Here are some shots to enjoy!

Testing the Stander

On Thrusday at therapy, we got to try out the stander. Jackson LOVED it, so much so that when it came time to get out, he threw a royal run away---so I guess pretty soon I will have a standing Prince! You can see the joy in his face and the relief in our PT's! Gayla has been working with Jackson since he was 5 days old and she could have not been more proud then at the moment she put him in the stander and he did so well and neither could I! He is doing so great and is a real trooper. We should be hearing about our new AFOs and stander sometime this week. I will keep ya'll posted. Meanwhile, keep us in your thoughts and prayers.

All our love,

DJJ

A Weekend of Trick or Treating

On Wednesday evening, we joined Braden and his mom, Kodi for trick or treating on sorority row at LSU. We had a great time and the boys were of course a hit---Jackson as a monkey and Braden as the one and only Dog, the Bounty Hunter. Then on Saturday, Jonathan and I took Jackson to the pumpkin "patch" at University Methodist Church. And let me tell you this boy loves hay! We had to pry it out of his hands after he sat in the wagon! On Sunday, we once again joined the Wilsons for Boo at the Zoo and then pictures at Sears. We all had a great time!

A Bunch of Updates

The past few months have been a whirlwind, hence my lack of posting and picture updating. Jackson is progressing so well, that I can't tear myself away from him to post because I want to see what he will discover next. Recent accomplishments includ rolling over on to both sides and onto his belly. And sitting UNASSISTED! (FYI: he's not crying because he is sitting but instead because he wants the toy in front of him). When he rolls over on his stomach, Jackson is trying to "push" off and crawl on his belly. I think it won't be long until he gets it!

On the medical front when we saw Dr. Accousti last week, he gave us the approval to make Jackson wear his braces only at night. This is amazing and very positive news, it means our feet are not regressing, which can be the case with AMC kids. We do still have some hypotonia in the legs and will be ordering hip helpers to hopefully assist in correcting this. And the most exciting news---we are getting a stander! Here is what it will look like: http://www.alimed.com/ProductDetail.asp?style=82040&fprd=EasyStand%26trade%3B+7000+Magician%2Aei&oid1=&oid2=

The stander and our new AFOs (ankle feet orthotics) should be here in the next couple of weeks and let me tell you this boy is ready to stand!

And to top it all off this weekend, Jackson said his first word and it was...MAMA!!!! I can't tell you how excited I was!

Keep us in your prayers as we await our equipment and next month's trip to see the hand doctor and geneticist at Shriners.

All our love,

Doris, Jonathan and Jackson

Hanging Out

We have hung out with Braden and his family recently and the boys can't seem to get enough of each other! Jackson is in love with Braden's beautiful curls and could play in them for hours. Braden is quite smitten with Jackson too! Here are some shots of the boys hanging out!

We are taking them trick or treating this week, so be sure to check back for those pics!

YumYum in my TumTum

Jackson has been on solids since the middle of August. When we started getting close to his 6 month birthday, I started researching making our own baby food. Kodi (Braden's mom) put me in contact with a dietician friend of hers and she helped me figure out the basics. It is so much fun and Jackson always appreciates my effort! I have made all of his foods thus far, except the yogurt and rice cereal. And to date, we have not found a food this boy doesn't like! He is a great eater! Here are some shots daddy caught for us...

My First Parade

Jackson attended his first parade in Morgan City during the Shrimp and Petroleum Festival. We had a great time hanging out with "Aunt" Kelly and her family. Needless to say Jackson was a HIT! And let me tell you this kid loves a good parade---just like his mama!

Mike's Coming Out

Like any good LSU alumni parents, we want Jackson to know Mike the Tiger. So when the University announced that Roscoe (the newest Mike) would be put into his habitat, Jonathan and I jumped at this "once in a lifetime" opportunity. Jackson was a little unsure of Mike at first, but soon warmed up and was "yelling" at him!

You are my Hero

We had a pediatrician appointment this morning and when I got to work, George (a new faculty member) was in the hall with is son, Ethan, who is 5. George said hi to me and told me his relocation paperwork was with David (office admin. assistant). I said, yeah, I’ll get it from him; we had a pediatrician appointment this morning.

George says, oh, just a check up and I told him yeah, you know you have to go a million times in their first year of life…to which he responds, you have a new baby. I said yes a 6 month old. I proceed to tell him about Jackson’s Arthrogryposis (because I was showing him pictures). He looks at me and simply says “You are my hero”.

I never set out on this journey to be a hero---and I certainly don't see myself that way, I am simply a mother taking care of her child, just like millions of other moms out there. We may do things a little differently, but I am just a mom taking care of a beautiful and joyful 6 month old. If anything, Jackson is my hero---that kid is a trooper! And he has such a good disposition. Still, what George said was just one of the nicest things anyone has ever said to me.

We got the go ahead for solids, so we start with rice tonight...be sure to check back soon for an update on that.

XOXO,

DJJ

Six Amazing Months, One Amazing Boy!

Good Evening All!

I am not sure where to begin. Today our little boy officially turns 6 months old. What a wonderful and amazing 6 months it has been. Since he was born and came off the vent 13 hours later, Jackson has been making progress, like none of us or none of the doctors for that matter ever thought he would. Simply put he has amazed us all. To date, Jackson has only had one surgery to release his heel cord. He is hitting all the milestones, including sitting up assisted! He can even roll over if we help him pull his legs together. His new favorite toy is his “car” (video coming soon) and his exersaucer (which his maw-maw Glass bought him long before he was born).

As I reflect back on the past 6 months, I am amazed at how all of us have progressed. I vividly remember when Jackson was 2 days old, I went down to the NICU and the nurse asked me if I wanted to change him. I, of course, jumped at the chance only to soon realize that this was much different than any diaper I had ever changed. I couldn't pick up Jackson by his legs, instead I had to lift his whole body. I was in such emotional shock, that I told the nurse I couldn't do it. I called my mom and told her I didn't know how I would care for Jackson and she told me I could. I knew that I had no choice. So the next day I pulled myself up by my boot straps and did it. Now, I can change Jackson's diapers by lifting his legs, but sometimes, I still lift his body, because I can change his diaper any way I want to and in fact, I am pretty quick at it (even if I must say so myself).

I won't say that I have progressed through all of our trials and tribulations so well, I have my moments, but for the most part we all do really well. I know that we can get through anything with the continued love and support of our family and friends.

And let me tell you Jackson is smart. It truly seems like everytime a doctor, therapist, etc. says something negative about his progression or prognosis, he proves them WRONG. For instance, I was so concerned after our Early Steps therapist asked me about his grasping skills, because they seemed to be lacking, that I called a good friend of mine to confide that I was a little upset.

Well, like any good friend, who only needed one good reason to buy Jackson some toys, she set out and bought Jackson a ton of small objects to grip. Two days later when "aunt Kelly" and "maw-maw Neet" delievered their toys, Jackson was ready to show them how he could grip! (video coming soon)

Jackson continues to defy all the “norms” when it comes to his condition. As most of you know, when we went into the casting process we were told that we could be looking at 6 months, instead Jackson wore the casts for 6 weeks. Well, the last time we saw Dr. Accousti, he told us that in the next 2 or 3 months, we could possibly be looking at wearing our KAFOs only for nap time and night time---a truly amazing possibility---as most children with AMC are wearing their KAFOs for 23 hours for at least the first 3 years of life. Currently, our only concern with Jackson’s lower extremities is his hypotonia, which keeps his hips in the “frog-like” position.

As for his upper extremeties...they are doing remarkably well---he can even balance himself with his elbow bent---a feat he accomplished while I sit here typing!

Please continue to pray for our family. I know that we would not be in such a remarkable and amazing place without your prayers and support.

It has truly been six amazing and glorious months with one absolutely amazing little boy.

All our love,

DJJ

A Whole Bunch O' Stuff

Please forgive the multiplicity of this post. But I have a lot of stuff to get in.

We had a great time in Dallas and learned some really great things and meet some really wonderful families! One of the therapies we learned about was kineso taping, which is a type of sports medicine. We are currently taping Jackson's middle finger and thumb out and he seems to be getting a better grip. While in Dallas, we also got to paint with Jackson's feet---I am not sure he liked it a lot, but his feet are on the picture for next convention! And anyone who knows Jackson's mommy knows that if she is within a few miles of a Shipley's DoNut she is going, so Jackson had his first trip to Shipley's! And Daddy got to check out the Cabela's or as Mommy calls it the "Man Mecca"...dad is patiently awaiting the opening of the Gonzales store.

We have also spent 2 weekends at Maw-Maw and Paw-Paw (Heckert's) swimming with our friend Braden and his mommy (Kodi) and daddy (Brad).

We are enjoying spending time with another family that is similar to ours. and the boys simply love each other. And I swear that if you see the look in their eyes when they are together---they just "get" each other.

On another note, I joined a bible study group that Kodi (Braden's mom) is a part of and I really feel like it is going to be a very positive experience for me. See ya'll soon.

DJJ