Where We've Been

It's been a long time since I wrote, but we've been BUSY!!!!

We've been to....

AMC Convention

Which was at Disney World!

To school, Back to see Dr. A (who said we are doing GREAT), To Shriner's (who said we are doing GREAT)!

All has been good on the home front! Jackson has excelled soooo much in school! He is feeding himself, walking much better in his walker and writing!!! We are so proud of how far he's come! Tomorrow, we embark on his first field trip and I couldn't be more excited! This weekend, Jackson wants to be a bus driver for our annual Whole Foods Trick or Treat!

An Open Letter to all of You who Wore BLUE!

Good Evening All,

My heart is so full tonight. I would have never dreamed that 3 years ago, we would be celebrating the First Annual Arthrogryposis Awareness Day, wow! And the response we got today from all of you was something I could have never imagined. Today, as I watched my inbox fill with pictures from people my husband works with, many of them, who have never put eyes on our son---I was overcome with emotions. But, when I clicked on my Facebook account, it looked like Smurfs had exploded all over the screen. I have received pictures from high school friend's parents, people who watched me grow up, and so many others!

So, from the bottom of our hearts, to our co-workers, friends, family, and our "journey family" thank you for the support----by wearing blue today, you filled my heart and my soul and it means more to us, than you will ever know that you were touch by our "little bumblebee"

your so amazing and lots of love,

DJJ

P.S. enjoy!

Wear Blue Wednesday - AMC Awareness Day

If you wear blue, please send me a picture, I would like to include it in Jackson's scrapbook!

My Aha Moment

aha moment: survive and thrive.

This was so much fun!!!!

The House that Built ME

It's the title of a new song by Miranda Lambert and it speaks volumes to me as we prepare to move into our new house this week. While we are all very excited to be starting a new chapter and giving Jackson the freedom and accessibility our "old" house could never provide, this is a hard time for me for a number of reasons. First, I have a very hard time letting go---I cried when I sold my Ford Festiva! And secondly, this house holds so many memories for our journey with Jackson. This is the house my husband hand sanded the floors of his baby room in. This is the house I was pregnant in. This is the house where Jackson came home to. This is the house where he said his first word (mama), ate his first food (butternut squash), where I made all of his baby food, where he rolled for the first time, where we did OT & PT too many times to count, where he WALKED for the first time, where he fed himself for the first time, and where we all learned so many lessons. We close on our new house in just 3 days and as my hubby told me this morning "the new house will be the first one he runs in!"

It will be tough to leave, we take the memories, but this is the house that built him for the first 3 years of his life! And where I learned about being a mommy and a wife!

"We live by faith, not by sight"

Funny how things can catch you off guard sometimes! I am sitting here tonight, after researching Spinal Muscle Arthrophy until my eyes hurt last night just playing around and looking at shopping sites, when I ran across a necklace that said this very quote. Very funny, God! I needed that. I have faith that God led us on the path to TX Children's in our search for more answers for Jackson and our family and that He put us here today. I have faith that there is a reason there was an early opening at the MDA clinic. But sometimes, I question why, when I can't see a clear answer. Thanks, God---I needed that to remember to live by faith!

He is RISEN!!!

What a wonderful and fulfilling Easter we have had!!!! We began our Easter weekend with an Easter egg hunt at Healing Place Church. The place was AMAZING and God's presence was felt by our family! Jackson had a blast and to see the other children willing to give him their Easter eggs during the hunt did my heart wonders! HPC even provided hair cuts for mom's and I partook in it and have a new fabulous doo!!!! On Sunday, we got up and saw that the Easter bunny had made a stop to our house and then we went to Easter mass----it is always one of my favorites, but our 3 year old did not make it through the whole service----but it was beautiful none the less! We came home and had both our families over for boiled crawfish! It was a great time shared with our family, including our "adopted" family Kodi, Brad, and Braden! Everyone got a full belly and had a blast!!! Jackson played with everyone and was in bed by 8 and asleep by 8:05!!!! What an amazing God-filled Easter weekend!!!

whew!

Today we had another visit at Shriner's in Houston with Dr. G and we received news that I was pretty sure we would get today. For the past year, we have been stretching and working on getting Jackson to "functional" point with his upper extremities---we have stretched and work from the day he was born, but over this past year, we have had intense focus to try to get him to a point to put palm to palm. Everything we have done has been successful, but Dr. G (and us) feel like we have reached a point that surgery is the only way to get closer to independence, especially in the area of self-care for Jackson.

I won't say that this is a decision that makes me or Jon happy, but it is a decision we are (well, at least for me) slowly coming to terms with. It will be tough to send my almost 4 year old back to the surgery area, when he is old enough to know what is happening, but I know in my heart that this is what's best for him.

I also take comfort in knowing that what Dr. G said today is true; "we have done ALL we can to help Jackson, the therapies, the stretching, the e-stim, etc., but the only way to give him the external rotation and range of motion is to do this surgery."

So, it is with a lot on my heart and my mind that I tell you, we head back to Houston in September to re-evaluate and get a surgery date for the first arm osteotomy. The second arm will be done about 3 months following the first one. In the interim, please pray for peace about this decision for us and strength and courage for us and wisdom for our medical team.

xo,

DJJ

Growing Up

Wow---what a big boy Jackson has become! Ever since I went back to work, I have sat on the couch every night and held Jackson until he went to sleep, I do NOT regret one second of it, but now that he is a little over 3, I figured it was time to get him to go to bed on his own. Plus, I need some MomMe time! So, last Tuesday, we started getting ready for bed, drinking milk while reading a book and then putting him down in his bed fully awake. The way I convinced him to do it, was by setting a timer on my cell phone and letting him know that if it went off and he was still awake, I would come and get him. Well, the first few nights, he cried a little, but quickly went to sleep with his music on. Last night, he didn't make a peep, gave me and daddy kissies and headed to bed. Tonight, he gave me his milk cup and said "I ready"---kissed daddy and I put him in his bed after kisses and I love yous! And he went right to sleep. I am so proud of him! He is such a big boy!

Believe Dat

Three years ago today, I became a mommy. I can't believe it's been 3 years already, but wow, what a journey it has been. I still remember back to how scared I was the first time I laid eyes on Jackson and the meltdown I had with my mom on the phone outside the NICU because I couldn't figure out how to change Jackson's diaper and never thought I would learn. Over the past 3 years, I have learned to put on diapers, care for cast, change braces, modify braces, fight for everything and advocate for my amazing miracle! Today, my bumblebee flies, he is fully potty trained (day & night), in school 4 days a week with the necessary supports and fully included, walks in a gait trainer and is the smartest little thing I have ever met!

I would be remised to write this post and not acknowledge those who have been with us on this journey. First and foremost our family, including those who are not our family by blood, but by circumstances and most importantly by love---our AMC family. Without y'all, I would have no one to ask all the "silly" questions to like, "how do you wipe your own butt?, how do you eat?, how did you learn to drink from a regular cup?" You have been the brightest spot for our family over the past 3 years, what an amazing bunch of women, men and kiddos y'all are! Secondly, to those who share our days with in preschool, these kids took to Jackson and they are his buddies and girlfriends---they make me so proud! Another huge part of preschool and Jackson's success there has been "Stephi, Wephi"----she helps Jackson be included and he absolutely LOVES her, even when he's tough on her!

Three years ago today, I not only became a mommy, I also became a different person, with a different life and I wouldn't change one moment---What a great 3 years it's been and I can't wait to see what the next year holds for us....

much love (& who dat!),

the heckerts

Almost 3

I can't believe that in less than a week, my little bumblebee will be 3. Today, we had his first IEP meeting and we accomplished a lot----got everything we wanted, including being able to ask another parish to provide him services, since he is in a classroom setting in that parish. Wow! How far we have all come!? I never thought I would be so dang tough, but Jackson made me a better person and pretty dang good advocate. This weekend will be crazy and fun....we are having a birthday party, with quite a few kids from his class coming...I think I am more excited than he is!!!! Cakes to make and food to make....

More questions than answers

What an emotionally and physically tiring day! We went to see a neurologist at Texas Children's today, upon the recommendation of Dr. Hall. We wait for 6 months for this appointment and we feel like we got a lot out of today. But as we are finding our more and more with Jackson, we got more questions and not a lot more answers. Dr. Rodriguez is an amazing doctor and I can tell you I admire her and believe she will be a great guide as we continue this journey.

So what did she say, well, here it goes. She believes that Jackson possibly has Spinal Muscle Atrophy (SMA)----let me warn you before you go goggling, if this is a true diagnosis for Jackson, he does NOT have one of the more severe forms----that being said, he would still be diagnosised as having AMC, it just happens to also fall under the Muscular Dystrophy umbrella too. That could mean a number of things, some I know and others I still don't, but the good news for us is that there is another mommy to an AMCer, who also has SMA, so she and I will talk soon.

So for now, Dr. Rodriguez is ordering a MRI on Jackson's brain and spine to see if she can see any changes from the originals in the NICU and see if there was possibly any stroke(s) in utero. She has also referred us to a Physical Medicine doctor at TXCH and to the MD clinic there. All of these things will take time and we may not get into the MD clinic for 6 months - a year. Once we go there, we may have a blood test to check for SMA, nerve conductivity test, and/or EMG test. All these things together will give us a clearer picture of what the future may or may not hold. But for the most part none of this will change our plan of treatment or therapies.

One of the highest points of today was Dr. Rodriguez said "Keep doing what you are doing, it's working". So we keep chugging along on this journey with our little mystery miracle.

You are my....

Saw this on someone else's blog and I absolutely adore it....

You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001



I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.

I never knew....

There are a many things I never knew until I had a child, especially one who is differently abled, most of the things I have learned along the way are happy things, like sheer joy and a love like I never knew before. But today, I learned something I thought I knew before, but really didn't. Today, I learned what a true broken heart felt like.

When I went to pick Jackson up from school, his teacher told me he was sad at recess, when she took him aside and asked him if he was sad, he responded "yes". She asked him why he was sad, to which he responded "Because I want to play like the other kids"---meaning he wanted to climb and run with his peers. Right then and there, my heart smashed into a million pieces, I was so sad and taken aback, I thought we had a couple of years before we enter this phase---guess I was wrong. But I am eternally grateful for his teacher, who helped to glue parts of my heart back together when she told me that she took him and helped him climb with the other kiddos. It's nice to know that she knows the importance, not only to Jackson but to his mommy!

My heart is still broken, but not my spirit and neither seem to be bothering Jackson, he has been his rough and tumble self all evening. I know in the end, it will all be fine and Jackson will continue to amaze me and all those around us.

A Promise Kept

Today a promise made was a promise kept. Jackson ran after Dr. Accousti in his walker. It was one of the proudest moments thus far on this journey! And from the look on Dr. Accousti's face, it was a pretty proud moment in his life too. We are so fortunate to have a doctor who believes bumblebees can fly to---in their own way and in their own time, but they fly. What a great day!!!!

A Promise Made

Ever since we started going to New Orleans to Children's Hospital when Jackson was just a month old, I have told Jackson and his medical team there, including Dr. Accousti, that on the day that Jackson could walk, I would let him chase them down the hall. I told him this every time they cast his feet, every time time they stretched him and every time we made the trip. I knew that one day he would chase them down the hall and tomorrow he WILL!!!! I told him tonight while getting him ready for bed that I would let him chase Dr. Accousti and the cast team down the hall, it was a promise I made to him long ago. And Jackson told me he was going to chase them fast, "like a helicopter". I can't wait to see it and in the words of Jon, I will probably stand in the hall and cry like a baby, but I don't care---my bumblebee just keeps flying!

When Life Hands You Lemons...

I recently received this award from a parent of another beautiful little girl with Arthrogryposis (http://addymills.blogspot.com/). The lemonade award is to honor those people who show great attitude or gratitude, hence "When life gives you lemons, make lemonade."

This award comes with rules and here they are:

1. Put the Lemonade logo on your blog or within your post.
2. Nominate at least 10 blogs with great attitude or gratitude.
3. Link the nominees within your post.
4. Let the nominees know they have received this award by commenting on their blog.
5. Share the love and link to the person from whom you received this award.

Here are the nominees:

1. http://baby-braden.blogspot.com/
2. http://oliversmiracle.wordpress.com/
3. http://fortheloveofdani.wordpress.com/
4. http://donnamurray.blogspot.com/
5. http://rudderfamily.blogspot.com/
6. http://fromthetrenchesofadoption.blogspot.com/
7. http://forabby.com/
8. http://babystoffer.aboutmybaby.com/ (Adison)
9. http://daddymurad.blogspot.com/
10. http://www.theresalucas.com/

Take a minute and check out these awesome kiddos and adults, each and everyone of them have changed our lives!

xo,

djj

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.