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.