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