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

A Bee Can't Fly

Good Morning All!

Jonathan and I are having a great time and meeting lots of parents and kiddos. Yesterday, we participated in a parent's round table. There were many a tears shed, but it was one of most uplifting activities thus far. It was an open and honest discussion among parents who truly know what we are going through.

One story that will truly stick with us is this:

Science says the bumblebee can't fly. Those little, fragile wings can not hold up

that big, fat body. But God says that bumblebees can fly and so the bumblebee flys.

In spite of what doctors and others say Jackson and children like him can't do, they do and prove all of them wrong. Meanwhile astonishing all of us!

Jackson seems to really be enjoying his time here as well, he's even meet a pretty cute girlfriend--her name is Natalee. (we will post pics when her mommy sends them, Jackson's mommy forgot to take her camera on their first date!) And guess what she's an older lady; that's right, she is almost 1!

We have learned a lot of valuable information to bring back to all of you and our medical team. Today, we have more workshops, which I am sure will be just as uplifting. We can't wait to see what today holds...

XO,

JJD

We are in the Big D and I do mean Dallas

Good Afternoon,

We arrived in Arlington yesterday and have been taking it all in. We have meet lots of parents and kids. We just finished up a parent's round table discussion. It was great to hear from several others in our situation but to also hear the uplifting stories. These kids really are "so resilent".

My Newest Tricks

When Jackson was a little over a month old, we meet another little boy, Peyton, who also has Arthrogryposis. His dad, Ryan, told me something that has stuck with me since, "This is a blessing and it makes you appreciate the milestones that much more." How true it is. Anytime Jackson does something that to others is considered "normal", we pull out the camera and snap shots to post and share with everyone.


Of course we took the first bath pics, the looking I am going to my first pedi appointment, etc. But not many parents would run to get the camera when their child sits for the first time assisted, but we did. The milestones do mean so much more. I am not sure why that is; if it's the fact that we (Jonathan and I and Jackson's caretakers) work so hard or if it is that we sorta don't expect it. But let me tell you sitting and using his arms to balance was cause for celebration at our house!

Here are some shots of the latest tricks Jackson has shown us.

Our first "real" stroller ride---it's the first time Jackson rode sitting up!

Sitting in the grass balancing himself on his arms!










And our brand new one, as of yesterday---initiating his head to see objects he wants---he is so close to sitting unassited!













We can't wait to see what other tricks Jackson has up his sleeve for us!

Jackson's First Solo

4 months

A little before Jackson's 4 month birthday, we traveled to Shriner's in Shreveport to see the doctors and therapists there. The lower extremeties doctor reaffirmed our plan in New Orleans with Dr. Accousti, so we decided we would continue the lower extremeties at Children's as it is closer for us. We did see a team of wonderful occupational therapist, who made some of the best hand splints we have ever seen. They also finally made the elbow splints mommy wanted to try so badly. And guess what, just like mommy said, they worked!

Surgery (Clubfoot)

On May 16, 2007 Jackson had a heel cord release done to completely correct his bilateral club foot. The cast did a great job, but Jackson's feet were still "tight", so his Achille's Tendon had to be clipped, to complete the correction. He was in cast for 3 weeks post op and then we moved on to KAFOs.

3 Months

At 3 months, Jackson was progressing better than any doctors or therapist had ever thought we would. Jackson had surgery for his club feet a little after his 3 month birthday. Total time Jackson was in Ponsetti cast was 6 weeks, which is "normal" for club foot with no other cause. However, when it comes to club foot with Arthrogryposis as the underlying cause, the norm is closer to 6 months. What can we say, the boy is breaking records already!

Also, at three months, Jackson is learing to sit up assisted. Which also means he is hitting "milestones" just like he should. He has also been seeing Early Steps (Physical Therapy) at home once a month and is "batting" at objects, also age appropriate.

My First Fourth of July

I spent my first 4th hanging out with my grandparents (on both sides) and my mommy and daddy! Even though mommy said it was too hot for me to go to the fireworks this year, it was so much fun!

XO,

Jackson

2 months old

Jackson continued to progress and a little before we celebrated his 2 month birthday, we began serial castings in New Orleans with Dr. Accousti to correct his bilateral club foot. Jackson's 2 month birthday, just happened to fall on his 1st Easter. With in the first 2 months we moved from a simple piece of gauze with roban wrap to hard plastic hand slpints! Who would have thought we would be here, because when he was born, his hands were so tight, we couldn't even get our fingers in there, and now he can grip well with his left and somewhat with his right!

We were able to get one bath in prior to the start of castings, his umbilical cord fell off the night before the first appointment. He really seemed to enjoy the bath part, now the drying off, not so much.

Our First Month

Within our first week home, we continued taking Jackson to therapy that was started in the hospital. In his second week home, we went to our first peditrician appointment and to see the pediatric orthopedic in Baton Rouge. We had a bad experience with him and decided that we wanted to see someone else. It's a long story, but the straw that broke the camel's back was when he told me and Jonathan "The only way to fix these children is with surgery". First of all he is not broken and secondly he is our child. So...we called our peditrician and asked for a referral to the same orthopedic who did my back surgery at Children's Hospital in New Orleans.

We set up an appointment and saw Dr. King, who referred us to Dr. Accousti for Jackson lower extremities and Dr. Faust for the upper extremeties. We continued our therapy regiment twice a month to physical therapy (PT) and twice a month to occupational therapy (OT) and continious therapy at home. And in one month Jackson had improved beyond all our expectations.

NICU

So at 1 p.m. on his birthday, I could feel my legs; I promptly told the nurse and she said that I had to wait until 4 o'clock to go down and see him, needless to say I was beside myself. However, they did say that Jonathan could come down and see him. Jonathan felt terrible about being able to see him before me, but I wanted pictures, if I couldn't go myself, so I made him go. He went alone the first time---I am not sure how he did it, but he found strenght inside of himself to see Jackson for the first time alone, something I am not sure I could have done! He came back up and had tons of pictures, he took close ups of the hands and feet, he knew mommy would want to see it all. At that point, we realized that the diagnosis of Distal Arthrgryposis was highly unlikely, since all joints were involved. The second person to see Jackson was my mother.

Finally, at about 4:30 I got to meet my baby boy. I was so overjoyed but also so overwhelmed! The same night Jackson was born we met with the geneticist. He told us that he does not believe that Jackson's Arthrogryposis Multiplex Congenita (AMC) is genetic. Arthrogryposis Multiplex Congenita is the new diagnosis we have been given. It is a general diagnosis that translate into "multiple joint contractures at birth". In order to get a more specific diagnosis, we would need to see the geneticist again and possibly one in Seattle (Judith Hall, who is the leading Arthrogryposis researcher), but that will come later, as the genetic diagnosis does nothing for us as far as treatment options. Simply, because what Jackson has is not a syndromic form (children with syndromic forms have other complications, which may include the need for a feeding tube, breathing tube, etc.).

Jackson spent the first eight days of his life in the NICU, we had a wonderful group of doctors and nurses, who all took very good care of him. On day four of his stay, mommy was sent home. It was one of the hardest things that Jonathan and I ever had to do. We left him in capable hands, but it was tough. On his sixth day of life and his first Valentine's Day, Jackson had surgery for bilateral hernias in his groin. Dr. Loppo sucessfully reparied both hernias.

Jackson spent two more days there and was able to come home at 8 days old. Jonathan and I were so happy to have him here with us.

Birthday

Ok...so I have decided after reading and thoroughly enjoying another special need's mom's blog that I would create one for Jackson...So what better place to start than his birthday! Jackson was born on February 8, 2007 at 8:14 a.m. via C-section, because he was breeched. Prior to my C-section at about 6 months along, we met with an anesthesiologist at the advice of my OB, as I have the metal rods in my back. This anesthesiologist told us that he would try an epidural as many times as I wanted (this was when we still thought we would not have a section). We discussed all the complications, etc. and we were set, I would get the try for the epidural as opposed to being put under, as Jonathan could not be there if I was under general anesthesia. So on the morning of the 8th, we arrive at the hospital at 6:30 a.m. we go in to be prepped and the nurse anesthetist (anesthesiologist assistant) comes in to talk to us about what is going to happen. Well when I hand her the folder with all the information about my back that the other anesthesiologist had told us to bring, she about faints! She apparently knew nothing about the rods, so she goes to get the anesthesiologist, who also flips out! But thank God we had a wonderful L&D nurse who fought for me and made the anesthesiologist at least try the epidural, so that Jonathan could attend the birth. The anesthesiologist told her that they had to get me to the O.R. NOW; about 30 minutes prior to when we were supposed to go back. So they roll me to the operating room and make Jonathan sit out in the hall. They make me climb on a skinny little table in all my glory at 9 months pregnant in a hospital gown! And I had read that you should lean into your nurse, so that is what I did. And let me tell you even though we didn't go natural as planned, I sure used the Lamaze class we had been to in order to breath through the epidural. In the middle of the procedure of putting in the epidural, they realized that they needed a hard needle, as they had to go through the rods. The nurse runs out in front of Jonathan, who told me he was praying so hard on the Hail Mary rosary I had left with him, but he couldn't remember the Hail Mary, so he just prayed real hard! Well, all those prayers and a wonderful medical team paid off---the epidural worked!


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!" (this was the first time we knew the gender, we wanted a surprise) speaking of surprises, well Jackson gave all the operating team one, he peed on them! 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" (the green bag in the picture) to help him breath, as he had swallowed amniotic fluid on the way out. They let Jonathan and I see our family and then I went to recovery, being told that as soon as I could feel my legs, I could go to the NICU to see Jackson. Jonathan and our family went to my room to wait for me.