Louisiana Hayride

Yesterday night was quite a night! We went to the historic Municiple Auditorium in downtown Shreveport to the Louisiana Hayride! The Louisiana Hayride band was there as well as Dirt Foot and Willie Jones from the popular tv show The X-Factor! This night was very cool because we got to listen to awesome music, but important people who have made the Louisiana Hayride possible were awarded and recognized. This night was special for many people and one we will never forget!
There is also a few videos from the Hayride that we will upload to our facebook page “The Bow Legged Cowboy”!!

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The stage for The Louisiana

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Waylon’s new friend, Willie Jones!!

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Group pic!! 🙂

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Mrs.Nona, Waylon, Ashley, Chelsea, and me

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Me, Waylon, my sister Ashley, and Willie’s parents! They are the sweetest people you will ever meet!

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Me, Waylon, and a HUGE guitar!

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Story Time with Clifford

Yesterday morning we had story time with Clifford at our local book store! It was so much fun! We even got to see our friends Ariel and Alleigh! Waylon and I can’t wait until next month when we get to meet Curious George!

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Clifford the Big Red Dog!! ❤

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Waylon and Alleigh after taking pictures with Clifford!

One in a Million

Today, Febuary 22, 2013, was Waylon’s first appointment with Dr.Chen! We have been to Shriners two times before, but this was our first “real” appointment.
Our first appointment at Shriners, as you might have read in a previous post, was with Dr.Gates. He is the orthopedics doctor at Shriners. He told us (along with another doctor) that he thought Waylon had a form of dwarfism called Spondyloepiphesial dysplasia. We had started to do exercises with Waylon where we stretch his arms and legs to get his joints moving and ready for our next step in treatment!
At today’s appointment, we had a few x-rays done of his spine. When Dr.Chen took a look at them he noticed that Waylon had some sort of “cleft spine abnormality” and I really don’t know how to explain this other than saying it causes his spine to curve at the bottom (if that makes any sense)! Dr.Chen also informed us that there is a possibility of scoliosis which is curvature of the spine, but in a different way! We will not be able to tell until Waylon grows some more and more x-rays are taken because this could just be the way he was positioned! This is pretty confusing so I will have to see if I can get some pictures of his x-rays to post! During this visit, Dr.Chen also noticed Waylon’s red mark on his forehead and an ambilical hernia (protruding belly button, or an “outie”). We know for sure that we are dealing with some form of metaphesial dysplasia. These are all symptoms of a form of dwarfism called Kniest Dysplasia!
Kniest Dysplasia is a very rare form of dwarfism where someone has short stature, malformed bones and joints, and sometimes hearing and vision impairements. This skeletal dysplasia is found in about 1 in 1,000,000 live births! Waylon truely is ONE IN A MILLION!!
After visiting with Dr.Chen, we had an appointment with Dr.Gates! They made sure Waylon was able to move his joints well and to see how well his exercises had been working out. Together we decided that it might be best to try braces along with exercises to see if we would get his legs to straighten out better. There are two reasons why is legs are bowed.. one is obviously the bone itself is bowed, but also, the muscles and ligaments are pulling at the bones which are keeping them bowed! The exercises help with the muscles and ligaments stretching, while the braces will help his bones straighten out! We did have him fitted for some braces (we will start them in a month) and this cool momma picked out camo braces! He will be so stylish!
Overall, this appointment was very insightful and has given us a new wave of information, as always! But, there is nothing this momma can’t do because God is on our side!

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Dr.Chen and his nurse! 🙂

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Waylon posing before getting x-rays done!

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Getting his feet and legs measured for braces!

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Getting fitted for braces! This was no fun, but he did great!

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Another picture of Waylon getting fitted for his braces!

Valentine’s Day Mommie and Me Party!!

We recently joined a mommie and me group on facebook where mommies in the Shreveport/Bossier area get together and let our babies play while we chit-chat! On Febuary 13th we had a Valentines party! Waylon and the other babies exchanged valentine cards for the first time! It was so much fun! Waylon gave out Cars valentine cards to all of his friends! Us mommies ate pizza, cookies, and candy while our sweet babies played together! Can’t wait to get to know these ladies and their precious babies better! Here are some pictures from our special day!

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From left to right: Dalby, Alleigh, Waylon, Aubrey, and Brayden!!

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Our friend Sara (Dalby's mommie) was a wonderful host! So many pretty decorations!

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She even made us yummy heart shaped cookies!

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We will be best friends forever!!

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Dalby and Alleigh!! ❤

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Waylon, Aubrey, and Brayden!

Shriners Hospital for Children in Shreveport, LA

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Our first visit to Shriners was when Waylon was a week old. I was really nervous before going to his appointment because I was not sure what to expect. As I signed in, the receptionist pointed me back to the clinic where I needed to sign Waylon in and fill out paperwork. As I walked passed everyone waiting, I felt a sense of peace. Things only got better from there. As I was filling out my paperwork, Ms. Patsy called me back to get Waylon registered. Before she even started asking questions, she handed me a stuffed animal for Waylon and shook my hand. With a huge smile she said “Welcome to Shriners” and from that moment on, I knew my son and I were embarking on an incredible journey.

Towards the end of filling out my paperwork, she asked me if there was an emergency contact I would like to have put in the system and I said “yes, my mother”. Her eyes lit up when I told her my mom was Melinda Acklin, her old friend from the in-patient unit (My mom used to work there)! I was surprised too because I didn’t think my mom knew people outside of her unit and I certainly didn’t think they would recognize her without her there with me!

Before Waylon was called back, my mom showed up to attend his appointment. I felt like complete royalty! Everyone knew my mom AND I was lugging around a week old baby!

At this appointment they did x-rays on Waylon and showed us how to do some stretches for him to loosen his joints. We also scheduled an appointment with Dr.Chen for Febuary (he is our genetisist)! I will update more then!

We also had to go back to Shriners when he was two weeks old to get some blood drawn for a thyroid test. His levels were slightly elevated, but they said he does not have hypothyroidism. (We thought his SEDc could have been caused by the thyroid because his dad has HYPERthyroidism and HYPOthyroidism is linked to SEDc)

PICTURES, PICTURES, AND MORE PICTURES!!

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Waylon’s hospital wreath. I had to hang it on my door even though he was down in NICU. They wouldn’t let you hang them down there.

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Just chillin and chewin on my fingers! ❤

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Waylon’s first car ride!! (Coming home from the hospital!)

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This picture shows his arms when lifted up. As you can see, not only are they short, but they also do not fully extend.

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This picture shows his legs when straightened out.

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This shows how his left foot sort of looks like club foot. It has been confirmed that it is not club foot.

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This is another picture of his left foot.

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This picture shows the shape of his head. It has “normaled” out some, but he still has a short neck like this picture shows.

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This picture was taken while he was in NICU. This was right after he was born (taken by my mom.. I wasn’t allowed to see him until the next day.)

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This picture shows how his legs bow inwards. It has straightened out on it’s own a little bit. Some of this is due to him being breech in utero.

Our Story

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It was my twenty week appointment at Dr.Kinder’s office (my OB). I was so excited because I was going to find out if I was having a baby boy or a baby girl. I really wanted a little boy because I just could not see myself being able to dress up a little girl if I’m not girly myself!

When we got to his office I was nervous beyond belief!! I am lucky that my mom and sister were there with me or else I would have gone crazy! Finally the nurse called us back for my ultrasound. As she poked on my belly trying to get different views of my baby, it was really awkward and quiet. No one really said anything until the ultrasound tech said “It’s a boy!” I was thrilled! This is exactly what I had wanted and I couldn’t wait to get home and plan on having my little cowboy! Little did I know, before long I would be knocked off my high horse.

Later that day, Dr.Kinder’s nurse called me and informed me that my son was not growing at the same pace other babies do. She told me I had an appointment the next day with Dr.Briery who is a perinatologist. This was so they could get a better look as to what was going on. At this point I didn’t realize what was happening or how it would effect my pregnancy, delivery, and life after.

The next day at the perinatologist’s office my mom and sister sat with me nervously waiting for the nurse to call me back. Again, this apointment was silent and awkward until Dr.Briery came in. He also did his fair share of poking and picture taking… and I will never forget when he looked at me and said “Alyssa, it doesn’t look good.”

My entire world fell to pieces. Just yesterday everything was fine and I was going to have the perfect little boy.. and now this! I thought it must be my fault. There is no way this could “just happen.” I was absolutely crushed and couldn’t even understand what was happening.

Dr.Briery said he didn’t know what it could be, but I could have an amniocentesis to test for Trisomy 13, Trisomy 18, and Trisomy 21 (Downs Syndrome). He explained that there was a huge chance that the amniocentesis would not hurt my baby, so I agreed to get it. After it was done, we left for home and of course I was too much of a wreck to drive.

When I got home, all I could do was cry. I was terrified! Would my son, be able to walk, talk, play sports, and make friends.. would my son even live?! So many questions and worries raced through my mind. This is all I could think about!

The next appointment I had with Dr.Briery was just as hard. My mom was the only one with me for this appointment and the rest thereafter. At this appointment I was a bit more collected and was able to listen more of what was wrong. Dr.Briery told us that his head was big (90th percentile), his long bones were short (less than 2% than the average child), his femur was bowed, he had a very small chin, frontal bossing, and no nose (that he could see). Of course this was not good news and I was completely lost as to what to do and where to turn! My mom decided that I should get a second opinion at another hospital, so I saw Dr.Grooms. This appointment confirmed all that Dr.Briery said.. and more. At this appointment we found out that he had a small thorax, which means that the lungs can not expand once he is born.

The next few weeks were hard. I didn’t want to talk about things with anyone, I just wanted to convince myself that everything was ok. I was in denial.. but I believe I also had a bit of faith that things would be ok.

My mom reminded me of a book she had gotten for me when I had a personal crisis about 2 years before this incident. The book is called Life Without Limits and is by a guy named Nick Vujicic who was born without limbs. This book completely changed my outlook on things and gave me hope! (You should totally check it out!)

We soon found out that my amniocentesis test results came back negative! It was a relief, but sent another wave of confusion because I had no answers! Soon afterward they thought he had achondroplasia, so they tested for that as well.. but it too came back negative!

I don’t really remember the appointments after, but at the end of my pregnancy things had changed so much! They said his thorax was fine and we could see him practice breathing on the ultrasounds, his femur had somehow straightened out, he did have a nose and a normal chin! The only thing that concerned them towards the end was his short long bones!

My last major appointment before I delivered was on December 5th with Dr.Chen, a genetisist who came from California to see me. At the end of my appointment he was sure that my son had hypochondroplasia.

Even though things were ok, I still had to have a c-section because he was breech. The night before I was so scared. I remember waking up my mom and telling her I wasn’t going to the hospital and I was running away. She held me and told me it would be ok, even though I didn’t feel like it.

The next morning as we headed toward the hospital, I was still scared.. all the way up until I had my c-section. They ended up giving me some “happy medicine” so I could chill out! The last thing I remember before being put to sleep was asking for my mom!

When I woke up I remember hearing him cry and my mom holding my hand! Finally the nurse brought him around to me and he was beautiful! My sweet Waylon Cash Acklin was born! It was December 20, 2012 at 8:20 am! He was 7 pounds 12 ounces and 18 and a half inches long! I didn’t get to see him again or hold him until the next day because he was in the NICU due to low oxygen.

Up to now (January 16,2012) Waylon has had his Pediatrician appointment, 2 Shriners appointments (one for x-rays and one for a thyroid test), and blood work done for Jaundice. They believe he has spondyloepiphyseal dysplasia congenita (SED) and this causes short long bones, something with the spine (not sure exactly what), his arms do not fully extend, and bowing of the lower legs and lower arms. We also thought he had a club foot, but they ruled that out.. his foot is just severely turned inward. Thank you for reading and I will post more soon!

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