Landen's Update: Happy Birthday to My Sweet Little Landen

Monday, August 8, 2011

Happy Birthday to My Sweet Little Landen

Its Landen's birthday today! This has been a day full of emotion for me. Not only is my little guy three years old today which is enough to make any mothers heart fill with emotion but this is Landen's first birthday since his diagnosis... since we learned that he only has a small number of birthdays. Not that that is what I've been dwelling on but its hard not to think of especially when I think about the joy we had celebrating last year only to find out less then two weeks later that Landen had this awful disease. I've been crying all day tears of joy, tears of sorrow and tears of frustration.

My sweet little boy is three! And that is what is important today! I woke up and started singing to him. Made him his favorite food PANCAKES for breakfast. Snuggled him close and sang happy birthday songs to him till he fell asleep at nap time. Played and snuggled some more.. just tried to be close to

him. We celebrated yesterday with the cake and presents it seemed like a better day since this is also the first day of school around here and Grandpa Sinex being a school teacher was I'm sure busy today. I put extra care into his cake making it special just like him. I wish so bad I could throw a HUGE party with all of our friends and family. Lots of cake, food, fun and friends. Let everyone gather around and celebrate the fact that we have him here with us which is special! But since we live so far away from most of our family we have to settle for a small event. It really is frustrating I feel like we should all be celebrating with him we have this little gift with us for we don't know how long. He is such a blessing for all of us here on earth and I want to share him with everyone that I love. I want them to love him just as much. To hold him and get to know him and make the memories that will remain even after the Lord takes him from earth. I'm just hoping that you all are keeping him close to your hearts and thoughts today even though you are not here with us. We will be having more cake and presents next weekend when we meet my parents at Bison Ranch for a little vacation. He got a fun

little ball that lights up wiggles and makes noise he loves it very much! Got some much needed clothes and mommy and daddy will be giving him his very own ball pit for his bedroom next weekend.

This last year has been a roller coaster but I have seen so much growth in him. Although the numbers would say that he has only gained 2.5lbs and a couple of inches and he wore the same birthday boy shirt I made for his first birthday. But I see growth... you can see it in his face and features he doesn't look as "baby" as he did before. He is starting to communicate more not with words or sign but in other ways. He is playing more and learning to do new things getting so much personality. My little boy gives me so much to be proud of!! He is so friendly he loves to laugh and is learning to express feelings. He has picked up several ways to say "I love you" or "I'm happy" just recently he has started giving the biggest hugs and licks! I love it when he grabs my face and puts our foreheads together and laughs that means just as much as if he were to say "mommy I love you". Still a snuggle bug. Fr

om the moment he was born his favorite place to rest is in Daddy and Mommy's arms followed close by anyone else who will take the time to snuggle. I love watching him give love and snuggles to others. Its like he is putting a little bit of himself in their hearts. He has the best laugh and the brightest smile. Heavenly voices cannot compare to the sound of my Landen's laugh. I love to make him laugh I tickle his face with my hair or blow raspberries on his tummy. He has ticklish feet which will make him smile but for a real laugh kiss his bare feet! I love the fact that even if he is in a bad mood a small kiss on the cheek from Mommy will bring a smile to his face. His eyes are so expressive! Happy, sad, grumpy, tired, silly... they are all there in his eyes. I could go on and on forever about my Little Landen... he is my world! I love him and Brayden so much! Thank you Heavenly Father for intrusting me with such sweet angels.

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About Landen

Landen is SIX years old! He loves loves loves his daddy (and his mommy too). After a long struggle he has learned to walk with the help of a walker. Landen was wearing hearing aids since he was 2.5 months old and did very well with them. But eventually he lost the last of his limited hearing. In March 2013 he received a cochlear implant that helps him to hear again and he loves it! This disease has kept him smaller then most babies his age but he has the personality and love to make up for it! His little brother passed him up long ago.

He loves to close his eyes and feel things I don't know if its because of the issues with his eyesight or a personality thing. He is not talking at all yet. Even though he doesn't have words or signs yet he knows what he wants and will tell you in other ways. I guess because I am his mommy and spend every minute of his life with him I understand him. I get to work as his interpreter with others. He is strong willed when he is trying to learn something and doesn't give up on something he has already put his mind to. Landen is a loving child who loves to cuddle. He will sit on your lap for hours is you are willing to play patty cake with him! I often come in late at night or early in the morning to see him lying next to his daddy stroking his arm. My favorite is when he sneaks up behind me to play with my hair! I've never met such a snuggle bug! We Love our Little Landen so much! He may not be destined for a long life but it will be a happy life!

About PBDs

Peroxisomal Biogenesis Disorders are complicated genetic conditions with many big words I will try my best to explain some basic concepts and include links to some websites to help you understand it. I'm explaining it the way I understand it please forgive me if I make a mistake this is a learning process with a disease that is rare and therefor hard to find information on. I will correct things if I come across new information.

Peroxisomal Biogenisis Disorders include three disorders Infantile Refsum Disease (IRD), Neonatal Adrenoleukodystrophy (NALD) and Zellweger Syndrome (ZS). The distinction between the disorders is based on severity Zellweger Syndrome being the most severe and Infantile Refsum Disease the least severe. But it is often impossible to put a child solely in one of these diseases. Landen is thought to be on the IRD end of the scale but he has also had blood work suggesting he may be more severe. For that reason we just like to say he has a PBD.

Peroxisomal Biogenesis Disorders affect every part of Landen's body. PBDs are caused when the part of the cell that breaks down substances the peroxisome does not work properly. Peroxisomes break down substances like long chain fatty acids. In Landen's case his cells are unable to break down these substances. These substances build up in the blood stream and can be deposited in various tissues and nerves causing damage.
Symptoms of this disease include hearing loss, retinitis pigmentosa, nystagmus, mental retardation, loss of reflexes, muscle weakness, poor balance and retarded growth. These symptoms vary from patient to patient. Some babies learn to walk, talk and read while others are severely cognitively delayed and confined to wheelchairs. Our Landen has shown signs of severe cognitive delay and muscle weakness but he is determined to move and learn
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PBD is genetic and is inherit recessive meaning both Scott and I are carriers of a rare mutated gene. Landen has received one from each of us and is now is affected by PBD. Brayden or youngest shows no signs of PBD but still has a 50% chance of being a carrier a 25% chance of having two normal genes and a 25% chance of having PBD or both genes are mutated like Landen. Although Brayden's development and growth suggest that he is unaffected. Any future children we may or may not choose to have will also have a 25% chance of inheriting this disorder.

PBDs have no cure and is eventually fatal but we are doing our part to control it and treat the symptoms. First we try to control it through diet. One of the most dangerous and common substances that build up is phytanic acid. It is a by-product of photosynthesis and is only made in the green leafy part of plants. So Landen doesn't eat any animal product from animals that eat leafy greens AKA no beef, lamb, fish or dairy products. Symptoms are addressed and treated as they appear. He has a cochlear implant. His vision problems are uncorrectable with glasses but we are closely monitoring for change. Physical and Occupational therapies are key in helping him to grow and learn. Landen has shown great improvement since starting these services.

Although this disease will eventually take our son we will have some warning before it is time for him to go. His motor and cognitive functions will regress as more nerve damage occurs.
We love our baby boy and refuse to treat him like all is lost. We will teach him all that he wants to learn, give him all we can and love him forever! We appreciate the love and support of our family and friends as we start this journey together.

Landen's Update

My Little Landen

Monday, August 8, 2011

Happy Birthday to My Sweet Little Landen

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