Landen's Update: Always playing catch up (Summer 2012)

Tuesday, November 13, 2012

Always playing catch up (Summer 2012)

Wow am I really that far behind? Every month I think I'll just do a quick catch up and then I can start posting regularly again but as each month flies quickly by I get farther behind and the task of catching up on my blog seems to be more and more work. I'm so far behind but I guess if I put it off any longer I will never actually catch up will I? So here it is the last six months in one blog.

Summer was fun we did a lot and we kept very busy... We has so much going on considering we were down to almost no therapy. We took the summer off of most everything but PT and OT once a week which we frequently missed. Here are some photo collages of our summer fun!

Having fun in the sun!

Scott and I hiked the Grand Canyon with my brother Andrew and his friend. It was so much work but so worth it!

Brayden spending time with mommy at the free summer movies...

Puppet making was fun..

Its way too hot to be outside much during the summer but we had lots of fun inside at home too!

We went camping with my family.

While we were camping Scotty was hiking again with my brother.

As always August is a big month for us with our GFPD Conference and Landen's Birthday. Both are amzing things for our family!

First the GFPD Family Support Conference! I could devote so much time telling you all how amazing this is for us. It was AMAZING and it means so much to us to be able to go. I can't even begin without first thanking everyone for your support and help getting us there! We had support from family and friends and the community here in Bullhead.

The conference gives us opportunities to learn more about Landen's disease and how we can help him. It also gives us time to meet with other families and do some healing. It was such an amazing amazing experience for us!

The conference was in Floriday and we had the opportunity to participate in a compassionate partners program getting tickets to spend a few days in Disney World! How amazing was that? We would never be able to take our family there with the cost of everything but this wonderful program gave us a wonderful family experience.

Little Landen's Birthday! This day always has such meaning for us. We had no idea how many birthdays Landen will have so each one is so special to us. Landen is an incredible boy who has made so many great accomplishments in the last six months. He is feeding himself a larger verity of foods and textures. He is walking for longer periods of time with his walker. He is showing that he has such a strong independent spirit. He knows what he wants and he tries so hard to do things for himself... He loves to walk but as soon as you try to direct him or even give his walker a nudge in a different direction he will just sit down right there no matter if its in the house or the parking lot. He wants to go his own way and have his own independence. I love my son so much he is the most incredible person I have ever known. His smile and laugh is contagious... I love making him laugh and watching him squirm when I tickle him. I love when he grabs my sunglasses off my face and laughs as he throws them so I have to chase them (I have broken several pairs that way). I love that he is the center of our house we do as much as we can just to make him happy. Even our Brayden is always trying to make his big brother happy! I LOVE LANDEN!

And that my friends was our summer :D

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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
.
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

Tuesday, November 13, 2012

Always playing catch up (Summer 2012)

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