Landen's Update: 2012

Monday, December 10, 2012

Change, Hard Work and Blessings

So here it is the blog that tells you where I disappeared to... in more then one way for those in Bullhead we were there one day and gone the next. Then I was off facebook and not returning many calls... I didn't just run off I've been very busy.

As I said in the last post we moved. It was a last minute thing and it was so quick we didn't get to say goodbye to the friends we left behind. We got here and were basically homeless because the place we were moving needed a lot of work before we could move in. Fortunately my sisters family took us in. We spent the first week while Scott was still in Bullhead making preparations and getting ready for Thanksgiving. We had an AMAZING thanksgiving day with so much food and even more family. But when it was all over it was time to get to work...

Grand kids enjoying the meal

We had to get my parents basement ready for us to move into. We were trying to turn it into a little apartment for our family but it needed so much work. It needed to be cleaned and repairs made. New paint and carpet came next. It was a ton of work at first I was a little overwhelmed by it all. Fortunately we didn't have to do it alone. My dad and brothers were there everyday and my sister came down to help. It took us another week and half to get things cleaned, painted and carpeted.

Andrew painting mine and Scott's room

Ian Painting

Eva working in the boy's room


Lizzy doing what she does best... supervising? LOL just teasing :D

After it was all done the difference was incredible! We are just finishing moving everything in but have a lot to be grateful for. It hasn't been easy on the kids they have been in three different homes in a matter of weeks. I think they have finally moved past the "we are ready to go home" stage and are starting to accept that this as our new home.

We have received so much assistance and help we are so thankful for. Family and friends have helped clean and paint. We have had wonderful babysitters. Thanks to donations from my sister and brother in Germany and my uncles family along with some other friends my boys have a completely new warm wardrobe. Including boots, hats, coats, gloves and a yo gabba gabba shirt my Brayden would live and die in if I let him wear it all the time. Its going to take some time to adjust to the cold but we are happy to be here! THANK YOU TO EVERYONE FOR YOUR SUPPORT AND LOVE!

This is the sewing room/exercise room

Family room

our room (still unpacking this one)

Boys Room

This is what my dad calls the ball crawl eventually there will be a ball pit and lights in this closet

Tuesday, November 13, 2012

News... the good and the bad...

So we have some news to share with everyone and depending on how you look at it its either good or bad... We are moving back to Utah this weekend... Why and why so quick you might ask? Its a long story and if you'll bear with me I'll tell the story.

Many things have contributed to this decision. The last of which is Scott giving his two week notice at work. The bigger factors include fiances, job/school opportunity, Landen's CI and the constant walls we have run up against with Landen's healthcare. So we both feel like it would be best for Landen. We will be living with my parents as we look for work and apply for more school. They have been kind enough to let us help fix up their basement and we will have a nice place with plenty of room for all of us. My whole family is pitching in helping us with the move. We are so thankful for the support they give us! We have been given so much support all around both here as we are get ready to leave and in Utah as people prepare to make room and help us out.

Our journey to Landen's CI (cochlear implant) has been a hard one with many set backs. We have been pressing and working jumping every hoop that has been put in front of us. We were so close just needing one more appointment and approval before submitting to the insurance company but when paper work was sent asking for approval for him to see the audiologist for the last CI evaluation for some reason the insurance company transferred his case to the Phoenix clinic which puts us exactly back on square one. We have a six month process in front of us so we figure we can start the long process again here or we can do it there.

This has been a tough decision for us we have lost much sleep and constantly prayed for direction. In the end we feel good about the decision we have made. And although it has put a temporary stress on me to get things packed and ready by Saturday we believe it will work out for us in the end. Thank you to those we have had praying for us and given us counsel.

I'd just like to say to those we leave behind I'm trying to get back in the habit of bloging here about our family so keep in touch!

We really do love and appreciate all of our family and friends!

Halloween!

Halloween is so much fun it took me awhile to decided what costumes to make for the boys but I think they turned out really cute! I even made Scott and I's costumes.

We took Grandma to Williams to ride the Pumpkin Train.We got to take a train out to pick up a pumpkin and then decorate it. There was also a fun straw maze and haunted cart!

Halloween Trunk-or-Treat is always a lot of fun for the kids and mommy....

Grandpa and Grandma Rolfe Visit Oct 2012

I've been planing and planing for Scott's 30th birthday to send him skydiving... I decided to ask my dad to go with him so he wouldn't chicken out. So my parents came down here to visit. We spent a two days in Phoenix to do the skydiving and then they stayed with us and visited. Going to the Grand Canyon and playing with the kids. Here is vedio of the jumps and pictures of the vacation!

Scott's Jump

Dad's Jump

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