Bake Sale

We are trying to raise money so that we can attend the 2012 GFPD Family Support Conference in Florida. This is a chance for us to meet with other family's as well as attend sessions on medical care and therapy. Its not always easy when you have a child with a disease this rare. I'm the closest person to an expert that sees Landen. Most of Landen's doctors had no idea what this disease was until meeting Landen. Don't get me wrong Landen sees some amazing doctors who are willing to do the research and help Landen but the truth is Landen is their only patient with a PBD. It often falls on me to instruct them on Landen and PBDs, and all though I'm an expert on Landen I'm not much of an expert in PBDs. The GFPD group is my lifeline. When it comes to something new to Landen I always post about it and then go to see his primary care doctor. So you can see why this conference is so very important to our family.

Yesterday was our fist fundraiser. We have been working so hard to get everything together for this bake sale. Scott was terrified the night before it was all going to fall apart. He kept asking me if I was sure that there was going to be enough food. We asked people in our ward and people who work with Landen for baked goods but we also posted and asked for donations from the community. We got an AMAZING response. There were so many cookies and breads and any other baked good you can think of. We decided to have our sale at Sams Club we heard it was a good location. We tried to sign up for Easter weekend but the only date they could give us was the 28th but it turned out that it was the weekend of the River Run in Laughlin. For those of you who don't know that is a big biker weekend here. Sams Club is right across from the Laughlin casinos so it was a well trafficked spot. We thought we would have a lot of bikers (Sams Club is one of the cheapest places to get gas in town) and we had a few but most of our donators were just people from the community visiting Sams Club. We had another stroke of luck that it happened to be an event weekend at Sams with demos and things going on inside. I felt that it was important that Landen be there as much as he could stand so we started out that morning with both Landen and Brayden there. It was soon obvious that it was too much fun for Brayden and we couldn't keep up with him and try and sale baked goods at the same time so we sent him to a friends house to have fun. I do regret not taking a picture of him and Landen together in their GFPD t-shirts. It seems like every thing was in our favor including the weather it had stormed a few days before so the temperature was nice and low and there was a nice breeze perfect Landen weather. He made it through the whole day he had fun walking and making new friends and even took a nap in daddy's arms. There were a few people who just amazed us! They loved meeting Landen and hearing his story. It was such a great event and we had so much support I couldn't believe it! Thank you to all who helped us in any way and for everyone who made a donation. We did so well we were able to raise just over $800.00! Which is AMAZING! Although we are still hoping to do well in our other two fundraisers. Anything that isn't used for our family will be donated to help other families attend. Our next one is a week from today we will be going to California to do a 5K charity walk with some other PBD families. We are still taking donations for that at this link LittleLanden'sTeam. And we have a Buffalo Wild Wings fundraiser coming up on May 21st . Anyone who eats there at ANYTIME during that day can bring in one of our fundraising tickets and we receive %15 of your bill. You can get tickets from me or Scott or any of Landen's therapy friends. I can even email you the tickets to print yourself. Get tickets for you and your friends... or get your friends together for lunch!

Yummy Treats

Our Name Tags

Landen and Karen
(Landen Hearing Instructor)

Landen Having Fun Walking

Landen and Katie
(Landen's Preschool Instructor)

Landen and Daddy!

Landen and Mommy

Just relaxing

Nap Time

Brayden all ready to go

Once again just a huge THANK YOU!! to everyone who is supporting us, to those who baked for us, to those who donated at the bakesale, to those who have donated to our walk and to those who can't donate money but are keeping us in your thoughts and prayers.

Fundraising

Tomorrow is our first official fundraiser...

We will be hosting a bake sale at Sams Club from 9am-3pm

A big thank you to everyone who is helping us tomorrow!

Day at the park a much needed break

So I feel like I'm about to loose it to the stress! I'm knee deep in fundraising stuff combined with the hours of therapy and one doctor appointment after another and trip after trip to Flagstaff... and when I'm not in the doctors office or the car I'm at home just trying to keep it all together. Granted I know that there are those of you reading this who feel like I'm just complaining but I'm so close to burn out. I needed a break I needed to get out of the house! So on this beautiful cloudy day I decided to take the boys to the park. Between naps, meals, therapy appointments and the fact its shopping day I could only squeeze in a short 30 minute trip. But on the way there I just was DONE my head hurt and I was tired! I wasn't going home and I wasn't going to the store I was going to sit in the grass with my boys. I was going to enjoy some time doing nothing more then have fun with my boys. So I stopped and grabbed some lunch and we went to the park. 

We ended up staying for over three hours. The boys got to swing, Brayden got to run, Landen got to walk and all I had to be was mom. It was even nice to be the only people at the park. For once I can get out Landen's walker and watch him play and explore without other kids there reminding me what Landen could have right now. Or them following him around asking why does he have that walker and why doesn't he talk to them. Not that kids aren't wonderful but they aren't always the most tactful. So was nice until Landen decided he didn't like anything but to sit in my arms. Don't get me wrong I love snuggling my Little Landen but I had to focus all of my attention on Landen leaving Brayden to play all by himself. It hit me hard... poor Brayden. It suddenly made me realize why I have such an independent little boy. Brayden is so often left to entertain himself while I'm taking care of Landen. I feel so bad for him I want so badly to be able to chase him around the park and sit and read with him all the time but its just not always that way poor Brayden doesn't get as much mommy as he deserves. I guess that's why Heavenly Father made him so darn freaken CUTE! He's always able to get attention when he needs it. The day got better after a quick 20 minute snuggle nap in my arms Landen was up and ready to go! So glad I decided to stay I really think both my boys enjoyed the day too!

Support the GFPD

DONATE TO LITTLE LANDEN'S TEAM

Scott and I are raising money for the Global Foundation for Peroxisomal Disorders (GFPD) by participating in a 5k walk/run with some of our friends. We have set a personal goal to raise $400.00 and are asking our friends and family to help us and donate. We have been working hard on fund raisin efforts here in Bullhead so that we can attend the GFPDs Family Support Conference but most of our family and friends live too far away to support our other efforts so this is your chance to help us out.

The GFPD is a wonderful organization that offers help and support to families like ours whose beautiful children suffer with this disease. Every little bit can help us reach our goal. Click here to donate LITTLE LANDEN'S TEAM

ENT exam

I'm not exactly sure how to begin this blog. I put if off for one day but I really fell like this new development is something I should share with friends and family. I know how much my son is loved and the support that I have in this world though most of you are far away. I guess I start at beginning. I mentioned a while ago that when Landen was seen by the ENT back in February that she wanted to put tubes in Landen's ears and I doubted if he needed them but I agreed to let her do an exam under anesthesia to remove wax and determine if he was to get tubes only if they also agreed to give him a new ABR (Auditory Brainstem Response, the hearing test that they do for children like Landen who cannot do booth tests). I took him to Flagstaff Monday for all his pre-op appointments. He had to see the CRS doctor to be cleared for surgery and the ENT as well. We stayed overnight because he was going to be the first surgery of the morning and Flagstaff is a long drive for us. The surgery was early early and Landen wasn't happy to be there but eventually they took him from me screaming and crying to go back to the OR. Time seemed to fly by while he was in there and before I knew it they were telling me I could see my baby. I was back in recovery for what seemed like a long time before the ENT came to visit. She came to tell me that for her part everything went well she cleaned out and enormous amount of wax and put tubes in but the audiologist didn't come in with her. She told me that the audiologist needed to look through Landen medical history before coming in to speak with me. Just as I was beginning to think she has forgotten all about me she finally came. She didn't waste any time to before telling me that she was unable to get a response from Landen for any sound at all. She tried every test she could while he was asleep and even as he was waking to get some sound recognition from him but there was nothing. In other words our Little Landen's hearing is completely gone there is nothing left. There isn't even any point in him wearing hearing aids at all because he cannot hear even the amplified sound. I know I was prepared to hear that his hearing loss had become much worse its been over nine months since he last responded to his name. I've been begging for a new ABR for just as long and they have continued to try and do booth test with no results. I was even prepared that there was a good chance based on the fact that each of Landen's ABR's have showed a decline in hearing that someday this would happen. I've even been excited at the fact that he was getting close to having his hearing loss qualify him to start the process of getting him a cochlear implant. But despite all of that I still found the news to be heartbreaking. I couldn't help it... Landen has lost one of his senses completely and his other senses aren't exactly great either. The audiologist had been so shocked herself to see such a rapid loss of hearing that she wanted to review all of his other exams to see if she could find a reason why. But even looking the results of all of his ABRs and the steady rate of decline over the first two years of his life this was not expected this soon. I asked her what the next step for getting him ready for a cochlear implant or CI would be and she tried to talk me into not pursuing it. She told me that she had many deaf kids who learned to sign and live completely happy lives and that it was going to be a hard battle to get the state to approve such an expensive procedure. I respectfully told her that I disagree that it was my decision and Landen already has so many obstacles to overcome and I wanted him to have his hearing back even if it was going to mean a ton of work for me. So our next step is getting the audiologist to get paper work together to submit to his case worker who will send it to Phoenix and Landen will receive a medical review to determine if he is eligible for a CI. All we can do now is prepare ourselves while hoping and praying that the procedure is approved without much of a fight. But I'm already sure that no matter what it takes I will fight until this happens for Landen.

Easter

Easter was a small even for our family. We went to Grandpa and Grandma Sinex's house for dinner. I made each of the boys a small bag of Easter goodies. Brayden did a small egg hunt by himself but he really enjoyed it.

Surprise Utah Visit

We had this fun trip to Utah planed for weeks but we had to keep it all quite because it was a surprise! Both my parents were turning 50 just two days apart and we decided to celebrate with a big party. We headed out early Thursday morning and headed to my sisters house. It was a long day after I swung up to Paradise to drop my mother-in-law to spend some time with her mom. Friday we spent preparing for the fun weekend ahead. My parents had no idea that I was in Utah my sister and I had planned a fun birthday weekend for my parents. Friday night we surprised them by having Brayden answer the door when they came over for a bar-b-q before going to see "Hunger Games". They were so surprised! It was great.

Saturday my sisters boys EJ and Jacob had a birthday party! We all went out to a fun center with big bouncy houses, roller skating, laser tag and games! They had a fun star-wars theme party even Darth Vader made an appearance. Brayden thought it was the best place ever! He ran and ran and ran... exhausting all of us, and just when we though he would run out of energy someone (GRANDPA!!) would give him some more sugar and he would be off again. Landen enjoyed all the space provided for him to use his walker. It was really fun to watch him go he was so amazing at it. We meet a little boy who was 18 months and had just received a walker of his own. He was just learning to use it but his mom was so excited to see the independence my Little Landen had with his. It gave her hope that someday soon her son would be using his as well. In all it was an exhausting but fun day!

Sunday we had my parents surprise party. They had no idea! We invited all the family it was a fun way to celebrate these two important people. Us children surprised them with a new computer from all of us we had it set up inside a box and my Brother John and his wife Heather were on Skype all the way from Germany. It was so fun Heather even decorated their apartment to make it more festive.

Monday we said goodbye to my sweet cousin Gayleen who passed away earlier that week after a long battle with cancer. It was sad to have to say goodbye but I was grateful to be able to attend her services. Being so far away from home I'm not always able to be there for family when hard times come.

After that I was able to spend a week with at my parents house and do some visiting. After picking my mother-in-law up to head home we had a fun adventure. Paradise is a small town and I decided to follow my GPS's directions to Salt Lake. It told me to turn off on a small dirt road that obviously hasn't been travailed much. Growing up in small towns in Utah I thought it would be fun to keep going. The road looked good at the beginning but the farther we went the more we realized that this road was no longer used. The ruts and mud puddles got bigger and bigger until we came to a patch of road with ruts at least two feet deep. I wish I had gotten out my camera and taken a picture. My little brother Tim tried to get me to continue the GPS said I was less then a mile from the highway. He even offered to lay down in the rut and let me drive over it. (it was deep enough that he would have been fine) But I didn't want to risk getting stuck with my kids in the car. So I turned around and went back. It was fun even though it added time to our long drive home.

We eventually made it home around 1AM that night. But it was fun :D