Just the Start of aBusy Summer

Well summer is here unfortunately so is the heat out here in Arizona! We've already had our first taste of the heat and I have to say I STILL HATE IT!!! But I must say I think I'm handling it better then last year. This year I'm not sneaking in and turning the AC back down to 75 when Scott leaves the house it stays firmly somewhere around 80 and that feels just fine to me. We've started into our busy summer already with our camping trip to Zion National Park. Scott was given the opportunity to have a 4 day weekend and we figured it would be the best time to go camping. I living in Utah all of my life (minus the last two years) have actually not visited the National Parks in southern Utah. People come from all over the world and I never made the drive to the bottom of the state. Scott took me to Bryce when I was pregnant with Landen and we have wanted to go to the other ones but we are always so busy with life. Zion was amazing! We left Bullhead early Friday morning and stayed till Monday. It was only 90-95 degrees the whole time we were there which felt wonderful to us a nice little cool down. The nights were very cold for us some where in the mid 50's BURRR... I know living in Arizona has made me into a wimp. We sent the three days we were there hiking with the kids on our back. We saw some really pretty things. We even hiked a trail that was only 3ish feet wide next to a drop off. I'm terrified of heights but it actually didn't seem too bad. We were warned by several people to turn back since we had the kids on our back but once we got there I figured if we had climbed that steep mountain with 30+ lbs on our back I was going to see the hidden canyon on the end of the trail! The kids loved camping Baby Brayden especially. He thinks rocks and dirt are fun to crawl in plus they make a nice snack when Mommy isn't looking... he got so dirty but they had fun! Scott spent one afternoon hiking Angles Landing it was too dangerous to do with the kids. For those of you who don't know its a hike across a very narrow ledge with sharp drop offs on either side... and yes people have died on that trail... but Scott thought it would be fun. We all had a fun time.

The rest of the week has been busy with therapy and meetings. Yesterday we went to Flagstaff for a hearing evaluation. I've been noticing for about a month now that even with his hearing aids in Landen does not respond to noise anymore. He doesn't turn when you call his name or respond to clapping which has always been his favorite. I've been so worried that his hearing has gotten even worse so I made an appointment a few weeks back for him to be seen. They wanted to do a booth test which has never worked very good for Landen but at his age they wanted to try it. A booth test for those of you who don't know is when they put him in a sound proof room on my lap and face him straight forward then they play sounds on speakers there is on each wall. The hope is that if he hears the sound he will turn towards the direction the sound came from indicating that he heard it. But when we got there they were concerned to find that his ear canals were completely backed up with ear wax just beyond where you can normally see into them without any instruments. They tried the booth test anyway and although Landen did really good at sitting in my lap without wiggling too much he didn't respond to a single sound. The audiologist couldn't clean Landen's canals out with her little "tool" thing cuz they are much smaller then would be expected on a kid of Landen's size so she gave us mineral oil that we are to put one drop into each ear with a cotton ball to keep it from leaking out every night for the next month. No hearing aids until the treatment is done. Which he can't wear anyway cuz one of the molds tore in half when she was trying to remove some hard to get to wax... we can't even make new molds till the wax build up is gone. If in a month when we return the wax is still there he will have to be sedated and have it removed another way (sounds scarey). I'm crossing my fingers that this is the only reason Landen is having issues with his hearing. His hearing has already deteriorated some since birth.

While we were in Flagstaff we got to visit with the Burdick family... they are Ezra's family... the girl who has the same disease as Landen and is the same age... It is always nice to visit with them it is such a relief to be able to talk face to face with someone who knows what you are going through. It was fun to see Ezra she is outgrowing Landen and is looking so healthy and big. She did a little assisted walking back and forth between Joleen and I. She is also learning some words and signs to help her communicate which gives me hope for Landen. Her family is wonderful and so helpful to us. We are very glad to have them near us!

Today we had Landen's IEP (individualized education plan) meeting with the school district he will be allowed services at home and will be having a lot of in home instruction coming this fall. Its almost that time of year for us to start making our annual trips to all of Landen's doctors in Phoenix I will be having a meeting on the 6th with some of the people from CRS (childrens rehabilitate services) to see which ones I can see through them and get referrals for Capstone (CRS and Capstone are insurance Landen is provided through the state) since when he saw them last year he was on a different insurance. It gets very confusing dealing with multiple insurances both private and state. Plus different hospitals and doctors in different towns and to top if off several of his doctors from St Joseph's in Phoenix are now at Phoenix Children's Medical Hospital changing things up again. But in the end its what we have to do there is no way we could afford all of Landen's care on our own. I need to hire someone to deal with all of this paper work!

We have some fun things planned for this summer including (now that the cat is out of the bag) a visit to California next week to see my brother John, a visit from my sister Eva and her kids when they go to the Grand Canyon, our trip to Omaha for Landen's medical conference, and a trip to Oregon to see Scott's family... to top it all off I'm hoping to make another trip to Utah after my brother Isaac's little girl is born. So we may not be seen much of this Arizona summer after all!!!