So here is what's going on...

So Landen started feeling a little low while we were winding up our trip to Utah. I noticed that he was acting uncomfortable and didn't want to move much but I was hoping that he was just worn out after being away from home for two and a half weeks. We flew home on Friday by then I was noticing he was going through fits of pain. It would come and go and he was very lethargic in between. I have been stressed out and worried for him all weekend but I knew he already had his three year wellcheck scheduled for Tuesday (yesterday) so I was holding out. Monday night he seemed to be okay and Tuesday morning he was just fine so I just left for the doctor prepared to discuss it but was no longer really concerned. Due to the alinement of the planets or something everything went wrong at the doctors office. The other doctor who see patients at his office was out leaving our doctor already backed up when as soon as I got into a room (and hour and fifteen minutes after my appointment) the computers went down! We always wait to see Doctor Barton he spends so much time with each patient that we always end up waiting but this was a record. We feel like this doctor is worth the wait because he does such a good job helping coordinate everything for Landen. Anyway back to the waiting room... Landen had one of his pain episodes in the waiting room and he didn't let up. By the time we got him back the whole staff knew that there was obviously something wrong. We had everyone in from nurses to receptionist trying to comfort him. The nurse gave him some Motrin and he was finally able to fall asleep for a few minutes but woke up screaming again. He was curled up in a little ball looking so sad... We hardly got to discuss anything else cuz it was obvious that Landen was in pain. So the doctor ordered some xrays and blood work to see if there was something obvious we could see causing it. We did that yesterday but I just got to talk to the doctor about an hour ago. There is a stomach virus going around that has landed some kids in the hospital already. It causes sever stomach cramps and gas. Landen's xrays are full of gas so he is pretty sure Landen has it. That plus the fact that my family was all sick when we were in Utah makes me believe he is right. He says as long as he doesn't get any worse and he is drinking lots of fluid we can just keep him home and try to make him feel comfortable while his body fights it off. This is a relief in a way a stomach virus is something I can deal with and take care of. So as of this moment though there is still much to do I feel my stress levels slowly descending... not back to normal but not nearly as high. As for the rest of the well check it mostly happened over the phone tonight. Except the height and weight. Landen is still 33inches like he was in January so he hasn't gotten much taller but he has lost weight. When he was seen at the CRS clinic a few months ago he was almost 24lbs but he is now only 22lbs 13oz which doesn't seem like a huge weight loss until you look at it in ratio to his weight. A little worrisome but he has been sick after all. So now its just waiting and caring for Landen till he gets better. Its hard as a mommy to watch him go through it and not be able to do anything about it. So for the next little while if I'm tired, stinky, irritable or just plain grouchy please forgive me I'm a busy mom!

Our Long Trip

What a month its been first with our trip to Omaha and then this last trip we have hardly even been home at all. I'm a lucky mommy to have two boys who travel so well. We started this last trip by leaving on the 12th to meet my parents at a condo they rented at Bison Ranch. Bison Ranch is in Overgaared Az about a 5 hour trip for us. I was so excited to see them! My parents haven't seen them since my brother Mike's wedding in April. So much has happened since then with the boys. Well at lest Brayden who continues to amaze me with his extra energy and his intelligence. Its so strange having Brayden after Landen. 22 months younger then Landen but so growing so much faster. Brayden at 16 months has already passed his brother in every point but size... which won't be long. Sometimes I think Brayden must be so advanced only to realize he is actually pretty normal. Anyway back to the trip... Scott was able to come up with us for the first few days which was nice. It was so fun to see my Dad interact with the boys. Brayden was terrified at first but as soon as my Dad chased him down the hall once they were best friends. I wanted to celebrate Landen's birthday with my parents as well since his birthday was earlier that week so I made a cake for him unfortunately I took a shortcut and bought frosting and thinking it would harden in the freezer like mine does. It didn't... it melted too fast and the cake fell apart before we even got to the condo. We were able to visit both Petrified Forest and Panted Desert (they are across the street from each other) with Scott before he had to leave. It was beautiful and there was much to see. I tried to convince him that he had a fever and couldn't go back to work but he didn't believe me. Scott works so hard to provide for our family and I'm so glad I have him. We spent the rest of the week just hanging out at the condo and going swimming with the boys. Brayden proved many times that he has no fear while swimming. He tried to jump into the pool alone many times. He also figured out how to open the front door and run away.

We left after our week for the trip home it was a fun adventure we stopped at the four corners monument and Mesa Verde. By the time we got to Mesa Verde it was too late to go into any of the ruins or visitor centers but we still got to see a lot of neat things. Next time we will have to get there early and spend a few days. Scott has been telling me he wanted to go to Mesa Verde for awhile but I didn't realize there was so much to see. We were in the car from 9:00 AM Thursday to 6:30 AM the next morning. What an adventure.

The next week I spent with family and friends. We had a fun day at Hogle Zoo with the family celebrating my niece Rebecca's Birthday. Brayden as always was such a ball of energy. He had plenty of people to play with him. He had fun watching the animals in too. It was fun to follow his gaze as his little eyes followed the animals around in their cadges. We even were able to take a picture of almost all of my parents grandchildren... Everyone but Hailey and Alex. Then we had birthday cake and presents. We got to see many of our friends that live in the area.

One of my favorite experiences was being able to attend the Logan Temple with my roommates. Its been so long since I have been able to go. I went once right after Landen was born but haven't really been back since. Its been hard for me with everything that is going on in my life to not only find time but to find motivation to go. Its no secret that the last year of my life has been a struggle and this last month has been extra hard. (the 20th of August is the year mark for Landen's diagnosis) But I have also been so blessed with new family and friends through the GFPD. I have needed to go to the temple for some time now but I have not really felt ready but I knew for sure it was time and this was a great opportunity. I will not share much of what I was able to feel and learn there mostly because I'm not sure it can be put into words but I will share this one sentiment. I am more sure then I have been in my whole life the families are eternal no matter what may happen to us in this life families are forever!

Landen started to feel a little low towards the end of the trip. I don't know if it is due to some bug or exhaustion. I came home last Saturday on a way too early plane and was so wiped out from the trip that I slept all day. Now that we are home Landen has not gotten much better and in fact has grown a little worse. I do not want to get into the whole story right at this moment there is still too much going on but I will blog tomorrow. Just remember Landen in your thoughts and prayers and I will keep you all posted.

Landen's Birthday Present

I couldn't help but post a few pictures of Landen's birthday present. We wanted to get him a ball pit of his very own since he never seems to want to leave the one at therapy but we couldn't find one in town. This was originally my idea for Brayden's birthday but Scott thought it sounded too messy and too big for our house. It wasn't until Scott saw how much Landen loved the little one that they had in the play room in Omaha that he agreed to let me get Landen on for his birthday. Unfortunately even though they had them in almost every store in April for some reason no one has them now so we had to order the balls online. They just came in the mail today. I just got a little swimming pool at the Kmart summer clearance sale to put them it. Its just perfect for Landen and maybe a little cozy when Brayden gets in too but they need to learn to get along eventually anyway.

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. From 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.

2011 GFPD Family & Scientific Conference

I'm sorry this has taken me so long to post about the conference its been almost a week since the conference... I've sat down at this computer several times in the last week to write and found that words didn't come. There are so many thoughts and feelings that I just cannot seem to put into words. It was such a wonderful experience. Maybe this will help this is the opening video from the conference. These are face of the amazing children who like my Little Landen suffer from this disorder.

What an amazing opportunity this was for us! Look at those beautiful faces! They are the reason for this whole experience. I'm having a hard time putting into words what this experience was for us. It was more then just fun, it was more then just informative, it was so much more... Sometimes its hard not to feel alone in this struggle... I have my husband, family and friends who support and love me but still its me here every day dealing with this awful disease. But to share a few days with others who like me have amazing children with this awful disease it was very special. The GFPD is a wonderful organization (please visit http://www.thegfpd.org/). Less then a year old they were able to put this event together with the help of some wonderful people.

We left Arizona at 6:30 Saturday morning to head to the Las Vegas airport. Literally from the moment we walked into the hotel we were surrounded by family... Our PBD family. The Burdick's who we already know from Flagstaff were there as well it was so nice to see them and share this experience with them too. We meet up with many family's that night at dinner it was hugs and joy right from the beginning. I have to admit that I felt lost for a moment to finally see these people whom I've been talking to online for so long. Most of the time I recognized their children's faces but not theirs. I felt like we should all be wearing our profile pictures so that we would be able to identity one another. It was a shared experience for all of us there was no uneasiness that usually accompanies when a large group of unknowns get together for the first time. We were already family brought together by our shared experience and our children.

Sunday morning Scott and I took the kids to the Omaha Zoo it was fun it was a big zoo with lots of animals. We spent the time looking at animals and riding some rides. We let Brayden get out of the stroller and just run! That boy has so much energy!! He was so cute running all over only pausing to watch and laugh when he saw movement in a cadge. He was so funny so interested in everything. We meet up with our friends and saw some more of the zoo. The conference started that afternoon so we headed back to the hotel.

We learned so much at the conference tons of useful information. We were able to ask questions and get answers from people who actually know what they are dealing with. We learned more about this disease, what should be doing and looking for, nutrition, working with hearing and vision loss, research going on and the science behind everything (most of which was WAY over my head). But I have to say my favorite part was watching Little Landen interacting with every one. Both Brayden and Landen made so many friends! They are both so friendly and everyone was so excited to spend time with them. I think that the boys made more friends then we did.

One of the most touching part of the conference was the tribute they did for all the children who have passed on. There were tributes shared candles lit in memory and this beautiful tribute video.

Tears freely flow every time I watch ether of these videos these children are so beautiful and their families are so amazing. My heart is so full of the people we met there and of course the story that we all share. These children are so amazing so similar in so many ways yet so very unique. To all my PBD family... You are so amazing! I love you and wish that we could all be together more often. Thank you for the experience we look forward to next year. There is so many of you that I wish I had spent time with talking, sharing and getting to know you all much better. I feel like there just wasn't enough time. There are so many of you that I didn't get to say more then a few words to but you still mean so much to me. I follow what I can online and love talking and sharing. You inspire me and bless my life. Thank you for showing so much love to my boys and my family! Next year seems so far away for me.