I am loving my life

Today was a pretty crazy day. I was awaken again by a screaming baby at three in the morning. With frustration and exhaustion this morning I was ready to scream and yell at my son for waking me up again early in the morning. I am pretty grumpy when I wake up without enough sleep. Well finally after three hours Ryker fell asleep but unfortunately he couldn't long because we had an appointment bright and early. He was so tired at therapy we didn't get anything done. He cried and cried for an hour. More frustration hit me. Luckily, we had another appointment I. Salt lake but we had to wait for about an hour and half for it. We decided to go to temple square and hang there until the appointment. We walked around the visitors center and I didn't notice until today how many looks Ryker gets from all sorts of people. We even have people from random places come and talk to us to find out our story. Spotlighting words from strangers and people actually seeing Ryker for who he is amazes me. I was looking at the statue of Christ and I felt Ryker is a choice spirit. One person even said he felt that Ryker had a purpose here with a sweet spirit. I was told he was special by someone I didn't even know. Wow! If a stranger can see that, then I need to appreciate it more. Ryker has a special spirit and is already touching hearts!

staying positive is hard work

I was awaken by a very sad baby this morning at 3:00. He was screaming pretty loud for Ryker's and I couldn't get him to stop. Not sure what startled, but he was a very unhappy baby. Which made mamma bear come out because I was exhausted! I didn't have patience for it last night. Well driving to Ryker's appointment to day, I was listening Ti the talk radio and they had a topic of those people who have been given a rough trial, but are still positive with there life. You know I believe myself to be positive, but with Ryker sometimes well most of the time I am not. Listening To all the amazing stories, it made me realize I can do so much more. So today folks is the day that my negative attitude changes. I am going to love life and live it up! No matter how many more Ryker's challenges we have. It pretty crazy because I am so use to things going horrible with Ryker's health that is terrifies me when things go right. Kinda silly I know. Anyway well my words of wisdom for today stay positive, have courage, and love life.

Ryker is impressing his mama!

This week has been a great learning week for me. Ryker has been sick and every time he is sick I freak out. You see the old Ryker always ended up in the hospital. And there we would find more problems and worry about other things doctors would find. Hospital stress is something I hate dealing with and it has been our norm for the last year. To be honest, I didn't believe we would ever see anything different. But my little Ryker man once again proved me wrong. He has been sick, but holding his oxygen and playing like a normal baby. We went to the doctor and that is exactly what I was told. His symptoms are just like a normal kid. Something I don't need to worry about. It was a huge relief to hear that. I have been stressing all week.  Heavenly Father is showing me that Ryker is changing and miracles do happen. I just need to remember all the promises that have been placed upon my son.

We had an ultrasound for his little head. Found out he has the same amount of fluid as he did before when he was in the nicu so everything is normal for Ryker. Thank goodness!  One more miracle going for little man. We also saw pulmonary. It was a new doctor and I really liked him a whole lot! I have heard so many good things about him so I am glad we get him now. The funny thing is that he has heard lots of stories of my little man and his strong headed mother. I guess Ryker is the talk of the hospital with our little show down back in June. With my fighting for him and the doctors finally listening. Everyone has heard about us. Pretty funny. The doctor was like "It's nice to put a face to the stories I have heard about you two." I felt a little honored that people are talking about Ryker and I. I am a proud mama who knows what's best for her little boy. Well he basically said we are on the right track of getting off oxygen. He didn't want to change anything because Ryker has been sick. But we do have another sleep study in four weeks.

This week in therapy we got to try some solids. Ryker has some big goals this week. He is suppose to take everything by mouth and we are not allowed to use the pump anymore. Makes me nervous because it's the last step of getting the tube out. I am scared to see what the GI doc is going to say about the gtube. He is doing fantastic with eating and if you look at his grow chart you will be able to tell he loves to eat. He is chunky, has grown two inches, and two pounds in the last two months. Breathing better does wonders for everything else. He is finally in 6-9 month clothes! And still growing out of those. I am sure proud of my little miracle fighter,

Adrianne is our Favorite therapist!!! Ryker has a special connection with her. She has gotten him to do wonderful thing over the past seven months! We love her!

Ryker is sick once again!

I often ask myself why keep going? What's the point? Why haven't you lost faith? Ryker's isn't off of oyxgen. He still needs the bipap. He is always going to have one complication after another. He will never be normal. Why keep going? Why? To be honest I don't know why I keep going. Deep down I know there isn't anything else to do other then to have faith and pray Ryker's life will be better then what it has been. I do know for a fact that I can't do this the rest of my life. I have put a brave face on for my son for the past 13 months. He needs his mommy, but I don't know how much long I can take it. Watching him struggle to breath over a simple cold that me and you get all the time is really unsettling. I have been struggling with the idea of taking him back to the hospital. I know what they would do for him there. We have all medical necessities they have here at home so I know it won't do much other then give me a break from being doctor, nurse, respiratory therapist, and all the other hats I wear throughout the day. I wish people would understand how a simple cold virus could be seriously hospitalizing for Ryker. Casual visits with a sore throat, cough, or any sick symptom can be catastrophic for my son. I tell people over an over no visits with symptoms, but people think well it's allergies, or I am almost over it. Well I only have a small cough. I am not as sick as I was. People! Ryker's immune system sucks! It's frustrating. I know I can't keep him in a bubble. I know I can't stay in a bubble, but I can't do sick Ryker anymore. It's emotional, physically, and mentally draining. Needless to say I feel like I am lossing faith, but deep down I know that's all I have. Ryker's needs me and I won't give up as much as I want to. It's been a rough day. Prayers for little man to get better.

Adventure week!

This week has been an adventure. Ryker and I have gone places! not doctors or therapist, but actual places to see actual people for fun! Crazy huh. I didn't think that would even come. We took a train ride (the frontrunner) for the first time on Friday to go hang out with my family at Jeromy's place. It brought back memories of riding the train all the time as a missionary. It was great! I even met a really nice lady. We talked for a good 25 minutes while waiting to get to our destination. Once getting to Jeromy's house we played video games and talked about life. Jeromy unfortunately is getting a divorce. I am sad that he has to go through this, but I am excited that he is going to be a father. I sure hope Kathy will let us all see the baby often. I am still the aunt and I sure want to get to know this little one on the way. Sadie, Josh, and Mom came up for the evening. It was really nice to hang out with all of them.

On Saturday, Ryker and I took a little vacation up to Idaho. Parker wanted to stay behind. I don't think he feels like it's the same Idaho. He just wants to remember the old one like we loved it. Well driving to Idaho and entering Idaho Falls he was right. It didn't feel like home anymore. It made me sad because every time we drove back to Idaho Falls from Utah I always had the feeling of home finally. And it's not like that anymore. I love Idaho Falls. I truly miss it! It has a special meaning in my heart. We had to overcome so much in Idaho and we grow up a lot together. We had ups and downs there, but I will always be thankful for the time we had there. We needed to be there and we learned from that experience.

None the less, we had a good time. I got to say good bye to everyone. Well mostly everyone. Our old ward split and we are in a new building so I didn't see everyone. There was a homecoming for one of the young men while I was there. I even took a little trip to Ammon Elementary. I was really nice to say good bye to Ammon once again and see all the kids and teachers. It was also nice to introduce Ryker to everyone. A part of me misses that school, but also I am so glad I am not there anymore. It is a good change. I joked  before I left Ammon that it would be nice to only be in charge of one kid, well Ryker is like more then one. More like 30 kids with all his medical problems. Ha it was a good time.

Idaho Falls has changed so much. There is a Hobby Lobby, a Cabelas, and a Reed's Dairy all by my old school. It's crazy!. The unfortunate thing is that it's growing. More and more people are starting to move there. Sad! I want my little Idaho Falls back. Well in my memories and heart it will always be my little Idaho Falls.

We even ventured to my Mom's house this last week. We hung out with Grandma and Sadie. It was nice to have some girl time. Now that Tami isn't around anymore I need someone to hang out with. Sadie is the perfect one! I just love her to death. She is so sweet and sincere about everyone and everything. I need to do more girl nights with her and get to know her better. I joke with her that she is a better daughter to my mom. She is always there for her and willing to help her out. It is nice to know someone is there to take care of her. Sadie is such a great example to me! love her to death!

While I was at my mom's house I got my hair cut. I got about 8 inches cut off. It's really different now. I like it, but I can't do all my cute braids like I use to. I really  needed the hair cut. I haven't had it cut in like a year so I had lots of split ends. Soon enough it will grow back to the long length, until then I will have to come up with new hair styles.

School started this week. I don't know if I am ready for it to start again. Homework is going to kill me this semester. It's a different type of class then I am use to. It's going to be a hard class I believe. Hopefully I can get through it with a good grade. The bonus is that Ryker isn't in the hospital this time. Knock on wood. I hope we don't have ti spend time in the hospital for a while. Prayers always in that area. But he had truly been blessed.

Ryker has had lots of appointments since the last time I wrote. He caught a  cold virus this last week. Now I am sick so it hasn't been fun. I guess it's time to tell the kids they can't come over anymore. School in session and virus. Not a good mix for sick kids and Ryker. Sometime I think people just don't understand how serious it is when Ryker gets sick. If we didn't have the bipap and oxygen we would be in the hospital more often when he gets sick. So don't be surprised if there is a sign that says no little or sick humans allowed. We just want Ryker to get over all this bad luck!

We also found out that Ryker has some fluid on his brain so we are doing another Ultrasound next week. We will also be talking to a neuro surgeon. Hopefully not another surgery. Ryker also got his one year old shots and a flu shot. I believe him being sick already those shots made it worse. Hopefully we can get over this in the next couple of days.

We have had some financial situations this last week. Two of Ryker's hospital stays the insurance doesn't want to approve them. One of them was from the Nicu back in November of last year when the Doctor messed up his esophagus. So if the insurance doesn't pay for those stays we might have to take matters into our own hands. Praying things will work out!  We also are having trouble with our car. Problems that are going on with it are costly. We have a warranty that the dealership doesn't want to honor it because it was previously wrecked. I am hoping Parker can fix these problems. He always tells me He can fix anything. I love my husband! He always tells me that the big problems are his problems and not to worry about them. He is always right. Some how he always makes them work out. He is my Hero!!!

This last FHE we played a dance game as a family. We haven't had that much fun in a long time!  I surely do love my family. It's nice to have our own space and own problems. Well enough of this crazy entry. I will inspire you all again next week!!!

This is how long my hair was before I cut it!!!! WOW!!!!

Train Ride to Salt Lake. Ryker loved the view!!!!

Hey look our Idaho House has grass now!!! I wish I would have done that!

Hanging with our Idaho Buddies was a lot of fun! Ryker really enjoyed the adventure!

Ryker's first date! He sure did love meeting new babies this trip!

Idaho Falls Luxury!! I sure do miss this yummy chocolate milk and their amazing ice cream!