Miracles and more miracles

The past 16 months has proven that God provides miracles for those that have faith and are diligent in that faith. Ryker is my proof of miracles really happening. We have been told by many that Ryker shouldn't be here with us and he for sure shouldn't be doing as well as he has been doing. From now on, no matter how often or how much I doubt, I will always remember my miracle baby. God loves us and he is really here wanting to bless us.

As a missionary I was sitting on a bus reading the book of Mormon in English. There was a man that came up to me looking like he was homeless, dirty, and drug. He asked me about the book. He said he knew that that book would change his life and he needed one. The only book I had in english was mine, the one I was reading. So with faith I gave it to him. Three months later, the elders brought him to church. I didn't recognize him. He was dressed in a nice suit and all cleaned up. He came up to me and said your book changed my life. The greatest thing about this story is he name was Blessing. Through that faith brings blessings!. All of this year, I have been thinking about this story. It gave me hope for our situation. Now our situation is finally the blessing! Trials makes you stronger and if you fight through them, you will see miracles in your life.

Back in July at the temple, I had an impression that the surgery Ryker was going to have was going to answer all the questions. He was going to get off oxygen and his health would improve. When it didn't happen right away or right after surgery I was a little disappointed. I was starting to doubt my inspiration, but this week the inspiration that I had came true. Ryker is off of oxygen. He is doing all the things that I hoped he would with his health. We have seen the heart doc, the lung doc, and ENT. ENT didn't find a hole in his soft palate, so no surgery for that. All of them have said they are amazed with his improvement. We don't have to see any more doctors for a year. It puts things into perspective! We could potentially move out of Utah, not now, but someday. That's bonus. Ryker has changed my life!

Well this week we also found out that Ryker will be needing more brace supports. So not only does he use his hand braces and neck brace, he will also need foot and ankle ones. We were told he will possibly need to have surgery on his legs and feet. Probably not for a while, but surgery will be in his future. All in all, Ryker is doing so well. He looks so different without oxygen. He is getting new glasses and without his oxygen he looks like a little toddler. So cute!  Today he enjoyed Aladdin the movie. He watched the whole thing without fuss. Guess he liked the colors or something. It was pretty cute actually. Life is going how it's suppose to. I am loving it. I can't wait for the holidays and I am super excited to decorate for Christmas. So folks don't be judging if you see my house decked out for Christmas this week.

The PJs Adventure moving forward

It's been awhile since I wrote. It's not because I have been busy or things have been stressful. For once in this last year I have been able to be lazy. ha ha. Things have been great. We are finally feeling comfortable to venture out of our house with little man. It's actually been nice being about to trust his health enough to have a little family fun outside our house. For Halloween, we went down to Clyde and Sheila's house for the weekend. It was a little vacation because Grandma Sheila was willing and great in taking care of Ryks. I could actually enjoy having fun without worrying about him. It's been a long time coming. It's November and I often think about last year's events. This was the month Ryks got to come home. It was a great feeling being able to take him home, but we had so many other crazy things happen between then and now. I am just grateful Heavenly Father prepared me and gave me the strength to get through this last year. It's made me a better person and has given me more hope and faith in our creator. My patience has been tested and my love for the savior has grown. All in one year I have learned so much about my Heavenly Father and my savior. They have been my rock. They have been the ones I have leaned on. I am truly grateful for the miracles and blessings our little family has seen this past year. It's going to be a huge foundation of my testimony for the rest of my life.

Well Halloween was wonderful. We got to dress up and go trick or treating for the first time. Ryker wasn't sure what to do. He did like picking out the shiny wrappers at each house. We all dressed up as a monster from Monsters University. It was so much fun seeing Ryker spend sometime with his Grandparents. He hasn't really been about to do that with us staying home all the time. An acquaintance of ours brought  home her little 26 week baby after spending 4 months in the NICU so we got to see them. It was thinking, WOW! I can't believe that was us last year. It was crazy! He was so cute and so little! The oxygen tube was covering his entire face just like Ryker. I am so glad we are not at that point anymore.

Ryker's health has improved once again. He had a sleep study. The respiratory therapist that we had from the sleep study in June was the same one. I was made at her back in June because she was the one that sent us to the hospital. She told Parker that she just felt like something was wrong and she needed to send him. Well I apologized to her. She was following the spirit. Well the study went really well. We found out that he can go down on his oxygen requirements at night and during the day. Right now he has gone down from 3 liters of oxygen at night to 3/4 liters. During the day is tons better as well. He has gone from 1/2 to 1/32 which is the last notch on the oxygen tank. Incredible. I didn't think we would ever get to this point. I am so glad I followed my mom instinct and didn't allow the doctors to trach my little man. The surgery for his hernia has really proven to be the answer to our prayers. I am feeling nervous that at our next appointment the doctors will take away the oxygen completely during the day. Exciting, but scary as well. We will really need to be careful that he won't get sick. We will for sure have to go to the hospital. Praying for a good winter cold and flu season. No sickness at our house.

Physical therapy and occupational therapy have been very helpful the last couple of weeks. We found out that Ryker has a processing delay in his brain. Which is normal for his syndrome. It's a little crazy because I keep thinking Ryker is a just a normal baby that was born premature, but then news like this reminds me that he has a syndrome. But we can do this. We also found out that he has scoliosis in his back. Which is a curve on his spine. We will be doing stretching and positioning therapy to help it, but when he gets older he will most likely have to have a rod put in his back. We will see. I am not to worried about it right now. Ryker doesn't have to get a helmet. Thank goodness for that! Yes his head is a little misshapen, but it has improved. Plus our insurance won't pay for it anyway. So one less thing we have to worry about. Ryks has another swallow study and passed with nectar thick liquids. We were told he has a small hole in his soft palate making the liquid go straight up his nose. Most likely we will be doing surgery for that in January. I will be taking him to the ENT next week for a consultation about this problem. I will keep you updated. All these new developments are small compared to what we have gone through this past year, so piece of cake right!

Things are going the way they are suppose to. I am still not sure what our purpose is here in Clearfield. I am still trying to figure out what Heavenly Father wants of us here in Utah, but finally we have breathing room. And less stress in our little family.

The Currant Bush of my Life

In Sunday school, we were taught about a talk given by Elder Hugh Brown. It was a story of a gardener and a currant bush. Here is the video from mormon messages.

This talk hit me hard! All the complaining, misshapen, trials, disappointments, tears, frustrations, that currant bush story has been my life for the last year!!! I have often said, "how could you do this me?' Everything that could have gone wrong has gone wrong, but Heavnly Father is the gardener. He knows what he wants my life to be. It is better then what I want my life to be. All the trials given to us are for a reason. One day I will find out all the reasons behind to all the crazy life stress from this last year.

I have been so focused on how I hate Utah. I have felt like suffocating from everything that has happened here in Utah. I have had choice words with my Heavenly Father. He knows my feelings, fears, and frustration with this place.  He is the one who is going to push me to become better. I have these trials to improve, become better, and make me more like Christ. I am grateful for the trials even though they are hard. I will thank God every day for them. Here is another video that hit me as I pondered on my trials and what I have learned from them. I know I have become stronger. I have more patience, more fight, and more determination to do the will of God.

Ryker is finally experiencing firsts!!!

Well this week has been an eventful one of first for Ryker. We went camping with the Allen fam and four wheeling. Surprisingly, it went really well. I couldn't believe it. I was preparing for the worse, but it turned out to be fun. Ryker even took good naps while we were in the hot sun. Pretty amazing! Parker and I also took a little trip to Park City. It was Ryker's first over night sleepover with out mommy and daddy. It was a little more nerve racking for me then for him. He did great! Lastly, we enjoyed a REAL Salt Lake soccer game last night. Ryker absolutely loved it! All the lights and the drums banging. It was pretty funny. He was looking around everywhere trying to figure stuff out. Once again my little man proved me wrong. I was afraid it would have been too noisy for him, but I guess he is just getting use to the soccer excitement noise so he can be on the team when he grows up. Ha jk.

I love this season! Fall is becoming so cool and full of colors. I sure love Utah Falls with all the trees and the colors in the mountains. We were driving through Spanish Fork Canyon to get to our camp site and all I could think about was all those camping trips with grandma and grandpa Julian. We had so many places we went camping and so many spots to go deer hunting. I was missing them as we were driving through those precious mountains. I sure do miss them. I wish they could have met my little miracle man. I know Grandpa would have gave him some snuggles and his amazing grandpa advice. Well I guess I will just have to wait for the remarkable reunion in heaven. That will be something to look forward to.

So the past couple of weeks Ryker has been excelling in all his therapy goals. He is eating solid foods two to three times a day. He is actually getting his Gtube out pretty soon. We have a swallow study coming up soon to give a the Okay to take the tube out. I am pretty confident it will happen. He is working on rolling still. He just isn't motivated enough to get over onto his tummy. We are also working on sitting. He almost has it. It's pretty frustrating for him because he has his tortacolis and we found out that he is starting to develop scoliosis.  So he isn't a very happy baby during physical therapy. Which is frustrating for me. We are also working on standing up. Ryker is struggling with putting weight in his legs. He is pretty stubborn like me. He cries and cries during therapy. Which sucks because I feel like I am torturing him all the time. Frustrating!

The other day at therapy I saw a boy who was hooked up to a vent and was trached. I was thinking how lucky we are to not have that going on with Ryker. Parents of kids like that are so amazing to me. I can barely handle all the crazy business that goes on with my son. They are going to be more blessed in Heaven. I just have a small struggle with my boy, but it could be so much worse. Those parents are the blessed ones. In their eyes, my son is normal. It really opened my eyes to how much more of a blessing Ryker is in our lives. Well here is a little treat for you all. Ryker is practicing his Zombie growling for Halloween!!!

Ryker's First Real Salt lake Game! He really liked the Lights.

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!