Happy Birthday Ryker!!

I can't believe how fast this year has gone by. The past couple of weeks I have been thinking of all the blessings a miracles that have happened and I am overwhelmed by the love my Heavenly Father has for me. Wow! My son has changed my life so much. Each day I love him more and remember that he is my miracle. He is here for a reason. Heavenly Father needs him here to teach me patience, unconditional love and hope. I have gained more faith and trust this past year then I ever thought I would. I have even noticed that  my prayers have been more meaningful and powerful because of Ryker. This last surgery I thought I would be disappointed not coming home off of oxygen, but I feel comfort. I know Heavenly Father blessed him to come home in only two days. I felt he was suppose to go home off oxygen, but I know he will soon. I have no more fears. I know things will go up from here.  This last year has made me pull my hair our, cry, feel more love for someone, strengthened my marriage, and gave me life experience. Its one of the hardest years of my life. Without my husband, I succeed through the Nicu experience. Fighting with doctors and advocating for my son has been a challenge, but worth it. I can't believe how much it took out of me. Sometimes I feel like I am just treading water. I am so ready to just swim. Just get out of what I am in and move forward. Heavenly Father prepares us for things in ways we don't even realize until after the fact. He has done it to me my whole life. I keep playing the events from last year over and over in my head and wow!!! Miracles are everywhere. They really do happen!  Happy Birthday Ryker. You are Mama's Miracle son!

The more stuff we find out about Ryker and his chromosome disability the more I realize how much of a miracle Ryker is. Everything wrong with him has to do with his chromosome disability, but Heavenly Father finds ways to make those challenges a miracle in Ryker's life. 

 I can't believe one year ago I was being life flighted to Utah, the state that I never wanted to go back to, to find out my baby boy was going to be born three months early. In a terrifying c section with only my sister there to support me. Being ripped from my comfort zone in Idaho without saying goodbye to those I care about was hard, but seeing my little man in critical condition was extremely hard. Terrified, stressed, and not knowing what was going to happened was only some of the feelings.  Finding out of Ryker's syndrome was a huge life changer.

When your baby is given a genetic diagnosis, you experience many emotions. Sadness – that your baby is never likely be “cured”; Guilt – was it something you did?; Anger – why you / them?; Denial – it can’t really be happening to you, can it? And fear – fear of a future which no longer looks so certain.

When your baby is given a genetic diagnosis of a rare chromosome disorder, you can add confusion and bewilderment to that list. Because nobody, not even the genetics doctors, know what exactly to predict. Nobody really knows what a baby with a rare genetic diagnosis is capable of achieving, or what challenges they may need to overcome.  But with all those fears and feels I have felt comfort and love! Miracles Miracles Miracles!!

It's been a love/hate experience. Tears, fears, love, happiness, joy, stress, and lots of struggles have been my year, but now it's over. Ryker is one! We made it one year!  We can keep fighting this fight. My son is so strong and doesn't want to give up. He is stubborn and willing to keep going. He wants to be here and is willing to push through the pain and struggles every trail that is thrown at him. 

Once again my sunshine. Happy Birthday! I love you with all my heart!

 Julian Family Birthday Party! Monster Cakes!!

 Ryker's cake was jello and cool whip. He hated it! Ha Ha

Homeward Bound!!!

Well we have been moved from the Picu to the floor. That is a huge step in the right direction. Makes me a little nervous because Ryker is doing so well. This is not a norm for us. We are only use to disappointments and mishaps. This time I have felt comfort and calm during this stay. I know this is the miracle we have all been praying for. I am so happy and blessed to see a miracle once again in my life. Heavenly Father truly wants this kid here. He has big plans for him.  I feel a little disappointed he won't be going home off of oxygen, but they are talking about sending us home after two days. Crazy! this has not happened to us before. I am very nervous that we take him home and we will be coming back in a couple of days. Praying once again Ryker will still be the Rock Star he always has been. Love you little buddy.

We are going home! I can't believe it. Two days in the hospital and we are off to home. He is really sore and in a lot of pain. We will be home bound for a while, but he is doing great. Things are looking wonderful. His little man parts are really painful looking. I hate having to change his diaper. But give it a couple of weeks and things will only improve. I know Heavens Angels are with him. He is always smiling at no one. Grandma and Grandpa Julian must be near. They are definitely looking out for my son.

One more change in the PJ Adventure! Surgery Day!

Ryker is almost one. I can't believe it!!! As I sit here waiting for Ryker to be done with surgery I ponder on all the crazy experiences we have sores through this year. I feel like we have been treading water for a year and I am surprised we haven't drowned yet. I am exhausted, stressed, emotionally drained, and ready for a vacation from Doctors and this syndrome. I believe I have experience every emotion a human can experience this last year. I know I have cried more the last 12 months then I have my whole life. It has changed me forever. Wow! I can't believe it's been a year. Ryker has been in surgery for almost 5 hours and I am terrified to see what is going to happen next. Is this going to be the miracle surgery I have been praying for? It this going to change our lives for ever? I have had impressions that last couple of weeks that it may be the miracle I have been looking for. He will come home off of oxygen. But is it my migination, or is Heavenly Father really answering my prayers. Time will tell.......

Surgery is finally over. All the doctors said that Ryker is doing fantastic. He does have his breathing tube in, but they are thinking about taking it out. Ryker is awake from surgery and wow! Can I just say he looks amazing!. He can see. He can Finally see me. I finally can have a connection with my child because he can see me. I almost teared up. I was so overwhelmed by all the emotions. Ryker is going great.

Hospital Norms and Ryker the Fighter

I have just realized how long it has been since I wrote on this blog. To be honest, it's been a crazy stressful life the last four months. I haven't really wanted to write about all the mishaps, depressing trials, and doctor fights. The last time I wrote was back in March. We were waiting for a swallow study, a sleep study, and surgery for little man's eyes. Well one was successful, one went horrible and one didn't happen. We also found a house that was trashed and neglected. Months of cleaning,
new flooring, New toilets, New paint. It was a mess trying to find contractors to finish everything in a timely manner. We had cat poop under the stairs that made the whole basement smell. New everything and finally it is looking like a house. It feels so amazing to finally have my own space and my own family under one roof.

Tears have overwhelmed my life the last four months. Once all was said and done we finally moved in on May 16. We still had many projects to do when we moved in, but we are finally to a point where my house looks put together and homely. During the fixing up process of our house, we had a little episode with Ryker getting sick in April. He got a cold virus that made it so he had to go to the hospital. Once again in the hospital they wanted to Trach our little man. I have been fighting the doctors and going with my mom intuition about that topic. I feel the spirit strongly not to do it. But every time we go to the hospital it comes up and I feel we are losing the battle. Well that particular time in the hospital Ryker was pretty sick. Trying to get to Primary Children's was a challenger itself. That night the President of the United States happened to come into town. They shut down the freeway and we couldn't make it to our end destination. We talked to a police officer who told us that the president doesn't care. I was very frustrated at the officer's response and attitude. The officer called an ambulance to take us to the hospital, but they wanted us to go to Davis hospital. Knowing we would just be transported to Primary's we decided to decline the ambulance and take the back roads. An hour and half  later, we showed up to the ER. In the ER, we were told Ryker had been retaining CO2 and his levels were so high they.were surprised he was still breathing. We were admitted and stayed for a week. They decided it was best to send him home on a bipap machine. Ryker liked it at first. He slept better and had more energy. He even stopped desating at night. His oxygen levels were riding at 100%.  Ryker started taking milk more by mouth because of the swallow study we did. We found he is successful when his formula is honey thick. Feedings were going well, sleeping was going well, and therapy was improving.

In June, everything changed. We were scheduled for a sleep study, but it didn't go well so we had to set another date. They fit us in on a Sunday. Ryker and I went to the sleep study hoping everything will go well, but during the night things changed for the worst. Ryker was desating into the 70's and wasn't coming out of it. We were admitted back into the hospital with low oxygen levels and high CO2. Frustrating!!! I think I cried more that time in the hospital then any other we had experienced. I felt lost! We tried the bipap and it hadn't been helping. I still felt we weren't suppose to trach him, but we now what? It might be the last resort. I fought more with the doctors then ever before. I get mad when they don't talk to each other and try to figure something out. Luckily, we had a very friendly and patience doctor, Dr. Crammar,  that finally listened to me. I told him all the symptoms and experiences we have had in the past. He decided to do a CT scan on his lungs. After crying and pleading to the Lord, they finally found something. Ryker was diagnosed with a hernia in his diaphragm. His spleen was up in his chest. Many of the doctors believe this is not what is causes his breathing problems. But I feel strongly that it is.  We are so grateful for following the spirit and the promptings of the Lord.

After thinking about all our hospital stays and all the problems Ryker has been having from a collasped lung in the Nicu to the problems of surgery in January. Also the retaining CO2 in April and June. Heavenly Father really has been watching out for our son. I believe that Heavenly Father made it so the Doctors couldn't see the Hernia when he was born because Ryker was too little and too weak to get the surgery. He may not have made it through if we found it earlier. All the hospital stays and disappointments have been for this one moment of relief. Ryker needed to be stronger, bigger, and be able to breath better. If he didn't get sick in April we would have had surgery in May for his eyes and testes, but he may have struggled more. He might not have got extubated. Everything happens for a reason.  It was all part of his plan and we just needed to struggle through it and learn from it. It's not what I had in mind of what Ryker's life would be like, but at least we have an answer. It's going to be hard to wait for this surgery. I don't think I will be a very patient mama, but I will try. Surgery is Scheduled for July 22. Prayers that everything will go the way I want it to go. Praying also that my way is the Lord's way as well. Praying for a miracle.

 April Hospital Visit....Not fun...Sick Ryker!!!
At least I got to have my favorite meal at Primary Children's. Mac and CHEESE!!!!

 June hospital stay!!! I sure do hate this hospital. Every time we go there something bad always happens! No more!

We found a house!!!!

We found another house. It kinda just fell in our laps. We were noticing all the house that are for sell and rent around here by Tanner and Tami. Then Tami ask the bishop's wife if she knew of any house around here for sell or rent. Then we put it on the ward facebook page and lots of people responded to it. We even had people from the ward come to the house to tell us about house next to them that are for sell. We found one. I am not a super big fan of it, but walking through it Parker and I both felt it's the house we are suppose to get. It's actually only four houses down from Tanner and Tami. We put in an offer yesterday and they accepted it. They want to close within two weeks. That's great for us at least we will have a house, but once again it's not what I want it is what Heavenly Father wants. I am praying that one day I will want what Heavenly Father wants because right now I just except it and doing my duty. Heavenly Father knows that I will follow him even if it's not what I want to do and I have shown him over and over again. And He always blesses me for it.

Now for little man, Ryker has had some scary moments this week. He couldn't breathing and turned blue a couple of nights ago, we blasted him with 4 liters of Oxygen on his tank it got him pink again. He is doing fine now. I think he has the flu or something as well. He had a temperature and was acting all achy, but he seems much better today. Finally sleeping again. Thanks goodness! We are still working on rolling and sitting up, his head control is finally starting to get stronger. Hopefully soon he will be able to hold it up without flopping it around like a rag doll. We are improving! Feedings are going really slow. It's pretty frustrating to see him work so hard when he is eating a bottle. He gets so tired. I wish I could make it easier for him. But I guess that is what therapy is for. We are trying a new bottle tip hoping it will make a difference. We will see!. Next week he has another swallow study, hoping for some answers.

 It has been a great run for old yellow. The lancer has been a PJS staple and I will surely miss it. It was really sad to say good bye. But we did get a new truck. Bigger then our blue one, but very manly for Parker. More adventures for the PJS!

A week later and more on our plate!!

Well this last week has been a tearful one. We are officially homeless. We found out last week that our house fell through. The appraisal came in lower than expected and the seller didn't want to go down on his price. So we are on a house hunt again. We have felt really lost this last week. Thinking Heavenly Father wanted you in one place and didn't work out makes you wonder if you are really receiving revelation.  I have cried more the last week then I have in a long time. For some reason we just need to be tried a little longer. Not sure what I am suppose to learn from this, but feeling very lost is not a great feeling. Maybe I am trying hard to control my life and not let Heavenly Father do it for me. I am still learning to let him lead me. I am pretty stubborn though so sometimes I just don't get it I guess. Ha. I think it was more that I didn't have a place to call my own and a house to raise little Ryker that made me more sad than anything.

After thinking about an impression we both had back in December that we are suppose to be in this area we put an application for an apartment up here in Clearfield, just so we didn't have to change all of Ryker's therapist until we knew where we were suppose to be. We did get the apartment, but we were feeling like it wasn't what we needed to do so we told the owners we changed our minds. We are feeling more that we need to stay in this ward more than anything. I am just ready to move out and move on, but something is just stopping just from doing that. We feel we have hit a spiritual road block. Not knowing what to do  is pretty much the worst feeling. I often wonder am I not doing enough to receive revelation. Am I not going to church enough to feel the spirit. What has changed that it's making it so I don't really feel the spirit as strong as I have before.  I have drawn away from Heavenly Father the last couple of weeks so maybe that's what it is. I am feeling very burdened and overloaded and very lost. I have decided to take stuff off my plate. After this semester of school, I am taking a break. I told Parker he needs to use his inspiration to find us a house because I just can't do it right now. I am slowing trying to get things falling off my plate, I need to remember that I can't do everything and I definitely can't do everything perfectly.

Well after much spiritual fine tuning, I have come to the conclusion that I am just giving it to the Lord. I can't do it anymore. I have been trying and trying to make things work. I am realizing my life will never be like it was before all the crazy life changes have happened. It's time to grow up spiritually and accept the cards I have been dealt. Once I came to this realization, I have felt much better about myself and my situation. I can't just sit and be sad all day everyday. I can't say poor me anymore! It's time to really move on. My cousin told me on Monday, Life is hard then we die mine as well have fun. I am going to live that from now on. Yes I am not ok with being a special needs mom anymore, I am not ok with living in Utah, I am not ok with all the doctor appointments and therapist, and I am not ok with living in Clearfield, but I accept it. It's my life and I guess this is what Heavenly Father wants me to do so I need to stop fighting against it. I will learn something from it, not sure what it is yet, but I will am I sure. And some day I might even like it here in Clearfield, Utah with all the doctors and therapists. Maybe.... Let's not get too hasty!

Well that is all for this week. Here are the pictures I feel like I promised last week, but never posted. Have a super great week yourselves!

Wow! its been a month.

Time has really flown this last month. With the crazy weather warm one day snowy the next. Utah is sure a crazy state when it comes to weather. Ryker has been very busy with therapy. We have had vision therapy, occupational therapy, physical therapy, and massage therapy. Early intervention has been great coming to the house and getting him moving around. I have seen so much progress with little man. He is wiggling around tons now, lifting his legs trying to roll over. He has grown two and a half inches in length and is finally 12lbs. He is growing out of all the little new born clothes and in big boy clothes now. It's so cute to see him developing into a little person. Parker and I have talked about sometimes it's sad not to see him on the same level as other babies, but at least he is growing. We went to the geneticist today and found out that not only does Ryker have trisomy 9p but a partial trisomy 9q. We don't know how it will effect him, but there is no other cases with the same gene makeup as him so once again he is our little mystery.
Our house is another story. We were suppose to move in this weekend, but something went wrong with the appraisal so we won't be moving in for two more weeks maybe. So we might be stuck with the T's for a while longer. If this doesn't work out with the house we will be looking for a rental. I am sick of not having my own space.
Life has been crazy. My mom is being released from rehab today. I feel bad because I am not able to help her like I wish I could. I don't know what she will do when Josh moves out. Sadie and him have been amazing. I am truly grateful for them. They have been a saving grace. I don't know what we would do without him.
The last couple of weeks have been stressful. I even had a nervous breakdown. I had to get away for a while. I went and saw my mom at the rehab center. She told me Heavenly Father didn't send Ryker to my family to break us up. I was a little amazed my mom would say that. She isn't a very religious person, but it out my heart and mind back into perspective. I know Heavenly Father wants me to do this, but more often then not I feel I can't do it. If Ryker was a normal baby with normal baby problems that would be different. But it's the normal baby problems plus the doctor appointments and the therapy and the gtube and the oxygen and all the trisomy 9 problems that come with little Ryker that is hard to handle. I am not perfect but I am trying. I just wish life would get easier at some point. I am finally realizing this is how it's going to be the rest of my life. It's not going to vhange. Sometimes I feel it's not going to get better. And that's where I am right now. I know things will eventually get better, but I am sick of being a special needs mom already. But I know that's what , I am suppose to do so I just keep going. I love Ryker too much to quit!
Many of you might be wondering how school is going. Well I am still trudging through it. My grades aren't up to my Jessica standards, but it's ok. I am taking a summer break just to get somethings off my plate. But I will be going back in the fall. Got to get it done and all. It will be nice to say I am a master graduate. Well folks that enough for now. Hopefully it won't be a month before I write again. I will try to do better. Loves!!!