Surgery has proven a success!!!

Today was a big step in Ryker's recovery. He was bumped down to 1/8 of a liter of oxygen. He is doing fantastic with it. Sleeping is still a challenge for him, so we will most likely still be using the bipap but still it's a huge blessing to see some improvement. I wanted it to be fixed right after surgery, but there weeks later is fantastic too. I was looking faith that it wouldn't happen, but once again heavenly father proved me wrong. He is my little miracle baby for sure.

Ryker is more aware of faces, lights, toys, and everything around him. He loves to smile and is starting to have a grunt laugh. He finally can shake a rattle in fact he has this little orange ball he loves to sleep with. It's like his comfort toy. Today in therapy he started to lift his head on belly higher then I have seen him. It's been a big week for eating as well. I have been feeding him a bottle pretty much the every feed except at night time and naps. He is doing excellent!  Taking in about 4 1/2 ounces of formula each time. It is still thickened, but he is growing so much.  

I just remember all the tears of bring him home for the first time, but the frustration of him not eating and not being able to breath. I was so scared and I can't believe he has come this far. Once again Heavenly Father has proven me wrong. Oh yea of little faith!! I still have lots to learn. 

This is Ryker's home health nurse friend Paige! We sure do love her!!!

 Ryker's first adventure out after surgery. We went to boondocks and he handled really well.

Derby Day!

We went to the demolition derby. It was fun but really loud. I was grateful Ryker didn't come.  It's probably good from me to get out sometimes, but to be honest I am such a home body.  Which is crazy because I didn't use to be like that. I love just being home. It's my comfort area I guess. It's where I fit. Parker brought up that maybe it's because Ryker can't be with us due to his problems.  I started to cry because I think that has a lot to do with it. It's still really hard for me to see families with normal kids.  I know that Ryker will be okay. But the problem is that most of the time I am not okay with it.  I hate to admit but it's hard to see Parker's siblings with their normal kids. It's difficult knowing that will never be Ryker. He will always be special and always need something. Hospitals will always be our norm even if his breathing does get better. There will be something else. He has a syndrome that will prevent him from being normal.

All the emotions from last year have been flooding my mind the last couple of weeks. This isn't how my life is suppose to be and it's hard to accept it sometimes. I just keep going because that's what you do. I love Ryker but I hate his syndrome. I have to do my best to make the most out of our situation. This is what is meant to be.  Most of the time I feel like I can't be the mom that Ryker needs. I am just Jessica Julian. The crazy red head who got into trouble, played softball, and stayed out all night. How can I do this, but some how it just gets done. I have the strength everyday to get it done. Most of the time I know that strength doesn't come from me.

There are often times when I feel like no one understands what's it like being a parent of a kid with special needs until you have a kid with special needs. Not grandparents or uncles, aunts, no one unless you are the parent. It's hard to fit in sometimes. Normal families have normal problems. Everyday family situations, but parents with kids with special needs it's different. Life is different. Experiences are different. Being a home body  is sometime the safe way out and easier way of life. It's hard to know where your place is. I don't know where I fit now. Family functions are different. I don't fit there most of the time.  Family tries to understand and most of the time pretend to get it, but I know deep down they don't. Normal families with my abnormal life makes it hard to mesh together. I like living in my own bubble. My own world because that is normal for me until I get out and realize what is normal. It's hard to accept that's why staying home is better because that is where I fit that's where I feel comfortable.

I know it's good for me to get out and have a normal life, but who needs normal when you have Ryker Delano Allen. His normal is my normal. I just accept it. Sometimes I don't like it, but I accept it.

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!