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!!!

A new adventure in a new place

I have been meaning to update this amazing blog. Lots have happened the last couple of weeks not only for little Ryker, but for a new place to start over. Parker and I have been very diligent in trying to buy a new home here in Utah. The Market is a little crazy right now with lots of buyers and not enough sellers. Every time we find a house we like it's gone before we had a chance to look at it. The houses we go look at are not in very good shape. But with all the stress mixed in with Ryker's hospital adventures, and shopping for a home, we finally did it. We found one, made an offer and we move in March sometime. YEA!!! One thing to check off the To Do list. But buying a house makes more on that To Do list. But at least we have done it. I can't wait to finally be settled. Yes we are in a routine....well kinda....We now need our own space. I have been craving some normal lately. I don't think this will change much, but at least we can spread out. We have been very grateful to our brother and sister (Tanner and Tami) for letting us stay with them. I know it must be hard for them to have three more join in on all the craziness in their house. I bet they will love having their space back. But we are truly thankful for them. They have made a huge difference in our lives and helping us out so much. I don't think we will ever be able to repay them.

Now little man has had some fantastic appointments, but also some sad one as well. Urology wants to do surgery to fix is his little man parts. We also found out that Ryker's eyes are not growing properly so he will be having surgery on them as well on May 6th. I don't know how long the recovery will be. I am not even sure if it is same day surgery. But praying everything will not turn out like the last surgery experience. On a positive note, we went and saw the ENT doc again this week. He is very pleased with Ryker's recovery. He is breathing fantastic. No more spells, no more beeping at night. He is sleeping all night long. I am a very happy mama when it comes to Dr. Grimmer. I told him many times thank you! Ryker got his little nose stents out and now he is doing even more fantastic. No more boogers! Life at the moment is great for Ryker. We got a new physical Therapist and Occupational Therapist this week. They are awesome! They are what you call Parent Coaches. They teach me everything so I can do it on Ryker twice a day. They even made videos for me to watch. Very informative. We will be busy getting Ryker to his level. Right now he is only at a two month level meaning he is four months behind. But I am confident we can get that moving in the right direction. Ryker is just a sweet baby. With physical therapy he get so sleepy and sleeps so much better. Great work mom! He has figured out how to scrunch up his nose and pucker up his lips. He is making more and more sounds with his mouth which is great!

We also decided to get memory foam for Ryker's bed. Now Parker won't be sleeping on the floor anymore. Since he liked our bed so much, we decided to transfer him into his own bed with his own pad. He is enjoying that very much. I am glad we are finding things that work great for him.

The last couple of weekends has been quit busy. We have played games with extended cousins, birthday parties on the Julian side, and sick with the flu. But Ryker is a champ. He is taking everything in like a little baby should. We are trying to make things as normal as possible. Yes I maybe somewhat in denial my baby boy has special needs, but I am trying to work it out in my head how my life is now and how it will be in the future. I am sick of insurance companies, doctors, and appointments so a little bit of family fun is what we need sometimes. I actually found an amazing message from a fellow Special needs mama. Check it out!

"I understand. That's all I want to say today, really.
I want you to know that you are not invisible.
I know it is the kid of hard that no one else can fathom
I know you felt a knife rip through your heart and a wave of relief flood your soul the moment that a doctor confirmed what you had already known for a while, but maybe hadn't been quite ready to admit.
I know that the novel that sits by your bed at night is not really a novel at all, but a stack of paperwork to be read and signed and returned.
I know that the first time you walked into that therapist's office you felt like you must have failed somewhere along the way. But I know you didn't Because there you are, sitting in the office waiting room, doing everything you can do to get support that for that very same child you  think you are failing.
I know that it is so hard not to harbor resentment in your heart.
I know that you might have had to give up a promising career because there are so many daytime appointments now where a guardian needs to be present.
I know that it is putting a strain on your relationship with you spouse.
I know that sometimes you have to count the minutes until the end of the play date because it is difficult to be around other mothers while they talk about issues that seem so mundane in comparison to the cards you have been dealt.
I know that your weight is probably different now than it was before you got the news. It might be because you have been going to so many appointments every week that dinner comes from a drive thru more often than it does not.
It might be because you are eating your feelings, or it might be because have been so sick with grief over what could have been that your appetite has disappeared completely.
I know that you might need a little bit of time to grieve.
And I know that if that little bit of time starts to turn into a lot to time, then you shouldn't be ashamed to talk to someone about it.
I know that talking to someone, even your husband, might feel pointless sometimes because no one really sees your child like you do. They aren't there all day every day and they don't see all of the everything.
I know that sometimes when you get a break for just a minute and everything seems infinitely easier, it is hard to put up the mental roadblocks against what could have been.
I know that it is almost impossible to stay away from "if only" but I know that you have to if you want to survive.
You can't think about the way that things could have been different.
You can only deal with the way that they are.
You are strong. Even when you don't feel like you are very strong at all.
The years will pass.
At first it will go so slowly and it will be so hard that you think you might never make it out alive.
I know you are unsure that you will be able to hold yourself together until the next dinner.
If you can't make it until dinner, then it is all right to cry right now. No, you are right, it won't change anything. But I give you permission to fell your feeling anyway.
I promise those feelings will not always be sad ones.
The job itself will not get easier, but you will get even stronger and smarter and your tool belt will grow.
There will come a day when you feel so confident and equipped.
Then something will happen that brings you to your knees and the cycle will start again.
It will be okay, because then you will know that blossoms can grow in even the stormiest weather.
By then you will have seen tremendous growth and progress that the blows will be a little bit easier to take, if only because you know that there is hope."

As I read this, I was in tears knowing everything is what I feel. I often think as I read these words it is my savior speaking to me. As I think that I know he is there and listening to me. So if you ever think your life is in the pits, just remember the savior knows. He went through everything for each of us. The savior is real and loves us. I know and testify of that.

My two snuggle buddies!

Sleeping like a big boy!

 

I love the Little Ryker Smile!!

Ryker is such a big boy!

This is what you get when daddy is in charge. Onezie on the outside of your pants. oh daddy!

Daddy and baby nappy time!

He is working the bumbo chair!

Home finally! At least for a little while.

We are all home finally from the hospital. The doctors threw their hands up in the air after all the labs, test, MRI's, EKG, EEGs, etc. We even had a sleep study done on Saturday, but we haven't got the results back yet. I hope its good. All the doctors and nurses keep saying this kid needs to have a tracheoscopy meaning a tube placed in his neck to help him breath. Every time they tell me he needs one and all the conclusions come back he needs one, I know deep down in my heart my son doesn't need one. I feel my Heavenly Father testifying to me not to place one in his little neck. Just like I know he doesn't need to have a knot tied in his tummy for his reflux. It's been a hard decision for me just because all the physicians tell me one thing and my heart says another. I have cried for the last three days wondering if it was the right decision. It's been stressful. Since the doctors didn't know what to do for Ryker they decided to send us home. The first couple of nights were rough. Ryker was stressed out and didn't want to sleep. With the nursing staff waking him up every two hours he got into the habit of not sleeping. So we had a mad baby on our hands. Then every time he would fall asleep he would do his little no breathing spells and his oxygen level would go down. It was frustrating because we would stay awake and not get any sleep. I was to the point of giving up. I even had Parker give Ryker and I blessings. It is nice to here blessings and promises once again, but when you are fed up with everything and not have blessing fast enough was just not helping the situation. I found on facebook this great talk from Elder Holland. It was a Mormon message. The quote that really got to me was this:

"Don't you quit. You keep walking. You keep trying. There is help and happiness ahead. Some blessings come soon. Some come late, and some don't come until heaven but for those who embrace the gospel of Jesus Christ they come."

I started to cry and pray even harder after that. I wanted to give up. I love my son dearly, but sometimes I can't take the stress of being his mom due to all medical problems. Sometimes it's too hard. But with that message I knew I could keep going. I can do it. It's not going to be easy, but it's Ryker. And I love him. Heavenly Father promises me that he is always there and He will always help. If I just keep swimming he will come in and save me when it's too hard.

At least little man came home for my birthday. It was nice to be able to be home and just be a family again for my birthday. We stayed down stairs all day while the family upstairs partied. It was nice to have peace and quiet with no doctors or nurses tell me what I can and can't do for my son.

Today has been a better day. After all the praying and crying and stressing I feel comfort. Ryker hasn't had any spells of no breathing. Knock on wood. We figured out that he likes to sleep on his back on our bed. So last night I slept on the floor so he could get good sleep. I really like happy babies so I sacrificed. Hopefully this will keep up. I am super afraid what will happen if it doesn't. We still haven't got back test results for the sleep study. I am worried about them anyway and kinda don't want to know. But the doctor did call us to tell us that his EEG came back mildly abnormal because of his syndrome. I am not sure what that means for developmental reasons, but at least it's not severe or moderate.  I guess it will still be a mystery.

Ryker also had his six month shots this week and we had a urology appointment. I found out that once again little man will need surgery. We will be doing it in June. He is having problems with his little man parts. They need to fix them soonish or there is a chance he could develop cancer when he is a teenager. Once again the journey of Trisomy 9p moves forward. Some day I hope we can have some type of normal, but 2015 might not be that year. ha

One good thing about the hospital. Ryker learned to keep his binki in his mouth with Grandma's help of course, but now he is a pro!

The Nurses made Ryker a 6th month birthday sign for good luck!

The sleep study....How can anyone be tested with all this positioned on them....NO wonder he did poorly...Plus his stents were clogged. DUMB!!!

Grandma Julian in Rehab snuggling Ryker after he got out of the hospital. Grandma sure missed him.

Ryker is loving his bumbo chair now that he can breath better. At least one good thing came from nose surgery. It actually made it so he could breath. Ha!

The first time we brought Ryker home he hated his cradle. We had to put him in a swing thing call the Mamaroo. But now he can't sleep in the Mamaroo. He like his back too much. Ryker is finally enjoying his cradle. Yea!!!