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!!!

Post surgery and hospitals

Well the last post was before the big surgery, and here we are two weeks after surgery. We are still in the hospital. Surgery went well. The ENT doctor told us that his nose wasn't as bad as he thought it was going to be. Ryker was breathing much better after surgery. I was very happy to see him not struggling with breathing as much. We were in recovery for an hour, then we ventured up stairs to the infant room. Doc Grimmer anticipated only a short stay here at the hospital. He was telling us only over the night or by Sunday. But that night Ryker was dropping his oxygen levels and was struggling breathing. In my mother perspective, I believe his nose to swollen and was still in shock of surgery so because babies are nose breathers Ryker couldn't breath. They had to put a tube in his throat to help him breath. He was also taken to the ICU.  Once again the ICU game. I hate it. But on the up note it is better because I can sleep with my little baby. I have a bed and there are a lot more accomidations for me. It's a better situation then last time. I keep telling myself we did four months of this with no parker, no sleeping at the hospital, and more frustration, I can do this. Piece of cake. It is nice to see my husband everyday through this whole thing. That's a blessing. One Reason we are suppose to be here. Well with all this happening he developed episodes of not breathing. Some nurses say he would hold his breath, some would say he wouldn't breath, some would say it was when he was wake, while other said it was when he was asleep. These episodes were happening at home, but Parker and I thought they were due to his obstruction in his nose. We were praying that once it was fix he would be able to breath just fine. Well Ryker struggled for a week being intubated. They would use morphine for pain and sedate him which made the episodes worse. The ICU doctors decided to take him off the morphine and sedation thank goodness. I hate how doctors think meds are the solution for everything. They would sedate him more with his episodes thinking it was axiety. But that wasn't it. We have had test after test the last two week. MRI his brain, CT of his heart and chest, Blood work, Virus tests, Infection tests, EKG for seizures, Meds for seizures, EEG of his heart. They still haven't found anything for the cause. Ryker got extubated last Friday the 23rd and we were moved upstairs back to the infant room. Grandma Allen came to spend the weekend with little because it was the last weekend we had to move out of our Idaho house. Yes folks, it's official, we are now Utahans again. I was really emotional as I pack up our belongs and saw my friends from Idaho Falls for the last time. I was feeling very grateful and blessed to have lived in Idaho Falls for as long as we did. It will truly have a special place in my heart. I cried one last time as I looked at our house empty with a uhaul parked in front. I was remembering all the blessings and experiences we had in Idaho. I thought of all the people that have touched my life and made me a better person. I will miss the experiences we had there. We had many people show up to help us pack. People that I care about very much, friends that I consider family. I said good bye to our old ward. As I sat in Sacrament Meeting I felt like it wasn't my ward anymore. This isn't where I was suppose to be anymore. I was feeling blessed for all the miracles that had happened to use while living in Idaho. God is real. I testify of that. He is aware and knows everything we are going through.
For those of you that don't know I am still going to school through Boise state. School started the week of Ryker's surgery. It's been a struggles once again. Often I think why am I doing this while my son is the hospital, but I feel it's what I am suppose to do. So I just push forward. I have already had one late assignment. Trying to juggle Ryker in the hospital, moving from Idaho, selling our house, and getting ourselves situated for what is next. Life just didn't have time for homework this week. Hopefully it will be better next week.
Well that is our story for this week. It's been crazy busy and full of stress. Hopefully we can survive another week of this craziness.

Getting Ready for Surgery and Saying goodbye to our Idaho home!

A lot has been happening this past week. We have seen some miracles and blessings of peace, love, and testimony. I have been slacking off on Ryker's Physical Therapy and Occupational Therapy the past week. He's been so sleepy and we have had a lot of appointments. But after this surgery tomorrow we are going full on therapy to get this kid into shape. We were told not to give Ryker bottles this week because of surgery. They don't want him to get an infection or more breathing problems before surgery. That would not be good. We also found out on monday that he won't be needing a follow up on his esophagus anymore. He is all healed and good. Which is one less doctor we have to see now. Ha. We also saw the ear doctor this week. Ryker once again didn't pass the hearing test. It came back that he has fluid behind his ear drum so on Thursday they may be putting in tubes to help drain the fluid. Hopefully that will help with his hearing. And now the big surgery. Tomorrow and the next few weeks are going to be tough and trying, but I pray that we will survive. I pray that surgery will go well and there will be no complications. I also pray that this surgery will improve his breathing and he will come off of oxygen. I am praying he will eat on his own and sleep better. Everything is riding on a successful surgery tomorrow. This event will happen at 9:30am. Praying we can all sleep well tonight.
As I reflect on Ryker and his little life, I have seen many miracles and blessings. This child has blessed my life already. When he was first born, I was afraid of him not making it. But with blessing after blessing and promises from my Father in Heaven, I know he is suppose to be here. Ryker has a purpose of being my son. With all the time in the hospital, I was worried about being able to pay for all his medical expenses. I was worried we won't be able to make enough to support our son's needs. But with surprise money from friends, family, and insurance payouts, we are going to make it. . Parker getting a great job that he loves and isn't stressed about has blessed our little family.  Last weekend we got a phone call from our Real estate agent in Idaho Falls. He informed us that we had two offers on our house. One of those offers was exactly what we asked for. Heavenly Father keeps blessing our little family and I am so overwhelmed of how much love he has for us. The last six months has tried my faith, my patience, and my worthiness. We are still going through trials with our little boy, but Heaven Father has shined the blessings through for me to see how much he loves me. He is showing me how much he is there and is watching over Ryker. Ryker truly is a miracle. I am seeing more and more miracles each day with all the blessings that are being thrown at us.
Somedays I worry about my son. How are other children going to treat him? How will he develop? Will he be able to make good friends. Each doctor appointment seems to tell me something bad or something we need to be concerned about. I have to keep reminding myself that Ryker's health could be worse off. He could have more severe problems with his Trisomy. With every blessing he receives I am reminded that he is going to have trials, but he is going to get married in the templ. Ryker will go to college. He will have a normal life like everyone else. I am so overwhelmed by all the prayers all of you have offered in behalf of our family. I feel your love everyday. I appreciate all your support. I am going to start a blog this week on all the miracles I have seen in my life. This will not only help me remember what God has done for me, but if you choose to follow you can feel the spirit testify that Heavenly Father is real and He loves each one of his kids. Think, if he can bless some crazy Red head like me, He will bless your life as well. Thank you to those in our new ward who gave us that amazing gift basket. And to our family who surprised us with money at Christmas. We are so grateful for all of you and for all your love toward us. There are no words to express how much that meant to us. THANK YOU!

Happy New Year!!!!

It's a new year. 2015 has potential to be fabulous and high stress. We are starting this year out with surgery. My mother had surgery on Monday on her back. It went pretty well until today. I got a phone call from my brother, she had to be moved to the ICU. She has low blood pressure and is responding to medication. Hopefully she will be out of the hospital soon. Now little man has surgery next week. January 15th is the day for many prayers. We are praying that the doctor can open up his nose and fix all the problems that are present. Worst case scenario is little man coming home with a trach. (a whole in his neck to breath) I don't want that to happen, but whatever Heavenly Father throws at us we will go with the punches. We are still in the process of selling our house in Idaho. Lots of people have walked through it, but we don't have any takers yet. Hopefully soon, we need to make the last transition to Utah to start our new adventure here. I know the T's like having us here, but I want my own space. Preferable bigger then a small bedroom for three plus a dog. New Years was pretty fun. We stayed up late playing games and eating the last of the junk food. I know everyone makes losing a weight goal, but for me it's no sugar and soda pop goal. I hope it works out. It's been going pretty well. I sneak in a piece of candy every once in a while, but you can't just go cold turkey with deliciousness of sugar. Not Possible!!!
This last week has been stressful with the switching of new insurance companies and trying to get everyone coordinated with our new insurance. Finding a new primary care doctor for Ryker was such a pain in the butt. Now we are hoping that the surgery will be covered. I am just trying to get all the ducks in a row before surgery, hopefully I haven't missed something. This was our first week back in going to the doctor every day. We saw our new primary doctors, the eye doctors, Occupational Therapy, and Physical Therapy. And yes folks, Ryker finally got his baby glasses. I didn't realize how blind he was. I hope it's not because of the oxygen. Poor kid, his little body just struggling working for him. Too bad we can't just get him a new little body. He does look very handsome in his little man glasses. Just like a computer geek like daddy. They are a match made in Heaven.
Well next week is the long week. Starting monday off with more doctor visits and more Therapy. Finishing the week with surgery. I pray we all make it through it. Sleep will be the most important. Not to mention Parker and I are making another trip to Idaho to finish packing up our house. Hopefully not more rolling vehicles in our future trips.  Well here's to a good week. Love ya all!

Great Grandpa Allen 

Great Grandma Allen

Aunt Jen and Uncle Godfrey

Aunt Sadie and Uncle Josh

Uncle Jeromy and Aunt Kathy 

My Boys all crashed what is a girl to do?

The Baby Einstein

Finally I can see my toys!

Like father like son

Check me out!!!