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!!!