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!!!

Ryker's first Christmas!

We have made it through all the holiday parties and trips to Idaho. Finally some peace until surgery in three weeks.  Ryker got to experience lots of family events and friends the last week. He even got to check out his house in Idaho and finally see his room that will never be his. Sad! But overall it was fun in Idaho and we sure do love the Thrailkill family. The parties were a little overwhelming for him. He has slept so much this past week due to all the excitement of christmas, parties, and santa. Thanks to his amazing Aunt Jen we were able to attend all the family gatherings without exposing little man to other little humans. Hopefully he stays well for surgery. The last week Ryker has improved his head turning. He was struggling with turning his head to the right side, but with a long week of exercises we accomplished it. We are also working on supporting his head, which he is doing great on. He is now able to sit in a bumbo chair with out any help from me. He is not sure if he likes the chair, but little man is getting use to it. Ryker has found that his left hand is so much better to suck on then his binkie. I am a little worried he will find his thumb and that will be another thing we will have to overcome.  We went up on milk milliliter intake by the bottle. He is now able to eat 15mls which is almost a 1/2 ounce. Ryker has been struggle with the bottle the last couple of days. The milk has found it's way into his nose when he breaths and sucks, so I am just praying surgery will help with this situation. We also had his little baby blessing on Sunday. It was such a nice blessing to have before surgery. Now that all the parties and holidays are over, we are getting nervous for surgery. I know it will be worth it. It's going to help so much. I just pray there is no complications during it. Here are a few pictures to keep you busy. Here's to another great week! Have a great new year!

Ryker is loving home!!!

WOW! it's been a while since I have updated this blog. Well since I have been living with my brother in law I have to play by his rules. He turned off the internet so I have been unable to post anything, but my loving husband got me in touch with internet powers now so we are back in business. Where do I start. There has been a lot happening lately. Ryker has had many follow up appointments with speciality doctors. The first was the ENT doc for his nose. We were informed that his nose has gone worse so we will be doing surgery next year on January 15th. Yes, more hospital time. But hopefully no complications this time. So the heart doctor told us she wants to do another Echo on his heart during surgery. I guess he has Pulmonary Hypertension. Pretty much high blood pressure. They want to make sure his PDA heart issue was completely closed up. Another fun, but not so fun event happened. Ryker is two months behind in vision. He needs baby glasses. We got him sized and fitted for them last week. We are just waiting for his prescription lenses to be place to he can have them ready to go. Hopefully by Christmas he will have his specks!
Last weekend was a scary weekend. We made a trip back to the hospital. Ryker couldn't breath and was turning purple and limp. I was a worried mama thinking he might have to stay in the hospital for much longer, but after an emergency room visit, ambulance ride to Primary Children's, and more doctors found out he had a block nasal passage. After heavy duty suctioning we were good to go home. Thank goodness it wasn't a long stay.
We also had family pictures this week with the Allen side of the family. Baby looks pretty cute in his awesome outfit. We also had some fun visitors this week. Grandma and Grandpa Allen came up and Aunt Jen and Uncle Godfrey. Ryker loved his uncle Godfrey. Snuggled right into him. It was pretty dang cute!
The last couple of weeks we been working on muscle tone and exercises. Ryker is able to move his head side to side now and is learning to hold his head up. We also have been working on sucking. Occupational therapy has had him suck on a tootsie roll and drink 10 ml of banana milk. He enjoys every minute of it. He kicks his legs and just wants every bit of the tootsie roll. It's pretty funny,
Bailey has finally understood that Ryker is here to stay. He loved trying to be close to him. I am not too worried about Ryker being over powered by the dog because a couple of nights ago Bailey wouldn't let anyone near Ryker. He would just growl at everyone even me. Very protective puppy. I knew Bailey would be good pet therapy for Ryker Man. Well Christmas is next week. I can't wait to share Ryker's first Christmas with you all. Until next week. Thanks for all the love and support from everyone. We appreciate it!.  Oh PS since we totalled the truck, we got another family member. Check out the new and improved PJ Allen Vehicle. Yes it might be very mommy, but that's what you get when you have a baby in the household. Ha

One week home!

It's been a great week having little man home with us. He sure is taking to the sleeping all day long and being "normal" baby. He did get shots the other day.  Poor little guy is sore and more fussy. Hopefully it passes soon. Luckily for mom and dad, Ryker sleeps pretty much all through the night. I feel really spoiled that I get all eight hours of sleep. I sure do love being Ryker's mommy! He is finding that not being bugged while he is sleeping is the best thing ever! Also, Ryker is loving his mamaroo that Grandma purchased for him. That is his favorite spot to sleep. Little man still has is ups and downs. We are struggling with his congestion in his little nose. Sometimes he is so congested that he can't breathe and we have to turn up his oxygen to help him out. Hopefully he can get over that sooner than later. Feeds are pretty easy. We have even trained Aunty Tami to help out with his feeds. Sometimes mom needs a break even though she doesn't want to have one. Tami and Tanner have been amazing! We sure do appreciate all they do for our little family. They are so sweet to clean out their basement laundry room for us to use. Freezer and dog space was much needed. Thanks again T's we love you!!!
Ryker had is first Physical Therapy and Occupational Therapist appointments this week. He got his work out. I am not sure if he liked it, but we will get the hang of all the training that will be taking place the next couple of weeks. This week has been busy trying to get all the follow up appointments set up. I sure do need a schedule so we can get Ryker moving along. I was very pleased with his Occupational Therapist and his pediatrician. They are both awesome! Next week the OT will be helping Ryker learn the sucking and swallowing motion with Tootsie Rolls and Slim Jims. That will be interesting to see how Ryker like those two flavors. We are also going start again with bottle feedings. He is going to be back on his yummy banana split milkshakes. Here's to another great week with Ryker roo home for good.