Power to heal

Well we are still in the hospital. They have done so many tests.....most coming back normal which is a good and bad thing. Good because who doesn't want tests to come back normal right?? And bad because it doesn't help that much with finding out what is going on with Kaiz. It rules things out yes but doesn't help with giving him a diagnosis so we can move forward.

Today KZ had a Bronchoscopy to try to figure out why he is having a hard time breathing and why it is so loud. He is already diagnosed with Mild Laryngomalacia (floppy throat) which they said 95% of kids grow out of but he is just burning so many calories trying to breathe, they just wanted to make sure it wasn't anything else. He is on very little oxygen and his oxygen numbers are staying up where they should be (95-100). They have discussed with us the option of a Tracheostomy but since he isn't showing that he can't keep his oxygen level up that isn't something that we need to decide and do right away, only if it gets really worse and his oxygen levels drop a lot. For right now he isn't struggling too much.

His weight is continuing to go up a little everyday so that is good! They switched his NG (nasogastric) tube to a NJ (nasojejonal) tube. The difference is the NG tube goes from his nose to his stomach while the NJ tube goes from his nose to his small intestine. They switched because the likliness of him refluxing is lower with the NJ tube and they don't want him aspirating on any reflux. He was able to eat nector thick formula a couple days ago but we had to stop when they decided to transfer him to the PICU for monitoring while he had a high flow nasal cannula in. They did the high flow to see if maybe it would open up his lungs a little more. The reason they wanted to try it was because they did a test to check his CO2 levels and they were higher than they should be which tells them he isn't releasing it like he should be but the test also told them that his body is making up for it and that his PH levels are perfect. We tried the nector thick formula yesterday for the first time in a couple days and he wasn't very happy about it so we are going to try again tomorrow, hoping that he will want to eat it.  They aren't sure if his breathing issue is a nerological thing or if it is just a blockage.

He also had another spinal tap today to try and test for a few things. We won't get the results from that probably for a few days. They have started winging him off the steroids and started him on a medicine called Topomax which is an anti-siezure medicine to see if that will help. He is still having spasms but not frequent at all so that is good. He is starting to act like he did before the steroids where he isn't so fussy all of the time and he is starting to smile and laugh like he used to as well! It's so easy to get him to giggle again! :)

The annual Pentz reunion was held in Downey, ID. at the Downata Hot Springs. With lots and lots......and lots of encouragement both from our families and the hospital staff, Josh and I decided to go and spend the weekend with my family. I think the whole hospital staff knew about the reunion because every doctor, nurse, etc...that came in really encouraged us to go. When we first got to Downey.....I was sad. I didn't like not having my baby with me. It was a little hard filling all the family in on what was going on so Josh did most of the talking about all that. I wished he could have come with us and I wish I didn't have to miss him. I can't believe how much I think about him. All of the time it's him, I really don't think there is room for any other thoughts in there. And I'm ok with that. I don't know what Kaizen's future looks like, I don't know what his lifespan might be. So I am gonna think about him all of the time, and be happy about it because I am. I know I have said it a lot and you know I'm gonna say it a ton more but that baby, that sweet little boy, he has a hold on me. I have so much love for him it's ridiculous! It's like on his way out of me he grabbed a piece of my heart to take with him and keep forever. When we are apart it literally feels like a very very important part of me is gone, missing. I am so thankful for Josh working so hard so that I can be home with him.

So at the reunion my family really tried to help me have fun, laugh just a little. And I did. I still called the hospital a lot to check on that missing part of me and was always reassured that he was doing perfectly fine and that I should get some rest. Josh's mom came and stayed with him for a long while on Saturday and I was thankful for that. While it was hard to be away, I did manage to loose some anxiety, laugh and play....even just a little.

The cabins a couple of us stayed in

swimming area, the heated pool you can't see here, but Kaiz would have loved it.....I just know it.

The volleyball area! And did volleyball we play! It was fun, I wish I could have got some pics 

of the game in action....

pretty good looking couple if I do say so myself

This was funny, I was trying to sneak a picture of him so I turned it towards him

and then looked away and snapped it.....not knowing he was looking at it. Lol

You might of had to be there I guess......

He is holding his hand like that because of the game we were playing...

he was a gnome lol. The game is called Quelf, you should play,

really.....it's hilarious!

We celebrated our 5 year anniversary on Saturday, my mom thought it would be fun if we had a

little picnic of our own....:) It lasted.....hmm... about 5 minutes until we were uncomfortable and

wanting to sit at the table but it was fun while it lasted. Happy 5 years! This life lately has been tough but without this guy in my life....I would falter. He means so much to me and to Kaizen I know. I am thankful for the hard work he does so we can have the best life possible, I am thankful for how

much he has helped me with Kaizen. He helps so much I sometimes don't realize it until

he is gone. We may be going through a hard time in our lives, but I can't help to feel

so incredibly lucky to be dealt this "card of life".

The men and boys of the fam decided to play a game of football with another family that was staying

at the springs as well.......

It looks like they are all just standing around but they weren't.......there was some serious "footballing going on!

They got their very own cheerleaders!

We left on Sunday and went straight to the hospital where I was so excited to see our little bundle doing great. I came in the room to the side where he was looking, when he saw my face he immediately had this great big smile with eyes so wide......he was so happy to see me! And I him. O it brought tears to my eyes......I could just feel right then and there the power of the love we have for eachother!

I would love to end this post with a poem that Josh wrote. I am learning more and more about him as the time goes by......he can use words very well.

The sleepless nights, the rainy days,

Looking out of a window to see the glooming haze.

The feelings of hurt, happiness so far away,

Just taking this day by day.

The thought of wonder, The feeling of hope,

The test of all tests, life is not a joke.

This is so surreal sitting in this hospital room.

We have the strength, the power of prayer,

Looking up wondering is He really there?

I know He is listening, just hoping it's His Will,

To give us............the power to heal.

The best is yet to be

Today we had what is called a care confrence, which is when all or most of the doctors involved with Kaizen come together in the same room and talk about his future, his present, and just try to get everyone on the same page with what is going on with him. There was the nerologist, his main doctor, speech therapist, social workers, a couple people from the rainbow kids team, and the rehab doctor that attented the meeting. Josh and I wrote down a ton of questions we had for them hoping to get some answers.

So far they are thinking the "spasms" are not causing his developmental delay and that whatever is going on with him was a gene mutation that happened at the start of his birth process. They still are not thinking it is cerebal palsy and still have no diagnosis and may never have one. They do not have any idea what his future may hold other than they are pretty confident that he will have some learning disabilities, maybe even speech and physical as well.

This meeting was hard for me, I'm not gonna lie. There was a lot of tears involved, some confidence a little shattered. I'm not perfect......I have my faults, I still break down and wonder why this is happening to my sweet sweet boy sometimes. I feel as though at times I have everything put together, with the attitude of "bring it on", "together we can move mountains" but then there are times that I'm not so confident, not so positive, not so sure. I dont necessarily loose hope entirely, even after today I feel as though the final answer, the final outcome has yet to be discovered and that miracles can happen so watch him shine, not to take away from the doctors who have spent lots and lots of time and money studying what they know and are so good at, but I'm a mom, a christian/mormon, a believer, so the best is yet to be. I really want to try and have the outlook on life as I do right now but at times it gets so tough and my faith gets tested and will continue to be I know.

I know he is in good hands both with the doctors here and myself, Josh and our famiies at home......there is no doubt he is a loved little man! We are hoping to be discharged on Friday so we can make it to the yearly Pentz reunion in Idaho that we all look forward to. As of right now we will be taking him home on a feeding tube, oxygen (again ), and an oxygen monitor. Hopefully we can start getting this little guy to gain some pounds.

With so much time at the hospital, we took turns reading the Ensign both finding stories/talks that helped us......even just a little.

I think it's safe to say that to all you wonderful parents out there with beautiful healthy children........never......never take for granted what you have. No matter how mad they make you, how much they drive you nuts.....remember to be thankful for their health. I am not at all saying I am not thankful for KZ because you have no idea how much we are, but every parent wants their children to be healthy. I know that when Kaizen starts reaching his milestones, they won't just be milestones........they will be monumental achievments to us.

Birthday fun and more

Well time for some updates!!. Kristina, Rylee, my mom, my dad, KZ and I all went to Joe's Crab Shack for my early birthday dinner. I had crab stuffed shrimp and......wait wait I just have to tell you I just typed crap stuffed shrimp haha sorry made me laugh....anyway and I also had some snow crab....it was delish! The night ended in Kaiz having a blow out that I spent a while in the bathroom taking care of and everyone but my mom, KZ and I got sick.... :( dang it. but other than that.....great time.

The car ride there

Aren't we great actresses?

we were bored...

:( he looks soo happy....

I finally got my other half back! He flew in to Salt Lake on Wednesday so I drove to the airport to pick him up. First off, guys that was the first time I have EVER drove to Salt Lake by myself. I have been driving for seven years and that was the first time for me.....something about that spaghetti bowl intimidates me so much that I thought I would be able to go my whole life without ever thinking about driving in it......wrong! On top of that I had to drive Josh's diesel truck which wouldn't have been so bad but I am used to driving my cute little compfortable subaru tribeca. Anywho I got there safe and sound and KZ and I were so happy to see him!

My birthday was the 16th.....the big *2*3*! We celebrated by going Zip-Lining at the Canyons in Park City. O my goodness what a thrill.....overlooking the big valley was definitely exciting!

all geared up

the practice zip line

on our way to the top

overlooking the valley

I am in the process of creating a bucket list....things I want to accomplish and experience before the good Lord decides it's time for me to go home. I plan on sharing it when I have finished the list. But one thing that was on there was to zip line.....so check! Next up.....skydiving.....yikes! We had an early dinner at Red Rock cafe and then went to my moms for some cake and ice cream.....courtesy of Kristina....thanks it was soo good!  Also Kassidy got me a gift from a place called Lush......

I love them.....thanks Kass!

And now for the update on KZ.......we are in the hospital again. We originally came for a check-up on Friday with one of the doctors and when they weighed him he actually weighed like an ounce less than when he was here 2 months ago....which is very odd because he isn't throwing up anymore and he is eating more so she felt that she needed to admit us and figure out what is going on. Also it would be better if he was admitted so the neurologists can look more into his spasms......the spasms have definitely decreased but they are still happening....he has been on the steroids for exactly a month as of yesterday and that is normally how long they leave them on it before they start winging them off it.....so they are going to try that now and if the spasms get worse or still occur they will try another anti-siezure medicine. His EEG's are still not showing siezure activity. They just keep saying he is so hard to understand......things that are happening to him they have never seen before.....this litlle boy has even the smartest doctors puzzled. They told us they aren't thinking it is looking like cerebal palsy so much anymore.....I mean he isn't doing the same things or showing the same signs as a typical cerebal palsy patient so......we are here doing a ton more tests and try to get him to gain weight. He is almost 10 months old and only weighs about 15 pounds.

We may be here for a few days.....could be 2 weeks....it all depends on him. So far they have done an x-ray on his tummy and his back. On his tummy to see if he is constipated which the results say he is but not much. And the back x-ray told us he has a little bit of scoleosis but not much to be concerned with. He has had his blood drawn a couple times. He has to be on a 1/4 liter of oxygen when he sleeps becuase his oxygen level goes down a bit. They are planning on doing a swallow study on monday which what they do is have him drink some stuff with dye in it while being x-rayed to see where his milk is going and if he aspirates it at all....he still has a lot of reflux so they think maybe he is having trouble getting the milk down the right pipe which could be the reason he isn't gaining weight.

We are really hoping to get more answers this time......and hoping he can start eating better and gaining weight so that he can start progressing and reaching his milestones. I have a good feeling for this time's visit........I am confident we will be able to figure him out.... :)

I will keep updating.....:)

Some random pictures......

eating at Village Inn

They have to eat too.....so thankful for their services!

He is my life.....nothing less!

I just love this boy.

More summer fun and updates

I finally have time for the blog!! I am sorry I have been slacking. We are back in Utah!......well Kaizen and I are now anyway. Josh left this morning with his brother and sister-in-law heading back to Sidney! We are gonna miss him, even if he is only going to be gone for 12 days! He is flying back on the 15th because we have an appointment for Kaiz and then we have a family reunion the 24th through the 26th in Idaho. We just thought it would be easier for me and KZ to stay here rather than traveling back and forth. He only left this morning and I am missing him so much! That guy has some sort of hold on my heart......and when he is gone it really feels like the best part of me is missing! It used to be that we were apart for weeks sometimes months at a time. He would be working in Montana and I would be working in Wyoming. I could not stand being away from him.....I loathed our goodbye's.....cried everytime. That's why I moved to Montana so we could be together......I got really sick of crying myself to sleep everynight! Those amazing people who have to be away from their husbands or wives for years truly astonish me. How much love they must have for each other......it's confounding!  I am already sooo excited for the 15th!

While we were down here we got to do a lot of fun stuff! We went to Lagoon this last Monday and enjoyed the Laguna Beach as well as the rides. I didn't get to take any pictures but the highlight and sadness of the day was when Josh lost his phone on the Wicked. Turns out it flew out of his pocket and hit the ground.....let's just say an iphone and the ground......don't mix very well. The glass broke and you couldn't see a thing......you could here it ring but you just couldn't see anything and you didn't dare do anything as you might cut your finger. But thanks to insurance....he got a brand new one! Thank goodness because the phone is our only means of communication now!!

Wednesday we rented some wave runners and took them out on the Rockport Lake. We rode them all day and had so much fun! Again no pictures :( but Josh's brother dropped his phone in the water, and Josh and I both lost our expensive sunglasses! Dang it! I love driving a wave runner! It's so thrilling! Some call me crazy.......I call me fun! It truly was a blast! We need to get some of them!!!

Tuesday we went to the Dr. for KZ's check-up since he started the steroids. The steroids seem to be helping at night. He no longer wakes up in the night having spasms but still has a few clusters upon waking but not as severe as they used to be......he also has some in the day time but really not that much. The Dr. said he would more like to see them just stop but them gradually going away is a plus as well. He decided to increase his morning dose from 5ml to 10ml and keep the night one 10ml. We have been doing that for three mornings so far and it seems to be working a little. He doesn't seem to have many spasms in the day time. The doc told us to try it for a week and if it doesn't stop them completely we will have to try a different anti-siezure medicine so we will see how he is doing in a few more days.
He has been really fussy lately.....it seems like he is having some sort of reflux or something because he arches back like something is hurting him and just screams.....especially when he is feeding. I get discouraged sometimes. It is so incredibly hard watching your child go through something that you yourself cannot fix. They told us that the steroids may make him fussy and irritable but it breaks my heart when he cries and I have no idea why.....no idea what is going on in his little body to make it stop. All of the pain I have ever felt......my appendectomy.....my c-section being cut open while not numb and being awake and feeling everything.......is nothing to the pain I feel watching my son go through what he is going through. I am glad that the spasms are not as frequent but I guess I didn't prepare myself for the fussiness like I thought I did. This is probably normal though.....I mean a lot of babies are fussy so I'm sure a lot of mom's are used to it but it's so different for me......for Kaizen. But we are hanging in there! We will get through this! I just know it!

The doctor wants to have a nother check-up in about a week......hopefully the steroids work so he doesn't have to switch to another medicine but we will see what happens. The Lord has his ways of making miracles happen!

Speaking of miracles..........I gotta tell you all how thankful I am to have the power of the priesthood in my family. When we got back from the Wednesday wave runner day mentioned earlier, my arms were so so sore. They ached so bad.....probably because of when I got flown from my wave runner and trying to hold on.....I'm pretty sure it pulled every muscle in my arms. It didn't hurt at the time but o boy did I feel it later......I literally could not lift anything. I really can't explain the pain but I was balling and just wanted to die for a split second. I layed on the bed and my sweet husband put ice packs on my arms and offered to give me a blessing. I don't know why but when I am in pain or feeling discouraged I really don't even think about asking for a blessing.....I really don't know why I don't....I mean the Lord did put on Earth to be used. Anyway when Josh offered I said yes yes please. I was crying hysterically and then he layed his hands upon my head and I instantly felt a calmness come over me.....I felt the spirit and felt like the Lords hands were upon my head. When he was finished I slowly drifted to sleep and when I awoke I had not pain whatsoever in my arms.....like it never happened! I need to learn to ask for blessings more often, whether I am hurting physically or feeling discouraged and sad. I am so thankful that I married someone who has the same beliefs as me and who has so much spirit in him to know what to do when I'm hurting.

Josh gave me my birthday present a couple weeks early....he got me a camera! A smaller one so I can actually have it all of the time and have no excuse not to take pictures!.......

 It looks big in the pics but it is smaller and has an awesome zoom! Thanks honey! I love it!

So here are some pictures I did manage to take.....not with the new camera but those will come soon enough!

potty break for charles on the way back to Utah

spoiled dog! he hates jumping in the truck!

at the hospital for his check-up

 outside after eating at the el mattador restaurant

Happy Weekend!!! :)