October

It's been quite a while since I have written. Our summer was a struggle. We spent 2 weeks living in a hotel while waiting for a house. We finally got in to one and have somewhat settled down. Shaun has been working at a farm driving harvest for them. He gets about 1 maybe 2 days off a month. It has been so hard on the kids and me not seeing daddy. Payzlee and Blake especially have had a really hard time not seeing him. But we are grateful for a job! Payzlee has been able to start drinking liquids as long as she has thickened liquid so thats awesome! Today Shaun got the whole weekend off! He hasn't had a weekend off in a few months! I went to zumba this morning and then decided we needed to go hiking! So I called up my friend and we loaded the kids up and went to Devil's Backbone and went up key hole trail. I forget how hard it is to be "normal" and do normal family things. The trail wasnt super long. It was a bit challenging but mostly because there were rocks and uneven surfaces. Blake did pretty good half of the way up. He needed some breaks and was a bit tired. I carried him a little up to the top and we took some pictures! This one kills me! Blue turned as we went to take the picture so blake is hugging blues rearend! On the way back I carried blake 95% of the way. It was a mile or so long. It gave me time to think about how grateful I am that he tries. He has chronic fatigue yet he still pushed and tried and did awesome. It was challenging carrying 30 lbs down the trail but I am so grateful to be his mom! I wish things were different, that he could run and jump and play on trails like his friend was. I have to keep remembering this is our new normal. Our new normal will not ever be different, but I have to try...i have to try to do something normal sometimes, even if that means I will be carrying 30 lbs in my arms, on my back, and on my shoulders for an hour or two or three while he sleeps or is too tired to continue on. I feel so humbled by carrying him. It's what the Savior does for us when we stumble and fall and can't continue on. Its such a selfless act of love that may leave our neck and backs sore and hurting, but its done 100% out of love. href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSZYPtc7YTBkCfeXEB0RKDjBgXMf9dBIl5Z0WxBvDE5HvNVTP2leunUDlaeMsas1WLhm2C_Rm0o6QQHwGrqJ5K8Yc-MgbUiRwqwTQfVw8mj9H8grJkRNQjuM_HRGFjF7HaJRpHnW_oHRjs/s1600/20151017_122155.jpg" imageanchor="1" > On a side note....holy hotness ♡♡♡♡

Too tired

I haven't updated the blog in a long time...on purpose. In the last 2 months we have gotten no answers with Payzlee yet her legs are getting worse. What we did find out, is that she does not have bowed legs. Her bones are completely straight. We did a brain and spinal MRI only to find out that neither revealed anything at all, or so we thought. Our pediatrician said the spinal report was not 100% normal while the orthopedic dr said that because the report said normal it was normal but 1 thing may be concerning and her neuro friend will look at it. Yet 6 weeks later, we still can't get neuro or ortho to update us AND our pediatrician said that the imaging is actually missing 3 ish inches of her neck and the back of her skull. ..the exact part they need to check if she has Chiari Malformation. We go to see a Neurosurgeon on Friday where we will more than likely have to repeat her sedated scans. This frustrates me. No this INFURIATES me. I want to know why her legs are bending and she can't walk without falling and why she cries out in pain and holds her legs. I am so exhausted emotionally and mentally from Payzlee and Blakes medical. To top it off, Taylas anxiety has been getting worse. She did so good for so long and is now falling apart left and right. We have her in seeing a dr but it is a lot. Mylee has had some side effects from her spinal meningitis as a baby and we are trying to help her before school starts. We also are moving. We have been looking for houses for a month now and nothing. I dont know why the right house hasn't come up but it hasn't. We actually did find a house, and then it fell through. I am trying my hardest to get packed, but it is SO HARD to pack with a husband who is never home and continual dr appts. It can be overwhelming. Packing is a private thing, to me. I would never ask a stranger or people I dont know very well to come help me, nor will I let them if they ask me. That's a job for close friends and certain family members. Its just how I feel. Man im going off rude! I surely dont mean it that way. Today I am tired of being emotionally tired. I want a place to live before we move out next Tuesday. I want some stability for my kids. I want to know I'm not failing, because I feel like failure today. I feel like things will never ever let up and they will only ever be hard. I wonder what I did to piss God off this much. I want to scream and shout and cry. I want to sit and cry. I like to sit back and look at things and I often find myself thinking, life can not be this hard can it? Well, i am proof that it is. Life is hard. It is hard to be human. It is hard to hide your feelings (i do this 24/7) it's hard to look someone straight in the eye and lie about how great things are and how great you're doing. It's hard to ask for help. I never do it. Sorry this blog is a vent. Its how I am lately. I'm am too tired and I just want to explode. I will try and update about what happens in 2 days for Payzlees appointment.

My Myter box!

Mylee has always been close to the Spirit. I knew it when she was a baby. Every time I picked her up she radiated Heaven. I can't explain it, I just knew she was such a special little girl. Today I got asked if I would sub her primary class. It had been a super rough morning with Blake and his motility and sensory and I was actually thinking I wasn't going to go to church. Shaun was on call and already out in the field so I figured I could stay home and send the older girls with someone else to church. I wanted to go to church but I figured it would be more of a fight with Blake TO GO than to stay home. And then I got the message. After thinking for a min, I decided I could make it work. Blake and Payzlee could just come to class with me and it would all work out fine. Payzlee won't stay in nursery unless Shaun or I are in there. About an hour before we had to leave, Shaun comes home. We went to church AND I had help!!! SCORE!!! After Sacrament meeting, I pawned a very tired Payzlee off on Shaun and headed to primary with a cranky 3 year old. He was horrid. I lost my cool and left him with daddy as well. While I was sitting in primary, I decided to silently watch Mylee. The pianist was playing the song, Did You Think To Pray along with a few other primary songs. They told the kids to hum the song if they knew it instead of talking. Mylee sang the words. She was off key and slower than the tempo but the Spirit was SO STRONG with her singing. Mylee loves to sing, she always has! I love it. She has been criticized before by countless people but I have found that it is one of Mylee's greatest gifts. If you just sit and listen to her sing, you can feel the Spirit radiate off of her and, I, have been able to see a small glimpse into just how special of a spirit Mylee really is. Every time I sub for her class she gets super clingy. She doesn't like to participate and she hangs on me. I tried to show affection today even though it was hard with her hanging on me. I hugged her several times and encouraged her to participate. During singing time, I looked over and Mylee was singing each word to every song. She knows her primary songs and she LOVES primary. She has such an amazing teacher as well! Around the time that Mylee turned 3, when we would go to church, instead of singing the hymns, she would sing whatever song she could think of at that moment. I told her to sing the primary songs. I told her it didn't matter if it was the song we were singing as long as it was a primary song. I remember sitting in Sacrament meeting and singing a song and looking over at Mylee who would stand on the bench and sing I Am a Child of God as loud as she possibly could because it was the only primary song she knew all of the words to. My heart is full with Mylee in my life. She is so beautiful and so smart. She is funny and she teaches my heart to have patience. She also teaches me that it is ok to cry over the small and stupid stuff. My life would not be nearly as blessed and this wonderful had Mylee died when she was a baby. I am so grateful for this amazing girl. She is going to do great things in her life and she is going to bring many people to the gospel. She tries to share her testimony every chance she can with anyone willing to listen. She is such a great example to me!

Tayla Renee'

I need to rave on this girl for a bit. A month or so ago, I was having a super rushed and emotional day. I had 3 dr appts at the hospital and all 4 kids and I was running late and NOTHING was going right. It actually may have been a Monday, I can't remember exactly. It felt like a Monday so does it really matter if it was or wasn't LOL! I went to one appt for Mylee and while I was in the appointment, Payzlee had a dirty diaper and they called me but my phone never rang. They needed me down there ASAP to change her but I couldn't leave. The nurse had just started skin prick testing on Mylee and we had to wait for 15 min. I wasn't concerned about Payzlee, she would be ok for the rest of the 10 min it would take to finish the testing. The problem was, they called twice without my phone ringing and they didn't leave a phone number. I had the nurse try and find the number and eventually she did. That being said I RUSHED out of the appointment without asking for all of the information I needed, and literally RAN across the hospital to the daycare to change Payzlee. The daycare is run by volunteers and closes from 12-1 so they can take lunch. The gal LOVES my kids so she didnt mind that I was almost 10 min late. oopps!! Our next appointment wasn't til 1 which was perfect timing for us to start lunch. Before we left for the day, I had asked Tayla to make some sandwiches for everyone. Food is expensive to buy and I just didn't feel like spending the money on some unnecessary. So Tayla had made everyone sandwhiches and packaged them up and put them in our big bag. I didn't look at them, she just told me what she had made. I decided to let everyone get a bag of chips and I was going to slowly suck down a big Dr. Pepper as I could already feel my head pounding and tears hitting my eyes. A Dr. Pepper was DEFINITELY going to cure this. (ha ha right?!) So we fought the insane crowd in the cafeteria, stood in line for what felt like FOREVER, and then FINALLY headed off to find a some what quiet place to eat. I found a few sofa chairs with a small round table in the center of them all. It was next to the windows and the sunshine was pouring in. I actually thought it was my tender mercy for the day. It was the PERFECT spot and only 2 people were within 20 feet of us. We walked over to the area, I sat my drink and our lunches on the table, and started to unpack Payzlee from the wagon. As I did, Blake, who had been jumping and bouncing and acting like a regular 3 year old who doesn't want to listen, hit the edge of the small round table and dumped the whole thing. My pop went everywhere. I ran to get napkins. I sopped up what I could and ran to get more. At this point, I was so frustrated with the day that I could feel the tears stinging my eyes, But I told myself to suck it up, that I could cry on the long drive home from the hospital. most of my beloved pop was on the floor. At this point I didn't feel much like eating, but I knew I hadn't eaten breakfast and the 3 hr long appointment I had next was VERY important and I needed to not be dizzy during it and I needed to be able to think clearly and be able to comprehend and filter through everything being said and asked of me. I grabbed my sandwich and opened it up only to find this.... At this point I lost it. I sobbed. I didn't know what to do but hug Tayla. She had written every single person a note saying the same thing but with their name in it. This spot wasn't my tender mercy TAYLA was my tender mercy. I don't know how she knew but she did. She knew I needed to read these sweet words and she knew that I needed to "feel" loved. She has such a tremendously big heart and she listens to the Spirit often. The rest of the day didn't go great, but I felt that peace in my heart and it felt easier as I walked in 10 min late to our appointment (the effects of me being late for the volunteers lunch and then needing to drop my kids off with them again for the next appt) Tayla has a heart of gold. She is much smarter for her age and she is way too mature for her age. She picks up on things so quickly. She asked if she could learn how to hook and unhook Blake and Payzlee's extensions on the gtube. She picked it up in ONE time. I tell all of my sitters to talk to her if they get stuck. I didn't teach her any of the troubleshooting stuff, she heard the alarm and decided to fix it herself. She is just like her daddy in that area. I can't begin to express how proud I am of her. Words will never fully explain just how proud of her I am and how much I love her. Today while sitting in primary, Tayla slipped me this note.

Who doesn't like some s'mores?!

So I decided we needed to do some s'mores yesterday! The kids wanted these JUMBO marshmallows and of course I couldn't say no. Let them be little right?!! ok so it was rainy and Shaun was working and the bbq is still in the garage, so I decided to just bake these s'mores! They started like this Then they toasted and looked like this This was the ending result I got some of the CUTEST pictures of my kids! I LOVE these 4 angels. They mean everything to me.My favorite shot is the one I got of Payzlee trying to lick the mellows off her cheek!!!

Update on Miss P and Blakster too

So, a few days after I posted about surgery, one of our doctor's called to talk to me about Payzlee and the results of the lung cell test they had done during surgery. Payzlee's lungs showed influenza. Not the kind they would treat but it did show she was and had been sick. We knew that already but it sucks hearing why. Also, Payzlee was diagnosed with something called trachiomalacia. It's basically a floppy esophagus. So when we are first born, this is how our esophagus is. It's not hard like an adult. As your body grows, it gets hard and strengthens. When it's floppy, it tends to collapse and some what close off when you cough. When it is strong and hard, and you get sick, when you cough, it vibrates into your lungs and that is how you are able to cough up stuff out of your lungs. With Payzlee, her's collapses 50% of the way and does not create the vibrating therefore causing her to be sick for a long long time and to not be able to get any of that out of her lungs. It's super hard to watch Payzlee STILL be sick. In January she had croupe a week before her ng tube was placed. She has been sick continually since. It's frustrating and hard but it is what it is. Also, I don't remember if I posted the date before, but she has her brain MRI on May 7th. We will take all the thoughts and prayers we can get! Blake went in on Fri to have a gastric emptying scan done. They inserted formula and dye into his gtube to see how quickly it moves through in digestion. at least once a month, Blake stops being able to tolerate 90% of his day feeds and 100% of his night feeds. He throws up for a week straight and has no energy and is super cranky and testy. He is up most of the night throwing up and crying. It breaks my heart. We haven't gotten the results of this test. We will in the next few days though and I will update then. After they inserted the mixture into Blake's gtube, they took an xray of his belly and then every 15 min for an hour they took a picture of his belly again. Blake did AMAZING. He was so good and so calm and HAPPY! Here are some pictures of him during the scans.

Payzlee

Payzlee had her surgery last week. Shaun dropped the kids off with an angel in our ward and went to work while I went up to the hospital. I had to leave at 4am. The drive feels 10x longer when you are going to the hospital for surgery. I found myself wondering why the sun couldn't come up while I was driving. Everyone knows that the cure to a bad night is the sunrise....only my day was just beginning and I longed to have the sun up and not be headed to the hospital. Payzlee had been super sick 2 weeks prior and even days leading up to surgery. She had ear infections and an upper respiratory infection. Everyone got a simple short cold except Payzlee. Because she has the lungs of an aspirator, she got sick in her lungs and stayed sick for a long time. She had to be on 2 different antibiotics prior to surgery. We decided to do ear tubes as well as the bronchoscopy and decided against doing a gi scope as she had just had one done in sept and the doctors didn't feel it would have different results. The picture is random but I thought I'd break up this post a bit with some pictures as it is hard for me to write and could be hard to read. So we went back at 6:00 ish and got Payzlee prepped and ready. She was cranky and tired. They took vitals and we got her in her gown. I talked to all of the drs, several nurses, and the anesthesiologist. I signed my life away about a million times and fought off the tears harder than I ever have before. Surgery on your kid is so hard to do. Surgery without your husband there is even harder. I didn't want to be alone. I wanted to have Shaun sitting there holding my hand. But because of various reasons with his job and boss, that just wasn't an option. A text is just not the same as the words said while sitting next to me holding my hand. Because Payzlee aspirates and does not have healthy lungs, we are at risk every time we put her under; a greater risk than a kid without medical issues going under. They explained all of this to me the day before and the day of surgery. I knew the risks and I didn't want to sign those papers but I knew I had to. When the anesthesiologist came in right before surgery, she asked me if I understood the risks. She talked to me about her being at a greater risk for bad things happening. I understood. She told me that she was at an even greater risk because she had been sick. The only thing is, with her continually getting sick, no time would be a better time. We needed to figure out why she is aspirating now. I knew the risks. I had heard them multiple times. But something about hearing how she could have to be in the ICU intubated and have a machine breathe for her, about 10 min before they took her back to surgery, it hit me like a ton of bricks in my gut. It literally took the breath away from me and I pretty much held my breath until the anesthesiologist left the room. I remember it being so hard to take a full breath for hours after I heard those words. It was now time for Payzlee to go back to surgery. As long as it is an option, I will always go back with my sweet babies, place them on the operating table, hold their hand, stroke their hair, and kiss them as they fall asleep. Always. I will also always remember the fear in their eyes and the look on their face as they sob in fear. But it is worth that tiny bad moment in case anything ever happens to them; just to say I was the last person they saw! When I left the operating room, I was taken to a special room off the waiting room. I was told I could get something to eat but had to go back to that room to wait; they needed me there during surgery. It was only me in a room with a couch, a table, and some chairs. It wasn't very big but it felt huge. I went through the motions of eating a small thing for breakfast but I could feel the panic rising and I felt like throwing up. I still couldn't take a full breath of air. I prayed. I didn't know what else to do so I prayed. That's all I could do. My mom really believes those from beyond the veil were there sitting by me but I couldn't feel them. I felt all alone. Finally after an hour or so, part of the team came and talked to me. They told me Payzlee's lungs are still swollen and inflamed but there wasn't infection which is GREAT news. We have to give her an inhaler every day to help with that. She is still aspirating even though we don't give her fluid by mouth anymore. She could be aspirating on her spit though we aren't 100% sure. I know it happens because I see her choke on her spit sometimes and you can tell she has just aspirated. The ENT came in about 20 min later. Tubes were placed fine and he was glad they did them because she had a lot of scar tissue in her ears. Now for the hard part. They found NOTHING wrong with her anatomy. Our next step is to do a brain MRI. A brain MRI will tell us if there is anything wrong inside her head to be causing this. It can be a couple of different things like Chiari Malformation and a few I don't remember. But the doctor told me that for some reason which they don't fully understand, aspirating and neurological issues can go hand in hand and can be quite common. In 2 weeks Payzlee will go under (yes it has to be sedated) for a brain MRI. I feel frustrated. Either we have no idea why she aspirates and will never know why, OR something is wrong in her brain. This just seems SO UNFAIR to me. This beautiful little baby may have something wrong in her brain. Yep it's a lot to take and let sink in. At times like these, I am often reminded by the spirit that it's going to be ok but also to remember that these cute little spirits of ours are on loan to us. They have a mission on this Earth and they will fulfill it in the amount of time it takes to complete that. I am on loan to my family as well. We never know how long any of us will be on this Earth. We can't remember what all our mission entails but I do know how hard each of us fought to come here to this Earth. I am so very grateful for the chance to be Tayla, Mylee, Blake, and Payzlee's mom. Because of our struggles and the simple reminders I get, I try to live each life to it's fullest. I try to rediscover things with my kids and I try to say sorry often. I try to say I love you every chance I can and hug them often. Although the thought of having Payzlees diagnosis be something in her brain terrifies me beyond measure, I am trying to focus on her and the here and now. It will all be ok. I have been holding on tightly to one of my favorite quotes lately.....COME WHAT MAY AND LOVE IT.

Making Bird Feeders (picture overload)

Shaun's parents have decided to do some activities, from a distance, with all of their grandkids. Our first activity was making bird feeders. We had to take pinecones, spread peanut butter all over them, and then roll them in bird seed. Here are a few pictures before we started! The kids thought this was SO FUN. Blake especially. He didn't understand that he needed to spread peanut butter around the whole entire pine cone. He thought he could put a huge huge glob of peanut butter in one spot and call it good!!! He LOVED rolling it into the seeds too. That was his FAVORITE part! Here's some pictures of the girls and Blake working on their feeders and then holding the done product up So then, because I am supposed to document with pictures, this whole thing, I thought I should let Payzlee have at it. I was scared, not gonna lie, peanut butter and bird seed. I could see the catastrophe in my head. So I snapped a few pictures super fast in between helping her. (Shaun conveniently got called out as we sat down to do this)So I help her spread the peanut butter. Then I helped her roll it in the bird seed. She wanted to play in it. And then it happened. As tried to get Payzlee to show me her feeder by holding it up. She looked at it, like SERIOUSLY looked at. And then as I snapped a few pictures she took a bite of it. Not just a kid bite but THE BIGGEST bite I have ever seen her take with anything ever. All I could do was laugh and snap pictures. I thought for sure she would spit it out since there was seeds on it but to my surprise she looked at me, chewed, and swallowed. She did it a second time too as I stood there amazed at what had just happened. Here's a few more of all the kids!