Blake had a scope done yesterday. Anything where Blake has to be put under is very scary for us. Blake likes to stop breathing while under, and bronchospasm too.
The week started off with Tayla catching lice again from school...twice in the last 3 weeks. The school knows there's a big problem yet they laugh it off (literally laughed when I told them of my annoyance the 2nd time around) she was the only one effected but there is still laundry to be washed and folded. On Mon, i was an emotional wreck. I cried most of the day as i picked nits out of Taylas hair. Ok, we BOTH cried. Blakes procedure was Fri and I was overwhelmed. Things just werent going as planned. I was scared of losing Blake and the rest of my life caused my fears to worsen and nightmares to happen. But we finally made it to friday! Blake chose his outfit. I loved it!
We got up before 5, took the girls to a sitter, and headed to Denver. We got in and got Blake checked in, and then waited.
This cute little boy stole my heart again. He must have knew my heart needed to hear it, because ever 2 min he would say, "i love you mom" several times in a row.
Then he professed his undying love to his girlfriend
Then we gave him versed and he got loopy and HILARIOUS!
So, we dont really know what is causing Blake's motility /digestive issues. We thought it might be a flare up with his EoE. To the naked eye, everything looked great! We will have to wait until we get the biopsies back to see what to do and where to go from here.
Last year one a rough year. So busy with 2 medical kids and procedures and surgeries, dr appts and therapies non stop. Thanksgiving was hard not being with family....we felt jumbled this year and that was a weird feeling we had never felt before. Christmas was hard. We didnt really buy our kids gifts, other people did. We have been trying to play catch up ever since shaun lost his job in May. He has had jobs since, but none that pay even close to what he was making before. Right before thanksgiving I opened my door to everything I needed to make Thanksgiving dinner. I cried, and prayed that whoever did this would know the magnitude of impact they had just had on our family. But more than that, I prayed for them to be blessed....to have what they needed in that very moment. I still don't know who it was, and I'm ok with that, but I promise it was not by mistake that thanksgiving dinner made it to our doorstep the way it did. Now fast forward to Christmas. Payzlee had been sick non stop for 2 months. I was tired, I was worn down, and more than anything I felt forgotten. I felt alone with all the trials going on. I prayed to see tender mercies. I prayed daily for a week for them, just to know someone cared. I really thought I was alone and there was no way Heavenly Father even knew my name. About a week later I had a crazy stressful day. It was another week full of dr appts and a sick baby. I was sitting on the floor trying to organize and fold laundry when there was a knock on my door. It was late, 8 ish ...and shaun wasn't home. I was skeptical to answer. I heard car doors slam and people running. I opened my door to find a HUGE basket full of everything I would need for Christmas dinner AND MORE. I went to lift the basket and almost fell over. That thing was heavy! My first reaction was to find out who it was, but as I went to go outside, the still small voice told me to leave it be....they needed to perform a random act of kindness without being outted, and I needed to be shown that I hadnt been forgotten. No one knew my heart that week. It was a tired mom heart. It was me, crying in the shower from exhaustion. No one knew yet here was a tender mercy. I brought the basket inside and sobbed. As was the thanksgiving day basket, almost everything in it was Blake safe. Thats not by chance, they knew...it was someone who knew us or had the means to ask someone who did. That in and of itself was something my heart needed to see. Things got even better a couple days later, a friend came over, handed me an envelope and left. It was random, and kind of weird, but I also didnt think anything of it, until i opened it to find a handful of gift cards to the grocery store and gas station. I instantly texted her through tears. She said her work had wanted to help someone who needed it this year and she felt impressed to give them our name. I could hear the voice screaming in my ear, "see, you haven't been forgotten". I was just a tired mom who felt so much desperation and failure, and aloneness. I was a mom secretly crying in the shower so I could put on a brave face for my kids and friends. I knew that Heavenly Father would show me what I needed to see and he did. But I wonder if I hadnt been looking if I would have seen? Yes i would have seen food on my door step, but would I have seen that it was a tender mercy meant for me? Would I have seen that most everything was blake safe? Would I have known that this is what I prayed for. Many MANY other tender mercies happened right before Christmas. Many teeny tiny things of friends randomly dropping things off...Erin seriously ♡♡♡♡♡....... or taking Payz because they knew I needed a break, or coming to visit, or allowing me to but in, and take over their nights...even driving them to their games on the weekends. Yes, driving a friend to a game has become one of my greatest tender mercies! I need her sweet spirit in my life. She impacts me and shows me more of an example of who I should be, when I am around her. She is my soul sister and provides me more tender mercies then I have ever seen.
When I look around me, I only see tender mercies. T
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.
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On a side note....holy hotness ♡♡♡♡
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.
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!
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.