2 more years....

It's been too long since I've blogged. I'm sad to think of all the memories that I could have had written out and documented.  But here's to a fresh start.  I know these posts will be more valuable than just facebook or Instagram. My thoughts are jumbled and may not make sense,  but they are my thoughts and our family memories.

I don't even know where to begin. Maybe I'll start with our angel baby girl. She's such a joy in our lives.  She's sassy and independent all while still needing her mommy and daddy.  Mostly mommy though. I'm okay with it though. We moved to Roseburg, Oregon April 2016 and we pretty much love it here.  Of course there are things people dislike about everywhere they live,  but it's good for our family.  Ben just got put in as the elders quorum president, and I am the Nursery leader. I was the Wolf leader in scouts,  but It is such an involved calling that I had to ask to be released .I felt sick a lot because it was at the end of the day that I had no Energy to give to the calling. It wasn't fair to me or the scouts. They called me to nursery and I was hesitant but I willingly accepted. It's been a difficult calling but I know have been blessed and I get to spend time with my sweet baby.

As for My health, it's really difficult to put into words how I'm doing. Every day is a huge struggle for me. Most days are just getting by. I am in pain every single day-and there is not a day that goes by that I don't have some sort of a headache. The things that were a shock to me 4 and a 1/2 years ago, are now a normal part of my every day. The headaches, the pain, the Insomnia, The tingling, the numbness, the pain in my head and neck, the pressure in my head my eyes, dizziness,  throbbing pain,  climsiness, forgetfulness, and more.  No one should have to call this their normal.  Weight wise,  I am at the heaviest I have ever been.  I nursed Eliana full time until she was 21 months old.  I packed on the pounds when I nurse. I get so frustrated because I can't exercise like others can. I can't lose weight like others can.  I tried running yesterday on a trail to a gorgeous waterfall.  What happens to normal people....a feeling of invigoration. What happens to me....I am immediately sick.  I'm out for days.  I'm so blessed with kids who are self sufficient.  They help themselves.  When I'm sick in bed,  they just do whatever they need to.  Even the baby.... well she is 2 now so I guess I should call her a toddler.  I have all of our snacks low enough that she can bring the clear bin with her snack of choice to me and I'll open it. Then we cuddle.  I do get lots of cuddle time and I could tell you what happens in any kids show.  I'm still trying to figure my life out and to be thankful for everything that I have.  It's just so difficult when pain is a huge part of life.  I haven't even begun to look for a doctor here in Oregon because I don't want to try to explain everything to another person who's not going to understand, yet they are supposed to help.  Meh!!

Another event recently happened that has impacted my life greatly.  My dear,  sweet grandpa Todd passed away about a month ago. I am going to do a post all about our trip and memories and photos. There are things I don't want to forget. Today I called my grandma to say hi and to check on her.  That's something I've done since I left home. I told her that Braeden got some scout awards and that I'm sure grandpa would have loved to hear about them and the fish we ate the other day.  It still doesn't seem real.  I almost asked to talk to him,  but then I remembered. Tears fill my eyes as I remember him.  He was and is a special part of me.

I'll stop there for this post,  but I'll add more from here about our recent events.

Blogging, Baby E

I have decided to start blogging again, because a year and a half since my last post is pretty ridiculous. I rarely have time to sit down and write in a journal, so I might as well sit down and type. I was going through my blog the yesterday and there are so many memories that my mind has forgotten. Without those pictures and videos, and words...I would have forgotten. It makes me really sad that I have lost memories from the last year and a half, but I am not going to let that happen again.

I am 9 months pregnant at this very moment. I have four days left until my baby girl comes into the world. It has been a VERY long and painful pregnancy. Not many people understand. With my Chiari, everything has been so much harder and more painful. Headaches have stayed the same, but I have had pain in everywhere else in my body. It has been really hard to function, and sleeping has been non-existent for months because of my lower body pains and pressures. My right leg has been severely swollen for months which makes it hard to walk and sleep. There are days, that I have to take it really really easy...and not to mention I have to watch for blood clots.

I have only gained 15 pounds more that my normal starting weight this pregnancy. I was really really sick for the first few months and with this being a girl, I guess I just haven't gained as much. That will be nice for after baby E is born.

I have had to go to soooo...many appointments this pregnancy and I am considered high risk. We didn't even know if I was going to be able to get pregnant, so baby E is definitely a miracle. I have had to see my neurologist, high risk maternal fetal medicine and a regular OB. Which means at least double appointments. It has been really neat to see this princess every month on an ultrasound and see how much she grows each month. It truly is a miracle. At my last ultrasound two weeks ago, she was weighing in at 6 pounds 12 ounces give or take a pound. She is going to be a normal weight baby. That is a big thing for me since this pregnancy has been so hard.

Another way this pregnancy is different is the delivery method. I am not having a normal vaginal delivery. There will be no waiting until contractions come or my water breaks. I am having a scheduled c-section under general anesthesia. I have tried to keep my feelings about this under wraps, but maybe someday my baby girl will read this and want to know how I was feeling.

I go in Friday morning at 4:45 for my appointment at 5am. I will be admitted and my surgery will probably be at 7. I will be prepped with all of the IV goodies and a catheter and all of that good stuff. In the surgery room, I will be given general anesthesia, and be intubated. I think  that is the scariest and saddest part for me. I will not be able to see my sweet baby girl be born, or get to hold her right away. People keep telling me it will be okay and that I will get to see her, but that doesn't make it any better. I am so happy that Ben will be there to love on her first and see her. When I am coming out of the anesthesia, Ben will be there with my sweet baby girl and that will help some. I cannot have a spinal or epidural because of all of the complications with my chiari and the cerebral spinal fluid and the inter-cranial pressures. They don't want to put anything into my back and frankly, I don't want them to. I am not supposed to push for the same reasons. A c-section will be very different. I haven't been able to walk without pain for a long time, so many I will have my c-section and feel so much better. It will definitely not be the easy way out though.

I am so thankful that I get to have one more special angel in our family. We will not be able to do this again. That has also been another thing that has been hard this time around. This is my last baby. Everything I am doing will be my last. My last newborn baby. Those moments at the beginning that seem so fly by so fast. I am going to soak them in, breastfeed as long as I can...(that is, if the surgery doesn't mess all that up), love and snuggle her as long as I can. I have definitely spoiled her. Not just because she is a girl and girls are a lot of fun to shop for, but also because she is my last sweet miracle. Adoption my be an option later down the road. We will see. We have four children in our eternal family and I am so happy about that. I love my boys, I can't wait to see my girl, and our sweet angel watching over us from above.

Baby E has been a mover from the very beginning. She is constantly moving. She definitely lets me know she is there. With the boys, they kicked...HARD! With her, she is just a gentle constant mover. I love feeling her in my belly, and I am trying to enjoy it as long as I can. Capturing the moments in my mind and heart of what it feels like to have a sweet baby inside of my belly. I am so grateful of the blessing that Heavenly Father gave me to be a mother. To be able to carry these sweet babies of His. It is a blessing I don't take for granted. Thank you Heavenly Father for blessing me so much!

My sweet little Emerson

He talks, he runs, he sasses back, he throws fits, he loves, he kisses, he squeezes, he jumps, plays, and is such a sweet boy. I cannot get enough of him. He loves his dada, and his brother Braeden. He asks for movies and food...although most of the time he gets in the fridge himself.

That face!!!!

First Day of Pre-K

Photos from Chiari Walk 2013

I am Alive...I Promise

Long time no blog. I am alive, I promise. In the last 6 months, things have been INSANE!!!! Ben got up in as Elder's Quorum President, I got put in as the Second counselor in primary, and it was summer. Summer was crazy busy, and then Braeden started school. He started pre-k this year. He loves it. He wakes up everyday at 5:30...an hour too early and gets ready. He loves to learn and this is where he should be. We get up and walk or bike him to school and back.

Summer: We moved to a new house the first of June. It is amazing and awesome. I feel so much better here. I can finally breathe a sigh of safe relief. We have a pool just down the road. We didn't go as much as we would liked to have done, but we did go a lot. It was a great way to spend the TEXAS HOT DAYS. Emerson can swim with just a floaty on and Braeden too. They are fish.

Crose Wedding: My second sister got married in the Manti LDS temple. It was amazing and awesome and our two weeks trip was great. It was so wonderful to spend time with my family and go to the temple again. It was peaceful and wonderful. I got to see my wonderful and best friend Devri while I was there and her now two little boys. They are adorable and so is she. Love you Dev. 

Kellie to Snow: Right after my sister was married, we took another sister to college. She is going where I went and living above where I lived.Talk about memories flooding back. I really miss Snow and all of the wonderful people and things that happened there. Those are treasured memories. I only hope that she knows she is blessed to be there and that she can make wonderful memories of her own. 

Ben Deployment: Ben is tasked to be deployed this April...I know, I am not saying anything else because for now, I want to forget. My mind is numb for now to this.

New friends: Our new friends just happen to be our neighbors and they are fantastic. Kids the same age, and guess what....she is from Monroe, UT...yep, where I grew up. It is wonderful to have such great friends here. We have got each others backs. It is a nice feeling.

Chiari: I stopped taking my meds a while back because well, frankly, I was tired of taking them. I was feeling terrible and terrible and oh, did I say terrible. It took a while for my body to wean off of them and get everything out of my system, but I finally did. I feel better. I still have occasional death  headaches (chiari) and pressure headaches every time I lay down or bend over, and somedays I have them all day. I am not going to let this disease get me. I have to fight with all I have. Somedays are better than other for sure. I am still weak a lot and I know my limits. My kids get a lot of cuddle movie time with their mom. 

Chiari walk: I went to my first Chiari walk. It was so special. I felt so special. They spotlighted us and told us we were the heroes. For the first time since I was diagnosed, I felt like someone actually recognized this and something that is a real thing. That it is okay to talk about and it is serious. Two people in the last week have that I know died from this disease. We need to find a cure or something not so traumatic on the body to help cope. We spent the morning talking, talking with people who are just like me, buying jewelry :), getting free stuff, and then for the walk. It wasn't long because of a lot of Chiarians can't walk too far. It was such a special moment when I crossed that finish line and everyone clapped. My wonderful boys by my side. I am so grateful they were there. Braeden has a good time riding his scooter around. Later he told me that it was so fun being there with me. 

Well, that sums up life...but it sounds so, so, not crazy. I feel like I haven't been able to catch my breath for a while. Hopefully soon things slow down a little. I am not betting on it though.  

Conquer Chirai Walk September 2013

I am beyond excited to go on this walk. There are so many reasons why. I am so excited to meet other people who go through the same things I do. I already know one close friends wife who was diagnosed a few months ago. Other than that...facebook support groups is all I have. I can't wait to have my family participate is something for me to support me, I will feel some sort of will to go on and that I can make it through this. I am going to make shirts for our family(because they are $25 a piece and I can do them for way cheaper).

Here is my personal fundraiser page... https://www.conquerchiari.org/ccwaa/sites-2013.html

Lately things have been getting more complicated. My botox wore off and I could feel the second it was gone. That made the pain even worse because it is like the calm before the storm. My head feels like it is stiff and on fire again. My pressure, cough headaches are back. Or anytime I climb the stairs...I have to stop at the top or about 5 seconds later my head is pounding and I am dizzy until my head pressure can adjust. It is miserable and I dread telling my doctor because nothing we have tried so far has really really worked. I feel like he is just going to get sick of me and kick me to the curb. He is a super doctor and I know he wouldn't do that. It just scares me. I up-ed my dose on my one kind of headache med yesterday, so hopefully that works. I have been taking my neck pain headache med at night more and I am just tired all the time. It is supposed to make me sleepy and tired. Oh boy, it does. I don't want to wake up in the morning and with two boys climbing all over me in the morning wanting breakfast...it is so hard. I just need my sister in law Edith who is a massage lady to live with me and give me neck massages everyday. That would have to help right? Who knows.

We are going on a vacation this weekend, and I am dreading a 16 hour drive. My body is going to hurt and ache. I am going to be so uncomfortable and my head is...just going to hurt. Misery! Wish me luck! It should be a fun trip for the kids to see their grandparents in Missouri. They live on a lake, so the kids should be in heaven for a few days.

Emerson

The last week, Emerson was not himself. He has been sick and grumpy and downright ornery. It has been really hard on me. He has slowly been snapping out of it. He is starting to cuddle with me again, and he grabs my hand when we go somewhere in the house or out of the house. He has been melting my heart because he will come up to me, jabber a bit, and give me a big smile. I LOVE it. He is such a sweetheart. He is loving nursery. He climbs on the table, which I don't know how to stop him. He follows commands like, get the phone, throw this away, go find daddy, and where is Braeden? He is so fun right now. He can say a few things, Pup-Pup for puppy, Tucker(our dog), daddy, mama, I love you, milk, wow, uh oh, and hewooow....when there is a phone in the near vicinity. Adorable. He is my chunky boy, who still has terrible eczema. He is always rashy. Poor baby. Maybe someday he will grow out of that. It is not fun for him though. He is obsessed with buckles. Every time he gets out of his high chair, he has to buckle it. It is so funny.  He tries really hard to keep up with his older brother, and he does a pretty good job. He is way more destructive that Braeden ever was...that I can remember anyways. He is a tornado child. I usually find him on the kitchen table. Man, did I have monkeys instead of children? He has outgrown his crib, because he literally climbed out of it. So we had to take it down, and put his mattress on the bed. That is where he is now until we can make him his own bed. He is doing a great job getting off the binky. He was or has not been attached to anything, BUT his binky. I knew it would be hard to get rid of it. Last week, when all he wanted to do was cry...I was a terrible mother and gave him the darn thing. He was so so happy. He loves to shake hands and give high fives. That is my way of getting him to me to change his diaper usually. It works every time.

I love my little guy and he is so much fun to be around. He is smart and fast and crazy. What a sweetheart. I am so grateful he is a part of my family. He adds so much! I love you Emerson Henry.

Opthemology Appiontment...aka eye doctor

I went to see an opthemologist to see if I have lost any vision in my eyes because of the Chiari. Last week I went (with both kids in tow) to take a field of vision test. Yesterday I went back to get my results. Ben was fortunately home to watch the kids. The nurse called me back and put me in a chair to check my eyes. She told me she was putting some antiseptic in my eyes to numb them. She said it would burn, but I she should have said it will burn your eyes out. Holy cow. Then she told me to do my vision test....ya right with my eyes burning. I did the best I could. Then she said, "oh I have to put some more stuff in your eyes to numb them even more so I can dilate them and check pressures, it will burn worse this time." Oh boy did it burn. She put some tool in my eyes to check pressure and dilate them. Well, I had never had my eyes dilated to I had no idea what was to come. She handed me a tissue and told me to go back out to the waiting room until there was a room open. I can out of that part of the office with watery eyes, and it looked like I had been crying. I sat in a chair and thought that I could text Ben. Well, my eyes were burning and my vision started to go weird. I felt like I was going blind. I quickly became nauseous. I tried looking at my phone, and my eyes would burn and I literally could not see anything but blur. I gave up on the texting, calling, or internet browsing. I put my head down and kept my eyes closed.  I would open my eyes occasionally to look around to see what was going on in the waiting room and people would stare at me. I mean hard core stare at me. I thought maybe I had mascara on my face or something so I just kept my head down. Finally after 45 minutes of waiting, the doctor came to get me. I told her that people had been staring at me and that I felt sick. She realized this was my first time getting my eyes dilated and she told me to look in the mirror. I looked and my eyes looked like freaky alien eyes. My pupils took up my whole eye. Normally they would be black as can be, but my eyes looked really pale gray and transparent. It was freaky and crazy. The doctor proceeded to ask a million questions, and then gave me some good news. Finally. I have 20/20 vision. I have no damage to my optic nerve from the chiari. I do have a few spot where there could potentially be some problems in the future, but for now, nothing. She looked at every angle inside, outside, side side of my eyes. Then we walked over to take a prescription test. That is any strain on your eyes watching tv, reading or looking at distance. I have a slight strain or 1.5. She told me I could get some reader glasses with a prescription under 1 if I wanted to for reading and tv watching. Then we went to another camera and took pictures of my eyes. Every angle, and looking for damage to eyelids, tears of nerves, and other things. No damage there. I got tons of eye pictures which was pretty cool. I told them they had a great job. Seriously...make my eyes go big...really big and then take pictures of the back of my eyes and head...AWESOME! If any of you have had your eyes dilated, they are super light sensitive and can get damaged if you don't use these ridiculously awesome glasses....kidding, they are terrible and Ben laughed and me when he saw them. Ben called me on my way home and asked me to go to the grocery store for milk and eggs. Yes, we are that family. Emerson drinks so much milk. My little calf. Anyways, I took my glasses off to go into the store and holy moly pain in my eyes. I hurried as fast as I could. Then I decided to go to sonic to get myself a blackberry lemonade...yummy! I went home and rested some so my eyes would relax. It took hours and hours for my eyes to return to normal. All afternoon yesterday when I would talk to Ben or he would talk to me, I would get real close to him and tell him to look in my eyes. They were freaky deaky and we would both just start laughing. It was so fun! Basically, my eyes are great and so they are probably not aiding in my headaches. Finally something that is ruled out. I go back in 6 months for the same round of tests to see if there are any changes.

Emerson's first haircut!

Both of my boys got a haircut today and it makes Emerson look so grown up. I was kinda sad when I saw him after. He looks like a toddler, but I still call him my baby! He is my sweetie baby and he is my little Emerson Huggamonster! He is so much fun and I just can't get enough of him. Unfortunately, he loves his daddy. He will mostly only cuddle with daddy when dad is home. It makes me sad, but I get cuddles in the morning so I guess we are even.

Braeden is just so smart. He loves to talk and learn. He is learning to read and he can sound out shorter words. He goes to preschool this fall and I don't like that either. When did my family become this old. My little Braedo-potato is just getting so big. He loves to break dance on the floor.

Both boys like to watch Team Umizoomi, Bubble Guppies, and the new show Peter Rabbit. It is so cute (I like to watch it too). I am enjoying every second with my boys and watching them learn. I am so grateful to be a mother to two precious earthly children and one angel baby. I love being a mom. Right at this moment I cannot complain about anything with motherhood. When I put Braeden to bed, that may change :)