I believe in guardian angels. I'm back and my heart is full...

I've been thinking a lot lately about 2014... It was to date the most difficult year of my life. It's hard to explain the emotions that a mother goes through as she watches her child suffer and no matter how hard I try, I cannot take away the suffering. I had many days where I cried out loud and screamed at the top of my lungs in helplessness... Many days on my knees, pleading with my Heavenly Father to take it away or give me the answers so that I can make it better. I was willing to do ANYTHING.

I can look back now and see the Lords hand in our journey. He was there with me when I thought I was all alone. He offered so many tender mercies that often went unnoticed... Until later.

I see much more clearly now and I've been aching to write about it. 

First, I want to tell you about my Grandma's passing. 

Life is full of adventures; some are fun and some are not. I think as long as we learn and grow from our experiences, we can find joy in this journey we call life. 

I believe in guardian angels. On March 3, 2014 I gained mine.. or maybe Bodi and I both did. My beloved Grandma Isabelle Hawley, my Scottish granny, passed away. She has been close to me and my family all growing up. She made me laugh with her silly songs for every occasion and she made my belly happy with her amazing treats! One last thing about granny... She knew my favorite pie was cherry and would make me one when I would have sleepovers. Even better was my love for the crust so she would also make a crust only pie for me too! I sure love her! 

When she passed I was sad and knew I'd miss her very much. What I didn't know is that she would be more help to me on the other side than she could have been still on earth. I had been going through the hardest year of my life with Bodi's seizures and after Granny died, I felt her almost immediately carrying me. I had renewed strength to keep pushing through. To try to be the rock I needed to be for Bodi. (finished 7/2024) It wasn't always easy but somehow I never felt like I was doing it alone. 

There was a time when I was desperate for someone to understand what I was going through. I didn't expect anyone would, but it was hard feeling like no one truly knew what it was like to not have a single other thought besides your child's wellbeing. It consumed my life. Then one day there was a knock at my door. It was a friend whom I hadn't seen for years. Her name was Debbie Allred and she was a college friend of Aaron and I's. Her baby boy had experienced seizures to the extent he was hospitalized and they had to take drastic measures to help him. (They did the ketogenic diet which made his seizures stop.) When I opened the door and saw her, ( I think she handed me a loaf of bread or something.) I wept. She understood. She knew what I was feeling as a mom. She knew the brain is a complex thing and just like we had no idea how the seizures came, there wasn't a fix all that worked for everyone to get them to stop. She continued to be there for me when I needed support. I know my granny sent her to my house that day. She was such an answer to my prayers. Sometimes our prayers are answered through other people. I'm so grateful for my guardian angel during that rough time in my life. Both on earth and in heaven. 

Endure to the end

In the beginning… There was some worry, concern and a small amount of sadness. We were ready to find the problem and then just as quickly, find the remedy and ta da… all better! Life doesn't always work out the way we plan it does it?

After years of searching for a remedy we've seen half a dozen doctors, tried 2 failed medications, a handful of natural healing approaches and are currently knee deep in the second diet (MAD) that we hope and pray will be the miracle we've been searching for. It has come with much struggle. 

The MAD diet continues...

We haven't had as good of a day as we did last Sunday the 22nd. However, he's doing better on the MAD diet than he did on the GAPS diet. His seizures are about 9 everyday right now and we're hoping that they will decrease even more soon. Most people see a change within the first couple of weeks. The only problem is most people who start this diet, start with a dietitian and are hospitalized for the first couple of days. Bodi's neurologist thought I was educated enough on the whole thing to just get started. Im anxious to get in with the dietitian soon to make sure I'm doing everything right. Our apt. isn't until April 28th but we are first priority if there's a cancellation so fingers crossed!

Bodi's spirits are better the last couple of days. I taught him how to read labels, use my carb app to keep his carbs under 15/day and make a few of his own meals… EMPOWERING!

Here's what a typical day of meals looks like for him:

scrambled eggs in heavy cream with 3 slices of apple
turkey slices rolled with cheese, carrots and 1TBS ranch, 3 slices of apple
smoothie after school (heavy cream, tbs peanut butter, 1/2tbs cocoa pwd, ice, capful vanilla
cheese burger in lettuce with homemade condiments, carrots

Yesterday I found a low carb tortilla (3 carbs!) and he was able to have a quesadilla. He was thrilled!

I'm going to have Bodi add some thoughts about how he is dealing with this journey later...

Bodi's journey with epilepsy

This boy of mine…

About 4 years ago Bodi started complaining of occasional "spells" where he would feel like he had passed out for a short period of time. It only happened a few times that we can recall in the first year or so and we wondered if he had not eaten enough or maybe was dehydrated. When they started to get more frequent (about 2-3/month) and we were able to see them happen, we realized there was something more going on.

We took him to his Pediatrician who sent us to a Neurologist who didn't' think they were seizures and sent us to a Cardiologist. After an EEG, EKG, MRI and blood tests all showed no abnormalities we decided to take some time off from doctors.

Unfortunately about a year later, his "spells" were getting a little more frequent. Still only about 3-4 every few weeks. We found a different neurologist and got an EEG while he was having a "dizzy day". The EEG showed "sparks" of abnormal activity on the right side of his brain. He was diagnosed by Dr. Goldstein with epilepsy in January of 2013.

We started on a rx called Oxcarbazepine soon after and his seizures became a little more frequent and he felt very tired and dizzy all of the time. We decided to wean him off of the drug. After another set of blood tests and a video EEG, our Neuro referred us to another Doctor at primary children's hospital. His name was Dr. Van Orman. We got into see him within the month. He suggested trying another medication. He also knew we were LDS (Mormon) and suggested Bodi receive a priesthood blessing. I knew that was something we needed to do for some time and thought it was so amazing that it was suggested by our Neurologist.

Bodi received a blessing and we started on the new medication (Keppra) in December of 2013. Aaron gave him his blessing. There were many close friends, neighbors and family members fasting and praying for him. In the blessing Aaron didn't feel prompted to bless him to be healed but what he did say was profound and gave me great strength. One thing he said was that Heavenly Father needed Bodi to endure this trial to help shape him into the person he needed him to become. I can't imagine what lies ahead in Bodi's future but I do know how special he is and always has been. I know he will get through this and will be an even better person because of it.

Keppra proved to be even worse then the first drug for Bodi. He was dizzy all the time and was having more seizures than before. His Dr. decided to up the dose and see if that helped. Bad call.  He went from having 3-4 seizures every few weeks to having 15-20 EVERY SINGLE DAY! Needless to say we decided to wean him off of Keppra. We expected he would go back to where he was before the medication. Unfortunatly, that wasn't the case. He continued to have 15-20 seizures every day well over a month after coming off the drug. We were devastated to say the least.

We did a lot of reading, research and praying (along with some natural therapies that didn't really help) trying to decide what our next step would be.  Then a friend of mine told me about a diet called GAPS (Gut and Psychological Syndrome). I looked into it and felt like it was something we needed to give a try. I read books, shopped and cooked to prepare to start the new diet. Then, on February 23rd we gave Bodi another blessing and got started.

The first week was very difficult for Bodi and I. I was always in the kitchen preparing, cleaning and then shopping for meals and Bodi wasn't really enjoying the few choices he had for food. He also started feeling a bit nauseous mid week. He really tried not to complain though. He always thanks me for everything I make him and never cheats. By the end of the week we had hope! He started having half as many seizures! This lasted a few days but then the seizures began to increase again.

We have been on the diet now for a month and have seen little improvement. Bodi's seizures have also changed. He is falling more, turning to the right now and his eyes are shaking. He has hit his head a few times and we became really worried.

We decided to head back to the Dr. after we got back from a short weekend to Cali. for my grandma's funeral. We ended up seeing a new Dr that wasn't as expensive and had a great reputation at Primary children's.

March 17th- Dr. Marita got all caught up to speed on Bodi and let us know that Bodi's seizures needed to be treated urgently. She posed a few options: 1) brain surgery- Bodi is a good candidate because his seizures are focal on the right side of his brain. They would do a 48hr EEG and another MRI to pin point where the sparks were coming from and then he'd see a Neuro Physchologist who would run tests to decide whether or not that was a part of his brain that could be removed. Needless to say this option made me feel like I had an elephant sitting on my chest… SCARY! 2) One more drug called Vimpat. She thinks because Bodi's seizures have changes into complex partial seizures, this drug "should" "could" "might" be more effective than the other 2… Hmmm… SCARY! 3) Keep on working on the diet or maybe switch to the Ketogenic or Modified Atkins diet.

Dr. Marita feels if we don't get these under control sooner than later, they could get much worse and cross his entire brain causing jerking and possibly permanent brain damage… Not good news. :(

It's been a very emotional week trying to decide what the next step is for Bodi.  He and Aaron both want to start the new medication. I'm having a hard time finding peace with that decision… I have prayed and prayed and prayed, but have still not found the peace I would like to feel before trying a new medication that could possibly make Bodi's seizures worse.

In the mean time I have done a lot of reading about the Modified Atkins Diet (MAD). I decided to tweak our current diet to a lower carbohydrate, hight protein diet closer to the MAD and see what happens…

March 22nd- Day 1- Bodi has had only 6 seizures today! I hope and pray we are on the right track!!

More to come...

Iditarod 2012

          I went to the 2012 Iditarod.  The Iditarod is a huge dogsledding race over 1000 Miles long.  I went and watched 67 mushers at the start of this huge race take off into the forest.  The race has over 20 checkpoints.  Each is within fifty miles of each other. They stop at the checkpoint to rest and eat.  After eight or so hours they are back on the trail moving to the next checkpoint and the finish line. The race starts at Anchorage and moves on to Nome.  The race is started with sixteen dogs.  When a dog gets too tired, they ride in the sled bag to the next checkpoint.  There, they are dropped off and flown back to Anchorage.
            A musher named DeeDee Jonrowe mushes in the iditarod.  She wears completely pink, all her dogs wear pink harnesses, pink booties, and a pink sled.  She has never won the Iditarod but is considered one of the "oldies"  for racing the Iditarod thirty times.

        While we were there we ate reindeer hot dogs.  They tasted surprisingly different than normal hotdogs... More DELICIOUS!

         At my great uncles house where we were staying, there were three moose.  They stood right outside the kitchen window. With the window open, I could have touched one!  Moose are very dangerous. If you get near one and irritate it, It will kick you to death.

         There were three really cute dogs and a cat named miss kitty, (she thinks she is a dog, Hence the name).   They would lay on you when you sat on the couch.  They are all really nice show dogs.  The one in the picture is named Yager, I don't know if I spelled that right.
I loved those dogs while I was there and miss them right now.
       

 



                  -Bodi

Bodi's dogsled adventures

Great day to be outdoors!

What a great day to be outdoors! The colors were amazing! I love the Fall in Utah! We are so blessed to live in such an amazing place where we can enjoy the changes of each season.

Dad's first stand up paddle board...

Dad finally got a chance to try stand up surfing. He got the hang of it and had a great time... Unfortunately he has a few battle wounds though. He doesn't complain cause it was worth it!

Hula pie

We shared some hula pie and more fish tacos! Great food, great ambiance, and wonderful company!
No complaints here....;)

Surfing Goat Dairy

From now on, all the Asay Goats will learn to surf! Shaka Brah!!

Contemplating the sea

Mom and Dad in Maui. We're getting ready to have another round of fish tacos.... Mmm good! Today we snorkeled and hiked up La Peruse bay. We'll post more pics soon.

Road trip with mom!

I decided to take the kids and go visit Nana and Papa in California while Aaron stayed home and studied for the Boards Exam.  I felt bad leaving him, but I knew he would get a lot more studying in with us gone.  We brought Grandma with us to hang out and help me to not fall asleep driving (if you know me, you know I am a horrible driver when it comes to staying awake!) 

We had a great time! 

 We visited the favorite rest area on the way and walked on the salt flats.

 Swam in Nana and Papa's pool...

 Bodi's still wearing floaties...Poor kid!

 Bathing beauties Grandma and Nana.

 One of my best friends, Susan from when I was a kid had her 3rd baby boy and Irie got to give him his dinner. What a beautiful sweet boy. His name is Mason. Irie was so sweet and gentle with him.

 Nana took the girls to see "Annie get your gun" at the Sacramento Music Circus. It was excellent! Clara loved it, but of course she did...She's my little Annie Oakley:)

 Ireland loves her Aunt Jennie! So glad They came for a couple days. It was great to see them and get to know little Lily.

 Cliff jumping with the kids. Check out the perfect pose;)

 Who's steering this thing..."Crash"!

 I love my Dad and my kids adore their Papa and Nana.

 Papa even lets the kids drive the boat!

 Noah was very protective of Irie on the boat. He never let go. Just in case she might fall out.
Very cute!

 Uncle Bryan, Auntie Kellie, Oakley, Ruby and Sunny also came up for a visit.  We sure love that family!

 Another one of my childhood besties, Jessica, brought her kids up for the day. It was so fun to have the crew together again.  They all have a friend. Good times!

We were able to have a Birthday Party for Lily....The Big #1! She is one adorable baby. We all wanted to take her home with us!

...We get home, Aaron takes the test and PASSES! Wahoo!  More on that later...

Aaron's officially a PA now!!

DRUM ROLE PLEASE!!!!!!!!!!  AARON ASAY PA-C

GRADUATION DAY!!

“Up to a point a man’s life is shaped by environment, heredity, and movements and changes in the world about him; then there comes a time when it lies within his grasp to shape the clay of his life into the sort of thing he wishes to be.  Only the weak blame parents, their race, their times, lack of good fortune, or the quirks of fate.

Everyone has it within his power to say, this I am today, that I shall be tomorrow.  The wish, however, must be implemented by deeds.”

                                    Louis L’Amour, The Walking Drum

This was more than just an end to a journey for Aaron and our family. It was a beginning to a new future. One where Aaron is fortunate enough to be able to help patients everyday and possibly change lives.  The school recognized Aaron's unique ability to care and have compassion for others when they awarded him and his good friend Evan (whom we went to Guatemala with) the Community Service Award. "For Significant contributions to the betterment of the community through service learning..." Aaron always wanted to have the experiences to help people in communities that desperately needed someone to care.  We're so proud of him!!

This is Ravina. She was Aaron's preceptor when he worked on the Indian reservation.  She taught Aaron so much, not just about medicine and caring for patients, but about the Native American culture. We love her and her sweet husband Fred.  We were actually blessed to attend their sealing at the Salt Lake City Temple just last week.  She received the rural PA of the year award. No one is more deserving than Ravina. She is a wonderful teacher and example...Ahe'e (thank you)!

 The speach, as eloquent as ever. What an experience! It was a bittersweet day for him for sure.

 The end of a very long hug. This was definitely a together journey we were on the past 2.5 years.  I knew he could do it, it was just getting to the finish line that wasn't always an easy feat.

 University of Utah PA Program Director Don Pederson. An amazing man! He retired after Aaron's class 40 began. We feel blessed to have had the opportunity to be there his last year.

 You know Noah's saying, "Hey guys I saw some food over there that no ones eating. I bet if we just.." Gotta love that cute boy and all his wit! That's cousin Lucy leaning against the big glass window looking down at the spacious parking lot below.

PARTY TIME! GO UTES!

don't tell Bodi I said that.