Nope, Not It!

Quick update! I've got to tell you, I'm getting kinda tired of talking about Jake's medical issues. We are just ready for it to be over and have our son back to normal. Quite frankly, he's much more sick of it than we are. Jake started the new medication (Reglan) on Monday evening. He vomited 4 times on Monday but Tuesday he vomited 19 times and Wednesday 18 times. After a discussion with the doctor Wednesday, we stopped the new meds and I finally got brave enough to try the Valium. 5mg Valium, and the boy barely flinches! I was expecting a full-on nap and craziness, but he says he just feels sleepy for 15 minutes and then "kinda" dizzy. That's it!

Yesterday he was down to 10 vomits and we'll see what today holds. We started the application process for a tutor, but who knows what will come. I'm still hopeful. We've taken him down to a liquid diet for a few days and other than feeling starved, it seems to have slowed things down.

We're at 18 days straight and 117 barfs. Quite frankly, I think we'll just stop counting. Perhaps that will fix it, since nothing else has. Thanks for all the love, concern and prayers.

New Possible Diagnosis

Well, to the doctor's we go! Today we visited with Dr. Janet Harnsberger again. As frustrating as this has all been, I must say that I really like Dr. Harnsberger. Our family has a long history with her (since Kelsey was 2 years old) and she is fantastic. Today we started over again and went through Jake's history from top-to-bottom (no pun intended). She put my mind to ease about the brain scans. Apparently there were multiple neurosurgeons who reviewed the MRI at Primary Children's and one of those docs is VERY good in his field and she said she would trust that opinion, of any of the opinions. So, I will gladly, finally put that to rest!We decided we've x-rayed and scanned every part of Jake's body except his ankle. Since he isn't vomiting due to his ankle, we're starting over (at least with our thinking). As I said before, Primary Children's threw out a diagnosis of Cyclic Vomiting Syndrome, which this is not presenting typically for that diagnosis. I haven't been sold on that, though it is a possibility.

Dr. Harnsberger thinks Jake may have Gastroparesis, which reduces the stomach's ability to empty its contents. Basically, we don't want to do additional scanning at this time due to his recent multiple exposures to radiation. The only other testing to do for this diagnosis includes scanning, isotopes, etc. All the other testing needed has been done. We are going to start Jake on Reglan, a medication to help the motility of his stomach. There are some serious and frightening possible side-effects, so we are "starting low and going slow."

Side note....we sent Jake to school this morning for half a day, hoping to help him get in some "normal" before the doctor's appointment. By 9:21am he was sent home for vomiting twice. I got to stop by the school later in the day and talk to Jake's teacher. Mr. Drummond has been awesome and is helping us. We are considering applying for the school district to provide a tutor twice weekly until Jake can get back to school. We'll decide that for sure tomorrow once we mull over it and say some prayers.

Basically, the proof will be in the pudding. In other words, we are hoping to stop the pukes once and for all!! We are officially at 68 pukes in 14 days. Jake is ready for this to be a bad memory. It is at least a new hopeful direction and the possibility of an end. Even though gastroparesis can last a lifetime, some cases can do better after a year or so of treatment and kind of fix themselves. We will keep our prayers focused on that and HOPE, HOPE, HOPE we have found a solution.

Frustration and Sadness

I apologize for not updating and/or informing people of our current status. This week has been an emotional week for our family and it's been hard just keeping it together. I'll try to update you on what's happened and where we currently are.

As you know from the previous posts, we had Jake tested back in October and thought at the time he had celiac disease. The actual small bowel biopsy came back negative, but with his symptoms and our family history, our pediatric GI doctor told us she still believed he had celiac and we put him on a gluten-free diet. He vomited a couple more times during October but we assumed his gut was still healing.
Fast-forward to November 15th. Jake started vomiting again that day and hasn't stopped since. In 8 days, he's vomited 52 times. Some days are worse than others. The most is 12 times in one day and the least is 1 time. We started more testing on Friday, Nov. 18th, with an abdominal ultrasound which was normal.
Since we had no improvement over the weekend, Jake had a brain CT on Nov. 21. We would not get the results until the next morning.

That night we took Jake in to St. Mark's Hospital ER to get him some IV fluids and check his labs. Thank goodness the labs looked okay, so after filling up with fluids, we went home to sleep.
On Tuesday morning, while driving to work, I got a horrific phone call. The doctor told me that the CT showed a 1.6 cm lytic lesion on his skull. Now remember, I work in a cancer clinic, so when I hear lytic lesion, I know that cancer will eat at the bone and cause these lytic lesions! The next 3-4 hours felt like the worst in my entire life!! I have never been so scared, sick and shocked.

My kind co-worker/RN, Kathy, was very helpful and got a brain MRI scheduled within 2 hours. The doctor I work for, Dr. Tudor, reviewed the CT and calmed my nerves enough to make it back home to pick up Jake and get him to the clinic. I sat and watched the MRI through the window, still feeling numb and in shock. The tech showed me the area of the brain we were focusing on, and there was an obvious abnormality.
Dr. Tudor was able to call me, before I was even home, and tell me that there was no lytic lesion (BEST news in the entire world!!!!) but there was a "dural ectasia, bowing the inner table of the skull." These abnormalities are usually seen with specific diseases and not seen in the brain, usually the lower spinal cord. Dr. Tudor consulted with a local neurosurgeon that recommended we get an angiogram asap because this was likely caused by a carotid cavernous sinus fistula. (Yeah, yeah, I know. Too many medical terms).

So off again, Joe and I drove Jake to Primary Children's Hospital in Salt Lake. We went in through the ER and their radiologists reviewed the CT and brain MRI that had been put on a disc. Low and behold, they felt it was normal. They did not believe there were either of the issues, which the previous radiologists saw. Huh?? Good news, I realize, but what explains the vomiting? We left the hospital late last night and were told that a neurosurgeon would review the scans again early this morning. We never received confirmation that it was done. We are just left with still more questions than answers.

Basically, Primary Children's said they believe he has cyclic vomiting syndrome and to keep following with his pediatric GI doc. They consulted with our GI doc on the phone and she told them he does not present as a typical cyclic vomiting syndrome, but they were not convinced and said he was just "atypical." Though this may be the case, it was frustrating that after just a few hours looking at him and really no assessment, they gave us that info and sent him on his way. Not impressed.

Today I tried to get a neurosurgeon from Provo, who we work with at our cancer clinic, to review the films from the MRI and ensure that he believes the same thing. Unfortunately, with the holiday weekend, there were no docs available. I still feel I need a third opinion to confirm one of the other 2 opinions. We can't afford to be missing things.

So, at this point, I have a sick, dizzy, vomiting child at home that doesn't understand why they can't figure out what's wrong. We will see his pediatric GI doc on Monday, Nov. 28, but until then, their answer was to give Jake a prescription for 5 mg Valium, to get him by. Just so you know....in my opinion, that is way too much Valium for a little boy. He will be knocked flat on his butt with that. I filled the script, but haven't given it yet. We'll see how bad he gets. At least I can cut the dose down if I get desperate and let him get some sleep.

*Side note, Jake just vomited while I was typing this. My poor little guy!

I do not want to seem ungrateful because I am THRILLED beyond belief that this is NOT cancer. I'm just so frustrated with the medical field and bad opinions and, and, and.... I will be looking into a tutor next week, as Jake has missed so much school, I don't know how he will ever catch up on 5th grade. This has been going on, intermittently, since August. I've actually lost track of the missed days. Mostly, I just want my little boy to feel well and be able to play with friends and go to school.

We will try to keep you updated. As it stands, there will be no news until after Monday's appointment.

Oh, and last, but not least, it would be horrible to ignore all the wonderful people who have been so kind. My co-workers and Dr. Tudor have been amazing. Dr. Tudor spent so much time reviewing labs, scans, making phone calls and calming my nerves. My co-workers have filled in for me during a hellacious week! And even though I know they were miserable, they never even hinted a complaint. The primary presidency brought over a gift bag with books, cross-word puzzles, food, etc, to keep Jake busy during his hospital visits and testing. And the many friends and family that have texted and tried to call. I am sorry I could not reply to all of the calls and texts. We love you all and are so grateful for your prayers and compassion.

The Barfs bring the Blues

Well, here's the real reason I chose to play "catch up" on my journaling today. Today was ROTTEN and I needed to get back to what is important in my life. My family! This was somehow therapeutic to sit and remember the fun we've had over the last several months. I needed some happy thoughts to help clear the clouds of sadness.
This morning we took our sweet Jake to St. Marks Hospital bright and early. We met our favorite poop doctor (as she calls herself), Dr. Harnsberger, who is a pediatric gastroenterologist. She did an upper endoscopy with biopsies on our little guy. This comes in response to 3-4 months of random vomiting. Here a little, there a little, some days a lot (like 14 times)!
Well, our sneaking suspicions were confirmed. Dr. Harnsberger feels very confident that Jake has celiac disease. The biopsies will confirm this on Monday, but she was able to identify it just from the abnormal look of his small bowel. With Kelsey and Joe both celiac, you would think this would be "no biggie." Well, no way. I've still cried multiple times today and I've just decided that it's okay to be sad. When you find out something is going to permanently change your child's life, you have the right to be sad.

* Update - (Please read more current posts, as there were surprises with the biopsy. Negative for celiac.)

I love you Jake! I'm sorry that life is a trial and you have a new challenge to endure. I wish Heavenly Father would just give me all the trials so you could just have fun, like kids should. But that's not how it works. I guess this will make you stronger and someday you will sit and laugh at me for being so dramatic and sad. Love you to the moon and back!

Morgan's Smile

Before

After

The Braces are now off!!! One down, two more to go.

Moab Mayhem

September 3rd-5th we decided to take a quick trip down to Moab again and enjoy some family time. Our first night there we hiked to Delicate Arch at sun down. Joe has always wanted to view it by moon light and finally got his wish. It was a beautiful star-filled sky.

Smooching with my honey under Delicate Arch

Hanging out on Park Avenue

Our favorite: "Corndog Rock"
(or at least that's what we think it should be named)

My three gossips in front of The Three Gossips

Isn't he precious! ha....I love him!!

Joe and Jake giving me a heart attack as they climb.

We had a fun weekend and it was so great to just get away and get back to the basic unit of our family. I love these guys like crazy. Thank goodness I've got an eternity to spend with them.

Called to Serve

On August 21st I was sustained as the Lehi South Stake Young Women's President. (I knew I was enjoying being 2nd counselor a little too much.) I must admit that life has since been a whirlwind but a wonderful whirlwind at that. I have 3 amazing and talented women in my presidency (Diana Nelson, 1st counselor; Heather Haynie, 2nd counselor; and Danielle Spangler, secretary). I would be absolutely lost without them.

I am still feeling quite inadequate for the call but I love the YW and hope to serve them and their leaders well.

New Schools, New Adventures

Morgan started classes at UCAS on August 15th. As usual, I cried dropping her off. She's a sophomore this year. I can't believe she's in high school and on a college campus, at that! She's enjoying the new freedoms of this school and really thinks it's funny that the college kids think she's one of them. (I don't find that very funny) We are sure proud of her drive for excellence and study habits.

Kelsey has moved on to Willowcreek Middle School and is a "Sevie" or 7th grader. She started classes August 22nd. She is blooming and growing into her sweet and spunky personality. She started voice lessons this fall and has a beautiful pure voice.

Our baby sure isn't much of a baby anymore. Jake started class August 23rd and is in 5th grade this year. He has a male teacher for the first time and is liking Mr. Drummond and his classmates. Jake started piano lessons this fall and is busy with scouts. He's mischievous and a joyful tease.

Memorial in Montana

August 11-13th I got to go up to Whitefish, Montana, and attend a memorial for my Grandma Conn. My sisters, Tammy and Debby, were also able to attend. It was a quick whirlwind of a trip, but so nice to see my dear uncles and cousins.

Kevin (cousin), Darren (cousin), Norman (uncle), Tammy (sister), Debby (sister), Wendy, Darren (cousin) and Carrie (cousin)

Old family log cabin on Conn Road. I have faint memories of this as a little child. It has long since received new owners and a new look with a paint job and a second floor. Beautiful big sky country!

Conn Road. Memories galore of my grandparents, mom and dad also.

I love my grandma and think she is an amazing strong woman. My grandpa died more than 30 years ago and she endured on and lived a good life. She was honest and hard-working and I'm proud to be her granddaughter.

In Memory of Edna Elaine Conn
Born April 24, 1916 / Died December 14, 2010

Deano has gone Webelo

Jake earned his Bear Badge this past week and has moved on to Webelos.
My favorite part of Scouts is having my son pin me once a year. I have a feeling this is probably Jake's least favorite part of Scouts.
Jake even got to have his face painted in the ceremony, to represent a bear.
And the best part...the pie eating contest and then running through the tunnel (made up of other Cub Scouts standing parallel and holding a sheet high in the air while shaking it). This was a fun night and we're proud of his progress. Way to go my awesome young man!

Trials Bring Growth

As the saying goes, "Out with the Old, and in with the new!"Our family has been through quite the upheaval over the last 3 months. On May 2nd Joe was one of the unlucky employees who got laid-off from Novell. As much as we wanted to be angry at Novell, the truth is, they were a good employer and provided for our family for many years. So, we parted from them with grateful hearts! There are not many more things as humbling as unemployment. Joe has been strong, determined and hard-working in his search for employment. We tried to buckle down on spending and our whole family put our faith in God and we knew things would work out. We weren't sure when, where, how....but we knew God was aware of our situation and we would be blessed.

There is something very special about paying tithes when you are fully reliant on the Lord. He gives us everything and to be able to give back, even if only a 10th, is a privilege. I think I felt better about paying tithes this past month, than any other time in the last 10 years. The less money we had, the deeper our commitment, and more satisfaction in our sacrifice (if you can call it that).

As another saying goes, "What doesn't kill you makes you stronger." That has truly been the case for our family. This trial really ranks more in the medium range, compared to some trials that have to be endured. But, regardless, Joe and I have been amazed at our children's faith and righteous desires. The children have been praying and fasting for new employment. The girls have been fasting here and there, even without our knowledge. We are so proud of the young adults they are becoming. Joe was able to secure employment with a large new company coming in to Utah. He will begin on August 1st. We feel so blessed with this employment offer and especially with a company with such solid footing (they are ranked 152 on the Fortune 500 list).

God is Great! He sent down His tender mercies to our little family this week and we cannot shout His praises loud enough. Thank you, thank you, thank you!

Happily Ever After

In March I was called to serve as the second counselor in the Stake Young Women's organization. Can I just tell you....I love the YW!?! This is such an awesome calling to have and a privilege to work with such incredible YW and leaders. I got to attend stake girls' camp at the Heber property. The weather was beautiful (except for a few hours of rain which added some variety) and it was a great time for all. I got to do "double duty" and also serve as the nurse. Not so sure I want that assignment again. Tick check, anyone?

I am amazed at the service given by those who were called. Sandy Hanks was the Stake Camp Director and did a wonderful job. Also, Doreen Rhoades and Brenda Gentry prepared the food for 220 people. They worked SO HARD and put blood, sweat and tears into the food prep. (ha, not really, that would be gross!) You know what I mean. I love all these women and made new and wonderful friends. What fun!

Both my daughters, Morgan and Kelsey, attended this year which made it extra special. I'm not sure if they knew how to take me being there, but in the long run, I think I wasn't too much of an embarrassment.

Deano is Double Digits

It's true! My crazy son (AND my baby) is now in the double digits. Jake turned 10 years old on July 13th.
We got to have a week-long celebration since the girls and I were gone on his actual b-day. We started the Saturday before by opening some gifts, eating at Costa Vida (Jake's pick) and playing a game of laser tag. The girls and I were gone to girls camp on his special day, but Joe and Jake went to the Weight Ranch and enjoyed a "boy's night" of camping to celebrate.
Finally, we ended the week celebration by going to the final Harry Potter movie. Jake got a wand and several Harry Potter Legos sets for gifts. He dressed up for the movie and we all had a great time. I love you Jake! You are an awesome young man, full of joy and humor. I am proud of you and your choices. You will be an incredible missionary some day and a true warrior in the fight for truth and righteousness.

Well done, my Servant

My niece, Sister Hayley Paul, arrived home from her LDS mission to Lithuania, on June 24th at 10:39 pm. We were able to drive down to St. George and be there for her arrival. It was so much fun! I am so proud of Hayley and her righteous desires to serve the Lord.

The children got so excited just before her arrival that they were losing their minds. They were running around screaming and jumping up and down. I got very teary-eyed thinking of the spirit world, after this life, and the excitement our loved-ones must feel as we are returning from our mission on earth. Wow! I'm quite sure there must be the same kind of "buzz" and joy. How blessed I feel to have a testimony and knowledge that life exists after this world and especially to know that my family can be eternal.

While is St. George we were able to stay an extra day and participate in more family fun. My niece, Ahnalisse, had her senior violin recital at the St. George Tabernacle. She is so talented! She played for about 36 minutes straight and even performed a piece that she composed herself. I am so proud of her.

Ahnalisse on Violin

My other niece, Rachel, played her harp in a piece with Ahnalisse. Wow, these young women are talented and beautiful. I love you girls!

Rachel on Harp

Wendy, Rachel and my sister, Tammy

Oh No! Mo Mo's 15

As with most years, Morgan's birthday fell during our Yellowstone week. This year she turned 15 years old. (Holy, moly, hold on for next year!)
Joe took Morgan out driving to help celebrate her big day. They saw 2 moose on their drive. Not every new driver has to dodge moose! We didn't actually get her driver's permit until we returned to Utah a few days later. Watch out world, Morgan has her permit and we're not afraid to use it.
Morgan's most prized gift was a new cell phone. Those weren't even invented when I was 15 years old.
Fun day, gorgeous weather, and beautiful daughter. I am amazed at Morgan's maturity, kindness, hard work and determination to do what's right. She is a blessing to our lives and I am grateful I can spend eternity with her. Love you Morgan.

Yellowstone Tradition

Family traditions have always been important to me. This year we were blessed again to be a part of Uncle Shirl and Aunt Toni's Yellowstone tradition. The weather was BEAUTIFUL this year and the park was WET. This is the first year in 13 years that I have seen big horned sheep. We saw about 25-30 sheep, so I guess it made up for never seeing them before. We saw at least 5 bear, including a mama grizzly and 2 cubs. We loved every moment of the adventure!

Best Gifts

So I got some pretty wonderful gifts on my birthday. And, as always, it's the gifts that have thought and love put into them that are the best. First of all, Morgan decorated my bedroom door for my birthday with 40 Ways to Say "I Love You." She then put up "I Love You" in 40 different languages. It was so SWEET.
My sister, Debby, and Joe put a lot of time and energy in to making a beautiful center piece for me. They called and emailed several people that I have been close to in my life. They had each of them give one word to describe me. The cool thing was that no one gave the same word. Then they put those words onto small rocks that went in the center piece. It was lovely and very touching. Thanks for making this potentially tearful birthday one of joy!