Jake is Just Great

We are thrilled to report that Jake's health has been much better for the last month! He has not vomited in the month of March. We have tried a couple new medications but at the moment he is medication free and doing well. We are told his issues will likely return but he will eventually grow out of it as a teen. Still thinking it's an "abdominal migraine" kind of thing.Jake participated in the Science Fair in January at Meadow Elementary. He knew what he wanted to do and I couldn't convince him otherwise, no matter what I did! He did a great job and had fun with his project.
Jake gets an idea in his mind and won't stop till his vision is fulfilled. He recently wanted to make T.J. a dog house and off to work he went. The dog house looked great but T.J. wasn't convinced he wanted to sleep in it. Jake spent 2 days coaxing and bribing T.J. ,but without success. Silly dog!
Just wanted to show off how awesome our local Cub Scout/Webelos troop is. Leslie Hemming and the boys put together this large and yummy poster for Jake when he was sick in November. Jake enjoyed every last nibble and lick! We had so many acts of kindness and love shown from our Primary Presidency, neighbors, friends, family, etc. We are truly blessed.

Morgan's Countdown

Morgan is 15 and counting her way to 16. She's down to less than 3 months until her 16th birthday. (She can tell you the exact days!) She's been busy studying hard at UCAS and enjoying her friends. She's best friends with Connley at the moment and they sure are silly. Morgan can't wait to officially get her driver's license and go on dates!
Connley and Morgan dressing up for a multi-stake dance in the middle of the winter. It was a snowy cold night!

Two Teen Family

It's true, we now have two teens residing under our roof. Heaven help us! Kelsey turned 13 on January 10th. She is the only kid in our family that has to attend school on her birthday, poor thing.
She's been wanting a bigger bike, as her knees were touching the handle bars of her old bike. Now she's cruising in style.
We sure love you Kelsey and all the wonderful qualities you add to our family!

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.

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.

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!

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.

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.

February Fun

February means one thing in this house....Science Fairs! Some kids excel in sports, my kids excel in academics. It's just their thing. I'm not bragging, I'm just saying, they are little brainiacs.
Miss Kelsey went on to the district fair and was chosen to go on to regional, which is held at BYU the end of March. Way to go sis! Woot, woot.
Morgan and her friend, Taylor, had a group project and they did very well also. Their project was chosen to go on from district to regional also.
The elementary and high school regional science fairs are the same week, but different days. So that means we get to spend 4 days in a row at BYU with science fair. Yay us (said with sarcasm)! I am really proud of the girls working hard and putting effort into their work. I am a lucky mom.
Morgan went to her 9th grade school dance this past week. To quote her on FaceBook, "BEST. NIGHT. EVER! Love my friends (; ♥" I think she enjoyed herself.Morgan has always been such a high achiever and hard worker. She has recently decided to attend a charter high school, UCAS (Utah County Academy of Science), which is an early college high school, on the campus of Utah Valley University. She will be taking high school and college classes at the same time. She will graduate with an Associate's Degree from UVU one month prior to her high school graduation. This was a hard decision for both Morgan and parents. Morgan is making a major commitment since this will be hard work without much time to play. Joe and I are taking a leap of faith as we are NERVOUS to have our cute young daughter attending college classes with men 5-6 years older than her.
We had to register Morgan for UVU last week and it was an emotional thing. She will be taking her college placement tests the end of this month and it seems so strange and surreal. We sure love her but some days it seems like this "growing up business" is happening too fast.

Derby and Spooks

Congratulations to Jake for taking FIRST PLACE at the Pine Wood Derby!! (Do I have to mention that it was actually Jake Finlinson that took first place?) Jake and Joe put blood, sweat and tears (well, not quite) into the Pine Wood Derby this year. They spent hours preparing for their first car ever. After several changes and tweaks, they were ready to go! The boys each got three runs down the track. First run, our car did not go so fast. Second run, our car threw a wheel into the audience. Before the third run there was a quick pit stop which included repairs with the hot glue gun. After repairs, they ran the second run again and third run. Jake's car was fast a furious after the repairs! Way to go boys. We're proud of you.

We had some crazy silly Halloween-ers this year. Morgan decided to join in on the nerd-herd....

Kelsey was a mad-hatter (and a dang cute one!)...

Jake was a ferocious werewolf...

And Joe and I, well, we feel like we're from the age of the dinosaurs, so why not act like it? We dressed up like Fred and Wilma.

Halloween was fun but it's always one holiday I'm happy to have over. No more sugar rush, no more headache and no more creepy spooks. Now on to the good stuff, like pie night, Thanksgiving and Christmas. Can I listen to Christmas music now?

It's That Time Again

Can you believe it's that time? The kids are headed back to school once again. We had a great summer but I'll be the first to admit that life is not as fun when mom is working! All those years I was a "stay-at-home," and I didn't quite appreciate how good it was. Alas...the seasons change and you have to move on.
Morgan is a 9th grader this year. Even though that's officially a "high schooler," she is still stuck in the middle school this year. She is sorely disappointed since 3/4 of her friends she shared GT (her gifted-talented program) classes with for the past 4 years are now in the new high school in Saratoga Springs. I'm sure she will adjust and make a whole new group of friends. We love her and are so proud of the decisions she makes. She's one smart cookie and a big helper.
Kelsey started 6th grade this year. It's her last year in elementary! She is still in the A.L.L. program (which is not offered in our elementary) so she's carpooling with a group of kids to the other side of Lehi. Kelsey is such a sweetie and she is sure maturing fast. We were watching home movies the other night and I couldn't believe the changes she's gone through. I miss the cute little bouncy girl that couldn't pronounce her "R's". She's still cute and bouncy, but in a different way. She is also such a help around the house and a good loyal friend.
Our little guy, Jake-O, isn't so little anymore. He started 4th grade this year. He was our only child who was ready to go back to school and EXCITED! He's liking his new teacher and all the friends he knows in his class. Jake is all boy...he would play Wii, computer games, and watch TV 24/7 if we let him. He's enjoying Scouts and has recently found he loves climbing rock walls. He also tried laser tag for the first time this week and thought it was awesome. He is a "mama's boy," or at least I like to believe that. He is very kind and affectionate and a joy to be around.
Last but not least, wanted to share some of Kelsey's art work. Our LDS stake had a talent show at the end of the summer. They encouraged everyone to enter something. Kelsey sat down and sketched out some of her favorite Disney characters. I thought she did pretty dang good for not tracing them (which is the only skill I can do). I'm excited for her to get into Jr. High next year and get into some art classes. Since I lack the "artist gene" I haven't been able to help her truly cultivate that talent.

Life is good! I love my family and the joy they bring me. I have had some great trials and growth in my own life in the last 6 months. (Employment related.) Even though I don't enjoy the trials, I appreciate the opportunity it's given me to humble myself and rely on the Lord. He is truly magnificent and has heard my cries. I am glad to say that things have worked out for the best and I am again experiencing the true joy life can bring. Thanks to my family and friends for putting up with my craziness and helping me through this crisis. I love you all!