First Session of Conference Activity

I was inspired from a link on Pinterest.......I did not follow any of her directions but I followed her shape which is based on the Seattle Washington Temple.

It was fun. Although I did most of it, they played with other legos and helped sort, which worked out wonderfully. It took longer than 1 session (just a few minutes) so no other projects were needed. Plus when we were done we talked about sealings and sealers and witnesses :) I'm not sure how long it will last, but maybe I should invest in more white blocks and in the future we can have a temple construction competition during conference or try to replicate different temples each time.....oh, I see great possibilities in our future.

P.S. I am aware that some scale is off and that sealings occur on a higher floor....how to make that all happen was beyond my LEGO skills :)

Silver Lining

Well folks, we still exist. After moving, an unexpected two day hospital stay for Kyle (where we found out that his stomach and intestines have healed, but we are still starting the process of looking for tumors), a week of preparing our old house to return it to our landlord, being screwed over by our landlord....the giant douche, looking for a new apartment, applying for a new apartment, scheduling a move to a new apartment (renting a truck, getting our stuff from storage), the beginning of potty training for Aiden, and being uninsured due to Medicaid error (hopefully it will only last another week) rescheduling 3 appointments for Kyle, postponing necessary blood work for Aiden, and paying $300 out of pocket to see a specialist we have been waiting a month for.........it has been a long two weeks. Yes, that all happened in the last two weeks.

The silver lining in all of this is that to celebrate Evan's graduation....it has been a long four years :) in a month and a day we are leaving to go to Disneyland!!!! Disneyland!!! Except our two day stay in Vegas two years ago, we have never gone on (with the boys) a purely fun vacation. It has always been to visit family, visit schools, visit family/hometowns/schools trips. We have always slept on the floor (which we have always appreciated). So we are going for it. Aiden is still free, we are driving, getting a hotel, and going to Disneyland! And we are going with our two good friends who are Disney enthusiasts and masters of this fairly complicated vacation!

Guys, I just have to hold on through the end of the semester! One month, one day! Here we come! Any tips, tricks, suggestions for us newbies would be appreciated.


P.S. Ducks don't have teeth....I just won that Google bet with Evan and need to gloat. Duh ducks don't have teeth :)

Post Fast Update

After three weeks of processing, I am ready to share about how the scoping went and how the fasting affected us (well at least, so far!).

First of all, my whole family, but especially me because I am writing this and I am the momma, wants to thank all of you who thought of us, sent us good vibes, prayed and/or fasted with us Sunday February 10th. Evan and I had been planning that for a few months, but we didn't really think about opening up about it to others. Mostly because it felt kind of showy (hey, look at us!) and that it wouldn't really interest others. Plus, so many many people struggle with health or have children with health issues, we are not so special or so unique. But we were amazed and touched at the outpouring of love for our little boys and family. So thank you. Thank you sincerely from us. It was very special for us.

At the time of the fast, I had a scope date set for Kyle that Friday in order to obtain a baseline before starting the new drug. Dr. Mizell (our family hero) had planned just a colonoscopy because that is where all of Kyle's previous problems have been found. On Wednesday, as I was driving (after the fast), I randomly thought--I thought it was random at the time, but it was really a small miracle--we should add an endoscopy. I had one reason, there had been some areas of concern in August that were a factor in his last surgery, but we all believed the surgery would fix that and that there should be nothing of concern.

Day of surgery: Dr. Mizell met me in the waiting room, I said, "Did you get my message about adding an endoscopy?" Dr. Mizell, "Yes, it is already on the schedule."

Fast forward about an hour and he met me in the consultation room before I could go back and met Kyle in recovery. He asked me why I had wanted to add the EGD, I told him no great reason, just to check that all those areas of concern had healed and resolved themselves with the surgery in September.

He then said that he was not prepared for what he found and had no indication that it would look like this. Out came the paper with the small pictures all in a line taken with the camera scope. Kyle was bleeding in multiple multiple areas of his stomach---as Evan describes it, it is like looking at little red stars everywhere in Kyle's stomach. Not only that but there were huge bands ringing his duodenum (beginning of his small intestines, immediately after the stomach) of extra tissue (at this time we were unsure what exactly it was).

The day before the surgery, the feeding therapist had directed me in allowing Kyle to make his own food choices---meaning no more set amounts, no more power struggles over food. She believes that some of his pain is real and some "made up" (and yes, I am so angry about that statement) and until we could sort it all out---we should just end the battle. Little did she know that Kyle was fighting me on eating for at least a month because he was bleeding internally. And, I felt like an idiot, because the gauze bandages around his button had been crusted in blood and I didn't realize the significance of that. So part of the finding from the scope has been diffuse internal bleeding of the stomach. It has been a devastating realization, although it is not gushing blood, more like leaking blood.

After waiting a very very long 7 days, the biopsy results came back. It was a little longer than normal because they were significant enough to need extra opinions. The biopsy results were not as strongly worded as Dr. Mizell knew they should be, because from his years of experience he knew just from looking at the bowels that it was more than chronic inflammation. The extra tissue is white blood cell tissue made up of nuetrophils, which are the primary component of pus, too many can cause even more damage than eosinophils (the current problem in Kyle's lower bowels).

Going back just a few months, after Kyle had his surgery in September to wrap his stomach around his esophagus in order to stop his reflux, we weaned him off his antacids. He showed no increased signs of discomfort and we believed that we had eliminated the need for this expensive drug from his life. Yay!

Wrong again Team Kyle!

Kyle over produces stomach acid (we did a fasting blood draw of his gastrin levels last week to confirm). With no antacid to keep it in check, it ate away at his stomach lining and duodenum. It was so bad that his stomach is bleeding and his intestines are trying to protect itself with neutrophils. He is too hyperacidic for his body to protect himself from the acid. We immediately got back on antacids.

However, this condition is very unusual in a child of Kyle's age. Then again, as Dr. Mizell says, "It is Kyle we are talking about here." We are currently in the process of evaluating him for a very rare, very serious disease called Zollinger-Ellison syndrome. This is where there are tumor(s) present in the body that secrete gastrin (the hormone that causes us to produce stomach acid). Often times the stomach acid is too much for an antacid to control. You can search for the tumors but there are multiple possible location of the tumors. I have read different numbers on this, but as many as 50% of the tumors are malignant and can spread. In those cases chemotherapy is needed to cure the syndrome. Kyle's gastrin levels are 200% above the normal; however, often times ZES patients can show 1100%-2000% above normal. So although Kyle is abnormal and concerning in levels, he is not abnormal enough for a conclusive diagnosis at this point. He is also very young. As rare as this disease is, Evan and I have only found case studies and research where the youngest patient is seven.

At this point, we are waiting. Waiting to redo the fasting gastrin levels, waiting for Dr. Mizell to do more research because with the rarity of the disease, he has never had a patient with it. Kyle is almost exclusively being fed through his tube. We have added five bolus feeds during the day to take the place of meals and snacks. We are waiting to allow Kyle's body to heal his stomach, but as I found today from the blood around his g-tube...that is not happening. We are just waiting.

So if in the mean time, I am not so quick getting back to you, I am a little absent in my communication, or forget important events and well wishing---please forgive me. I am just trying to use all my strength to hold it together for our family. Oh, and I think I forgot to mention here on the blog---but we are moving in 7 days. (Don't worry just a temporary move a few miles away until Evan graduates at the beginning of May)

What is it Like?

I know that Kyle had his scoping on the 15th of February, but I thought I would post some pictures to show you what a normal scoping is like......

Arriving at the hospital that is 25 miles away at 6:10am......don't worry because Kyle was hungry from not being pumped overnight and a clean out day, he had been awake since 3:30, 30 minutes after Mom's insomnia kicked in. So we were bright-eyed and bushy-tailed! Although Kyle was asleep in the car by the time we got there :)

 Looking at the awesome Lorax decoration, while taking the time to check in downstairs by going over all the information that I spoke to 2 different people about the day before :)

Going upstairs, and since it is a slow day in surgery and we were the first patients, we get shown right to a room and our hospital pjs.....

Waiting and waiting in the pre-op waiting room.......

At least we love Phineas & Ferb.....which we have loved since Primary's introduced us to it.

After giving Kyle versed, he is not allowed to walk around, so we always snuggle down with warm blankets and wait the 20 minutes before it is go time. He was a little tired, but he is actually watching the TV in this picture....

After waiting in the waiting room and reading multiple copies of People, I wait for the doctor in the consultation room.....for the first time ever, it was very bad news.

Going back and met Kyle in post-op, then he was moved to recovery and he got his long awaited slushy.....

After an extra long recovery time (he was experiencing quite a bit of dizziness), we are wheeled out and to the car.....

Left at 5:35 am, home and back in Mommy's bed with a show and a snack by 10:30. Quick, efficient, and totally normal day in surgery.

Some facts....eosinophilia

When I posted about the fast and prayer for Kyle and Aiden on Facebook, I became aware that many of our friends and family do not understand the boys' disease. I thought I might answer some question here because it is hard to find information about it online.

The boys were diagnosed officially with eosinophilic enterocolitis in August of 2011. They had both been having symptoms much longer than that, pretty much beginning at birth.

An eosinophil is a type of white blood cell that is typically found present at the site of an allergic reaction. With an eosinophilic disorder, large amounts of eosinophils are found in the affected area for no apparent reason. The most common and best researched (which is not saying much) type is eosinophilic esophagitis (EoE), but you can also have eosinophilic gastritis (stomach) or what the boys have, where the affected area is the intestines and colon.

Symptoms can include intermittent vomiting, diarrhea  pain, bloating, malabsorption of nutrients, lack of appetite and a host of others. Obviously, some of these problems create health issues of their own.

Research has shown that for esophagitis and gastritis a restricted diet eliminating all "food allergies;" which have been determined through strict elimination and reintroduction diets that can take years to fully flush out every food that can cause symptoms, can manage the disease. This is not a viable option for us because by the time food reaches the intestines and colon the majority of it has already been digested.

We do know that both boys have an increase in symptoms when partaking of dairy products and Aiden also does not do well when digesting gluten products, but further elimination diets are not seen as a viable way to control all the eosinophilic activity in their lower gut.

There is no cure. There is no treatment either. The only drug guaranteed to help with the symptoms are prednisone, a steroid. As many of us remember from high school, steroids have many complications and are not a long term solution. Both of the boys have done several rounds of steroids when symptoms were unable to be controlled any other way. On Aiden's most recent round of steroids in December, the drugs did not even make much of a difference.

Eosinophilic enterocolitis, is tricky to deal with, can come and go, and does not respond very well to drug therapy. Not much is known. Each person affected reacts differently and the only true way to measure the situation is done through frequent (every 6-12 months) colonoscopies (which is surgery and requires anesthesia)  and biopsies of the affected area. Only under a microscope can a true eosinophilic count be obtained.

We have run courses of antibiotics to try to change bacteria in the stomach in hopes of affecting change, we have introduced pancreatic enzymes to aid in digestion, we are using topical anti-inflammatory drugs typically used to treat ulcerative colitis, we also use sympatholytic medications to help control the pain, we use probiotics, and we are using anti-spasmodic drugs to try to control intestinal movement during digestion. The only class of drugs that we have not up till this point used are immuno suppressants typically used to treat Crohn's disease, which is an inflammatory bowel disease. We have started these drugs in hopes that suppressing bone marrow will control the eosinophilic activity in the bowels.

Because of the lack of research, we do not know if there is a genetic link. If you look at my family, it seems that there is. I do not know if this will shorten their lives. I do not know if this will become worse. I do not know if this could later be diagnosed as Crohn's disease (something my doctor recently suggested). I do not know how this might affect my boys' ability to function in a normal school or fulfill a mission call. I do not know if Kyle will ever be able to come off his feeding tube.

If you have any other questions, please ask. I'd be more than willing to answer them.

Circles

I haven't posted in awhile. Honestly, besides a Thanksgiving that will go down in history as my most favoritest, bestest, most wonderful Thanksgiving ever, there hasn't been much worth keeping track of for posterity. There hasn't been much I want to rehash on the blog. Nothing that has sparked my writing interest. The boys are struggling medically. I made a decision this week that will require serious watching of the boys---because we are starting them on a drug that can cause an infection of the pancreas as well as raises their risk for cancer. The drug is a carcinogenic. It is an immunosuppressive drug, suppressing bone marrow. This drug requires each child to be surgically scoped now and in 6 months to see if it is making any difference. Because Aiden was somewhat emergently scoped in December, we just need new levels for Kyle. He is going in for his surgery next Friday. Then we will scope again at the end of the summer and see.

But I don't want to dwell on this anymore...I want to record a conversation for posterity. This happened today.
Kyle: (out of the blue) Daddy, 2+2=4
Evan: Yup.
Me: Evan, Kyle and I worked on geometry today. Hey Kyle, how many sides does a square have?
K: 4
E: Good job!
M: Kyle, how many sides does a triangle have?
K: 3
M: Kyle, how many sides does an octagon have?
K: 8
M: What about a circle?
K: None.
M: Good job, buddy

Twenty minutes later in the car:

Evan: What I am upset about is that you told Kyle a circle has no sides.
M: What???
E: It has an infinite amount of sides. Think about it, you have a square than...I forgot what a 5 sided shape is called?
M: It's a pentagon.
E: No that is a 2D shape, I'm talking a 3D shape.
M: No you aren't, you said a square not a cube.
E: Okay you are right, you are right, I was.....fine. So 2D, you have a square, pentagon, hexagon, octagon, the more sides you have the more the shape approches a circle. Think n=number of sides, as n approches infinity the shape becomes a circle. Therefore, a circle has infinite sides.
M: I know. At every point on a circle you can draw a line tangentially.
E: See. It is infinite.
M: I know. I did that proof in high school, but how do I tell this to Kyle? He's going to walk in to kindergarten and tell his teacher that a circle has infinite sides?
E: Worse things have happened. Just tell him it is the sunglasses that I draw on the white board. Hey Kyle, a circle actually has infinite sides.
K: A circle has infinite sides, which means none.
M: No, not none. Infinite is the opposite of none.
E: None means you don't have any and infinite means you have
M & E: Everything
E: It is the like the sunglasses that I draw on the white board downstairs.
M: It means that it goes on and on. It is the biggest number that you could every imagine.
K: A circle has infinite sides.
E: You know who works a lot with infinity?
K: Who?
E: Me.
K: Mommy, you know who works a lot with infinity?
M: Who?
K: Daddy.

That is right folks, the only part of my parenting that Evan ever questions....my math instructions to the children.

Halloween Round-up

This year, we had our most amazing July 4th ever. However, this Halloween will not go down in the annals of history as our best Halloween ever. We had lots of fun things planned, it just didn't come together the way I had hoped. We started Halloween week out with a Sunday trip to the ER, one of Kyle's incisions is infected so we are back on an antibiotic that really makes him feel like crap. We also have some other medical stuff going on that is making my boys tired, cranky, and sleeping poorly. They feel awful and are out of sorts.

The last three days Aiden has asked to go to bed---even on Halloween night when he came home from trick-or-treating with a 102.2 degree fever (I had no idea until after we got home). Today, on this first day of November, everyone is in their pjs on the couch, chillin', at 10 am Kyle asked for quiet time...so naps in the morning it is. Something is off in our house for sure.

Tuesday, we meet our cousins at Gardner Village (a local boutique shopping area with historical/polygamist houses). They go all out on their Halloween/witch decorations. We took pictures there two years ago, and they turned out so well.

 Kyle was not interested in cooperating.

We took a break to call Nana and wish her happy birthday.

Getting toddlers to support Claire's month old baby head....in a word difficult! But boy was she cute.

 Aiden was the only one willing to sit next to this witch.....

Aiden had enough of his cape and mask, this one was only posed under promises of candy from the candy shoppe.

 After the candy shoppe! They were much happier. I was so glad we could do that because it reminds me of the candy shoppe Heidi and I used to go to as children at Cannon Beach.

This is the best picture we could get of all of us. I know that Heidi isn't looking, but the rest of us are---ish :)

That afternoon, Zoie called from the high school--they were doing a trunk-or-treat. We went over to trick-or-treat out of the high schoolers' trunks. Aiden was so into it. He took off his costume just a few cars in, but continued to trick-or-treat. When we were done, we had to walk back by the cars. Aiden kept running back to the trunks. I said, "We are done, Aiden." He said, "I trick-or-treat." As I was carrying him home, he leaned into me and said, "I so, so happy!" 

He is also in love with his plastic blue pumpkin and frequently takes Kyle's too. He fills them with toys and runs around with them. He loves pumpkins, remember his baby pumpkin from the store. He often gets it down from the table and over the month it has received quite a few bite marks all around it :)

That night we were invited to attend Mami & Papa's ward Halloween party. They had sloppy joes, which was a real treat. We love those, but of course my kids won't eat them. We had a good time and it was a perfect one hour visit. Aiden ditched his cape not very long into it :) per his usual. 

There were a few games we played and on the ping pong toss, Kyle won a goldfish. He named her meimei (not sure where he got it or how he is spelling it). Mami had some left over goldfish food. When we feed her before bed that night, Kyle looked at her in her mason jar and said in an awestruck voice, "Meimei you are so cool. I think you are amazing."

There was bowling.

It really was fun. We saw the bishop who married us and caught up with him. It is always such a good time and I wish that our ward did something like it.

On Halloween, Kyle had his preschool party. That was a fiasco in and of itself--when I dropped him off I saw they were decorating store bought sugar cookies. We talked with the teachers about how he couldn't eat them, but he could the frosting.

Evan picked Kyle up that day and when they walked in, Evan said, "Kyle ate some sugar cookie." I asked Evan if he had talked to the teachers about it. He said he had only noticed the partially eaten cookie when he walked in the door. I quickly called the preschool to find out. The director went down and talked to the teachers, they had everyone decorate a cookie (Kyle's was decorated for Evan) and take them out to put on their mat because they knew Kyle couldn't eat his. He was able to put some frosting on an oreo for snack because he wouldn't be able to go home and eat his sugar cookie. I asked Kyle if he had eaten his cookie while taking it to his mat....he said he had. I had to explain to him that when the teachers/parents/mom and dad tell him he can't eat something and not to eat it, he shouldn't because it will make him sick and we are trying to protect him.

Last night, we went to the neighborhood chili/hot dog roast. It wasn't as much fun as I had thought it would be. We then went to trick-or-treat. Aiden made it five houses and then wanted in the stroller. So Evan and Nate took him home. I convinced Kyle to do a few more houses, but he just wanted to be home. He didn't do a lot of houses last year, and he wasn't more into it this year. I wonder if he'll ever really like it.

We had more trick-or-treaters than ever before....but the best part was sitting around talking with Nate & Evan once the kids were in bed. I worked hard to do fun Halloween things with the boys, but it really fell off this week. Earlier this month, we made these lanterns.

I thought it would be something the kids could help me with, but it didn't end up being. However, we made so many and they helped pick out some candy, we filled them and gave them away to lots of our friends. We also had friends over and made cinnamon ornaments for Thanksgiving, then got back together to decorate them. Now, I need to get this Halloween stuff down and put up our Thanksgiving decor.


I just think after a month of preparing for the big night, it is just never as fun as the lead up.

P.S. After all our Halloween fun, we probably saw 8 other boys dressed in the exact same Spiderman costume. Luckily, I made Aiden's so he wasn't as copied...and the cape is reversible and can now go into the dress up box.