Hurry Up and Wait (FAP - Part 2)

If you haven't already, read part one here.

Up until this point, Jerry and I kept Wesley in the dark about our FAP concerns. We didn't want him to worry unnecessarily. Even at this point we didn't tell him everything, we told him we thought maybe something else was going on and we wanted to see another doctor.  

Thankfully, we only had to wait a week until the GI specialist appointment. This time Jerry and I took Wesley together. Filling out the paperwork we didn't check off any of the GI problems listed on the history form. Wesley had no issues - no pain, no bleeding, nothing. It was strange taking your seemingly perfectly healthy child into a GI specialist to say we're here because of these two odd (non GI) symptoms and mom's intuition. 

We were called back to the exam room where we met Dr. B. He was a nice (young) guy. He didn't act like we were totally insane when we told him our concerns, but I also didn't get the feeling he was convinced Wesley had this condition. Fortunately, this disorder does have a simple genetic blood test available. He said he would order the genetic testing to help us find out for sure.

Unfortunately, genetic testing sometimes doesn't have hard and fast results. There are variations of FAP and not all of them show up in the genetic testing, so a negative result didn't necessarily mean he doesn't have the disorder. Wesley could have a version they haven't mapped the gene for yet or we could have a false negative. We could go through the testing and still not get a firm answer. It could be that these two odd things are just weird, unrelated quirks. That was our prayer!

The doctor said he would "clinically follow" Wesley even if the results came back negative. This meant even if the results came back negative Wesley would probably be scheduled for a colonoscopy at some point. Personally, even with negative results, I wouldn't feel like Wesley was "in the clear" until he is 30 years old and had no polyps. 

We didn't know it at the time, but Dr. B's main nurse was out of the office that day. The nurse or assistant who helped us didn't know there were some special instructions for ordering genetic testing. We didn't follow the correct procedure and it would end up delaying the whole process. Not knowing this, Jerry took Wesley to the lab to get his blood drawn. We knew it may take "up to a month" to get the results so we waited patiently. When a month had passed and we hadn't heard anything we called. This is when we found out the tests weren't ordered correctly. One test came back showing "no deletions or duplications" (which was good!), but the other tests were lost. For those we had to start all over. 

Since we were starting all over the nurse suggested we get pre-approval from our insurance since genetic testing is expensive. That delayed things even more - Jerry had to call several times to get the right info either to or from the doctor to the insurance. Eventually, we did get approved and took Wesley to the lab again. Then we had to wait "up to a month" again for the results. 

A few weeks in, the preliminary results were showing some abnormal results. The nurse said Wesley was "at increased risk" for FAP. Based on that, the doctor suggested we schedule an endoscopy and colonoscopy. The only way to know for sure what was going on in there was to take a look around. Once again, this wouldn't necessarily give us a final answer. If they went in and everything looked good it was no guarantee that it would be that way in a year or two or ten. Either way we would just have to be patient and take it one step at a time because it could be years before we have a firm answer either way.

The colonoscopy was scheduled for December 11th. I couldn't send Wesley into a colonoscopy without explaining why so I sat down with him and explained everything as best I could in a kid-friendly way. He was pretty upset and even hyperventilated a little bit. At that time he was more worried about getting another IV than anything else (thanks CT scan guy!). The more he thought about it though, the more questions he had. I answered them as best I could. Unfortunately, no one could answer the question we all wanted to know the answer to... does he actually have FAP?

Then they called and bumped the colonoscopy back a week to December 18th. Great. More waiting!

Go on to part 3...

Begin at the Beginning (FAP - Part 1)

"Begin at the beginning," the King said, very gravely, 

"and go on till you come to the end: then stop."

- Lewis Carroll, Alice in Wonderland 

I guess the best place to begin this post is the beginning. Fair warning though: this will be a multi-post story, so sorry in advance if it runs long or I leave you with a cliff hanger at some point.

The very beginning of this story is a regular eye exam for Wesley back in 2008 or 2009. It was his first. Everything was fine, no prescription needed, but when looking in his eye the doctor mentioned he had a birthmark called a CHRPE (pronounced "chirpy") on his retina. CHRPE stands for congenital hypertrophy of the retinal pigment epithelium. The doctor said they weren't too common and it was good to know he has had this since he was a child because when he sees a CHRPE in an adult he sends them right to a GI doctor because they almost always have colon cancer. In Wesley's case though, he was just born with it and it wasn't a concern.

Fast forward several years... near the beginning of this year, Wesley noticed a small bump on his jaw back near his ear. I wasn't too concerned. It didn't bother him at all. It was hard and immovable so I was pretty sure it wasn't an infection or something going on with the soft tissue. We decided to just keep an eye on it for a bit to see if it changed or went away on it's own.

When it came time for his well check in June we asked the doctor about it. He wasn't sure what it was either and decided to refer us to an ENT doctor. Jerry took Wesley across town (the ENT would only see first time patients at his home office) for the appointment. The ENT didn't give us an exact name for the bump, he said it was probably just a "benign bone growth" and he wanted to do a CT scan to be sure. I googled several variations of "benign jaw bone lump/growth/tumor" and came up empty handed.

The CT scan was scheduled for July 29th, and since the scan was closer to home, I took Wesley this time. When we checked in at the hospital, they gave us some paperwork. I looked at it and was interested to see this benign bone growth did have a name: osteoma. I snapped a photo of the paper so I could remember the name and made a mental note to look that up when I got home.

The photo I snapped while waiting to go into the CT scan

[Side story: The CT scan was ordered with intravenous contrast so Wesley had to get an IV. It was not a very good experience. The tech wasn't the greatest and struggled a bit to get the IV in before finally calling a nurse to do it. By then Wesley, who was already nervous, was pretty upset. The nurse got the IV right away and the scan was over in a few minutes, but the whole experience left Wesley with a new hatred of IVs!]

Later that evening, I sat down and googled osteoma. Of course, the top hit was just a generic page on Wikipedia. There wasn't much info and the little that was there pretty much said what the ENT had said - they are a "benign neoplasm" usually with an unknown cause. No big deal. Then it said "Osteomata are also found in Gardner's syndrome." So I followed the hyper link to "Gardner syndrome" and went down the rabbit hole.

I had never heard of Gardner syndrome before so I started reading. Nothing really caught my eye, but I kept reading anyway because I'm a sucker for interesting medical stuff. When I got to the part about diagnosis I couldn't believe my eyes. It said:

Gardner syndrome can be identified based on oral findings, including multiple impacted and supernumerary teeth, multiple jaw osteomas which give a "cotton-wool" appearance to the jaws, as well as multiple odontomas, congenital hypertrophy of the retinal pigment epithelium (CHRPE), in addition to multiple adenomatous polyps of the colon.

People with Gardner syndrome can have both osteomas of the jaw and CHRPEs? What are the chances Wesley also had both these two weird things? I told Jerry about what I read and he said we should be sure to ask the ENT about it at our follow up appointment.

I started researching more about Gardner syndrome. The more I learned the more worried I got. Gardner syndrome is a subtype of familial adenomatous polyposis (FAP). The main issue with FAP is that it causes lots (like hundreds and eventually thousands) of polyps to form in the colon at a very young age. That many polyps, if left unattended, have a 100% chance of turning into colorectal cancer. There is no cure. The main treatment is to have the large intestine removed so the polyps never have a chance to become cancerous.

There were several nights I stayed up reading all I could find about it online and then I couldn't sleep. The follow-up with the ENT couldn't come soon enough. My fear was that the ENT (having never heard of this rare disorder) would tell us not to worry and send us on our way. And that is exactly what happened. The ENT doctor said the CT scan showed it was just a benign bone growth and not to worry. Even when we asked him outright if it could be a sign of something more serious or related to colon cancer, he said it wasn't.

Now what? I wasn't sure what to do. I didn't want to be accused of fabricating an illness and seeking unneeded medical attention. Parents get their kids taken away for things like that! (Munchausen by Proxy Syndrome, anyone?) But I also could NOT just ignore these two symptoms knowing that if it was this rare disorder Wesley could be developing colon cancer right this very minute. So, I followed my gut and emailed his primary doctor. Knowing how doctors feel about patients diagnosing themselves with Google, I carefully worded my my email. I just laid out the facts and let him connect the dots. He emailed me back the next day saying he was "impressed with my research" and gave us a referral to a pediatric GI specialist.

That made me feel much better! I was so thankful that he didn't just brush me off as some crazy Googling mom! We made the appointment with the GI specialist and waited.

Go on to part 2...

Christmas Ornament 2015

Every year I give the kids a Christmas ornament. For the past few years, I have made it a goal to make them and not buy them. I am really proud of myself for getting them made early this year. I even had them finished before Thanksgiving!

I can thank Pinterest and Roz for the idea for this year's ornament. Roz made a goal to read 52 books in 2015 so I decided to make book ornaments for everyone. I found instructions on Pinterest to make miniature books. They weren't necessarily supposed to be ornaments, but that was an easy fix with the addition of a piece of string.

The first step was to ask everyone what their favorite books were this year. I texted Roz to ask her and didn't mention why I wanted to know. I wanted to make one for Trevor too, so I had to text him on the sly as well. I ended up making him a book on his "to read" pile instead of his favorite for the year.

I went to Amazon and printed off tiny images of each book's front cover. If it was available I printed the back cover too. For the novels I was able to find excerpts and pasted them into a document in tiny font to print. So the tiny words in the book are really from each book. 

They all start with the real first sentence, but the following pages ended up in no particular order due to double sided printing and page folding. The comic and more graphic novels are a little bit different. They have tiny, printed screen shots of the preview pages courtesy of Amazon.

It's hard to tell from these photos, but the books are tiny. Most of them are just over an inch in height. The biggest is still under two inches tall.

My favorite ended up being Hayden's little Calvin and Hobbes book. It really looks just like a tiny version of the real thing! He reads C&H every day at lunch. Even though it is too small to read the actual words, he could tell me what it says because he has them memorized!

Here are all eight completed ornaments...

Top row: 

Lego Ninjago (JD), Diary of a Wimpy Kid (Eli), Cat in the Hat (Annabeth)

Bottom row: 

Calvin and Hobbes (Hayden), Around the World in 80 Days (Justus), 

Solar Flare (Wesley), The Nightingale (Roz), and Field of Prey (Trevor)

If you want to see them, here are some of the other ornaments I've made in recent years...
Hot Cocoa Mugs 2014
Stamped Washers 2013
Felt Owls 2012

Random Cute Photos

September 24 - JD's reading has really taken off in the past couple months. Here he sat down with Annabeth to read her a book. 

September 28 - Now that she is a little bit older, Annabeth has been going over to play at the neighbor's. Today, I drove over to pick her up and found her riding down the street with her friends in a car. All the girls were dressed as princesses.

October 14 - We have been learning about 10 famous paintings this semester. JD seems to really enjoy it. For each of the paintings I have printed a coloring page. JD wanted his coloring page to look just like the real Persistence of Memory.

October 18 - While Dad was watching football on the big TV, Annabeth and Wesley shared a little small screen time on his Kindle.

A Visit from an Old Friend

After the sound of the familiar clucking alerted me to her presence, I was surprised to open the door  this morning and find Loosey on the back patio. She hasn't done that in ages! She is pretty much the equivalent of a senior citizen so I'm not sure how she managed to jump the fence. We enjoyed her little visit and then I took her back to her home and friends. 

Loosey and her sister "The Red Evil One" (Annabeth calls her that) will be three years old in a few months. They are the only remaining chickens from our first batch of chicks and they have lived through quite a bit in their three years! They welcomed two new batches of chicks into the flock and survived a coyote attack. We hope they'll be healthy and keep laying for another year or two, but I wouldn't be surprised if this is the last patio visit we have.

Mom and Roz Weekend

Last weekend I took my annual trip to go see Roz in Minneapolis. I had a little trouble getting off the ground, engine trouble sent us back to the gate for about an hour. While I was sitting on the plane, Jerry and the kids were having breakfast at Denny's. 

Thankfully, I did get there eventually.

First stop after meeting up with Trevor (and getting a quick tour of his new place) was Giordano's Pizza for dinner. The wait was long, but they let you order your pizza half way through your wait so once you're at your table you don't have to wait all over again for them to cook it. No wonder it takes so long to cook, their Chicago deep dish pizzas are REALLY deep!

I'm not a big drinker, but I did try this beer. It was pretty good!

Roz and I made our usual trip to Junk Bonanza on Saturday. I kept my eye out for chicken items, I especially wanted an egg scale, but didn't have any luck. I only got a few small things. After JB we went out to Culver's for lunch and hit up a favorite thrift store. We hit up the new outlet mall where I splurged and got myself a new purse. Then we ran to JoAnns and Target to buy some crafting supplies before running to Panera for a quick dinner.

Sunday morning we got out the door bright and early to run to the Farmer's Market and meet my cousin Katie for brunch. I bought some fresh cheese curds to bring home to the boys. Yum!

We had brunch at Psycho Suzi's Motor Lounge. Weird name, good food, and AWESOME weather - although I can't give the restaurant credit for that!

After brunch, we ran over to look at the park location for next year's WEDDING OF THE YEAR!

Then we swung by the Happy Gnome (restaurant) for a quick peek at where the reception will be. As you can see, I made a new friend. You can meet him yourself next June if you come to the wedding!

Here is a little sneak peek at our craft project. Roz bought a small, vintage suitcase at Junk Bonanza. We took it home and ripped out the old lining. I re-lined it and Roz made a cute little banner for it. She will put it on a table at the reception for cards. So cute!

Before you know it, Monday morning rolled around and it was time for me to head back home. I'm always depressed for a few days after parting ways with Roz. At least this time I have her and Trevor's upcoming Thanksgiving trip to look forward to!

It was a Circus

Annabeth and I went to a baby shower for a couple of women at our church. The shower had a circus theme. We had a great time and enjoyed spending time with the other women and girls in our church.

There was a little "photo booth" area set up. Everyone took turns. Annabeth thought it was a lot of fun!

 We left the backdrop and props at church so the boys could have a turn on Sunday.

 Then, since it was no longer needed, they let the kids run through it!

Lost at Sea?

The day after we returned from our California vacation, I was sitting at the computer and put my hand up to my face. As soon as I felt my ring against my skin, I knew something was wrong. I looked down and the diamond in my ring was gone. 

I have no idea where or when it fell out. It could be at Legoland, the house we rented, in the ocean, or anywhere in between. I'm kind of hoping it's in the ocean because that's more romantic - kind of like the "heart of the ocean" jewel in Titanic - than having it drop down the bathroom sink drain at the Jack in the Box in Yuma.

I'm glad I didn't notice it until we got home, it would have really ruined my vacation. If would have really bothered me to know where I lost it when there was little chance of me ever finding it. 

Our 20th anniversary is next year so I guess I will get a new ring set! In the meantime, I just couldn't have an empty finger so I ordered this ring set from Amazon. It was only $12! I told Jerry he couldn't just say that was good enough, although I am sure he was tempted.

So, if you happen to be in the Carlsbad, CA area or the Pacific ocean and find a diamond, please let me know!

Summer Birthdays

We celebrated JD's birthday a little late this year and had a combined party for him and Annabeth in August. We also ended up having a few friends as guests (which we don't normally do) and it was a lot of fun! The kids had a great time playing with their friends, swimming, and eating.

Annabeth has been asking for a playhouse for a long time. I couldn't find one used anywhere. When I saw this one on an Amazon Lightning deal I jumped on it. She didn't quite understand what it was when it was still in the box, but she loved it after Jerry and Justus put it together for her the next day!

 JD got a bike for his big birthday gift from us, but in all the craziness I didn't even snap one photo!

Annabeth's School Picture

When I took back to (home)school photos a few weeks ago, I didn't get a photo of Annabeth. I took a few shots of her on her birthday instead. She is an official student this year, working on some pre-school workbooks with me each day.

Keepers New Year

We celebrated the end of our first year (and beginning of our second) with our Keepers of the Faith Club at church this week. We have done a lot of fun things this year: fire safety, archery,  nursing home visits, and tie dye to name a few. Jerry and I are the group leaders and we think it was a very successful year. You can see some posts of our fun activities here. We are looking forward to new adventures.

Here is a photo of our group:

Bathtime Baby

Well, she's not really a baby anymore... but here is Annabeth after a bath tonight!

Getting My (Digital Photo) Life in Order

I took a little time this summer to try and get my digital photos organized and backed up. Just in case someone else will find this helpful I thought I would share what I have done so far and what I plan to do to finish this project. My film photos are organized in albums - this post is not about those. Someday I would like to digitize them, but that will probably have to wait several years.

I wanted to do two things: back up everything and print. I am completely done with backing up and will continue working on printing. 

My Old System

A few years ago, I didn't really worry much about backing up my photos. I trusted my iMac completely. I didn't take human error (my own!) into account. Right before we moved from Wisconsin to Arizona I nearly deleted every digital photo I've ever taken.  Since then I have been extra careful about having photos backed up in more than one location.

I had my photos on two computers (iMacs) and automatically backed up the photos using Time Machine and an external hard drives. I also uploaded the best of the best photos to Shutterfly as free off-site or cloud backup to my local backup. 

Backing Up: The New Way

Last year, I decided to try Shutterfly's cloud storage service called ThisLife. I love it! It automatically backs up all the photos I load to my computer (phone and iPad too). 

ThisLife saves every photo (and video!) in my entire photo library. Unlike regular Shutterfly, I can download a full resolution photo if I need a copy for some reason. The photos are easy to look at online or with an app for mobile devices. When I signed up last year, ThisLife cost $59 for one year and I was limited to 25,000 photos and videos. I had around 13,000 photos so I knew I would be okay for awhile. Since then they have changed their storage plans and you can now get UNLIMITED photo storage for $19.99 a year. That's a great deal!!

ThisLife

I was happy with ThisLife. Then I updated my iMac and got an iPhone and wanted to give iCloud a try. Apple's iCloud does all the things ThisLife does and more. I used it to sync all my photos to two iMacs, my iPhone, and my iPad. Uploading took f.o.r.e.v.e.r and killed my internet speed for weeks. (ThisLife gives you more control over uploading and was much better in that regard.)  iCloud is a little more expensive - $3.99 per month for only 200GB of storage - and will only work for you if you are an Apple person. ThisLife will work with other operating systems.

Apple iCloud Photos

So right now I have all my photos in two clouds. You can see from the screen shots above, they are very similar. I haven't decided yet if I will keep both. I actually like ThisLife a bit better, but if I had to choose I would keep iCloud because it just works so well with all my Apple devices.

So to recap, back up your photos! Experts recommend two local and one cloud backup:

1. Local #1 - Computer
2. Local #2 - External hard drive
3. Cloud - ThisLife, iCloud, Amazon, Google, Dropbox, etc.

Printing

The second part of my plan was getting these photos where we can see them. It just isn't the same to sit around the computer screen and look at photos together. Looking at them on the iPad is a bit better, but not much. I decided against printing actual photos and putting them in albums. Instead, I have chosen to make photos books. They hold a lot more photos in much smaller space. They are also easier for the kids to handle - no ripped binder holes or photos falling out.

I have been taking digital photos since 2002. In 2002 and 2003, I still took most of my photos with a regular camera and just a few with the digital camera. Since those years had very few digital photos I made two 20 page Shutterfly photo books for them. 

From 2004 on I plan to make and order Blurb photo books. This is the company I use to print my blog books and I have been very pleased with them. The advantage to Blurb is you can fit a LOT more photos in one book. Blurb books can be over 200 pages while Shutterfly is limited in that regard. For larger books with lots of photos, Blurb ends up being less expensive.

Since ThisLife is connected to Shutterfly I can easily order a DVD of my photos and put it in the back of the photo book. That way if the "clouds" ever evaporate we will have the photos on our computer, an external drive, in photo books, and on disks.

The plan for printing:

1. Shutterfly books - for special events or smaller amounts of photos
2. Blurb books - for yearly albums with LOTS of photos (and blog books)
3. Photo DVD - to put in back of each book

So, here's where I'm at...

I have all my digital photos backed up to ThisLife and iCloud. I never have to think about this again. Each photo I take will be uploaded automatically. I have DVDs for 2002, 2003, and 2013. I plan to order disks for the remaining (and future) years. I'll wait for Shutterfly sales to do this. (In case you're wondering why I don't burn the disks myself - Shutterfly can get a lot more photos on a disk than I can.)

I have photos books for 2002, 2003, and 2013. I did the 2013 book out of order because I wanted to use a later year with LOTS of photos as a prototype for the Blurb photo book. I actually have a lot of the photos in the blog books for 2007-2011 so I didn't want to do one of those years. I haven't decided  if I will make blog books AND photo books for the same years. I am thinking I will because I don't blog every photo I take and overkill is better than not enough.

Speaking of the blog, every photo I post here is also saved on Google storage. I pay $1.99 per month for that. It is my least favorite photo storage. It is a mess and not organized at all. Every time I try and organize it I get messages saying moving the photos will remove it from my blog so I just leave it a mess. I had to start paying that fee a few years ago or start a new blog. I consider it a blog fee more than a photo storage fee.

Whew! Long post! So, I'm curious... how to you back up and/or print your photos? Have you ever lost photos? Are you concerned about the safety of cloud storage?