A Decade

Ten years ago today I woke up at 4am after a few hours of sleep and started getting ready for my wedding.  My sister woke up and did my hair (beautifully), and I slowly did my makeup.  I drove to the temple in Bellevue with my parents and sang the Primary song "I Love To See The Temple" at the top of my lungs. 

Today, a decade later, I woke up at 4am after a few hours of sleep and started getting ready for work.  I nursed Rosie after taking a shower, quickly did my makeup and brushed by teeth while I dried my hair.  There is no wedding to look forward to, but today I am infinitely happier then I was on April 6, 2001. 

A decade has brought about much change for Tom and me.  Trips across the world, two apartments, one house, too many horribly painful goodbyes, countless wonderful friends, three children, one life-changing diagnosis, but most of all it has brought us closer then ever.  I'd be lying if I said the last ten years were all smiles and rainbows.  The last few years in particular have been especially hard, but there came a point when we both, individually, decided that our trials would make us stronger, not tear us apart.  That being said, a decade has also brought us so much joy.  For our anniversary today, I wanted to share with all who read this what a wonderful man Tom is.

Tom is the most giving, selfless person you will ever meet.  Most people have no idea how hard he works and all that he does for his family, his church, his friends - because he is also humble.  He is not one to brag about his accomplishments, his goodwill or charity, he simply does what needs to be done because he wants to help, and he expects nothing in return.  Since the day Rosie was born, Tom has gotten up and done breakfast for Harper and Nora nearly every single morning.  On the days that I work he manages to lovingly get three little girls ready for the day and get himself showered and dressed by 9am.  I tell you, that is far better then I can do!!  Tom cares genuinely and deeply for the people he serves in our church.  As Elder's Quorum President he spent many sleepless nights worrying and praying for families in need.  He did this alone, as he is also extremely respectful of other's privacy, and never once spoke to me about any of the hardships he was dealing with.  As Young Men's President he is passionately dedicated to teaching the teenage boys in our ward how to be men.  I have no doubt in my mind that those young men will be better missionaries, employees, and husbands because of Tom's example.

Tom is STUBBORN.  Not quite as stubborn as I am, but very close!  When he was in elementary school he started wrestling, and his coach pretty much told him he was no good and wouldn't go anywhere with it.  I don't know if the coach was simply a jackass, or if he knew Tom really well, because all that did was push him.  In high school he helped his team go undefeated, wrestled in the state championships twice, and his senior year he placed first in his weight class at state.  Tell Tom he can't do something and not only will he do it, he will do it better then anyone else has ever done it before.

Tom is a wonderful cook, and I like to joke that he is more of a housewife then I am.  Every Saturday morning he comes up with a new breakfast menu (peanut butter stuffed French toast, Belgian waffles made from scratch, homemade cinnamon syrup, etc.), and he usually makes it while watching all three kids and letting me sleep in.  For the last three summers he has canned peaches, pears, green beans, tomatoes, homemade spaghetti sauce, pizza sauce, and chili starter, homemade jams and freezers jams of all varieties (strawberry freezer is my favorite), 5 different kinds of salsa, homemade tomato soup, apple juice, grape juice, apple pie filling, zuchini relish, applesauce, apple butter, apple chutney, and even more that I can't think of off the top of my head.  And, since for the last three summers I have either been pregnant or up all night taking care of a screaming baby, Tom has done 90% of this by himself.  Granted our kitchen has also been a giant disaster of apple goo and boxes of cans....but have you TASTED his jalapeno jelly??

Tom is fearless.  I am seriously in awe of this at times.  Not only would he do anything physically (jump out of a plane, bungee jump, etc.), but he also has no fear when it comes to people.  He could walk up to anybody and say anything!  Thankfully he also has a lot of self control and he very rarely says anything rude or obnoxious (which I am also in awe of).  The funny part is that even when he IS rude, he does it with a smile and totally gets away with it.  It's hilarious.

Tom isn't perfect, but he is perfect for me.  He's taught me to be patient and to finish what I start.  He helps me calm down when I freak out over what I later realize is nothing.  He pushes me to go out and be social when I just want to sit at home and veg, which has helped me foster many cherished friendships that I likely wouldn't have had.  He helps me keep things in perspective until I realize that no matter what happens, everything will be OK because I still have him.

I love you so much, Tom.  Happy anniversary!

Colonoscopies

Yesterday Harper and Nora both had colonoscopies - a routine (albeit uncomfortable) procedure for most adults, but a very serious and potentially dangerous procedure for two little toddlers. Thankfully Nora is much bigger then she was at her last one (I realized yesterday that she was smaller then Rosie, a 4 month old baby), so it wasn't as traumatic for her this time. As for adults, the prep is the worst part for the kiddos. With Harper it was easy to explain to her that the doctor needs to look inside her tummy, so it needs to be empty. She wasn't exactly happy about not eating for 24 hours, but she understood. Nora, on the other hand, was a nightmare. The girl eats non-stop on any normal day, and has figured out how to open the door to the pantry, so trying to keep food away from her was a challenge - a very sad challenge. She definitely did not understand why we were starving her.

The morning of the appointment the girls also had to stop drinking (except for another dose of the magnesium citrate, which I literally had to force down Nora's throat). Tom took Rosie to Melani's house while I tried to hold down the fort with two hungry, tired, grumpy little girls. To top it off I had to give them both an enema. Have you ever given an enema to a toddler? I won't even mention how many I've done. There is a lot of screaming, crying, holding down, promising prizes, and a LOT of poop. The whole ordeal is quite disturbing.

Once we got to the hospital Harper decided to stop being so understanding - she was very thirsty and begging for a drink. Thankfully we were at a children's hospital, so they had a TV, DVD player and Toy Story on hand. Harper was quite content, so we got Nora prepped with her IV and I took her into the procedure room. For the third time in her very short life I held her while she was put to sleep. An hour later Dr. Pickens came out with her results. The wonderful news was that her small intestine looked great! Last year it was so inflamed there were patches of celia completely missing from her small intestine, and her stomach was so sensitive that it starting bleeding when the scope bumped the side. Today it looks completely normal, so we are very happy about that. Her large intestine, on the other hand, looks yucky. Last year it was inflamed, but not to the naked eye - we had to go off of biopsy results. Today there are large patches of open ulcers, and the left side was a very pale pink, almost white color.

Now it was Harper's turn, and she was very upset that she was going to be asleep while they looked in her tummy - she wanted to see it, too! So we promised her pictures and Tom took her into the procedure room while I stayed with Nora. It took Nora a while to wake up all the way, but once she did she was thrilled to get a drink of apple juice and some fishy crackers. Dr. Pickens came back with Harper's results after about an hour, and there was no good news. Last year Harper's small intestine wasn't even affected, and today it is very inflamed with several large ulcers, particularly around the bottom of the stomach where it opens to the small intestine. Last year her large intestine was covered in ulcers, and today it is the same. The ulcers in her large intestine look very different then the ones in her small intestine - they are very small and white in color. Dr. Pickens described them as "pin prick ulcers", and he's quite confused about them. They don't look like "typical" Crohns' ulcers (like her small intestine ulcers, and Nora's large intestine ulcers), but I think we can agree that nothing about these girls is "typical". Along with the regular blood work (blood counts, liver functions, iron levels, vitamin D levels, etc.), Harper also had some blood drawn for a Nod2/Card 15 mutation test. This is a genetic test that will look at the specific gene that is associated with Crohn's to see if it is mutated. If it is, Tom and I will do some genetic testing that will help determine Rosie's chances of also having Crohn's. We will hear back on this test in a few weeks, and both girls' biopsies and other blood work on Wednesday.

Wednesday will also be the day that we start their methotrexate. This is a once weekly injection that I will do here at home that will hopefully do double duty and work on their Crohn's and their arthritis. It takes about 6-8 weeks to really take affect, so for the next few months they'll be continuing their regular medications in addition to the methotrexate, but our hope is to eventually be on just the injections. Not really looking forward to giving shots to the girls, but when I explained to Harper that it would help her legs feel better she was very excited. She asked if she would be able to do gymnastics without her legs hurting, and it broke my heart. I really hope these girls get some relief soon.

Thank you all for your thoughts, prayers, concern and love for my girls. We so appreciate our wonderful friends and family!

Any Given Day

Sunday morning started out like any day - fighting to get Harper to put her clothes on, Nora to get garbage out of her mouth, all while trying to nurse Rosie and keep Scout from eating the girls' breakfast. After church we headed up to Tom's parents house for a birthday party and Harper began to complain of a headache. I told her to close her eyes and try to take a nap, but within minutes she was puking all over herself, her seat, and Tom's seat in front of her. It went on for a good five minutes, and after getting her bathed and cleaned up in Grandma and Grandpa's tub, she promptly began puking all over her clean PJ's and hair. For the next 2.5 hours she puked like clock work every 20 minutes until around 7:30pm she started having bloody diarrhea.

We were warned when the girls were diagnosed that a stomach flu in these girls could very quickly turn very dangerous - I realized we were at that point and paged her doctor. An hour later we were checking in to Mary Bridge emergency room. Harper was pale as a ghost and couldn't even sit herself up. She was continuing to convulse and puke up white foam on a regular basis, and was even more upset at the thought of a "poke" (IV). I quickly promised her a unicorn pillow pet, something she has asked for every time we step foot inside Fred Meyer. It cheered her up a bit, but needles are far from her favorite thing. Thankfully these guys really know what they're doing and the IV was in before she even knew it. Her tears quickly turned to surprised interest in "all the blood" coming out of her, and an hour later after a dose of zofran (anti-nausea) and a bag of IV fluids, she was laughing at Enchanted. Tom slipped away to feed the animals and made a stop at Fred Meyer and came back with the magical unicorn - needless to say Harper was EXTREMELY excited. "Daddy, it's what I ALWAYS, ALWAYS WANTED," repeated approximately 30 times in the next 2 minutes.

Harper's blood work showed a high white blood cell count, but normal inflammatory markers. Thankfully it was just a stomach flu and for now it looks like it didn't affect her Crohn's. It was a very scary reminder of how quickly things can get bad for these girls. On any given day, no matter how good they feel when they wake up, we could be rushing them to the ER by the afternoon. This summer we will be walking in the Seattle "Take Steps for Crohn's and Colitis" fundraising walk - please consider walking with us or donating to our team. I want a cure for my girls.

Looking Forward

I'm a little late in blogging about the new year, but better late then never I guess. And since part of my New Year's resolution is to just do my best and not feel guilty about the rest, I'm just fine with being a week late.

2010 was such a roller coaster of a year. January started with Harper being the second one in our little family to be diagnosed with Crohn's and I can't believe it's already been a year. Both her and Nora have their up's and down's, but another resolution this year is to get these girls feeling GREAT. We will be making lots of big decisions in the near future about their care and treatment plans.

Also a year ago this month I came home from Costa Rica and found out I was pregnant with Rosie. I'm pretty sure I've never been so terrified in my life. I already had two very sick little girls, and the guilt about bringing another one into a world of pain was killing me. The pregnancy was really hard also, probably some of the toughest months of my life. But as soon as I held this little girl I knew with all my heart that she came right when and where she was supposed to.

Harder then my own struggles this year was watching my friends and family go through theirs. 2010 was tough, but let me tell you, these guys are TOUGHER! Two women in particular have inspired and taught me so much this year about so many things. I don't think I could ever go through what either of them have been through this year, yet through it all they are two of the sweetest and most caring and giving women I have ever known. C & M, you amaze me.

2010 taught me that MOMS ROCK!! In addition to the two awesome moms mentioned above, my mom has been quite literally a lifesaver for me. This woman works full time, is married to a bishop, has her own calling in her ward, volunteers at the temple (as shift coordinator no less), and has still driven 30 miles back and forth to my house at least once every single week since Rosie was born to help with the girls, the housework, dinner, and anything/everything else. She has listened to me cry and vent about everything (and nothing), and has come with me and helped keep me sane at the girls' doctors appointments. I don't know how I will ever repay her - except to be the best mom that I possibly can. So in 2011, THIS mom is gonna rock, too!

This year I will celebrate my 30th birthday - unlike some people, I am actually happy about this. No telling if I will still feel that way in a month when it's actually staring me in the face, but for now I am looking forward to it. And for sure I am looking forward to my 10 year anniversary in April! Rosie thwarted our big trip plans, but we forgive her :) We'll postpone to later in the year after her birthday. 2011 will also bring my little sister her first baby - and another niece or nephew for me!

So no pressure 2011, but I have high expectations...here's hoping you live up to them.

Update

Part of me wants to delete the last post, but I know I shouldn't. We all have moments of weakness, and if nothing else I hope this blog is at least real.

The girls saw the rheumatologist again on Friday and there was good news and bad news. Mostly bad news. The good news is that sarcoidosis is off the table - it's just Crohn's. The bad news is that both Harper and Nora have arthritis and it's getting progressively worse. We will start them on maloxicam this week (anti-inflammatory) and see how things go. They both see the rheumatologist again in a month, and if things haven't gotten significantly better they will need to do a dose of prednisone and start on methotrexate. The good thing about methotrexate is that in addition to treating arthritis, it is also used for Crohn's and colitis. The bad things are that it is a weekly injection that I have to do (Harper is terrified of needles), and it's chemo. Yeah, I realize it is a tiny, minuscule fraction of the dose that they would use for cancer, but it's still chemo. But if it will do double duty and take the tummy and joint pain away from both of my girls, I will love it. As made obvious in my last post, I am tired of them constantly being in pain.

As for the Crohn's part of the Crohn's (as opposed to the arthritis part of the Crohn's), the girls' GI doc spoke with their rheumatologist on Friday and he will get back to me this week about where we go from here. We had previously decided to re-scope both girls at their one year mark, and that has come for both of them. With the disease obviously progressing, I'm sure we will have to go ahead with that plan.

The great news is that both girls' CBC is still normal - neither have been anemic for a few months now! Yay!

Selfishness

This post is going to seem really selfish. I'm just warning you in advance. Sometimes you just have to get it off your chest and then move on.

First off, no matter what I have to deal with while taking care of my two kids with Crohn's, it's no where near as bad as having Crohn's. I get that. But can I just say that I am so tired of it? There are lots of things I'm really grateful for - good doctors, decent insurance, medicine that (sometimes) takes my babies' pain away, etc. But today I'm going to vent about the crap because it's building up and I gotta dump it somewhere.

It's been a little over a year since Nora was diagnosed and in that time I have racked up thousands upon thousands of dollars in medical bills. Pediatric colonoscopies are really expensive. Even if Nora let me sleep through the night I'm pretty sure I wouldn't be able to as I'd be too busy thinking of all the money that is going to the damn anaesthesiologist instead of a down payment for a house that will actually fit all my kids. I am tired of getting sent to collections for bills that I've already paid, I'm tired of spending my free time hauling my kids to the hospital for blood draws instead of taking them to the park. I'm tired of being so tired that I actually considered buying Depends so I don't have to get up to go to the bathroom. But most of all, I'm tired of watching my kids go through the crap they have to go to. I'm tired of hearing them scream in pain and I'm tired of not being able to do anything about it.

Ok, thanks for letting me vent - back to being a mom.

Magical Uterus and a Crohn's Update.

As I mentioned in my "Sisters" post in May, I am one of three sisters, the oldest born Oct. 3, the next (me) born Feb. 13, and the youngest born Sept. 26. My oldest daughter was born Sept. 26, my next born Feb. 13, and just 4 weeks ago my youngest little girl was born on my oldest sister's birthday, Oct. 3. To be honest I really didn't think it would happen - it's just too crazy! But apparently I have a magical uterus.

In late July at 30 weeks pregnant I went into early labor. I started dilating and I was on medication to stop the contractions. By 36 weeks I had made 3 trips to the hospital, gotten 3 shots of tributiline and had dilated to 5cm and it was only the beginning of September. There was just no way I was going to make it 4 more weeks! But somehow, miraculously (and thankfully), I made it to just one day before my due date and Rosalynd Eliza was born healthy and happy. Granted the 10 weeks of labor and bed rest were anything but fun, but it was so worth it for her to stay in there and grow as much as she could.

Harper and Nora absolutely adore their little sister and it is the best thing in the world to see them kiss and cuddle her. They are both very fascinated with me nursing Rosie and Harper keeps asking me if there are hands and spoons inside

me that make the milk.

And speaking of Harper and Nora, they are doing pretty well. Their GI is still having doubts about the Crohn's diagnosis and had them see a rheumatologist at Children's to test for Blau Syndrome (familial sarcoidosis). So far it doesn't look like that's what they have, although the doc did confirm that Harper has arthritis in her knees and ankles (which does happen with Crohn's). She will be starting on a non-steroidal anti-inflammatory in addition to the anti-inflammatory that she takes for her GI tract. Nora has also started complaining about pain in her knees so we'll see what happens with that. The really great news is that both girls are no longer anemic, both inflammatory markers are normal and both are gaining weight (though Nora STILL isn't on the growth chart). They follow up with the rheumatologist and GI next month, and they see an opthamologist (you can get granulomas in your eyes with sarcoidosis) in a few weeks. Over all I think things look pretty good. We are just hoping and praying that Rosie won't have to go through what these girls have. Even if she does end up having Crohn's, hopefully we will catch it quickly knowing what we now know. She was extremely fussy for about a week and her pediatrician prescribed her some meds for acid reflux - I had a horrible flashback to Nora's one month check up when the doc prescribed the same stuff (and was having the same symptoms), but Rosie is eating fine and gaining weight - both things Nora did NOT do. I just have to keep reminding myself that every time she cries it doesn't necessarily mean she has Crohn's....she also gets poopy diapers and other normal baby stuff. I'm just massively paranoid.