A quick up date...and some silliness

Austin update = He has gained back 8 of the 12 lbs he lost :) and we started the weaning off of the steroids today yippee. He is back in school and bugging his sisters constantly. Looks like the weekly shots of medication are doing their job.

The silliness part: To relieve some of the stress  of these last few months I took the older girls to a concert. It was at a teeny, tiny place in SLC. There were 5 bands that played. My friend Mindy also came. We had so much fun. Here are some of the pictures.

 They stamped our hands with this huge flower stamp...so we decided to make a star and show you the flowers haha

Funny story...see that girl that photo bombed us? We didn't know her, but she was really friendly. She told us that she was an American Idol, we sort of didn't believe her. Until on the drive home...Mindy decided to look her up on google...yep there she was Maddie Penrose, American Idol Season 11.

Mindy and I...and our new friend, American Idol, Maddie Penrose :) It was a fun night and some much needed girl time.

What is Crohn's

Wikipedia definition:

Crohn's disease, also known as Crohn syndrome and regional enteritis, is a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is at its worst), vomiting (can be continuous), or weight loss, but may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration. Crohn's disease is caused by interactions between environmental, immunological and bacterial factors in genetically susceptible individuals.^[4][5][6] This results in a chronic inflammatory disorder, in which the body's immune system attacks the gastrointestinal tract possibly directed at microbial antigens.Crohn's disease has wrongly been described as an autoimmune disease in the past; recent investigators have described it as an immune deficiency state.

 Crohn's disease tends to present initially in the teens and twenties, with another peak incidence in the fifties to seventies, although the disease can occur at any age.There is no known pharmaceutical or surgical cure for Crohn's disease. Treatment options are restricted to controlling symptoms, maintaining remission, and preventing relapse. 

Right now Austin's red blood cells are attacking themselves...the immune system is over active in some areas of his body and under active in other areas. They did a blood test to see if the immunizations he was given as an infant and toddler were "accepted" by his body. All of them were NOT :( So that is a little more proof that he has had this in his body since he was born, the flu he got in December just triggered it into a full blown flare. There are many treatments out there, some are pretty crazy, and others are totally worth looking into. Right now we are just trying to get him into remission, then we will worry about maintaining it. Some of the treatments will NOT work with Austin for the fact that they found evidence of crohn's in multiple sites in his GI track. Right now we are trying to slowly wean him off the steroids he is on. We started giving him a shot of Methotrexate once a week (it is a form of Chemo therapy). It is so scary reading the side effects this can have, but we truly felt this was the right path for him at this time. Depending on how he reacts to this medication will determine how long he has to be on it. There are a lot of misconceptions that this disease can be totally controlled by diet...and for some it can, for others it cannot. We are prayerfully considering all of our options and are giving him the treatments that we feel are right for him. We have faith that our Heavenly Father knows exactly how and what we should be doing for our little boy.

Reality is setting in.

Our life has been a roller coaster for a little while now. 

I am not even sure how to express what I am feeling half of the time.

Austin was official diagnosed with Crohn's disease this Monday. 

I have learned a lot about the disease already, and yet still feel very uneducated on the subject. I have learned that it affects every person differently. Depending on where the disease is found in the GI track can also affect treatment options and symptoms. Austin had multiple biopsies taken and crohns was found in every part...from  his esophagus down to his rectum. The above picture was taken at the Dr. appointment where we decided he needed a colonoscopy and endoscopy to find out for sure if he had crohns. His symptoms were already leading us in that direction.

 It is amazing how quickly a persons life can change in just a few short weeks. He lost 12 lbs, he missed 3 weeks of school in a row. When he was doing the cleanse for the testing he even told me he thought he was going to die. As a mother it was heartbreaking to watch him suffer. He spent so much time in the bathroom  that we started to do homework in there with him. My sweet angel of a mother came down for a couple of days to help me. She would read him stories while he sat on the toilet. At his lowest point he was throwing up blood and curled up in a ball crying for most of the day. I lost it!!! I was not proud of my behavior, but a medical assistant up at PCMC got an ear full and I may have thrown the phone across the room. And yes when I saw that medical assistant again I apologized :) He laughed and said you would be surprised how many phone calls he gets like that...good to know I am not the only crazy parent out there.

This is my brave boy and Shawn getting ready for the procedure. He looks so skinny here. He was all skin and bones, he reminded me of a Holocaust survivor. It brought me to tears to hug his little, frail body. I could see all of his bones, count his ribs, and carry him up the stairs in one arm. His joints hurt so bad that he couldn't even crawl up the stairs. By the time we got to the date of the procedure we were more then ready for some answers, good or bad...and medication.

Hanging out in recovery. He loved the slushy they gave him.

The conference with the Dr. after the procedure was eye opening. We had to wait for 5 days for pathology to get done testing the biopsies, but the signs of crohns disease were everywhere. I cried, Shawn cried, the Dr. even shed a tear or two. We put Austin on a steroid medication to help with the inflammation in his bowels, and began waiting for the definite diagnosis. Within 24 hours he started to show signs of improvement. The first thing he said when he was totally awake  was "Man, I just want a Baconator from Wendy's." My boy was coming back to me! He hadn't eaten much of anything in 2 months. Within 3 days he was walking up the stairs on his own, he was eating like crazy and even teasing his sisters again.

So what is reality for us now...lots of Dr. visits. We have home health coming to show me how to give my son weekly injections of medication. Journeling his food intake...and the bathroom output of that same food, haha. He has even gained back 4 lbs. He is a strong, brave, good spirited little boy. We as a family still have tons to learn, and we get to make some adjustments. The older girls have been huge helpers and seem to understand how all of our lives will be changed forever. Kambree on the other hand...she is the baby of the family. She is having a harder time understanding why Austin gets special treatment and why he misses so much school. It will just take some time to get use to.

I just wanted to thank you all again for all the prayers, fun gifts you brought over, amazing food and treats, phone calls, messages and notes, and especially your friendship. I will try to update how we ALL are doing a little more often. I never intended my blog to be about "just Austin", it will always be about the whole family. But for a little while it might be more about him, and that is OK :)

The words "Thank you" never feel adequate enough

Meet my funny boy :) Mr. Austin ... wearing a fake mustache!

Austin has been sick for about 2 months, on and off. We are trying really hard to get him better.

 Today we asked friends and family to dedicate a little time to him by fasting and or saying an extra prayer just for him.

 

The request for this was answered by so many friends and family it was overwhelming! The desire to serve my son has lifted not only his spirits but mine as well. I grew up in a small town, where everyone knows everyone.  Everyone knows your business...the good and the bad.  When you live in a big city you lose that sense of "small town community/family." Thankfully because of modern technology I was able to connect with all of the family and friends I have all over the world in just a few short minutes.  That sense of family and close knit community is instantly renewed. I am in awe at how quickly people responded with quick messages of love and hope. My faith has been strengthened by the feelings of peace and comfort that has come from a direct result of so many people petitioning our Heavenly Father to help us find some answers.

This blog update is to say thank you!!! Thank you for sharing your time with us, your love with us, and your friendship with us. There are too many people to thank personally...but just know that every message sent, every fb "like" and every comment is appreciated. On most days they are needed more than anything...just knowing people care, are concerned, and are sending hope our way makes a huge difference. 

Every day with Austin is different, we have good days and bad days. Last Tuesday he went to school for 4 hours :) and today he made it to 20 minutes of sacrament meeting. He tries so hard to be brave, but there are days we all just want to curl up in a ball and cry...and that is OK too.

We know our Heavenly Father is with us, and mindful of our struggles. We can do this...we can do this...has become our new family motto. 

Thanks again :)

A little sledding to entertain the kids

With all this cold weather and snow we decided it was a good day to go sledding. We went with some friends and spent 2 hours going down the hill and walking back up. It was fun, but exhausting!

Who would have guessed...

A clean dryer can make a girl so happy!

 I mentioned the other day to one of my friends how it was taking 2 and 1/2 cycles for my big loads of laundry to dry. It was frustrating and I felt like I was wasting a lot of power. That is when she said "um...I know what your problem could be. I bet there is a ton of lint in your dryer that just needs to be cleaned out." And then the magical words came out of her mouth "I know how to clean it and will come over if you want me to and show you how"!!!! I jumped at the chance.

First we moved the dryer away from the wall, and these are the treasures we found.

She took the top off and then the back.

There was so much lint hidden in random spots it was amazing...OK maybe it was only amazing to me :)

She unhooked the vent hose and found all this fabulous stuff. Included was a few bobby pins, a lot of wheat (long story behind that one) elastics, and a paper clip.

She shortened up the the vent hose and cleaned it out. In the spring she is going to come over and help me replace the whole vent tubing...now that should be fun :)

Thank you Mindy for helping me(she actually did all the work, I took pictures and observed. I might have handed her a screw driver once or twice). I learned a lot and am now enjoying the shorter time it takes to dry my clothes, it only takes 1 and 1/2 cycles. I am a happy girl again, haha.

So here is the question of the day...what little things make you happy or brighten your day?

We will just call it another adventure

Christmas has come and gone. We had a great time with family and friends. Lots of parties, dance recitals, presents, and food. 

Our little adventure decided to start a few days after Christmas. We were driving to the store when a dog ran into our van. Let me repeat that...A DOG RAN INTO OUR VAN. We didn't hit it, it hit us, bounced off, and ran away. It was a big dog that was black. We looked for it, but never found it. But this is the damage it did to our van :(

Then on New Years Eve another adventure. I smelled something funny, it almost smelled like wet dog. I was walking around the house trying to figure out where the smell was coming from when I went down stairs and there was water, everywhere. It was up to the steps! I screamed for Shawn (who just happened to have taken the day off from work about an hour before all this happened)

He hurried and turned off the water valve. Water was spraying out of the TOP of the water heater. There was water in the hall, in the bathroom, in the food storage room, in the girls room, in Austins room and under the stairs. So we spent all day cleaning up the mess and replacing the old water heater (which was only 11 years old...come on, they should last 30, right?) A good friend of ours is a plumber and came right over and helped us replace it. Here is the new beauty...

I do love it. I do appreciate my hot water. I know these little "adventures" could have been so much worse. We could have actually ran over the dog and killed it. We could have been out of town and had water running for days and days. Shawn could have been at work and I would have had no idea how to make the water stop, I now know where the water shut off is...lesson learned.

 I am trying to look at the bright side as my checking account looks a little sad. 

I was joking about how one of my goals for 2012 was to "clean out under the stairs" good thing I did that before the year ended, I only had about 3 hours to spare :)