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 :)