Update on Amanda

Many family has wondered how Amanda has been doing. She is currently off of the steroid they had put her on along with a few other things that she is done with now. For now she is only on the Crohn's medication 6MP.  This past week she has had some pain in the esophagus area again which she has not had for a while now. We try to adjust her diet and just trying to figure out what may cause it to act up.  She continues to get blood work done every 2 weeks to check her inflammatory markers and to make sure her liver is processing the medication correctly.  Her life has changed in the fact that she just can not go out and eat whatever every other teenager is eating, she is tired more often and needs to listen to her body and rest when she feels that way. Her immune system is very low right now from the steroid. It wiped out the good bacteria and the bad out of her body so now the body has to rebuild.  Food and nutrients are very important for her overall health and strength. This could be a challenge since school just started and many kids get sick and will be around her.  But all in all, she makes the best of each day and it has not really stopped her from doing all the things she loves to do. She has an amazing heart! We continue to pray for remission and for God to bring the right people into our lives that may be of some help and or support!

she loves to be my little model and help me practice my fun with photography!!

IF any one reading this blog struggles with autoimmune this is a great book and a must have!!!

Summer here and gone

It is so hard to believe summer is coming to a close. This summer has been different in many ways for sure. So many different doctor appointments with many of us going through different things. I think between us all we have covered all the pretty major testings that are done. From MRI's to Eco cardiograms to Colonoscopys and a couple different surgery's. We have had cars break down and water heaters bust out about all in the same 3 week time frame. Despite all that somehow we still managed to get in some fun or relaxation where we could. Times can be hard and tough,  but you have to keep standing tall and fight through it!! 

Girl Cousin Fun!! From 15 to 2!!

 I love this picture of the kids Great Grandma Hope!! She is a precious sweet Grandma. So caring and never ever forgets to send cards on our birthdays. I wish we lived closer to her to see her every single day!! Love you so much Grandma!!

 Our kids and my brothers two little munchkins!! 

 Got in several camp fires and gazing at the stars!! My favorite way to relax, besides the beach!!

 Probably one of Gracies favorite things to do was get to the water park!!

Little Eun Turns 6

I can not comprehend how much time seems to go by so fast. My sweet little Gracie turned 6 on August 4th. Her bright smile, sweet giggles that go on for hours and her little sassy but sweet personality make every thing so complete!! If you know her well, you know with out a doubt that Frozen is her all time favorite movie. She knows it word by word and acts it out in costume every single time she watches it, and trust me she watches it ALOT!! :-)  Happy Birthday My sweet Eun!! We Love you with all our hearts!!

Since we had the party Sunday so more people could make it, On Monday we went on a picnic to the park! My little sweetie is growing up way too fast. Kindergarten is right around the corner

The Other Side Of The Curtain-----Of Dance

If you have not been a regular reader of my blog you would not know that for 23 years I was a dancer and for 12 years I owned my own dance business and taught many classes to many ages of children. Dance has always been my life. The past 3 years now my studio has been closed and I miss it greatly. My older daughter Amanda grew up in my studio and dance from the time she was almost 2. Gracie was able to dance for one year with me.

This summer I put Grace into a summer dance camp in a nearing town. "Hip Hop camp".  So for a week now I have been on "other side of the window".  A friend I know was there with her daughter too and said "see being on this side isn't so bad". I said "no i would rather be teaching this class".   I found myself judging the teaching at first because the class for a camp is not what I expected it to be. It was mixed with K-3rd Grade. Big age difference. The dance and style was also 3rd grade level dance class. They all come in and are just shown the entire dance routine and now work on it. I could see Grace was overwhelmed, but she pushed through.  I just wondered where are the ribbon sticks, music props, and creative movement that 5 years olds love so much? Well I guess that is not what this camp is. It made me realize what a great teacher and great curriculum I had for my little ones of this age and no wonder why those classes for me were full!

In the mean time, Gracie keeps pushing through and really starts catching on to this pretty hard and fast routine!! By day 3 she was having fun. Got a t-shirt and will be dancing on stage at the down town summer festival. To see her smiling and having fun melted my heart. She did awesome and by the end of the week had a fun time and was proud she learned "hip hop"

Summer & update on Amanda

Summer seems to be flying by so fast. Course for us it really did not start up till July. Most of April May and June were spent in Dr offices. This week I take Amanda for her first check up since her diagnoses and since they have started her on the 6MP drug for Crohns.  So I am preparing for another long road trip this week. Today she has to get some blood drawn because it has been 2 weeks since she started that drug and they need to see how her body is responding to it all. The day can not come soon enough to get her off this steroid. It really seems to mess with her moods and she seems to get no sleep at night because it keeps her up. She is on 4 different things right now, my cabinet looks like I am a pharmacist.  I am making an apt to meet with someone in our area that is highly been recommended for advice on diet and vitamin health. I can't wait to meet with her. This will all be a learn as we go kind of thing. Hopefully her apt all goes well and blood work looks great. 

This weekend took the kids to a fun little place they had been to when little. Gracie really enjoyed it and especially seeing the baby bears. Summer is going too fast and I just want to get the kids out and enjoy some things before school starts again!! 

How To Reprogram Your Mind (for Positive Thinking)

I have been loving following Brendon Burchard-Live. Love. Matter.

I especially love his you tube post on Positive thinking and reprograming your mind to do so.

The highest achievers in the world at one point said to themselves, "you know what, I need to discipline my mind to support me. Even when my mind comes up with automatic thoughts, I want those to be positive, buoyant, confident and strong, something that leads me to healthy decisions for my life-not just those that protect me or freak me out."



After watching this video I have decided to try the challenge he puts out there for the next 30 days. I could use a good dose of getting my mind on track and thinking more positive thoughts. It makes sense that when we think negative we are conditioning our mind to do just that. But if we condition our minds to REDIRECT those negative thoughts into positive ones our whole life experience will sure be more peaceful.  I encourage anyone to watch the video and tell me what your thoughts are..

4th of July

 This fourth of July was filled with carnivals, parades, and great fireworks displays.  I hope you all had a great holiday weekend!! Happy Birthday America!!

Tradition has it we must go on the scrambler!

my kids and their friends that put on a great fireworks display!! :-))

18 already?

How do kids grow up so fast? It seems like yesterday this little/bit guy was just a toddler building forts and all kinds of contraptions all around the house, full of energy and a free spirit. Now what feels like over night he is a young man that I am so very proud of. He loves his family, a hard worker, thoughtful and kind. Yep that is my teenage son. Some people say that the teen years are terrible for them. I can say that with our two teens it has been very enjoyable as they are growing up. Very proud mommy! Bailey's party was a total surprise. I was working on it for a month or so and was sure hoping no one would spill the beans.  I was able to get his best friend that lives out of town to also come along with a few more of his closest buddies and a lot of our family.  The weekend was a hit and a total surprise!! :-)

He loves Buffalo Wild Wings..so one stop we had to make!! Loaded him up on wings!! 

Update On my Daughter

Just a few days ago Amanda started the 6MP drug for Crohns.  I say that with mixed feelings. Lets just say the warnings on many things can scare the crap out of you. She however was so excited to get started on it. I have just been praying that it makes her feel better. This drug will take about 6-8 weeks before you see full results from it. By then she will be off the steroid and close to being done with the other 2.  My cabinet now looks officially like I am a pharmacist!  The past 2 days I am happy to report that she is feeling much better. That makes me feel good. The last thing as a parent you want, is to see your child in a huge amount of pain.

I know this will be a learning thing..and we learn as we go. ..for now Grateful for a great day today !!

So live it !!

Dealing with the reality of change-From a Mothers point of view

This week has been a huge amount of different emotions. My heart aches for my daughter and her having to deal with all of this at the young age of 15. It doesn't seem fare. Yet what in life is right. It is a reminder that we are not in control of really anything in this life. As a very protective mother, this one is hard for me. I want to take away the Crohn's, I want it to not exist, I want to control it and yet I can't. I am at the Mercy of God and Doctors. There are days I am all over it and start reading and educating myself, and days this week that i experienced total shut down and did not want to talk to one person. I was on information over load from talking to doctors and reading to try and understand this disease that makes no sense to me!! The one thing i can control is educating myself and learning more about what helps this disease go into remission. And trust me I am all over all of that!!! 

On a good note, I am reading that they are making some good advances, I hope and I pray there is a cure for this some day soon. I try to research doctors, as I want her having the very best care. I want to be sure the medication they want her on for long term doesn't have to be so long term, because I pray she will just go into remission.  All in all, I want my daughter to feel well, to not have pain and live a normal life. Which I read that most people do. 

Now today, I feel my feet are back under me again. So back onto researching mode again. Nutrition is key and finding the right supplements and vitamins are crucial. I am getting a book called the "makers diet" this week. I hope to find some good nutrition ideas. I want to find my daughter a "buddy" someone to talk to that is dealing with Crohn's as well. I think that will be important for her. 

I do not know why God allowed this, but I DO know and believe that GOD will put all this to good. I believe once we get a handle on all this, that Amanda can live a normal life. We will learn as we go and nutrition  is going to be key.  

All mothers out there that see their children hurt or feel sick know what I am feeling. Unless you have walked in these shoes, you don't know. I ask for your prayers for us. 

Answers are Hard to hear when they come with a diagnoses like this....

The past couple of months our oldest daughter has struggled with stomach issues. We have had several tests run, that lead to just more and more tests. But never getting any solid answers and just frustration. This past week while I was at work.  I got a call saying they wanted to admit her (6 hours away) into Sandfords Children's Hospitol to do further testing, much more invasive kinds of test to accually go in and see what is going on. I needed to have her there by midnight in order to get the tests scheduled and going for the next couple of days. So, I dropped everything and Amanda and I headed down the road. Thankfully, this lead us to a great Dr,  a specialist that was a Pediatric Gastroenteroligist.

She had an MRI the very next day and then the following day an endoscope and colonoscopy. Talk about being a trooper. She was so strong and positive through all these tests! I am so proud of her!

Through these tests the diagnosis is Crohn's Disease.  This was something we had talked to previous doctors about so we were a little familiar with it. Something we had hoped would not be the case. Answers are good, but they are very hard to hear when you are dealing with the life change for your sweet daughter!! My heart at this moment just heard the word and not all the facts. This all takes time to soak in.  Being strong for my daughter became most important, but inside I was falling apart and felt alone in a foreign land!!

What is Crohn's Disease?
Crohn's disease is an inflammation of the intestines (bowel).  It can affect the part of the small intestine, the colon, or like my daughter it is also found in her esophogus.  Crohn's causes swelling, redess, and even sores (ulcers) in the intestines. The ulcers can make a hole in the wall of the intestine, which can cause life threatening infection and bleeding. Both the swelling and scar tissue from the sores can block the passage of food. This is why she lost 10 lbs in 2 months.

How does this occur?
The cause is unknown. It is believed to the an autoimmune problem. This means that the body's defenses against infection are attacking your own tissue, but this has not been proven.

So how will they treat her?
Well for now she is on a powerful steroid, and a couple other meds to help calm things down and get her pain free. For long term though she will be put on a medicine for the Crohn's and from my understanding, help control it or heal some of the ulcerations. Medical science has no cure. But i know God is more powerful!!!  I will be making alot of adjustments to her diet. So much has to do with what you eat that can cause a "flare up".  I have so much to learn and this is just the beginning!

My heart?
Well my heart breaks for my daughter. She has been so healthy her whole entire life. Only on antibiotics maybe 2 or 3 times in her life. She is only 15. I wish she did not have to deal with this, but we will do all we can to educate ourselves and get the very best for her!! I have alot of emotions and one recently was asking God WHY!!   But, here we are. We learn, we adjust things, educated our selves, get in contact with others who have this disease. Always going to be learning what works or doesn't work for her. She will have a normal life, can have children, and I pray for her to go into remission once day soon!!  I love her more than life!!

As Amanda said "We came and We Conquered"