Friday, June 27, 2014

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. 

Sunday, June 22, 2014

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"