Tuesday, October 21, 2008

God is Good!

Hayden's scan was clear!! No sign of tumors...Praise God! For those of you that are new to our story. Hayden has a 50-60% chance of developing Wilm's Tumor on his kidneys because of his genetic disorder. He has to have kidney ultrasound every three months to check for these. Visit Hayden's website for more info, www.caringbridge.org/visit/hayden. A lot of people say. "I don't see how you do that every three months. I would be a mess." Well I might put up a good front, but a few days before the ultrasound my anxiety takes over. I am moody, emotional, & I call no one because I just don't want to talk. I clean and organize my house, just in case. I am superstitious......before Hayden's first surgery on his eyes at eight weeks of age I did this. I had to have the house perfect in case our worst fear came true...something went majorly wrong and we had to have family or friends here with the other kids. If this did happen I wanted the person caring for Maddie and Jaxon not to be burdened and for it to be as easy as possible for them to care for the kids. Everyone tells me I'm crazy and it wouldn't matter, but I would worry about it. That's just how I am. I know you think I'm nuts and maybe I am, but it is working for me......Hayden's appointments have been good and I am sticking to MY WAY! We hear a lot, "You guys are stronger than I would be", no we are really not. When you are told there is something wrong with your new baby of course you ask "why?" and you are absolutely devestated, but when you are put into this kind of situation your instincts just take over and you just do what you have to do. It took me a little while to get there though. I remember coming home from the hospital with Hayden hoping everything would just disappear. Hoping and praying we could live a "normal" life with our baby boy. We came home on a Friday and we had an appointment scheduled to see an eye doctor that Monday. After we were home a few hours that doctor called and told us he didn't feel he was experienced enough to provide Hayden the best care and referred us to a doctor at The Children's Hospital in Philadelphia. He also mentioned that he thought Hayden had something called WAGR Syndrome. He went on to say there were only 300 cases in the world of this. My husband said to him, "You mean 300 in our state, or the US?" He said, "No...the WORLD" We immediately started researching on the internet. I know they tell you not to do that, but how can you not. Brian found an organization all about WAGR Syndrome and a lady named Kelly who's daughter had WAGR. He phoned her...she wasn't home, she was on vacation. He left a message and a few hours later Kelly called back. I answered and immediately started crying telling her I couldn't talk to her and that she would have to talk to Brian. Little did we know Kelly and this Organization would totally change our lives. When you have a child with special needs you will do everything in your power to provide the best care medically and educationally to help them live a normal life. With help from the IWSA we are doing that. And I hope by being an officer now for the IWSA I am helping to make the next family life who's child is diagnosed a little bit easier. Okay, that got a little longer then I thought it would, but moral of the story. You can do anything when a situation that looks bleak is thrown in front of you out of the blue. You don't think....you just do!!!
Here is Hayden DOING what he HAS to DO, getting his ultrasound......
Thumbs up!!!! Getting the ALL CLEAR from the doctor! Mommy with thumbs up and relief!!!! (Hayden took this pic by the way....pretty good huh?!) Two of my favorite guys! I love this picture! Can you see the relief and joy in our faces? It was a long day but in the end......it doesn't get any better than this!!!!!!!

1 comment:

Anonymous said...

Hey Julie,
Praise the Lord for Hayden's "thumbs up" results. Julie, You have to do what makes you feel at ease. Facing this every 3 months certainly can't be easy.... Hayden has his prayer warriors here for any support you may need. Just wanted to let you know that your not alone on this journey.......we are here walking along beside you.~~~Darlene