We just got back from Brady's Neurology appointment with Great GREAT news! They don't want to see him anymore!! Well, not that they don't want to... but there is no reason to!
Brady had his first seizure at 3 days old and his last one June of last year (2009), and because he is so so so much better, there is no reason to be followed by a Neurologist.
Let me give you just a bit of information here..
Infantile spasms is one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation.
The odds we were given when we were told he had IS were scary.. I still remember his Neurologist telling me not to go home and Google it, because it would scare the hell out of me. So whats the first thing I did... had Chris and my momma google it and they broke it to me gently. We were told that only 10% of children with IS would go on to live normal lives and the remaining 90% would have some kind on long term problems. Of that 90%, 70% would be labeled as "retarded" a word I HATE!
That was all told to us in January of 2009. A day that I will remember for the rest of my life. I remember right when I was about to walk out of the Dr.s office I remembered that I had taken a video with my phone of him doing something "weird" and I wanted to show her. When she watched that video she turned white as a ghost and asked if she could take my phone to show the other Dr's there. She came back in and said that we needed to go over to the hospital right away for an EEG. She said, she wasn't sure, but it looked like IS and NOT to Google it! True to my word, I didn't, but when mom and Chris arrived at the hospital they had already looked... needless to say, they were quite. After a very quick EEG we got the diagnosis that we did NOT want. It was Infantile Spasms. We were instructed to stop all vaccines and to take him out of daycare. We were told that we were going to have to do a very VERY expensive treatment. Each vial of medicine would cost about $25,000 and we would need around 4 or 5. We were told we would do bi-monthly EEG's and weekly Doctor's visits to check his Blood Pressure (a horrible side effect of the treatment). Needless to say, we were scared. Our lives were just sent spinning out of OUR control.
This was our first baby. We had only been parents for 3 months and now this! The seizures were bad enough, but now they had evolved into the worst possible type. The most catastrophic type. The most crippling type. The type that we weren't sure if we could beat. But 18 months later, the type that we did beat! Well, actually sooner than that, but TODAY, we were told that we didn't need to see our Neurologist anymore. A Doctor that we were sure we were going to see until Brady was old enough to use and adult Dr. We never imagined that we would be done with her in 18 months! Don't get me wrong, it was a LOOOOOONNNGG 18 months, but its was a short 18 months too.
For the families out there who are still trying different treatments every week for their babies because the ACTH didn't work for them, it was a short 18 months.For the families who can not get their babies seizures under control and watch them have hundreds of debilitating spasms every day, it was a short 18 months. For the families who's lives have been crazy with surgeries to remove half their babies brain, it was a short 18 months. For the families who lost their precious babies to this horrible monster, it was a short 18 months.
I say all that so you know just how much of a miracle this truly is! In my book, this is a Walking on Water, Blind will see, Dead will rise, Water to Wine, Feed 5000 with a few fish MIRACLE! Yes, we had tons of Doctors from Blair E. Batson, all the way up to Memphis helping with Brady's case over the past 2 years, but I give thanks today to the Great Physician Jesus Christ for the ultimate healing he preformed on my son.
What a testimony he will have to share the works of Jesus with all his friends and peers, and co-workers, and ball team players one day.
Thank you to everyone who has ever said a prayer to God for my Brady. Thank you Thank you Thank you! He is alive and well today because of those prayers. I bet my life on it!
Thank you to ALL the Doctor's that had anything to do with Brady's case... there are tons! But we saw Doctors today that we have been seeing since Brady was born and to see them stand AMAZED at the fact that he could say a word, walk, run, high five, wave bye-bye, throw a ball (thanks, Dr. Lee)... It truly is a blessing. We have been truly blessed. Iwill never forget the faces of those Doctors when they saw Brady. Maybe Brady will grow up, hear these stories, and choose to do what they do so he can witness miracles like this for himself. (hey a mother can dream)
Just a Special thank you....
Thank you Dr. Parker! Sweet Sweet Sweet Dr. Parker. She is forever on my Christmas card list. She was not only a Dr. to Brady, but she was like another Grandmother to him. She wouldn't let him leave without kissing his head every visit, but today he kept leaning in wanted more kisses.. He loves her... we do to.
I am not going to list them, because I will forget someone and feel horrible! But you know who you are. THANK YOU!
To God be the Glory,
Jenny
