Our New Beginning........

When we left Memphis, we left with good news about the test but we were still clueless as to what happened to the normal healthy active little Haygen. It was frustrating but on the other hand it was a relief because all the big tests were normal. We also starting weaning Haygen off the seizure meds and got the feeding tube. (I no longer had to put it through his nose anymore YAY) Since the surgery, when he pulls it out now, I have to put a new "micky" button in the hole in his little stomach and then fill the balloon up with water. NOT FUN but definitely better than the nose.

It had been a few weeks since we started lowering the dosages of his meds and something was different about him. I started noticing his seizures were lowering and he looked SO alert it was like WOW. One day I realized, Oh My Goodness he had had NO SEIZURES. There has never been a day without seizures since he started seizing in February 2008. I'm pretty sure my whole neighborhood heard me that day :) Watching your child or loved one seize non stop on a daily basis takes a tremendous toll on you especially cause there's nothing you can do but hold them, comfort them and love them. Haygen has been seizure free ever since that day.

Then one day I'm almost positive it was August 28, 2010, Haygen's nurse from his school called my office and asked me "Guess who just walked in my office by their self?" and I responded "I have no idea" me and his nurse talked a lot so this wasn't unusual for us. And she said "HAYGEN" yea I think I fell out of my chair pretty sure I did. Haygen walking into her office never crossed my mind because he wasn't showing any signs of really trying to walk. He was crawling some but not pulling up a lot where you would think he was trying too anyway. I was completely shocked. Crying, laughing, thanking God and everything and everyone. So after work this is what I saw..........I didn't know whether to laugh, cry or what cause he still amazes me. :) This was the VERY first time I seen him walk. I went in the school with the video on :)

 

 

Haygen never slowed down either. He was soon running and jumping and to this day in December 2013, he still out runs me. He's a fast little thing too. When we went back to Memphis for our follow-up, the neurologist said 5 words to me MAYBE. He sat there for an hour and half just watching Haygen, he was amazed. He was watching him play, walk, jump, and throw toys. He said "I don't know why he's getting better." I just turned to him and said "I do and its PRAYERS, Lots of answered prayers!!" We have seen some of the best doctors there is and I'm here to tell you God is the "REAL" doctor. Two of the most amazing children's hospitals said he would never walk again. They did all the tests and there was all different types of doctor at each hospitals PLUS the tests were sent to most of the states around the US. There was nothing in the tests indicating he would ever be able too.

Those same 2 children's hospitals also said he wouldn't be able to see again and the neurologist did say at the follow-up appointment in Memphis that Haygen could see something but wasn't sure what or how much he was seeing. Totally different from the blind diagnosis and saying that he can't tell if the light is on or off. I had also forgot to mention that a friend of mine's daughter was having seizures and she had tubes put in her ears and her seizures stopped. I had never heard anything connecting tubes with seizures but I mentioned it to the doctors in Memphis the week we were there and they said that yes sometimes it does help because it takes pressure off of the brain and given Haygen's history with ear infections they also scheduled the appointment at ACH for that as well. We have and will try anything to see if it helps.

So with all this going on there's no way to say that the tubes in his ears stopped his seizures, or getting him completely off all medicine or just getting the feeding tube was the reason he was getting better other than GOD IS IN CONTROL. You just have to give it ALL to him.