MEMPHIS........Finally

While waiting for April 2010, we were still in and out ER's, doctors offices and ACH. I still love ACH and it's an amazing hospital. I just didn't like Dr House Wannabe :)  When we got to Memphis, I met the neurologist who was in charge of Haygen's study, then after the next 20 doctors I lost count. I just knew they were all meeting at St Jude's at the end of the week to discuss Haygen.

(This was him at ACH before we went to Memphis)(That was the 1st time, I had heard him laugh since February 2008)

They began hooking Haygen up to the video EEG as soon as we arrived in Memphis. A few hours later the neurologist came in and said "I'm not sure exactly what's happening with him but I do know he does not have LGS!!" He said everything Haygen is going through mimics LGS EXCEPT Haygen was continually to decline or regress.  Which he explained that most of the time, children with LGS regress and then stay at level but Haygen keeps regressing.  By the time we got to Memphis, Haygen could not walk, talk, see, lost all of his facial expressions, could not swallow, could not hold his bottle, could not sit up and the list just keeps going. So all week were more tests, genetic testing, missing chromosome's etc etc and of course everything was returning normal except ONE test and that was the big one. Those results were not in and they said the results should be back before the end of the week.

The test was for Rett's (Haygen was 3 at this time) so during this week, they were preparing me for the positive results of the test.  In other words, Haygen would not make it past 4 years old. He was that bad :( That was the longest week of my life and during this week I lost my baby cousin Tanner. He was 17 years old and died in an auto accident.  I was devastated. There was lots of praying, soul searching, you name it and it was done. I was so afraid I wouldn't make it to Natchitoches, LA to tell him goodbye.

It was very late Friday night and the Doctor came to tell me the results of the test were in..........Haygen did NOT have Rett's!! WHAT A MIRACLE!!!! But it was puzzling Doctors because he had been tested for EVERYTHING!! Memphis confirmed ACH and said he would never walk again or see again. They were at a loss as well.  The doctor knew about my cousin and he released us that night and we drove all night stopping just to change clothes then driving on to Natchitoches, LA and got there just in time for Tanner's viewing and funeral. That made me feel better too, just knowing I could say goodbye.

Before releasing us, he said he wanted to try Haygen on a different combination of meds (which I was happy about because that was my main goal to give him a better quality of life) but we first had to wean him off the meds he was on. That process wasn't bad in fact, turned out to be THE BEST THING EVER!!! :) And he called ACH and scheduled surgery for a feeding tube.  They were going to keep us until the following week when someone was available to do the surgery there but he decided against it because he knew we wouldn't make it to my baby cousin's funeral. So during that time after we left until the surgery we had to use the feeding tube through the nose and that was NO FUN!! When Haygen pulled it out, guess who had to re do it?? Yep ME :( When you're a mom or parent to a special needs child you realize you've got Super Powers real fast.

ACH taught me how to insert the feeding tube and this was my 1st time!! :). He wasn't mad at me either :)

They love each other SO much!!! It's a bond that's unbreakable!!!