Dr. Do-Little

WOW what a day.  We started early as Aidan had is first day of Kindergarten and woke up early and ready to roll.  I stayed home with Daddy while Mommy and Aidan headed off to school to meet his Teacher Mrs. M and his new classmates. 

I hung out at home with Mommy till Beth came over for PT.  I did really good on all my exercises but was not willing to do tummy time today.

After PT Mommy, Aunt Destin and I met Daddy at the hospital for my big appt with my Neurologist (Dr. K) and Epileptologist (Dr. L).  After waiting for over an hour we headed into our meeting.  My family had pages of questions for the doctors and printouts of studies they have read and researched.  We initially met with Dr. K.  I guess she became so overwhelmed with the intensity of my family that she left the room and another doctor returned in her place.  Now we were meeting with Dr. L.  As per several phone calls my family has had with him over the past few months he is not wanting to move in a direction that Mommy and Daddy would like.  My situation is so complicated that Dr L could only described it by saying to Mommy and Daddy, "The two of you are in as bad of a position, just short of losing a child."  He was trying to tell them that he empathized with their feelings of hopelessness in trying to understand my situation and lack of treatment options.  The very long of the short is that they have NO clue what is wrong with me.  I have been again put under the umbrella of neonatal encephalopathy (don't look it up - it is not good and very depressing).  Nobody seems to agree on what I have had, meaning some docs think I have infantile spasms while others says electrographic spasms.  I did at some point have hypsarrhythmia, but that and my seizures seemed to have stopped with the ACTH.  Some good news was that we were told that the majority of children whose seizures stop with ACTH tend to stay seizure free for good.  We are praying I fall into that boat.

The stand off began when the doc basically told Mommy and Daddy there was nothing more they could do since I am seizure free.  Keep in mind that there is something going on in my brain (the chances are that they will never find out what it is or if they do it is most likely not treatable) that is causing an "abnormal noise" on my EEG and therein lies the problem.  We have an appt with Metabolic next week.  My fate lies in their hands to hopefully discover what the underlying cause is and we pray that it is treatable.  Even though we left knowing that I am doing significantly better than they could have ever predicted we are still feeling defeated by not being allow to find more treatment options.  Mommy and Daddy are asking for yet another consult and are following up on some leads in Canada.  Please keep me in your prayers....even though things are not as good as my parents would like I am beating the odds at this point.

Nezbah

Waiting for the doctor, and waiting, and waiting.....