With a Heavy Heart

The day has seemed never ending and it is only 4:20pm. For those of you who did not know we were at Children's today for and EEG and neurology appointment due to Zoey's recurrence of seizures. This was her 6th EEG in about 31/2 months. Too many for a child who is only 14 months old. Actually everything up until this point has been way to much to ask of a baby her age. Today was no different. I absolutely hate to see her cry and cry and cry. I also feel there has been enough of that too in the last year. Too many tears from all of us. From her. The appointment unfortunately yielded a very poor prognosis for Zoey and her seizure battle. And a battle it has been. Just a week and a half ago we had a clean EEG. Today, major chaotic brain pattern once again. 10 weeks of two front line treatments, Vigabatrin and ACTH and both have been deemed a failure. Return of the Hypsarrythmia, the cognitive damaging brain waves, is a devastation. We had such hope. Although Zoey possesses two possible reasons for her Infantile Spasms, Down syndrome and the stroke, the stroke is most likely the culprit. She suffered a Middle Cerebral Artery Infarction inutero, a major stroke, that has left almost 2/3 of her right hemisphere irreversibly damaged. At this point the direction we are being encouraged to pursue would be a Total Right Hemispherectomy. The removal of half of her brain. I know, unreal to say the least. I cannot even believe I wrote those words. Mind boggling. We are trying to process this the best we can right now. There are literally a million things going through all of our heads. The biggest thing, what is in Zoey's best interest? I wish that answer would magically be placed before us because we are at a total and complete loss. Why this child has had to endure any of this and ALL of this, completely escapes me. I will never understand it. Ever. At this point we can do little else but pray. Pray that God has a bigger plan that we cannot see or envision right now. This child is the sweetest, most gentle little girl that you would ever meet. She is the definition of pure innocence. Her spirit carries us through our days and her strength allows us to tell ourselves that we can do this. My faith is weak. My spirit is broken. My ability to see the fairness is clouded. I have promised from the beginning that I will do all I can to see that Zoey is given the opportunity to lead the life she deserves. Not by definition of society or medical science. She defies all of that. Her mere existence defies all of that. Pray for her. Pray for her future. I am sure she will far surpass all expectations and as her Mother I will continue to fight for her with the same strength and courage that she has shown us thus far. I may take a little break from posting for awhile. Just to sort things out a bit. When I began this blog over two months ago I had no idea the life it would take on, the friends I have made and the gifts others journey's would bring to me. I have been amazed by the human spirit. The generosity of strangers and the love of my family and friends. Daily I receive emails and phone calls from families offering their wisdom, support and love. Many of which I have never even met, I am humbled. I am thankful. I am blessed. Till next time, Heather