Fear

Thursday, January 6, 2011

Would it be safe to say that the last several months of my life I have spent crippled in fear? YES! Kennedy's condition is progressively getting worse and thoughts of her eminent death are always in the back of my mind. Yes, I fear my daughter and our families circumstances.......

• I fear the uncertainty of her life
• I fear that while I sleep my baby will leave us for heaven and I will not have been there for her last minutes
• I fear that Kennedy will not be here for the birth of her brother
• I fear that Kennedy's death will forever change who I am - to the point where myself or people around me will no longer recognize who I am anymore
• I fear that I will not know how to function without my daughter
• I fear that Kennedy' death will destroy my husband and my father
• I fear that I have gotten in over my head with the upcoming arrival of our son - can I do it?
• I just overall fear my future..

You may wonder what is with all this talk of death. The death of my daughter is eminent. I do not know when or where it will occur (oh the proverbial grey area I so love - not) but it will happen and unfortunately for us, it is sooner rather then later. Kennedy has not been the same since October. We are witnessing a heinous disease destroy our daughter before our very eyes. It has taken away so much - it has wreaked havoc on her tiny body and it is just getting worse and worse.

We met with our amazing Neurologist this week and I think we have come up with a solid plan to lesson Kennedy's agitation and keep her more comfortable. Kennedy has been battling with increased seizure activity the last couple weeks (as a good reference point she has not had any seizure activity that we were aware of in over 6-9 months) and has become increasingly more irritable on a daily basis. We brought another seizure medication onboard (she is now taking a combination of Keppra and Lamictal) and so far the two seem to be working together cohesively and Kennedy has been seizure free since the week prior to Christmas. Treating the agitation becomes a little more tricky. Due to Kennedy's low muscle tone and decreased respiratory drive we have to tread lightly when trying to prescribe sedatives. As of now Kennedy is starting an extremely low dose of Ativan which is meant to try and relax and relieve her agitation. With such a low dose, it leaves us room to adjust the dosage if necessary.

Well enough with this depressing medical mumbo jumbo. Below I put the rest of our 2010 Family Pictures. It will probably be one of the last photo shoots we have before our newest addition arrives at the beginning of May. To see more of our amazing photographers work check out her website here.