We are on day 3 of giving Jaylie the ACTH shot each morning. Jaylie is responding well so far. Her seizures seem to be less frequent and less intensive.
Part of the side effects of the shots are irritability of which WE are definitely experiencing.
I have to say, injecting Jaylie with the ACTH gel is a slow painful process for all. Giving these injections to your own child is the worst experience I've had so far.
Going through all these events this last week has been extremely taxing on all of us exacerbating the cracks and imperfections in us. Your prayers and support are priceless!
People ask how we make it through these times, I immediately respond stating we would not have made it through these times without the love, prayer and support of our support group, our friends and family ( all of you! ). You all have really made an irremovable impact on our lives, thank you!
I've mentioned this before ago but feel it is worth mentioning again, Kristina's mom has been an absolute live saver! Debbey has a gift for dealing with children and additionally a gift for children that have special needs. Debbey has many priceless years of experience working with children to over come adversities. Debbey's impact on Jaylie's life has been profound. We are appreciative of the work Grandma Debbey does with Jaylie on almost a daily bases. Being new parents we have no idea what we are suppose to be doing. And being parents of a child that needs extra special care as our first child puts us at an even more of a disadvantage. Debbey's experience and support has been a true God send for us. Debbey has gone above and beyond the role of Grandma and has propelled herself into Super Grandma status! Thank you Debbey! We love you!
Debbey is only one of the many people ( both friends and family ) that have provided us and continue to provide us support.
Thank you all! We do see and acknowledge your giving and sacrifice for Jaylie. Thank you thank you thank you!
Nathan, Kristina and baby Jaylie