I can't believe its been 1 year since Kaylee's 1st seizure. I remember very little of that day. As much as we knew that seizures could be part of Kaylee's future, nothing prepared me, any of us, for her neurologist words on January 19th, which were,"I'm sorry to say this but Kaylee's EEG shows modified hypsarrthymia also known as infantile spasms." I remember looking at Beau and just losing it. Beau at the time wasn't familiar with infantile spams, but he knew it was serious enough for me to cry. The rest of it seemed just like a blur which I think is a blessing in some ways. Our memories are double edged swords however. They rob us eventually of the things we wish so desperately to remember forever and ever but often, during some of the most difficult moments in our lives, usually the darkest, those times too begin to fade.
I am in complete awe of our sweet baby girl I see before me today. Kaylee has amazed me from day one and that has not ceased, for one second, to this day. I am in awe of my beautiful Allison and how she has grown and evolved and endured all that has been asked of her and all that she had to process and channel and deal with. I am in awe of my loving husband Beau and how he just got done what needed to get done, to provide for his family, remaining positive and optimistic, all the while caring so tenderly, nearly each and every evening for his youngest little love.
Seizures were such a huge and devastating part of our life at one time. Actually, Kaylee's life. It was, after all, her little brain that was being jostled relentlessly. We all however, lived and breathed Kaylee's seizures. Or rather we mostly held our breath. Our lives were consumed with counting seizures and watching for seizures. Allison even would yell out,"seizure", when she was having a cluster. How sad is that? Our lives were once dictated by guessing,"Do we go up on dosage? Do we go down on dosage? Is the dosage EVEN working? I shared with someone awhile back, that Kaylee's seizure time was a truly dark, dark time. In many ways darker then the 1p36 deletion diagnosis. At least with her 1p36 diagnosis we knew exactly what we are dealing with and what we need to do next. Not true for Epilepsy. The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because she is not particularly optimistic on the next medication choice. Seizures came out of the clear blue for Kaylee. One day turning blue and nonresponsive and the next week an EEG report that read like a really, really bad horror movie script.
Kaylee's type of seizure disorder, Infantile Spasms, is referred to as a catastrophic form of Epilepsy. Not what parents wants to hear. It is often very difficult to bring under control and most often results to severe developmental delays. We watched our once smiley little girl, leave us. Leave us like, nobody was home, leave us. No smiles. No expressions what so ever. She stopped eating well. She just STOPPED. Our journey from and through Infantile Spasms was relatively brief, compared to some, but it was still dark and agonizing. In the end, after a month of trying, Kaylee found her miracle in a drug called ACTH that little held hope would work. That was a gift. Kaylee has found seizure freedom for almost a year now, February 17th to be exact.
I say that I don't take Kaylee's seizure freedom for granted but do I? Have I become too comfortable and confident that she remains seizure free on a very low dose of medication? Lord I hope not. Kaylee has an amazing doctor at Driscoll children's hospital here in Corpus Christi, Dr. Deline. She has been a source of encouragement and has rejoiced alongside us in Kaylee's progress.
During this past year, our family has witnessed the most incredible outpouring of love and support from our family, friends, and complete strangers. More kindness and compassion and unselfishness, then we could have ever, ever imagined. I have, along the way, also met the most magical children and families that I would have never had the opportunity and the privilege of meeting had it not been for this journey. I have watched with immense joy and hope, the children and families who are accomplishing many wonderful milestones, some small or big, but equally awesome accomplishments. I have also watched with equal pain and sorrow, the faces of families whose children would not make it. A year ago I would never, in my wildest dreams, have imagined having to watch parents and siblings and loved ones, say goodbye and journey forward in this life, without their precious children. That part of the journey I will never be able to reconcile.
A year ago, our family found strength in each other, as we united, with one goal and one goal only and that was to see this innocent child through the unimaginable. And here we are a year later all of us all together taken to the edge once more and brought back because of the will and spirit of a tiny precious baby girl. Kaylee Ashlyn and her presence and entry into our family is what we have been waiting for all of our lives. She has changed us and shaped us and empowered us to be the people we are today. We give thanks to God for leading us, sheltering us and covering us in His amazing grace so we can proclaim once more, how incredibly blessed and how humbly thankful we are. No one knows what tomorrow will bring or the day after that, or what awaits us around the next corner but what I do know, is that for today, in this moment, we rejoice.
I am in complete awe of our sweet baby girl I see before me today. Kaylee has amazed me from day one and that has not ceased, for one second, to this day. I am in awe of my beautiful Allison and how she has grown and evolved and endured all that has been asked of her and all that she had to process and channel and deal with. I am in awe of my loving husband Beau and how he just got done what needed to get done, to provide for his family, remaining positive and optimistic, all the while caring so tenderly, nearly each and every evening for his youngest little love.
Seizures were such a huge and devastating part of our life at one time. Actually, Kaylee's life. It was, after all, her little brain that was being jostled relentlessly. We all however, lived and breathed Kaylee's seizures. Or rather we mostly held our breath. Our lives were consumed with counting seizures and watching for seizures. Allison even would yell out,"seizure", when she was having a cluster. How sad is that? Our lives were once dictated by guessing,"Do we go up on dosage? Do we go down on dosage? Is the dosage EVEN working? I shared with someone awhile back, that Kaylee's seizure time was a truly dark, dark time. In many ways darker then the 1p36 deletion diagnosis. At least with her 1p36 diagnosis we knew exactly what we are dealing with and what we need to do next. Not true for Epilepsy. The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because she is not particularly optimistic on the next medication choice. Seizures came out of the clear blue for Kaylee. One day turning blue and nonresponsive and the next week an EEG report that read like a really, really bad horror movie script.
Kaylee's type of seizure disorder, Infantile Spasms, is referred to as a catastrophic form of Epilepsy. Not what parents wants to hear. It is often very difficult to bring under control and most often results to severe developmental delays. We watched our once smiley little girl, leave us. Leave us like, nobody was home, leave us. No smiles. No expressions what so ever. She stopped eating well. She just STOPPED. Our journey from and through Infantile Spasms was relatively brief, compared to some, but it was still dark and agonizing. In the end, after a month of trying, Kaylee found her miracle in a drug called ACTH that little held hope would work. That was a gift. Kaylee has found seizure freedom for almost a year now, February 17th to be exact.
I say that I don't take Kaylee's seizure freedom for granted but do I? Have I become too comfortable and confident that she remains seizure free on a very low dose of medication? Lord I hope not. Kaylee has an amazing doctor at Driscoll children's hospital here in Corpus Christi, Dr. Deline. She has been a source of encouragement and has rejoiced alongside us in Kaylee's progress.
During this past year, our family has witnessed the most incredible outpouring of love and support from our family, friends, and complete strangers. More kindness and compassion and unselfishness, then we could have ever, ever imagined. I have, along the way, also met the most magical children and families that I would have never had the opportunity and the privilege of meeting had it not been for this journey. I have watched with immense joy and hope, the children and families who are accomplishing many wonderful milestones, some small or big, but equally awesome accomplishments. I have also watched with equal pain and sorrow, the faces of families whose children would not make it. A year ago I would never, in my wildest dreams, have imagined having to watch parents and siblings and loved ones, say goodbye and journey forward in this life, without their precious children. That part of the journey I will never be able to reconcile.
A year ago, our family found strength in each other, as we united, with one goal and one goal only and that was to see this innocent child through the unimaginable. And here we are a year later all of us all together taken to the edge once more and brought back because of the will and spirit of a tiny precious baby girl. Kaylee Ashlyn and her presence and entry into our family is what we have been waiting for all of our lives. She has changed us and shaped us and empowered us to be the people we are today. We give thanks to God for leading us, sheltering us and covering us in His amazing grace so we can proclaim once more, how incredibly blessed and how humbly thankful we are. No one knows what tomorrow will bring or the day after that, or what awaits us around the next corner but what I do know, is that for today, in this moment, we rejoice.
