Last year on October 14, our sweet 3 day old daughter had her first seizure and instead of being discharged from the hospital with me and Jackson she was admitted to the NICU. She had multiple "dusky" episodes during the day and that evening they determined she was having seizures. Shortly after this realization Charlie Claire was given her first dose of phenobarb.
Exactly one year later Charlie Claire will take her last dose of phenobarb. We only knew our little girl for 3 days before starting her whirlwind of seizure medications. It will be such an amazing moment when we measure out her meds for Saturday morning to have one less we have to give her. Thank you phenobarb for being one of the only seizure medications that Charlie Claire ever responded to...I can't say that we will miss you but we sure do appreciate you and what you have done for C!
This day is a hard day to think back on. Our world came crashing down on us in a matter of minutes. We went from getting the hospital discharge papers to Charlie being taken away from us and admitted to the NICU. We did not know what was going on with Charlie Claire except that she was experiencing apnea. Her getting admitted to the NICU was just the beginning of all the blood draws, IVs, MRIs, EEGs, medications, hospital stays, surgeries, etc. that our sweet little girl would have to endure during the first year of her life. It is safe to say that this girl has gone through more in her short little life than most grown adults have their entire lives.
We are constantly amazed by Charlie Claire and that despite all that she has gone through she has the sweetest disposition, best laugh and continues to keep truckin' along!
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)
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