Three and a half years ago we were blessed with the greatest gift ever, two amazing newborn babies.
Not only were we trusted to be the parents to these two little ones but we were also given the task of caring for a medically fragile child. We were brand new parents to twins and before we ever were discharged from the hospital we were thrown into the medical world.
There was not a cliff notes version for this world that was handed to us upon admittance into the NICU, we just had to jump into the deep end and learn as we went. Within 24 hours of Charlie Claire having her first "dusky" episode the doctors realized she was having seizures. Charlie Claire was transferred to CHKD for further testing and once her medication level was at a therapeutic dose we were sent home with our baby after 2 weeks.
All seemed well for roughly 6 weeks when we then were blindsided by a very large bus that knocked the wind out of both of us. Charlie Claire was having a ridiculous amount of seizures, she was immediately admitted to the PICU. During that stay she did not respond to any medication...huge doses of medication that would have knocked you and me on our butts. Before being discharged from the hospital we were informed that Charlie Claire would need to have brain surgery and the surgery she needed is not performed at our local children's hospital which meant we needed to look into out of town options.
At that time Charlie Claire was having upwards of 100 seizures a day but it wasn't until about a month after that when the catastrophic epilepsy set in. Infantile Spasms. The term seems simple enough but it is beyond detrimental to the brain. Our goal now was to put an end to the spasms as quickly as possible...we were told we had a 3 month window from the start of the spasms to getting rid of the spasms in order for C to have the best shot at a "normal" life.
Not only were we trusted to be the parents to these two little ones but we were also given the task of caring for a medically fragile child. We were brand new parents to twins and before we ever were discharged from the hospital we were thrown into the medical world.
There was not a cliff notes version for this world that was handed to us upon admittance into the NICU, we just had to jump into the deep end and learn as we went. Within 24 hours of Charlie Claire having her first "dusky" episode the doctors realized she was having seizures. Charlie Claire was transferred to CHKD for further testing and once her medication level was at a therapeutic dose we were sent home with our baby after 2 weeks.
All seemed well for roughly 6 weeks when we then were blindsided by a very large bus that knocked the wind out of both of us. Charlie Claire was having a ridiculous amount of seizures, she was immediately admitted to the PICU. During that stay she did not respond to any medication...huge doses of medication that would have knocked you and me on our butts. Before being discharged from the hospital we were informed that Charlie Claire would need to have brain surgery and the surgery she needed is not performed at our local children's hospital which meant we needed to look into out of town options.
At that time Charlie Claire was having upwards of 100 seizures a day but it wasn't until about a month after that when the catastrophic epilepsy set in. Infantile Spasms. The term seems simple enough but it is beyond detrimental to the brain. Our goal now was to put an end to the spasms as quickly as possible...we were told we had a 3 month window from the start of the spasms to getting rid of the spasms in order for C to have the best shot at a "normal" life.
March 30, 2011 was a game changer for the North Family.
We handed over our sweet, 6 month old baby girl and put all of our trust in her medical team at VCU. We never questioned the need for the surgery but we had no idea what to expect...
We handed over our sweet, 6 month old baby girl and put all of our trust in her medical team at VCU. We never questioned the need for the surgery but we had no idea what to expect...
The morning of March 30, 2011 was the last time Charlie Claire and her fragile little brain had to suffer through a cluster of Infantile Spasms and she has not looked back since.
We could not be more grateful that we were chosen to be Charlie Claire's parents and we could not be more proud of this sweet, smart, determined, loving, sassy, little girl and all that she has taught us about life in her short little life. Thank you Charlie Claire!
As per our tradition, here is Charlie Claire's video of her last year!
We could not be more grateful that we were chosen to be Charlie Claire's parents and we could not be more proud of this sweet, smart, determined, loving, sassy, little girl and all that she has taught us about life in her short little life. Thank you Charlie Claire!
As per our tradition, here is Charlie Claire's video of her last year!
To make the video larger click the box in the bottom right hand corner of the video!
And on this day that we celebrate Charlie Claire and her journey we would like to thank you! Thank you for being on this journey with us....your endless love and support has been beyond amazing!
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