Life After Surgery (continued)
Grace had an MRI at six month post-op and it was reviewed by the BNI team. It was at this point that we found out the resection had been 100% and the MRI showed no hypothalamic hamartoma remaining. This was great news.
The year of recovery following surgery was tough, but the good news was Grace had not had a single seizure or a hypothalamic rage since leaving Arizona.
The post-op struggles continued with diabetes insipidus, uncontrollable hunger and a decreased metabolism. Instead of tracking seizures as we had to do before surgery, we now measured all fluids in and out, weighed her daily, measured all food and provided food on a strict time schedule. Grace’s weight gain was a constant struggle. Grace’s drive for food continued and eventually, we found she had the acquired form of Prader-Willi syndrome as a result of surgery. This was yet another devastating blow to our family and increased the care Grace required.
In January 2008, we found out we were expecting another addition to our family. Both girls were overjoyed with the expectation of a new baby in the house. They both loved caring for one another and had so much love to share.
Grace started preschool in August 2008 and fell in love with it. She woke up every morning asking if it was a school day and if the answer was ‘yes’ she’d have the biggest smile. She approached each day with joy and happiness, looked forward to wearing her favorite outfit, picking her jewelry and having her hair accessories perfectly match her outfit. She loved the ‘bling’ and loved getting to school so she could show it all off to her teachers and aides. Although Grace continued to need medical monitoring of her sodium, she blossomed being around her peers.
In September 2008, our family welcomed Garrett into the world. His sisters were so happy to finally get to meet him and we all knew that adding a little boy to our family was a true blessing.
Life continued to improve for Grace and in April 2009, we celebrated her two year post-op anniversary and felt blessed she continued to be seizure and rage free. She was being weaned off her anti-seizure medications slowly and life was good.