We returned home last night from our weekend in St. Paul. It was a grueling weekend in a lot of ways. However, the good parts were really good. We had Davanni’s pizza, got to sleep in a sleep number bed, saw some of Kevin’s APO friends, and got to visit with Grace’s first OT – who has been such a wonderful to support to Kevin and myself.
In St. Paul Kevin and I noticed a lot more people asking about why we were feeding Grace through a tube, why we weren’t feeding her the food on our plates– more looks of confusion…. that I interpreted as “I wonder what’s wrong with her?”. In Des Moines we haven’t yet been asked those questions…….The St. Paul people also commented about her beautiful hair – and how she looks like a doll.– Maybe those people were Iowans?:)
Dr. Doescher is concerned that Grace’s seizures are happening as often as they are and he believes we have maxed out the current meds and the diet. We will stay on the diet and the current meds because they have made a difference. He would like us to consider adding a med that is not currently approved by the FDA. He also mentioned a surgical procedure as an option for Grace. Kevin and I were truly blown away. Our time frame is short – the med we can get in 2-3 weeks. If it doesn’t work in a month then surgery this fall – as early as September- is his second option. I cannot comprehend this – it makes my stomach churn. I only tell you to let you know that this decision lies in front of us…. without all the facts and time to process what we’ve learned it is difficult to tell you more.