Gavin’s 1st infusion was completed in about 4 hours. It took much longer then we thought but Gavin did well. So far his body seems to be tolerating the procedure without side effect.
He may get a bad headache, back pain and nausea. However, so far he’s just tired. So we’ll just count our blessings.
Akron Children’s Hospital was amazing today. They are truly among the best of the best. They showed a tremendous amount of compassion and understanding throughout the entire ordeal.
We also spoke with the doctor as well. She said that at this point we will do the infusions for least the next year. At that point we’ll stop for 3 months and see what happens. More likely then not Gavin will need these infusions indefinitely. We still don’t know for sure what’s the cause of all this but she is hoping the Gavin’s eye exam next week will shed some light.
Until then, we must wait. She also wants Elliott tested as well due to his frequent respiratory issues. I don’t know what the future holds but for today we survived.
Thank you for all the support….