First a big thank you. Jennie & I believe in the power of prayer and we are so grateful for all the prayers. Thank gd, Benny's surgery went well and miraculously, we were discharged from the hospital just 4 days after the experimental brain surgery.
Leaving Dayton Children’s Hospital
The day of the surgery was the most exhausting day of my life. Jennie and I barely slept the night before the surgery and we had to get started early to have Benny at Dayton Children's Hospital by 6:30am.
After escorting Benny to the anesthesiologist, at about 7:45am we were promptly shuttled to a small private waiting area while Benny was brought first to get an MRI, then on to the OR for the surgery.
The staff, from top to bottom, were amazing at Dayton Children's. We were updated at least once per hour while we waited. We received updates via text, calls and in person visits from one of the doctors.
The minutes felt like hours and the hours felt like days as we waited. When will we see Benny? When will we know that all went well?
After what felt like an eternity, at about 2:30pm we got word that all went well, and at about 4:30pm we got to see Benny resting peacefully in the hospital bed. Little did we know it would be another 5 hours before Benny fully woke from his anesthesia induced sleep.
We're now nearly three weeks post surgery and Benny is doing great.
Some people have asked us when we can expect to see a difference in Benny. The neuroscientist let us know that he did not expect us to report any real noticeable differences at Benny's 3 month follow up appointment.
I will confess that I do not notice any clear differences in Benny, but ask his mom or his "safti" (paternal grandmother) and they will swear that they see differences.
So now we wait, and we continue to pray.
Next steps (beyond continued praying) is a quick visit back to Dayton next week for a follow up MRI for Benny and then we hope to be going back to Dayton soon thereafter for Josh to get the treatment.
As always, we remain grateful for all the well wishes and we'll write again soon as we have more information.
All our Love!
Jennie and Gary, Michael, Benny, Josh, Evan and Racheli
The boys and their Hebrew names as follows:
Shalom Binyamin & Yehoshua Natan, ben Shayna Toyba
שלום בנימין בן שיינע טייבע ויהושע נתן בן שיינע טייבע
Cure Canavan Fund is a registered non-profit 501C3. Donations to Cure Canavan Fund are tax-deductible. EIN# 83-4489648
Racheli, Josh & Benny (L to R) chillin at a Dayton, Ohio park
Not many sandboxes in Brooklyn, but Evan was LOVING this one in Dayton, Ohio