Reese’s aunt Laura shares the following update:
It has been quite some time since I have done a medical update on Reese. So many continue to ask and continue to pray for Reese so we wanted everyone to know where she is today. We have had such a busy summer full of numerous activities. Reese has continued to heal and push forward at home. She has been able to show her calf, ride in a helicopter, played outside, been to the beach, gone swimming in the pool and enjoyed summer like every 9 year old out there. As most of you know, Reese started back to school a few weeks ago and she loves every minute of being in school with her friends. She rides the bus each day with her nurse and Brinkley and always wakes with a smile ready to start the day. Most days she buys lunch as she loves the school lunches and studies the menu each morning before school! She is able to partake in all school activities and has such a supportive team. Her teacher is a wonderful second year teacher names Mr. Rhodes. He has such patience with Reese and pushes her to do a little more every day. Claire says he reminds her so much of Zach as he has so much positive energy for all of the kids, is a sports lover who has a super cool sports decorated room and loves to challenge Reese to walk a little further each day or stand a little longer. He is a match made in heaven for Reese! Reese does have a nurse that accompanies her to school but stays in the back of room to let her be as normal as possible. The teacher also has a microphone he talks into that goes directly to Reese’s hearing aids to further help her hearing. The good news with her hearing is she is now scheduled for a single cochlear implant on October 14th. This is an outpatient surgery that will take place at Johns Hopkins. The plan is to have the surgery and then allow the ear to heal and on November 9th they will begin to activate the device. It is a process but one we are ready for. Reese is on fewer medicines today than when she first came home which is always a positive (and off of all heart medicines)! Just this past Friday, Reese had several appointments at Johns Hopkins and her cardiovascular team said it best…”We are finding it very difficult to find reasons for you to continue to come back and visit us…you are doing so well and getting so healthy.” Music to all of our ears!!! She is still on oxygen but when she came home she was on 6-8L/min and now is on 2-3L. That’s progress! One of the next steps is to wean her from the ventilator. Some of you will remember that she was weaned from the vent during the day a few months ago and has only needed that support at night lately. We now hope to try night trials without and shed that ventilator machine altogether! This will also be the first step toward getting that trach out of her…that will be a big step! Bottom line, Reese is continuing to heal at home and recover from that awful May day in 2014. She truly looks so much healthier when you see her with glowing skin, thickening and shiny healthy hair and always with a big smile. Thanks to all who continue to care and pray for Reese and our family. Still today, we feel so blessed.
