It’s been a couple of days since our last update. We were hopeful to post something new and exciting about Evan’s progress, but there is not much to report.
We visited HealthBridge (see previous post) last Thursday. Our first impression was more of a kindergarten than a hospital. The staff was incredibly friendly and caring, and it was clear that they would do their best to advance Evan along to as far as he can go. It’s actually a fairly small facility and after subtracting the long term residents they only have nine beds that turn over on a regular basis. We are near the top of the waiting list and Evan will move there sometime in the next few weeks. In the mean time Evan continues to receive wonderful care here at Children’s Hospital and we are in no rush to leave.
Before the weekend we got the post-PEG (see previous post) go-ahead to give Evan a real bath, so he’s had one each day. We fill the tub with blankets and towels to make it soft and comfy for him. Evan’s bath last night was so relaxing, he fell asleep right afterward!
The Docs continue to adjust Evan’s multitude of meds in search of the elusive “perfect cocktail”. Recent changes include upping the Baclofen to the max 40mg/day. He is a bit more flexible, opens his eyes more often, and has longer moments of calm between contractions. They have also added a small regular dose of antibiotics to aid his digestion. Also beginning tonight we are going to eliminate the scheduled dose of chloral hydrate and try to get him to sleep for longer periods on his own. May take a few nights to get him on a more regular schedule, but it’s worth a try…
Brian
Just want you to know that Evan is in my prayers, as are you and your family.
Blessings,
Frani
praying for evan’s quick recovery. glad to be able to follow his progress here. hope all is well and things are improving every day.
We will continue to pray for precious Evan and all of you. Thank you for posting updates on the progress, that is very special to us as we think of you daily. Please don’t hesitate to call if we can help you in any way.
Love The Righeimer family
714-964-5452
Evan and all of you are in our thoughts and prayers. The Rabbi also prays for Evan’s recovery daily. We appreciate it that you post the updates on dear Evan. Thank you for sharing those wonderful photos.
Our very best wishes to the entire Probolsky family,
Love,
Fred and Irene
Evan, is in our prayers and the Evan Army “is” growing.
Brian & Sharon,
Thank you for the updates. I have been mostly out of town the last two weeks and got most of my info from Harriet. I am happy to know that Evan is now able to take a real bath. There is nothing more soothing than being in warm water. I think about you and your family daily and hope to be able to visit Evan again next week.
Love,
Barbara
/big hug
Sending thoughts and prayers daily, thank you for sharing updates.
I received the link to your site in an email. You do not know me but I wanted to let you know your family will be in my prayers every morning.
Hi Sharon and Brian:
Not a day has passed without you all on my mind and in my prayers (and in prayers of many others). I have read your blog with great interest, inspired by your resolve and calm and touched by your boundless love and commitment to your gorgeous angel, Evan. I would like to be more actively connected to you all, but my energy has been taken up by helping my mother in law. She was diagnosed with melanoma just before passover and we are helping her to recover from surgeries. Every day, something new. Please know that my lack of contact has been nothing short of demands of helping my family right now. As soon as things simmer down on my end, I hope to be able to visit with you. In the meantime, I am sending my love and warmest wishes that Evan should go from strength to strength. Nadine