Insight from a friend

I received these e-mails from a friend of mine whose brother has Cerebral Palsy. She doesn't mind if I post them. I'll definitely ask the questions. She is a home schooling mom as well, as you will gather from the e-mail. Thanks for sending these, Carrie!


Hi Sara,
I would ask how you are all doing, but I just read Olivia's blog. I wanted to pass on a few words from my brother who has CP. I called him immediately after reading the blog. He has had many surgeries in his 33 years. I asked him what he would ask the doctor. The first thing he said was to ask was about the pain meds. The second thing he would ask about would be what kind of cast. He volunteered that his surgeries would have been useless without physical therapy afterwards. He HATED p.t. but we all made him do it. He said the best part of surgery was being waited on by everyone. I know you and Dave devote a lot of time for Olivia, but just think how fun it will be to REALLY pamper her after she gets out of surgery. I know that you are all anxious about the surgeries, but remember that they will enhance Olivia's life. My brother was impressed with the fact that Olivia hasn't had any surgeries yet. He had surgery very early in life.

I will ask my mom later about (his) surgeries and get back with you. The only advice I can give you about the waiting game is distraction, distraction, and devote some extra time to Jack and Robin because they won't have you after the surgery. Homeschooling will help you through this time as well. You can work ahead if you want to and not worry too much about it after the surgery. I school year round because we take time off at odd times throughout the "normal" school year.

Hope this helps a little. My thoughts and prayers are with you all.

(a second e-mail)

Hi Sara,
I just got off the phone with my mom and here is her advice:
1) Ask how they will sedate Olivia and how long she will be under the effects of sedation.
2) Will she have a breathing tube during surgery? Realize that her throat may be dry after surgery.
3) Stay with her at the hospital, even overnight. She felt that my brother received better care when a parent was present. (I figure that you will already be doing this, but that is just what my mom said.)
4) Be polite, but firm with the nursing staff. (I can remember having to run to the nurses' station and scream for someone to come with pain medication for my brother. He had been waiting for quite some time and couldn't take the pain anymore.)
5) Ask to be there when the physical therapist visits with Olivia post surgery. You will be able to glean vital information about how to care for her at home.

Hope this helps

I am certain this is going to be very helpful. It is reassuring to know that we're not the first ones to go through these surgeries.