Email sent to family and friends
Hey all,
Sorry I haven't updated since the initial rehab dr's appt. The second rehab dr's appt went well. The dr. was able to answer a lot of questions for me. He sat and talked with us for a long time. He talked with us as I felt like any and every doctor should and like no other dr has. So the entire experience was very different and very refreshing. So I've spent most of the time between that appt. and now thinking about our options. After a lot of thought and consideration and worry, we've decided to keep the Mayo appt. I won't lie. It's been so very stressful, but I feel so much better now that the decision has been made to keep the appointment and not postpone it. The next available appt would be in January. We wouldn't be at peace with ourselves if we didn't go as scheduled. If there is one sliver of hope that Mayo can help her, then we need to go on the 23rd and not wait.
Mom's condition: It's hard to tell if she's any better with the new medication. She continues to have very bad days. SInce the beginning, it's been very hard to describe her symptoms. She still has the jerking in her upper body, but there's many other symptoms. If you haven't seen her, you won't understand. What I can say that might help is that she pretty much has no quality of life right now. Life is a complete struggle for her. Walking to the bathroom is a struggle. Eating is a struggle. Sitting up is a struggle. Holding the newspaper is a struggle. All physical activity, fatigues her within seconds. Sometimes she's so out of breath she can barely talk. It is agonizing to watch her and it saddens me deeply.
It has not dampened her determination. Although I was almost certain she wouldn't make it to John Brady's grandparent's day lunch, but she did. John Brady's teacher and I were able to make some special accommodations for her. She made it, but it wasn't without sheer determination on her part. And seeing John Brady's eyes light up when we brought her into his room, I knew exactly what the driving force behind her determination was.
Mom's first appointment at Mayo is on October 23. Her other two appointments are on October 25. So we know we will be there Oct. 23-25, but it could be longer.
Again, thank you for all the prayers. Please pray for her strength and endurance as she fights this horrible battle each and every day. Also, please pray for strength for my dad. He's been amazing throughout this, but I know he's wearing thin. Please pray for me as I try to help mom and maintain a normal as possible routine for my party of five. Please pray for me to find ways to decompress and deal with the stress of it all. Please pray for the Mayo doctors for knowledge and insight into this terrible condition.
Love to you all,
Kim
No comments:
Post a Comment