The afternoon was much of the same and I had a lot of awake time today with seizures and respiratory distress. We are plowing through so many blankets and spit rags because I am just drooling like crazy when I am awake and seizing.
I finally settled down for a long nap late this afternoon and even slept through dinner, cake & presents for Daddy's birthday:-) Happy Birthday Daddy - we all love you so much.
My night nurse Beth is here tonight and we are hoping for a better night than the last. Mommy and Daddy just got off the phone with my wonderful Dr. Gien - what doctors call you at home, let alone after work hours??? So the plan for tonight and tomorrow is to try my same daily valium dose but spread it out to every 4 hours and increase my morphine. We will re-assess where I am tomorrow night and talk to the doc again. My medicines are a constant battle.
So Mommy asked me if she could add something to my post tonight and I agreed. I don't normally allow others to post, but she is my Mom and I read what she had to say and only had a few corrections.
Guest blog by Mommy
I was forwarded a wonderful article today that I have to share (thanks for letting me Tess).
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=2&hp
The one sentence that really spoke to me was "The only task here is to love, we tell her we love her, not caring that she doesn't understand the words". It was so nice to read something from someone who feels exactly the way Dan and I are feeling but also makes us so sad to know that another child is hurting and another parent is slowing dying inside.
Everyday is a struggle, but Tessa's comfort and peace are always our number one goal. There are many times she is peaceful and we are reassured in decisions we have made, and there are other times during the mayhem of this syndrome, that make us question what we are doing. But there is always that hope that I will see a smile or maybe hear a laugh...maybe one day.
--Jen, (aka, Tessa's Dragon Mom)
Jen, that was so touching. We understand your pain and your joy and it gives us great comfort knowing that Tessa has such wonderful parents. We love all of you and pray that God gives you the strength to get through this. You are constantly in our thoughts and prayers.
ReplyDeleteWhat a well-articulated and insightful article--great guest-blogging! Tessa is so lucky to have been given to such an amazing and loving family. We think about you all the time and miss you so much! We're sending our love and prayers over the miles, and we want to wish Dan and Tessa happy belated birthdays :)
ReplyDelete