Frustrating day turned into a wonderful day. Kourtney's dressing change was put on hold today because the appropriate dressings had not arrived. This is day number 3 for the dressings, so the smell was pretty bad. Shaelyn kept saying she smelled beef and cheese. She was blaming her uncle for that and he was quite willing to carry that because everyone knew that the dressings were on for a day too long.
We went to Madagascar and then hung out in our 5 star hotel. Kourtney decided she would try to use the revolving door with her electric wheelchair. It was quite the site as she ended up getting stuck in there and the concierge was trying to get her out. Wow my family is not made for luxury at all.
I have a new friend. I could not believe how she understood how I felt. Our circumstances are different but yet the feelings of helplessness, mourning, alienation and lack of understanding are very much the same. It gave me great a different perspective in how I am feeling and I thank her for that today. (we went to Lululemon and bought matching jackets, boy was I thankful I bought a jacket as it poured rain. Kourtney got a hoodie from Lulumeon today also, she was so thrilled with it.
Tomorrow we should get rid of the beef and cheese smell. (Shaelyn will be the judge of that). Please pray for Kourtney as the dressing changes are incredibly nasty for her (and for me). Her anxiety is so huge, pray for her to relax. Today I was ready to take her home as I am really tired of doing the dressings when it is good for everyone but not for Kourtney. She survives on routine, I really need to get this established if we are going to be a long time. (Looking like we will be here for awhile)
Just so you know....someone from Canuck Place came and talked to me. He said that Kourtney didn't meet the criteria for Canuck Place because you have to have a terminal illness. He said he had talked to our doctors and they really feel that it is not terminal it is going to take patience and time for this "bug" to disappear. I always wonder what the "word" is between the docs, I am just glad to know that they feel hopeful that she will kick this thing.
I love getting emails, please don't stop sending them it encourages me so much that people are reading the blog and interested and praying for Kourtney and the rest of our family.
3 comments:
Ilooking forward to reading your blogs everyday. My heart goes out to all of you! I sure wigh that there is more that I can do to help:( I am glad that you where able to get out of the hospital for the day. I am still LOL about Kourtney getting stuck in the door Too funny!! Enjoy your weekend with Todd and Shae and I hope to see you on Tues.
We too look forward to and love reading your blogs Janelle! It's just great to hear how you guys are doing...the ups and the downs and the specific things that we can pray for! We continue to think of you guys often and pray for you everyday!
Love & prayers,
Amy
Janelle,
I think of you and your family often and check your blog everytime I turn on my computer. I don't know how you survive everyday when most sound like hell. You are such a source of strength to your daughter and to your whole family so please don't give up! And for the rest of us, you are an inspiration and we are all learning from you. I hope you and your family finds peace and comfort. Take care of yourself. You are in my prayers.
Erin Levesque
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