Claudia saw mom early this morning and did her physical therapy and the IPAD with her. Ava came next around 9 and visited until 12. She did some physical therapy and the IPAD as well. Anthony came around 10:30 and stayed until 1:00. When I arrived at noon, Anthony and Ava had mom laughing!!! A real belly laugh!! Out loud too! Anthony was telling her that soon she'd be saying, "See ya!" and waving to the people at the facility because she would be going home. They both said she seemed sad and pointed to the trach a few times when asked why she is sad today. Anthony and Ava also tried writing with mom on the dry erase board with markers. She held the marker and made random marks on the board a few times but then handed them the marker and said, "Help" because she wanted it closed and put away. She kissed Ava good-bye when she left. Anthony and I played with the IPAD with her. She was identifying vegetables and a picture of Bok Choy came on the screen... I said, "Boy, I don't know what that is!!" Mom said, "Cabbage." When Anthony left, she kissed him and said, "Bye." Later, I did the Drawing Pad on the IPAD---mom seemed to like it a lot and manipulated the program alone on and off as well! She mumbled something to me 4 times during that time but I couldn't hear what she said. Mom's night nurse wrote in her "Love Notes to Dotty" book that she "caught" mom playing with one of her stuffed pigs last night when she walked in!!! She was playing with Olivia, the pirate pig (she sleeps with the pigs too). We have 2 long stuffed pigs that we give to mom to hold when she sleeps and is just resting so she doesn't hold the trach. Dad came around 2 and Maureen came around 2:30ish. Mom said, "Hello" to Maureen and gave her a kiss. Mom pushed her hearing aid back in her ear when it came out (twice) and frequently adjusted her eye glasses. Con, Anthony Michael, Samantha and Sam's friend, Emily, came tonight to see mom. They said she was relaxed but relatively still and quiet. She either seems tired or sad at times today. It is exhausting to exist and do the things we take for granted. Please continue to pray for strength and joy in mom.
The bed rail saga....the rails were down this morning again. We complained to everyone. Each person gave us a different story as to why they needed to be down---but all included that it was against the patient's human rights and a form of restraint. No matter who we spoke to, no one would tell us who had the final say or who else to talk to. Finally, in answer to prayer, one of our inside angels told me to go to the Building CEO/ Administrator...I did go. It took me almost an hour of waiting before I saw him but he made time for me. He was appalled that the rails were down and that people took the guideline to the degree they did without regard for individuality. He was also shocked that no therapy has been given to mom by the facility. He called the head person in therapy and told that person to do a personal evaluation and assessment on mom tomorrow. He was sad that no one really gets excited by the steps mom is taking all along and said that they all should give us hope and encouragement along the way. He also said that mom will always have enough green diapers as well. Then, he walked to mom's room with me to meet her. It was 3:40 by now and mom was tired but she looked at him when he walked in and said hello and she smiled at him as well. She was totally pooped by then. He stayed with Dad, Maureen and I for quite a while chatting and getting to know mom. He said he'd be by to see her tomorrow morning and midday to assess her at different times of the day as well. He gave me his cell phone number and said we can call or text him any time with problems. He said they should be working side by side with us and that no one should have given us things to do with mom and walked away. He also commented that they all should think outside the box and if Medicaid/Medicare does not approve therapy...they should at least provide something several times a week if not every day.
It was an exhausting and long day for me. I tucked mom in at 9 p.m. and Lenny and I are on our way back to make sure the rails are up now. Thanks for the prayers. Keep praying for joy and strength and improvement. And that mom knocks the administrator's socks off tomorrow when he comes to see her.
"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
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