Thank God Nina slept!!! When I returned from Vons after midnight she was asleep. She didn't wake up again until 3am. The three of us chowed on McDonald's french fries (who says reheated fries aren't good!) and vanilla yogurt with granola. After she ate, Nina turned to me and thanked me for the yummy food before drawing me in for the biggest smooch ever!!! Then she crashed again.
When my alarm rang at 7am I couldn't believe we'd had a relatively calm night. I went upstairs and woke up Teddy with a kiss. I whispered in his ear, "Oh my goodness you are so warm...you are like a little heater!" He opened up his covers and in a hoarse morning voice retorted, "Crawl on in and let's get cozy!" I just laughed as I wrapped my arms around him!! What a character! After cuddling for a bit, I proceeded with Teddy's new room service routine, which not only consists of breakfast in bed but his favorite dvd on his computer, all hand-delivered.....all that is missing is the silver tray :)
When I returned home, the girls were still asleep. I quickly hopped into the shower and was back downstairs before the girls work up. I texted Yvonne (who was coming up to stay with us for a couple of days) to see where she was and then made myself a warm cup of coffee. I had literally just sat down when I heard the girls wake up. First thing Nina said, "I'm hungry. What's for breakfast?" The second thing she said, "When can we go to a new hotel?" Sosie and I just laughed! Nina is magical!!!
We spent the day being girlie!! Sosie did Nina's make-up again and it looked gorgeous!! We then went and shopped for more birthday decorations and goodie bags for her friends. Before we left for our daily errands, I called our Hospice Nurse. Linda had urged me to advocate for more support. I agreed we needed more and after having spoken with Laura (our Hospice nurse) on Monday I knew I could ask for something that would elevate Nina's mood while not completing doping her up! The lack of sleep was not okay and it was compounding Nina's misery. I spoke with Laura and we agreed that she would get the doctors to prescribe Verced to help get her to fall asleep faster. We then discussed doing a formal intake with Hospice on Monday so that we could have all-around support.
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| Sosie you're embarrassing me! |
On our way back home, Lynn Koegel texted to find out if Nina was still interested in spending the night at a hotel and if so when. I said that she would be ecstatic and that tonight would work best, given that we had family coming into town. Lynn said that she and her friend Mer from the Teddy Bear Cancer Foundation would do their best. As it turns out, Lynn and Bob Koegel ended up sending us to the Biltmore in Montecito. Earlier last week I had said that the Teddy Bear Foundation had given us this treat but I stand corrected, it was a gift from the Koegels to Nina.
When I told Nina we were going to a new hotel she lit up. As Yvonne and Sosie packed for girls night away I ran to the store to pick up some of Nina's snack requests. When I returned Nina was still naked (in her pull ups only) and refusing to get dressed. Todd and Yvonne had offered several outfits but she refused them all. I said she didn't have to wear clothes which they practically bit my head off for. I told them to hold their horses as I explained that she could wear her robe. Eureka!!! She loved the idea! Sosie then suggested we all wear our robes, which Yvonne and I found to be a perfectly delightful idea!!!!
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| In the Biltmore lobby with our robes...Nina humiliated :) |
So we loaded up Nina and all our gear....it looked like we were going to stay for a month! As we drove to Montecito I started to laugh hysterically and told the girls I felt like the Beverly Hill Billies....driving my beat up Toyota Sienna, with the broken windshield, missing hub cap and recently smashed in passenger side :) All we needed was to be thumping loud music as we pulled into valet and we'd for sure win the most outrageous guest award :)
Our stay at the Biltmore was wonderful. The staff were generous and kind, upgrading us to a killer suite with a view of the ocean. Nina was greeted with a plethora of gifts from the hotel and a smorgie of designer made desserts. The bath tub was even decorated for her :) All in in all our stay was lovely. We have her 2mg of Atavan as prescribed by Hospice, which helped some with sleep. She did take a while to fall asleep and whimpered off and on, stating that she couldn't get comfy until about midnight. The rest of the night was reasonable with just mild tossing and turning. I was grateful for this welcome distraction of Nina and for the opportunity to escape into the darkness for a tiny bit. With Yvonne and Sosie next to Nina, I felt comfortable taking a few moments to process my emotions. I felt battered by the new onslaught of torment. I needed reassurance and that night I got it!!!!
Hotel nights are the best! God's perfect timing for you girls! And showing up in your bathrobes?!?!? What a hoot! I'll have to remember that one and try it sometime! Also loved the bath treats for Nina. Her name spelled out in (I assume) soap. Is that TOOOOOOO sweet or what???? I'll have to remember that one too. That hotel looks so awesome. What a TREAT!!!!!
ReplyDeletepraying always for your family,
lynne
rosy, i love the image of you driving up to the fancy hotel in your beat up van!!! i also love the picture of you guys in your robes in the hallway. thinking of you and praying always!!! xoxo, breea
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