I am working a different schedule this week because of spring break and I was unable to update the blog yesterday. Tonight I have a little more time so I can update you. Dad had another appointment at Brigham and Women's on Tuesday. He received a good report other than his blood pressure is still elevated. The again increased his BP meds.
There had been a discussion when Dad was in the hospital in December and January. Because he had the LVAD surgery, he is eligible for 29 days at the top of the list. The 29 days will be in a row and if a heart becomes available, he is on the tip top of the list to get it. He would again be 1A status. We were told by several ICU nurses ( off the record ) that a good time to pick is the spring. It is sad to think but with spring comes proms, graduations and it's awful, but accidents. It is good to be on the the top of the list then because donations increase.
Dad asked if he should move up or wait since he was doing so well. They again suggested that when you feel well is the best time to do it. While you are strong and healthy is the way they want you to go into surgery. They would rather you go in with everything to fight with. It's a little scary to think that when his 29 days are activated that at any minute any time of day or night we could be heading into Boston for a new heart.
The girls came over to visit on Friday night. They were watching nursery rhymes on Dad's phone with him and were amazed! Kerry mentioned that they didn't have a nursery rhyme CD or DVD so I bought them one at the dollar store this week.
Kylie's favorite was "Humpty Dumpty" who she calls "Humpy Dumpy" She made us play it over and over and Lilly just laughed and laughed.
Grammy and Julie sang some songs too. Julie just smiled and smiled and she is already "talking". She babbles away, it is so very cute! If she is talking at three months you know she's my niece!
The Girls also had a chance to feed Cleveland
They love to drop in his food and watch him swim to the top to eat. Kylie has a hard time not wanting to grab him! She puts he hands right above the water to point at him. I have to remind her to not touch Cleveland but to watch him!
Dad and Kylie did "homework" in a little notebook Dad had. She sat there for almost 20 minutes just "writing" in her book telling Papa what she was writing.
Lilly decided to dance instead in Julie's Boppy pillow which she referred to as her "tutu." I kept calling her four-four because it was so big, she didn't quite understand :)
I will leave you all with a little story:
Today Dad, Mom and I Facetimed with the girls. Kylie had on a cute shirt with a monkey on it and we told her how cute it was. I saw Lilly's shirt and said, "Lil, how cool you have a purple peace sign on your shirt." She said, "no it's not, it's a steering wheel." Brendan tried to explain that it was a peace sign, but she was pretty sure of herself and again told everyone it was a steering wheel. So it's a steering wheel! I have to say it does look like a steering wheel now that I see it. Maybe that's where the person who invented the peace symbol stole the idea from!
Well we are preparing for ANOTHER winter storm. I have to be to work at 5:00 a.m. so I am signing off until next Tuesday. I will be back to my normal schedule so the blog will be updated Tuesday night.
Thanks to everyone who still continues to support us and help us along the way. This is a very loooonnnggg journey but one that is worth the trip!
Until next week,
Laurie
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