Friday evening, we headed home, and Amy ordered Italian food. Amy’s brother and his wife (Mark and Sheryl from Florida) came over for dinner, and I did the typical dinner (mixed food, ice cream, drugs, etc.) in the kitchen. After they left, I made my way to the bedroom and got it – with a lot of help from Amy. Then I set the new urinal and went to sleep.

Saturday morning, we finally got up, took a shower, and went to the kitchen for breakfast. Around 1 o’clock, Alyssa and her family showed up to start getting everything ready for the party (Amy’s birthday celebration). The kids stayed in the house while Alyssa and Adam began to set things up – they made a space. Over the next few hours, about 20 members of the family arrived (from Florida, Texas, New Jersey, etc.). Then the party began (sadly, I stayed in the house since I was not comfortable being outside with all the people, as I was laughing so much). The event was a huge success, and everyone (except me) had a great time. They even had a chef who prepared dinner. At one point, Amy came into the kitchen and made me a steak and vegetable mix. Around 8:30, people started to leave, and they all came into the kitchen to see me. Then I had my ice cream and went to the bedroom. Amy had some cleaning to do, and we went to sleep pretty late.

On Sunday, a good friend of mine, Jeffrey A. Wigodsky, was coming over, so we got ready for his arrival. Jeff was a friend from high school, and then he moved to the D.C. area and is licensed to practice law in Maryland, Virginia, and the District of Columbia. I started my day a little differently. I crushed each of the medications and put them in the feeding tube individually. In the past, I combined all of them in the feeding tube. He arrived around noon, and we spent a lot of time together. Another good friend, Donald Teplitz, came by to see him and spent close to 2 hours. After he left, Amy had some things to do, and we stayed in the living room (Jeff helped me move around the house). He not only stayed for dinner but also slept in our home that night. Amy & Jeff had dinner in the dining room (I was in the kitchen having my classic dinner), and then I went to bed and they hung out for a while. The next morning was going to be a game-changer.

On Monday, Amy was having breakfast with Jeff, and my caregiver, Alex, showed up (going to stay at our home 5 days a week). Jeff came into my bedroom, wished me well, and then headed back home. Alex got me up, took me to the shower, washed me, helped me get dressed (even put on my compression socks), shaved, and then we went to the kitchen. This time, I decided to have some ice cream and took my medication through my mouth. When I was done, Alex took me to the physical therapist (a bunch of leg exercises), he got some lunch, and when I was finished, he took me home. I then went to my office to try to work on the computer (typing is really difficult these days). Amy took Alex to a supermarket to buy his favorite food, and when they returned, they moved me to the bathroom. Randi & David Rosen were picking up dinner for all of us – I was getting lasagna! After I had my ice cream (and drugs by mouth, not the feeding tube). After Alex and Amy took me to the bedroom, got me up, and then I relaxed for a little bit, I finally went to sleep.

Tuesday was a workday, and Alex got me showered, dressed (including the compression socks), and then headed to the kitchen. Amy gave me some yogurt to take my medication (also had a couple of spoons of ice cream). Then I used the feeding tube to take the protein shakes. At one point, the protein did not enter the body; the amount in the tube just sat there (this happens often). Not sure why? I will add that when it finally goes in (takes a long time), I then put some water in the tube, which goes quickly, and the next protein amount goes in quickly. Anyway, Alex helped me get to the car, and Amy drove us to the gallery – we arrived around 11:30, and Alex helped me get in and out of the bathroom. I had my Doxy at 12:30 and then had lunch at 2:30. Additionally, I noticed Alex was assisting Lance in the gallery. We headed home around 5 PM and got there before 7. I had some spicy Indian food in the kitchen (took the drugs as well) while Amy and Alex had dinner in the dining room; I also had a little ice cream and a toothbrush. Finally, I got to the bedroom, where Alex and Amy helped me get into bed. I watched a little TV and fell asleep.

On a side note, I am losing the muscles in my neck. When I lift my head, it falls backwards … and it is not fun. Also, the left leg is getting weaker (I have a lot of trouble moving the foot).

On Wednesday, I was using the new urinal, and in the morning, it developed a small leak. Amy massaged my leg, and then Alex came in to get me up. They took me to the shower, got me dressed, and then Amy took care of my hair. After that, I was in the kitchen. I had ice cream to help swallow the drugs, followed the protocol, including protein shakes, and then brushed my teeth and shaved. I had the Doxy around 1:45, and then we started getting me out to go to the physical therapy – Alex took me. He also discussed my issues with the therapist, and they decided to do some leg work, massage, and arm work – starting with 2 lb. dumbbells and then switching to 1 lb. dumbbells. (Previously, I used 12 lb. dumbbells.) We got home, and new mattresses were in the bedroom. They were a bit low, so Alex and Amy added a little height by using bed raisers. I went to the kitchen to have lunch while they were working. After Alex got me to the office, I was able to do a little work. At 6:30, I had my Italian dinner (covered my glasses with the dinner), drugs with ice cream, and then I went to the living room to watch a little TV. Finally, Alex and Amy took me to the bedroom to see if I was ok with the new mattresses. All seemed fine! I went to sleep because tomorrow was a busy day.

 
On Thursday, I was up before 8, showered, and got dressed (with Amy’s and Alex’s help) before heading to Columbia for a new feeding tube installation. Got to the hospital around 10:00, and I was finally in the operating room around 12:30. I had the new tube installed, then I went to the recovery room. It took about 20 minutes, and I was ready to leave. When we arrived at the house, Alex helped me get in, took me to the kitchen, and then I had two protein shakes (first food of the day). For dinner, I had a hamburger (mixed), followed by ice cream and drugs. Amy & Alex went to the dining room. I then went into the living room and watched TV with Amy & Alex. After finishing, I returned to the kitchen to use the toothbrush and then went to the bedroom, where Alex and Amy helped me get into bed.

Friday morning, we got up, showered, dressed, and went to the kitchen for food – with Alex’s help. This new tube is much harder than the old one. I need to insert the gastostomy tube into the port now , and it takes a while. In addition, I am having trouble sitting up, and trying to get all the medications out is difficult. I am also having trouble using the spoons; my hands are no longer strong, and I am dropping them. We then headed to the gallery, arriving around 11:30. I need to say that the Lance, Alyssa, Nathan, and Neil did an amazing job setting things up. I had my Doxy around 12:30 (needed Lance to help), and then lunch around 2:45.