Saturday, January 15, 2022

Saturday, January 15, 2022

Tonight's picture was taken in January of 2009. Mattie was home between hospital visits and that day friends dropped off several gifts for Mattie. You will notice that Mattie had several military patches sitting on top of his pajamas. These were given to Mattie by one of my former students. She is a Lt Colonel in the Air Force. She and her friends collected them as a gift for Mattie. In addition, a friend of ours knew the Dairy Godmother in Del Ray, Virginia. The Dairy Godmother herself sent along a special magic wand for Mattie and of course some ice cream! Honestly we were going through hell, and yet Team Mattie made us feel like we were a VERY VERY LUCKY family!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 65,358,248
• Number of people who died from the virus: 849,975

After I got my dad up, washed, dressed, had breakfast, and did his exercises, I went out with Peter to get our COVID boosters. Our actual vaccines were received in Washington, DC by a facility run by the MedStar Hospital system. Now that we live in Virginia, I had to figure out where to get a booster. I signed up for the booster through the pharmacy system at the Giant grocery chain. I wasn't sure how it was going to go today, but the pharmacist was lovely, gave us the shots, and he was so gentle, I did not feel a thing. It was remarkable. He asked us to remain in the store for 15 minutes post shot to make sure we did not have a negative reaction. 

So we took that 15 minutes to walk around the store. I made a b-line to the meat section to look for chicken. As the other grocery stores I have been to, the chicken counters are completely empty. To my good fortune, this store had some chicken, and I bought several packages to freeze for later use. 

Peter and I were away from home for about 90 minutes and it was a very welcomed break from my usual routine. It also gave Peter and I a chance to focus on each other, listen and converse. It felt refreshing. 

I am scared to get a reaction from this booster, so I am taking Tylenol around the clock. I talked to the pharmacist about this and he said it was fine, given that I did this after my first two shots. The only thing I feel right now is exhaustion. But it is hard to know if this is caused from my daily routine or the shot itself. I am going with my daily routine, managing two moves, and house renovations. 

Friday, January 14, 2022

Friday, January 14, 2022

Tonight's picture was taken in January of 2009. That day Mattie was invited to TWO birthday parties. I attended both of them with him. This party was for a kindergarten friend and the theme was a fashion show. In fact, Mattie was the ONLY boy at the party. Yet he tried to get into the spirit of things. All the kids dressed up at the party and then they had a little fashion show, as they walked down a pretend runway. Though Mattie wasn't able to walk, we tried hard to make him feel like he was participating. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 64,543,154
• Number of people who died from the virus: 848,074

Another day in paradise on the Farm. Though my dad is the one with significant disabilities, I understand his needs and have developed a routine with him. The one I am butting heads with is my mom. We land up arguing constantly. There are many reasons why we are fighting. At the heart of the problem is that the state of Virginia is foreign to them, they don't know their way around, they have no friends here, they have no routines, and therefore, because none of this exists, I am trying to fill this void. In a matter of minutes, I went from an independent person to one who is working non-stop and caring for everyone. It is a very hard adjustment and there is never a day off. Which means that anything I used to do before my parents moved in...... getting my hair cut, seeing friends, taking conference calls, doing Foundation work, is almost impossible to do. Therefore I admit to being frustrated and angry at times. Who wouldn't be when working around the clock?

Today I was in the car for most of the day. Because Peter isn't home, I had to take my dad in the car with us to Georgetown (in Washington, DC). So driving from Oakton to the District of Columbia can take me 45 minutes. My mom wanted to go get her hair done as well as her nails at my salon in the city. Typically I would leave my dad home with Peter, but that wasn't possible today. So I drove them into the city, I dropped my mom off. Then I went to my local Safeway in Washington, DC. Hoping that their shelves would be stocked with food, because what I am finding in Oakton is NOTHING. NO produce at all! While I was at Safeway, I left my dad in the locked car, parked in the sun for warmth. Thankfully Safeway had produce!

I literally got the groceries back home at 3:45pm. It's Friday, so traffic was bad. But at 5pm, I have to load my dad back into the car and drive to the city to pick up my mom. Of course in between I had to make my dad a sandwich, because it has been a long time without eating since breakfast. So to recap.... that was driving from Oakton (home) to Georgetown, Georgetown to Oakton, Oakton back to Georgetown and of course Georgetown back to Oakton. So in total that is 3 hours of driving!  

While putting away groceries, I looked outside the window and saw this huge Cooper's Hawk hanging out on our bird feeder. It maybe the way nature works, but I hate seeing these hawks grab the littler birds to eat. Sunny came to the rescue and chased off the hawk! Way to go Sunny!

Thursday, January 13, 2022

Thursday, January 13, 2022

Tonight's picture was taken in January of 2009. Mattie was home from the hospital and that day went to his "girlfriend" Charlotte's birthday party. Charlotte's family coordinated this party around the time Mattie would be home and able to attend. Mattie and Charlotte were amazing friends and they brought out the best in each other. As you can see Mattie was seated right next to Charlotte at the party. Ironically Charlotte did not like Scooby Doo until Mattie introduced the show to her. She feared it was scary. Mattie convinced her it was fun and watched it with her. Which explains why Charlotte was able to have a Scooby Doo themed party. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 63,959,111
• Number of people who died from the virus: 846,217

I got up this morning at 6am, so that I could get myself ready for the plumber's arrival. This meant making breakfast and starting chores earlier, so that I could get my dad up by 8am to shower, dress, give him breakfast and do exercises with him. Honestly by the time the plumber arrived at 10:30am, I felt like I put in a full day. 

The plumber spent the ENTIRE day with us. He left at 6pm. He changed all the toilets in our house. I truly did not want to do this, but given that each one had issues, we have no other choice. I want to avoid floods at all costs. To change toilets meant that the water had to be shut off for most of the day. Major issue as going to the bathroom is a frequent occurrence in my house. I set up a commode in my office downstairs for my dad, and he most definitely needed it. My typical day is a three ring circus, but today was over the top. I felt great pressure as my parents were uncomfortable with the lack of water and by 2pm, I told the plumber that I had to take my parent's out to lunch. 

I LOVE our plumber. He has worked for us since we moved in. We have spent a lot of time together and he has introduced Mattie Miracle to his company. A good guy. Fortunately, as I left him alone with our house and he was even keeping track of Sunny for me while he was outside. Needless to say I feel absolutely frazzled and unable to accomplish ANYTHING that I feel I need to do for myself and the Foundation. It is hard not to feel frustrated and angry. Maybe not a mature response, but it is most definitely a human one. 

When I got back home, I had about two hours of cleaning to do in each bathroom and on our first floor tile floors. Just going from the outside in around here carts in a tremendous amount of dirt and the plumber was back and forth all day today. So all I can say is I have reached my maximum for today. 

Wednesday, January 12, 2022

Wednesday, January 12, 2022

Tonight's picture was taken on January 22, 2009. Mattie was the photographer and he captured the excitement of all of us in his room. Going counter clockwise was me, Jenny (Mattie's art therapist), Jessie (Mattie's art therapist), Linda (Mattie's child life specialist) and Anna (Mattie's physical therapist). Each of these women were incredible and I can't imagine managing through childhood cancer without them. They helped make the long and arduous days in the hospital bearable. In typical fashion there were more things on Mattie's bed than one could imagine. But one thing was for sure, the one thing typically not in Mattie's bed was Mattie!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 62,727,044
• Number of people who died from the virus: 843,624

Sometimes I wonder..... what haven't I done today?! Today was one of those days. It started with calling to get my mom an ultrasound and cardiologist appointment. The cardiology office was a riot. The first available appointment was the end of March! I told them.... NO I don't think so. So now we are seeing the doctor on February 8th! I honestly do not know what some patients do without an advocate. 

After the calls, I made breakfast, cleaned out the cat's litterbox, got my dad up, showered and dressed. I changed my parent's bed and did three loads of laundry, and the list goes on. I did occupational therapy and cognitive exercises with my dad. Then I vacuumed the second floor of the house and dusted. I wish I could say it ended there, but it did not. Literally from the moment I wake up until I go to sleep, I am moving. Constantly. 

With all this activity, I find I have no energy or interest in doing anything else. That sometimes includes responding to emails, phone messages, and forget about Foundation work. Each day I say to myself..... I will carve time to do X or Y or Z today. But then another day goes by and poof, it is over. I did complete all 70 acknowledgments for the Foundation's annual drive fundraiser, which felt like a feat. But I was determined. All I can say is I don't need more pressure. So I take it one day at a time and try not to get down on my inability to complete work like I once did. 

Tuesday, January 11, 2022

Tuesday, January 11, 2022 -- Mattie died 641 weeks ago today. 

Tonight's picture was taken on January 17, 2009. Mattie was home from his trip to NYC and as you can see he and Peter built the Empire State Building out of a metal erector set. We bought that set at the Empire State Building gift store. That little green figure at the top was supposed to represent King Kong. Mattie absolutely loved building, creating, and had a natural understanding for how things worked and went together. Which was why I always called him our "little engineer."

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 62,153,639
• Number of people who died from the virus: 841,981

This morning I was getting my dad showered and dressed and the phone rang. It was the physical therapist who wanted to come over today. So I had to juggle him! He came and worked with both of my parents. However, my dad is dealing with extreme exhaustion and my mom is dealing with swollen feet. The therapist worked with them accordingly. On an aside he was telling me about a physical therapy study about the benefits of doing some exercises throughout the day, rather than at only one time per day. He gave me an example. Let's say you had four patients and patient #1 did one exercise, 20 times, at one time a day; patient #2 did one exercise, ten times, twice a day; and patient #3 did one exercise, 7 times, three times a day, that patient #3 would be in better physical shape. That the body responds to repetition and the muscles develop memory if you work them throughout the day. Fascinating no? Therefore the therapist is trying to inspire my dad to move his body throughout the day, not just hurry through his exercises in the morning and be stagnate the rest of the day. 

After walking Sunny, I then packed my parents up and we headed to Falls Church, for a doctor's visit. The doctor examined my mom's legs and feels she is dealing with Chronic Venous Insufficiency. Which is when your leg veins don't allow blood to flow back up to your heart. Normally, the valves in your veins make sure that blood flows toward your heart. But when these valves don't work well, blood can also flow backwards. This can cause blood to collect (pool) in your legs. He wants her to get an ultrasound to rule out blood clots and we will also see a cardiologist. So I will schedule these things tomorrow. But here is a photo of what Chronic Venous Insufficiency looks like. It involves varicose veins, swelling, skin color changes and ulcers (in the later stage).

I would say there is great stress in my life. As caregiving has a deep emotional component to it. At times my mom expresses she isn't happy with her life, and of course this makes my dad upset to hear. Which causes him to express his unhappiness and together at times they both say they wish they weren't alive. I of course am listening, I understand their feelings and frustrations, but try to normalize the feelings and provide hope that things will stabilize and we will get a routine together. 

Monday, January 10, 2022

Monday, January 10, 2022

Tonight's picture was taken on January 14, 2009. We were in NYC, so that Mattie could receive experimental treatment. While there, we took Mattie on several adventures. Like going to the top of the Empire State Building. I was expecting crowds and long waits. But that day things were moving and we got an express elevator to the top. Everyone working there was very kind to Mattie and it made for a beautiful and memorable day.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 61,397,324
• Number of people who died from the virus: 839,372

Last night my mom showed me her feet. One was terribly swollen and the other one was slightly swollen. She was convinced this had to do with her heart. Which of course sent me right over the deep end. To me the issue came on too acutely and for the most part, she doesn't have heart issues. Therefore I attributed the swelling to TOO much physical therapy exercise. Yet I am no doctor. So this morning at 8am, I called our doctor's office. This is the doctor I signed all of us up for, who offers concierge service. Those of you following along, may remember that I decided I couldn't take this doctor because of his unwillingness to treat my recent sinus infection, and therefore I returned to my previous physician. 

In any case, I called the concierge doctor at 8am. No one answered, so I left a message. I called the office back at 8:30am and the manager answered the phone. He told me that the soonest the doctor could see my mom was Thursday afternoon! I honestly thought that was a riot. I told him that this concierge practice is abysmal and that he can let the doctor know because of how poorly run the practice is, I returned to my previous physician. The manager said he would contact the doctor immediately to determine if he would see my mom on Tuesday. Concierge service isn't inexpensive and you are paying to have access to a physician at all times. This particular physician truly doesn't get this concept or even abide by it! On an aside, my nickname for him is Dopey Doo! If you know me well, then you know I have nicknames for people who drive me crazy! 

Meanwhile, I have my mom's feet elevated, I have wrapped her foot that is swollen with an ace bandage and I have iced her foot. It seems to be helping. But this doctor's office has me super frustrated. The whole point of me leaving my long time doctor was to get access to a physician without going through gate keepers. However, this concierge physician refuses to answer his cell phone during business hours. Instead, he insists you call his office staff. To me this is NOT concierge at all. 

My dad's occupational therapist came over this morning. She is absolutely LOVELY! She has started my dad on a whole new exercise regimen and is working both his body and his mind, which is wonderful. But of course, just like with physical therapy, the burden falls upon the family caregiver to perform these exercises daily. This is the part of Medicare that needs to be rebooted! They have NO regard for the tireless work performed by the family caregiver.  

Peter is in Atlanta but before he left, he created a paper reminder about his trip and left it by my dad's side of the breakfast table. This is fabulous, because on it I have created a count down chart, so my dad can check off the days that go by until Peter's return. My dad has many, many anxieties, and in a way OCD. For example, this morning he almost flooded the toilet again. This time I saw the problem in action. So I reached out to our plumber and we are replacing the toilet with a new one on Thursday. As this toilet is clearly old and can't handle massive amounts of paper my dad throws into it. My dad is concerned about the toilet and the whole day he asked me when the plumber was coming and specifics about the new toilet being installed. The average person could lose it after repeating the same thing about 50 times, but I remind myself once again..... this is not my dad. 

Sunday, January 9, 2022

Sunday, January 9, 2022

Tonight's picture was taken on January 28, 2009. Mattie was back in the hospital and as you can see a lot was going on right in the middle of the pediatric hallways! Mattie was having a physical therapy session. What you may not know though, was the person sitting down was another family member. So she had nothing to do with us. The couple walking down the hallway were also parents of a child in the hospital. Again nothing to do with us. Then there was a man standing on the right. That was Mattie's psychiatrist, you have Anna, his physical therapist, pulling the IV pole and for the life of me, I have no idea who the woman was next to Anna. Who she was observing Mattie. I love when hospitals talk about HIPAA. All I know is when living in the hospital, all of this is truly meaningless. Or at least it was to me. My focus was Mattie and I could care less who knew what about us!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 60,062,077
• Number of people who died from the virus: 837,504

In addition to everything else I am managing, I am also balancing my dad's IBS (Irritable Bowel Syndrome). If you haven't experienced caring for someone with IBS, all I can say is it's a handful. Irritable bowel syndrome (IBS) affects up to 10–15% of adults. It has a significant worldwide prevalence. Although IBS is not associated with an increased risk for life-threatening illness, it is associated with a significant health care and economic burden. Studies have shown that IBS patients have an increased number of outpatient health care visits, diagnostic tests, and surgeries. IBS can also severely compromise a person’s quality of life. IBS is second only to the common cold as a cause of absenteeism from work.

Since I landed in Los Angeles on November 18, I have been with my dad daily, 24 by 7. Since that point, his IBS has been under control. I did visit his gastroenterologist before leaving LA, and in order to manage my dad's situation, he takes Metamucil (large quantities) daily. That may sound counterintuitive, but natural fiber helps to manage his form of the situation. However, what I have observed is that my dad's IBS is VERY VERY connected to his emotional state. If he is nervous, anxious, and worked up, he will have a terrible bout of IBS. Which leads to diarrhea like you have never seen. It is explosive. 

My dad has worked himself up this morning into a silly about the fact that Peter was flying to Atlanta today for a week. Peter has a work trip and my dad has been asking A LOT of questions about this trip all week. But today was travel day and my dad's anxieties increased big time. I could tell this as soon as I woke him up and helped him shower. 

Soon after breakfast, my dad wanted to get up to go to the bathroom. But it was too late. Poop was all over him, the floor, everywhere. It was overwhelming and my dad can't stand long, balance, or help in the process. Of course I started to get hysterical. Not because he was making a total mess, but because I have told him time and time again that Peter's leaving isn't a problem. That he is coming back and I am not going anywhere, and I AM THE ONE meeting his every need. My dad doesn't like when I raise my voice, but as I told him today, I am only human, and though I manage A LOT there are times, where I too get overwhelmed and it comes out as yelling. 

Fortunately for my parents I am not squeamish and have no problem managing poop, vomit, and other noxious issues. But I am quite sure that not every child could handle what I face with my parents on a daily basis. In any case, my dad has been out of it for the rest of the day. The bout of IBS totally wore him out, and managing his daily anxieties and pervasive cognitive and physical issues are enough to wipe out an army.