Saturday, August 26, 2023

Saturday, August 26, 2023

Tonight's picture was taken in August of 2008. That day, Coach Dave, from Mattie's school came over to visit with us. He wanted Mattie to receive a football which was signed by all the members of the school's team. In addition, Dave gave Mattie a team photo, that had a supportive message to him from the team. Though Mattie did not know Coach Dave when he was in kindergarten, Dave became a valuable member of Team Mattie and supported all of us on our very difficult journey. I will never forget Dave's kindness and this moment in time. 

Quote of the day: For it is in giving that we receive. ~ St. Francis of Assisi

This photo was taken in May of 2022. We were at the Clyde's of Reston. Which unfortunately closed its doors in June of 2022, after decades of service to the community. In any case, that day we took a photo with Dawn (our fabulous server) and Anthony (the assistant general manager). 

We developed such a close rapport with Dawn, that we have followed her to the Clyde's in Rockville, Maryland. It is a 45 minute commute back and forth to see Dawn, but in my opinion, she is worth the trip. Unfortunately once the Reston Clyde's closed its doors, we do not get to see Anthony on a regular basis. Anthony now is the general manager at the Clyde's of Georgetown. This is NOT a location that will work for my parents, as parking in the city is complicated and the sideways are very uneven. 

We visited with Dawn today at the restaurant in Maryland. I make this journey every Saturday, as I like to do consistent things with my parents. It helps give my dad structure and routine. When Dawn brought over our check at the end of our meal, she let us know that Anthony called in from Washington, DC to comp $100 of our dinner. He was doing this as a belated anniversary gift to my parents. Truly a very special individual. 

Naturally we spend a lot of time at Clyde's restaurants each week, but the people who work with us treat us in a special manner and such kindness and generosity does not go unnoticed by me.  

Friday, August 25, 2023

Friday, August 25, 2023

Tonight's picture was taken in August of 2008. It was Mattie's first month on chemotherapy. We were home between hospital admissions, and Kathie, Mattie's occupational therapist came to visit us. Kathie worked with Mattie from age two to age four, so before cancer came into our lives. Mattie and I had quite a journey together. At age two, he was asked to leave his Montessori preschool, since he bit several students and the director herself. Mattie was already seeing a speech therapist, as he was a late talker, but it was through the speech therapist, that we got connected with Kathie. Mattie had a sensory integration issue and for two years, Mattie worked with Kathie twice a week, and of course I had lots of homework to do. However, by the time Mattie entered kindergarten, NONE of his teachers knew he had any sensory issues. That was the beauty of early intervention and being connected to the right occupational therapist.

Quote of the day: If shopping doesn't make you happy, then you're in the wrong shop. ~ ANONYMOUS

I dropped my dad off at the memory care center today and then went grocery shopping. When I got home, I prepped dinner for tonight, and then I could tell my mom was bored and in need of direction. My mom hates staying home. She prefers going out and about, which makes my life much more complicated. I rarely have time to get anything done, because I am either balancing my mom's or my dad's needs. Or both of them at the same time. I used to get frustrated by this, now I just accept that this is my life as a caregiver. But it takes a lot of inner strength and patience not to blow up now and then. 

I took my mom out to lunch and then shopping for clothes. There is an outdoor shopping complex near us that we both love. It is small, easy to walk, has lovely landscaping, and we have gotten to know the server at the restaurant there, as well as the women who work at Chico's. Which makes it a very social retail experience. One thing that is true about me, is that I like to connect and to get to know people. Though my life looks different now, the core of who I am has and will never change. I am fascinated by people, I love hearing their stories, and I absolutely appreciate their kindness to me, as I balance my parent's needs. 

While helping my mom at Chico's today, I was running around looking at things and matching items together. I guess I appeared to know what I was doing, so much so that customers came up to me for help. You just got to laugh! I had to explain to them that I don't work there. One of my very first jobs as a teenager was working for the clothing store, The Limited. I always liked clothes, was interested in fabrics, colors, and putting combinations of items together. I suppose that has remained with me over all these years. Any case, the staff at Chico's told me that if I am ever interested in working there, that I should let them know. 

What I do know is that getting away from home, was a positive outlet for us today. Given that very few days are positive here, I welcome one when it comes along. 

Thursday, August 24, 2023

Thursday, August 24, 2023

Tonight's picture was taken on August 24, 2008, 15 years ago today. Sometimes I pause and truly wonder.... was this a part of my life? It was over a decade ago, and yet it is always with me, and a part of my life. Time does not help or provide comfort, instead, it fades specifics and aspects of my memory. I write each and every day, to keep the essence of Mattie alive, so that I have the opportunity to actively work on keeping his voice, his laughter, his smile, his eyes, the way he thought, and so much more alive. Without daily work, these subtilties that make Mattie, Mattie, disappear. 

This photo was taken in Mattie's hospital room. The white board was used to record his intakes and outputs, and to record medication administered. Mattie had other ideas, erased the board and instead CREATED this funny face.  

Quote of the day: Live life in a way, so that you remain in the memories of everyone. ~ Invajy

This morning, I decided to call my dad's urologist to follow up on his urine culture results. The results showed that he has blood in his urine. Given that myself and my dad are kidney stone sufferers, I don't panic when I hear about blood in the urine. I am well aware of the fact that my dad has a 12mm kidney stone in his left kidney. He has had it there since 2020, perhaps even earlier. 

In March of 2020, my dad went to the hospital with urinary sepsis. He had a stone blocking his ureter and needed immediate surgery. After that surgery we learned about the massive stone in his left kidney. This health crisis occurred during the time of COVID, so none of us could be present in the hospital to ask questions. Nonetheless, I have always wondered.... why didn't they use lithotripsy to remove that large stone when he was under anesthesia for the ureteroscopy? 

My dad's urologist was unable to see him today, so we saw the doctor's colleague. Dr. Levy gets 5 stars! Those of you who know me, know that I am very hard on doctors. This urologist is not only competent, but is a compassionate human being. He started with conversing with us and getting to know our dynamic, since all three of us were in the examining room. 

Long story short, there is NOTHING TO DO! Given my dad has a 12mm stone, blood in the urine is common. Since he is not symptomatic and the doctor feels this stone will not disintegrate on its own, without medical assistance, the plan is to leave the stone exactly where it is. The doctor also felt that lithotripsy wasn't used on my dad in 2020, most likely because of the concern of keeping my dad under anesthesia for too long. The goal back then was to remove the immediate threat of the stone blocking the ureter. It all makes sense. I can't tell you how grateful I am to have a line up of outstanding specialists to assist my parents. 

Before the doctor said good-bye to us, he shook my hand and congratulated me for taking such good care of my parents. He told me that given all of my dad's health concerns, my dad looks great. Well cared for and happy. I can't tell you how much his feedback meant to me. I work very hard each and every day, and usually do this without any kudos. The doctor basically told my parents that he doesn't see many 88 year olds in his office who are in as good of shape. GOLD STAR FOR VICKI!

What I do know for certain is that if anyone in the Washington, DC area needs a referral to a cardiologist, a pulmonologist, or a urologist, I LOVE the three that we work with, and will share their contact information any time! 

Wednesday, August 23, 2023

Wednesday, August 23, 2023

Tonight's picture was taken in August of 2008. It was Mattie's first admission to the hospital and that day he was sitting at the art table with his two art therapists (Jessie and Jenny). I can't tell you what a God sent these two women were to all of us. They helped to fill up the hours and minutes in the hospital in a positive way, and I can't tell you what insightful dialogue arose from Mattie around this table, while his hands and mind were busy creating. It was through the act of creating, that we learned about Mattie's inner thoughts, feelings, and fears. 

Quote of the day: When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. ~ Sophie Loren

I am happy to report that Prednisone and Melatonin are working for my dad. He is finally NOT scratching. I literally have been dealing with non-stop itchiness and scratching for over a month. Truly I thought I was going to go insane as there was NO visual explanation for his itching behavior. At first I thought it maybe a psychiatric thing, until I stopped and said..... is it a reaction to a medication? The answer was YES, but until we figured this out, WOW! 

My dad hasn't been sleeping well, up at all hours of the night scratching, and as a result, my mom hasn't been sleeping well either. I knew I had to get down to the bottom of this issue. I asked for steroids two weeks ago, but doctors are hesitant to prescribe them. If I had my way, my dad would be on steroids daily. He is more alert, engaged with the world, and has a better quality of life on steroids. But doctors do not agree with me. I would like them to come work with him on a daily basis and observe what I do! In any case, a day of not scratching is like receiving a miracle. For a month, I have been applying all sorts of creams, ointments, lotions on him around the clock, and having him wear sports sleeves and gloves to protect his skin. Because of his incessant scratching, he'd bleed all over the place, which meant more laundry than usual. I am worn out and Prednisone came just in time!

After I dropped my dad off at his memory care center, I took my mom to see the physical rehab doctor. He is the wonderful person prescribing physical therapy at the hospital and he is overseeing the physical health of both of my parents. I met this doctor when my dad was placed into acute rehab at the hospital in March of 2022. I knew right then and there that I had to continue this relationship, as he is a vital resource for my parents. Especially if they were to become hospitalized. I think the doctor is pleased with my mom's improvement in walking and balance, but he renewed her PT script and added work on her neck mobility. 

My mom felt good about her appointment. We then went out for tea and snacks before picking my dad back up. While eating we conversed about many of the stresses I am facing. My mom and I have different ways of dealing with problems, but the conclusion I came up with is that my mom does truly care about me, my future, and my overall health. Sometimes I wonder, but Sophie Loren's quote spoke to me today. As my mom maybe focused on herself most days, she doesn't forget about me and gave me the assurance I needed today, that reminded me that I can handle whatever life brings me. It meant a lot to me to have this vote of confidence, and to see that my life is much bigger than this particular moment in time. 

Switching subjects. Kim Richards (a wonderful local impressionist artist) is working with us to capture our house and its landscapes in four oil paintings. Right now, she is in the sketching phase and also uses gouache watercolor to give us an idea on colors. One of the sketches she did of our front yard was this, I happen to love it but we suggested she add Sunny and also provide more context with sky. 

Today, Kim sent us this sketch to incorporate some of our suggestions. Needless to say this is a process, which I am truly enjoying, and I love working with Kim. She teaches classes and one day in my future, I would love to become one of her students. I love to create, and I believe I am creative in different ways, but I think being able to paint would be a true gift. 

Tuesday, August 22, 2023

Tuesday, August 22, 2023 -- Mattie died 725 weeks ago today.

Tonight's picture was taken in August of 2008. It was Mattie's first admission to the hospital for chemotherapy. I remember this day vividly, as we gathered in the hallway to make masks. Back then, there was NO child life playroom, so all activities took place in the middle of the hallways. Not ideal. Nonetheless, Mattie made this beautiful mask, and for years I had it on display, until it completely disintegrated. But what I won't forget is how crucial these art projects were for us, as they helped us focus on something else other than the life threatening illness that loomed over our heads. We learned the importance of art projects, during Mattie's first hospital admission. 

Quote of the day: If you’ve ever seen shimmery spots or flashing lights, or worse, experienced blind spots, you know that random visual disturbances can be mega creepy as far as health symptoms go. When spotty vision resolves fairly quickly, it’s easy to chalk it up to a bad week of sleep, your intense new hot-yoga regimen, or even just good old-fashioned aging. However, if you frequently experience bouts of temporary vision problems—with or without other symptoms like a headache, dizziness, or nausea—ocular migraine could be the reason. ~ Petra Guglielmetti

Since I am right in the midst of an ocular migraine attack, I will make this short. I took my dad to the doctor today, and instead of an allergy to his diabetes medication, the doctor thinks he is having a bad reaction to the antibiotic he put him on. My dad was on two courses of antibiotics because he has been scratching his skin non-stop. In the process, my dad created many open wounds. 

The doctor put him back on prednisone today for five days and wants him to resume the diabetes medication. I will comply, but to me the verdict is still out on the diabetes medication. Needless to say, the doctor wants me to call him tomorrow with an update, because what you see on my dad's feet and legs are all over his body. My dad is constantly scratching, up at all hours, and none of us have had a minutes peace for a month. 

Monday, August 21, 2023

Monday, August 21, 2023

Tonight's picture was taken in August of 2008. This was Mattie's first month in treatment and that day he was in the out patient clinic, working at the art table. Mattie got the chance to experience working with pottery clay and created many wonderful pieces during his cancer treatment. You may see a big piece of pottery in front of Mattie. He designed a drive-in movie theatre and the big part of the structure was the screen. That day, Mattie was glazing his creation. He also made several clay hands! To this day, I have these clay hands and the movie theatre in my office on display.  

Quote of the day: You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~ Khalil Gibran

Peter's parents visited us from Thursday to today. By day 2, Peter's dad wasn't feeling well. He was dealing with nausea, diarrhea, and fever. Literally last night, I truly felt he should go to the ER to get examined because I wasn't sure it was safe for him to travel today. What I quickly learned is that I had to take a step back, because my style of managing healthcare doesn't gel with Peter's parents. So instead, I let Peter oversee what was going on, and if I was needed, I would help. This goes against my nature, because when things go wrong and people need help, I want to step in and assist. But my assistance and style are not always welcomed. Even if Peter's dad was going to be fine, you truly do not know how a virus will impact the health of an 89 year old. Especially one who has heart and other health issues. To me, it is always better to be safe than sorry. Any case, they did make it home safely, thankfully. 

It was a long four days and when illness is involved, and that means extra cleaning. I did five loads of laundry, scrubbed many surfaces with Clorox and used Lysol everywhere. It isn't just our own health, but I have to be concerned with my parents, who when sick, take forever to recover.  

Here is the highlight of my day! Between chores, I took my mom out to lunch. My dad was at his memory care center, and I truly needed a break from cooking, cleaning, and managing everyone's needs. I love going to the Neiman Marcus Café. It is about the only thing I like about that department store. We have gotten to know a lovely server named Tiffany. She looks out for us and takes great care of my mom. Today, in honor of National Cookie Day (which they are celebrating all month), she gave us some treats!

Tiffany gave us two big cookies. Wait until my dad sees these..... he will LOVE IT! It is unexpected gifts of kindness, that bring a smile to my day. I truly believe that the servers working with us understand what I am balancing and I can't tell you what a difference these women make to my life. In many ways, our servers maybe the only human beings outside of the house that I interact with, and as a result have become part of our weekly social and care network. In any case, the quickest way to my heart is with sugar! So these cookies definitely made an impression on me. 

Sunday, August 20, 2023

Sunday, August 20, 2023

Tonight's picture was taken in August of 2008. It was Mattie's first month on chemotherapy and as you can see his hair had almost completely fell out. That day, his art therapists gave him some wooden cut outs, that when glued together would form a tissue box holder. Mattie decorated all the sides and then assembled it. To this day, this tissue box holder sits on my nightstand with tissues in it. I will never forget that moment in time and how we were so overwhelmed with Mattie's diagnosis and fearful of how he would respond to treatment. We learned so much from Mattie about love, friendship, and life. 

Quote of the day: The life I touch for good or ill will touch another life, and that in turn another, until who knows where the trembling stops or in what far place my touch will be felt. ~ Frederick Buechner

My parents have not been sleeping well. Mostly because my dad just can't stop scratching his limbs. He constantly feels itchy, regardless of what topical cream I put on him. My mom told she was up all night telling my dad NOT TO scratch! 

This is a photo of my dad's legs. He looks like he was attacked by a kitten. The sad part is he has NO recollection of his scratching and whether I put cream on him or wrap up his legs, arms, and hands, NOTHING works. It is like he has an internal itch! At first, I thought he was getting bug bites outside, but now I realize there are NO bites.

So my next conclusion was this is either psychiatric or medication related. Therefore, I reflected and thought.... maybe it was his new diabetic med he started a few weeks ago. I looked up glipizide and sure enough it says...

skin rash, itching, hives, swelling of the face, lips, tongue, or throat. Low blood sugar (hypoglycemia)—tremors or shaking, anxiety, sweating, cold or clammy skin, confusion, dizziness, rapid heartbeat

I contacted my dad's doctor this morning and he immediately responded to STOP the medication. I am truly hoping this helps to relieve the issue because I just can't take it! 

Later this afternoon, I took my parents out to lunch. We were all supposed to go out together, but Peter's dad has been feeling nauseous since Friday night. None of us are sick, so the issue lies with him. Any case, it wasn't the four days I had hoped for with this visit.