Saturday, September 25, 2021

Saturday, September 25, 2021

Tonight's picture was taken in September of 2008. By that point, Mattie was in treatment for about a month. All the PICU rooms had little windows that faced the hallway. Even early on Mattie was into catching the attention of nurses, making them laugh, and playing antics. Peter blew up several gloves for Mattie to play with, as Peter was trying to lighten the mood in our room. Early on we did not realize all the items we would need to bring to the hospital. So we had little for Mattie to play with and keep him busy. We learned quickly however, and subsequent admissions or discharges, people could hear us coming, as we literally had BINS, and BINS filled with all sorts of things we needed from laundry detergent, toiletries, food items, clothes, things to decorate the room, and of course games and toys. The bins were on wheels, and I am sure we were a sight to others. But we were prepared for just about anything that was needed!

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

• Number of people diagnosed with the virus: 42,897,295
• Number of people who died from the virus: 687,696

It was another full day at the Farm. Honestly everything seems to take ten times longer here. Peter commented to me today that there still seems like SO SO much more to do! Indeed that is true, but I tried to be positive and reflected on just how much we have done already.

Because of all the work we did to paint the house, I am on a kick that I don't want to put nails on the walls for smaller pictures and frames. In DC we used to use velcro 3M products to attach things to the walls. We tried doing that here, and literally frames fell right off the wall, and broke in thousands of pieces. So I bought this heavy duty two sided tape. We used it for Mattie's artwork today. Honestly this stuff is so industrial, I think the wall will fall first, before the photos. Which has its pluses and minuses, so now I am thinking about going back to using nails. Any case, these photos are of paintings Mattie created during his cancer treatment. Several of Mattie's painting were ceiling tiles in the clinic. When they renovated the clinic (after Mattie died), they gave me the huge ceiling tiles to take home. But I was worried about the safety of the materials comprising the tiles, and therefore decided to take photos of the tiles, and frame the photos instead. 

The previous owner had lots of curtains. One pair I absolutely hated and donated them, but two sets were neutral enough. So I had them dry cleaned and pressed and I ordered new curtain rods because the rod the previous owner had in the dining room was sparkly with rhinestones! Not my style. Instead, I wanted something in the bronze family and shopped around until I found what I was looking for. Peter and I have never hung curtain rods before. So the dining room took us a bit of time to figure out. But thankfully Peter is very mechanical and skilled around the house. 

After tackling the dining room, we moved onto the living room. A tough space because there isn't much wall space to hang the hardware for the rods. Which is why I had to purchase rods and finials that would fit this space. Tomorrow we are going to begin to assess the basement level. Right now we have things stacked down there and I have to begin to unpack and find space for Mattie's treasures and keepsakes. Which most likely will mean that Peter and I need to build out the storage closet in the basement. 

Friday, September 24, 2021

Friday, September 24, 2021

Tonight's picture was taken in September of 2008. Mattie was a month into treatment, before he had any limb surgeries. That day, our neighbor brought over this cowboy teddy bear for Mattie. The artist who created it, even signed the boot and dedicated the bear to Mattie. Mattie LOVED having his own a life sized bear that was practically as tall as he was!

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

• Number of people diagnosed with the virus: 42,784,814
• Number of people who died from the virus: 686,372

It was another busy day on the Farm. In the midst of the never ending house work, we both have work to do, that has to get done! In addition to my everyday Foundation work, I am trying to develop a new psychosocial initiative for the Foundation and was asked to get involved in a joint project regarding sibling support for children with cancer. So I was on conference calls today and dedicated the day to updating the Foundation's website and writing September's newsletter that goes out next week. 

I had a visit by our painting company today, as our laundry room is finally going to get painted! We have been dealing with holes in the wall, plaster, dust, and whatever you can imagine coming out of that room. Hopefully within the near future, major work will be done. 

As September comes to a close, I wanted to share a video that the childhood cancer advocacy community created. So many work hard to ensure our landmarks, cities, and countries all over the world turn GOLD in September for childhood cancer awareness month. This two minute video is a pictorial display that illustrates the support for the Gold movement. 

Thursday, September 23, 2021

Thursday, September 23, 2021

Tonight's picture was taken in July of 2003. Mattie was 15 months old, and beginning to take a few steps. Mattie was cautious about learning to walk. Apparently most kids start walking between 8 and 18 months. By 16 months Mattie was walking. This photo was taken in the Outer Banks of North Carolina. It was Mattie's first trip there and in the afternoon when it was very hot, we would have some book time. One of Mattie's favorite books was Goodnight Moon. I think Peter and I read it so often, we can still recite the story!

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

• Number of people diagnosed with the virus: 42,622,969
• Number of people who died from the virus: 682,468

I can't take these 6am mornings! It just isn't my hour. Peter and I are so chronically exhausted that when we stop moving, we fall asleep. We locked Sunny in my office last night, as he is not supposed to walk around and do steps without us using a sling. It seemed to work out fine, as we left him sleeping on my rug. But at 6am, he somehow got his body off the floor and onto his dog bed which we left in the office for him. Sunny is eating, but truly doesn't even want to toe touch his leg to the ground. Therefore, he is hopping around on three legs when we use the sling. My hope is he will make progress each day, but it is clear to me that he isn't happy. 

We had the electrical team here at 8am. They were working on tracing electrical wires to the breaker boxes. This took hours and we even found electrical switches in the house that control NOTHING. Believe me we looked. While I was sitting down giving Sunny pain meds, all of a sudden a large spark jumped out at us from one of the electrical sockets. It literally looked like a sparkler on July 4th. Sunny let out with a noise and I started screaming. Needless to say, the electrical team replaced sockets and things today so this doesn't happen again. One of the electrician calls our house "the fun house." You know like at a carnival or circus! It isn't a compliment, but I totally relate to his feelings. Nothing here is standard, and therefore, Peter and I assume this moving forward about everything. It helps to level set our expectations.

Apparently, to add to the mix, shudders on the house came flying off during the storm yesterday. Peter found one on the grass and of course we can add fixing shutters to the long list. It is our joke.... what will go wrong on the farm today?!

Wednesday, September 22, 2021

Wednesday, September 22, 2021

Tonight's picture was taken in October of 2006. As the weather begins to change now, and I see pumpkins on display in stores, it reminds me of Fall festival season with Mattie. Every weekend we took Mattie to a different fair, and with each one we went to, our collection of pumpkins increased at home. 

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

• Number of people diagnosed with the virus: 42,487,004
• Number of people who died from the virus: 680,166

As of today, we have lived in the house for a month, but we have been fixing things since June. I am waiting for the day when a contractor of some sort isn't in the house! Today wasn't such a day. The team working on sealing holes in the walls and dry walling came back today. All the repairs have been made and now I meet with painting company on Friday to discuss painting the laundry room and garage. I wasn't planning on painting the garage, but given the extensive damage that was made there to correct electrical issues, we have no choice but to address it now. It will be lovely to have an operating laundry room. Since we moved in, one repair after the other has been happening there!

Peter went to pick up Sunny today, while I was at the house with contractors. Sunny came home stupefied from pain meds, but I know that is better than the alternative. They have Sunny on antibiotics, pain meds, and an anti-inflammatory. We are supposed to keep him calm, on a leash, and with limited mobility for two weeks. At that point, the doctor will examine his healing process and hopefully can start physical therapy. 

Sunny has two shaved legs. One from the surgery, and a front leg where they hooked up an IV. I am saddened to see Sunny's shaved legs again. As we have been through this over and over again with him, starting with when we rescued him.... he was heartworm positive, and needed IV treatments, which meant all the fur on his legs were shaved. 

They have given us this towel like sling to help Sunny walk. Though he is out of it, I figured he needed to go outside for a comfort stop. It took some time, but he was successful. There is so much to balance here, and now we are adding Sunny's rehab to the mix. All I can say is... it hasn't been a good week. 

Tuesday, September 21, 2021

Tuesday, September 21, 2021 -- Mattie died 625 weeks ago today. 

Tonight's picture was taken in October 2004. Mattie was two years old. That day his preschool did a field trip to Butler's Orchard in Maryland. It was our first time on that incredible farm! It started a tradition for our family, as we then went back every fall and spring, for Bunnyland! In any case, this was Mattie's first preschool (the one where he did not last more than two months at before being dismissed) and therefore, I found a way to be a chaperone for the trip. While on the journey with Mattie and the kids, I snapped this photo of Mattie in the pumpkin field. 

Years later (2007) I took a similar photo, on a sunny day, and this pumpkin photo is my go to for childhood cancer events. 

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

• Number of people diagnosed with the virus: 42,353,464
• Number of people who died from the virus: 677,432

We were up by 6am. More contractors at the house today, as they are still working on sealing up the walls from electrical work. Peter took Sunny in for surgery and was at the center by 7:30am. We heard from the surgeon at 1:30pm. Sunny managed through surgery well, had no reaction to anesthesia, and was in recovery. She let us know that the damage was much more significant than his first surgery, as he tore his cruciate ligament and also damaged his meniscus (cartilage in the knee). 

We knew the damage had to be worse, given Sunny's behavior and mood. He looked depressed, refused to walk at all, and seemed extremely exhausted. Thankfully this doctor made room for him today. We pick Sunny up tomorrow from the ER, and then he has restricted movement for two weeks. After which he starts physical therapy. Needless to say, recovery time is six months. 

Info about a torn cruciate ligament: 

The word cruciate means 'to cross over' or 'form a cross'. The cruciate ligaments are two bands of fibrous tissue located within each stifle (knee) joint. They join the femur and tibia (the bones above and below the knee joint) together so that the knee works as a stable, hinged joint.

One ligament runs from the inside to the outside of the knee joint and the other from the outside to the inside, crossing over each other in the middle.  In dogs, the most common knee injury is a rupture or tear of the cranial cruciate ligament.

Humans have a similar anatomical structure to the dog knee, but the ligaments are called the anterior and posterior cruciate ligaments. Anterior cruciate ligament rupture is a common knee injury of athletes (ACL surgery).

Based on its anatomy, the knee joint is a hinge joint. It is relatively unstable because there are no interlocking bones in the joint. Instead it is held together by several ligaments, including the cruciate ligaments, which allow it to move back and forth like a hinge, but restrict its side-to-side motion.

The two most common causes of cranial cruciate rupture are trauma and degeneration of the ligaments within the joint. Acute or traumatic cruciate rupture is caused by a twisting injury to the knee joint. This occurs most often when the dog (or athlete) is running and suddenly changes direction. (Which is what happened when Sunny was chasing two foxes in the backyard.)This places the majority of the body weight on the knee joint, and excessive rotational and shearing forces are placed on the cruciate ligaments. This injury usually affects the anterior or cranial (front) ligament. A cruciate ligament rupture is usually extremely painful and the knee joint becomes unstable, resulting in lameness.

Given that Sunny wasn't home, it made it the perfect day to meet my licensure requirement..... 2 hours of COVID vaccine training, which has to be completed by September 30th. The District of Columbia has made vaccines and covid training mandatory for all health licensed professionals and we have to be in compliance by September 30th. While going through the recommended training options, I decided to complete a four part module. The email communication from the licensure board indicated that this four part module would give us 1.7 hours of continuing education. Yet when I completed all four parts today, my certificates said I did 5 hours of training (which is true). Naturally that discrepancy bothered me, even though I am officially no longer board chair. So, I wrote to the licensure board staff and gave them a head's up. If I was frustrated and confused by the misinformation, I know so will other licensees. 

Meanwhile, look who is staying close today! As if she understood an important member of the family was missing. 

Monday, September 20, 2021

Monday, September 20, 2021

Tonight's picture was taken in January of 2003. Mattie was 9 months old and loving the freedom in his "tot wheels." Our commons space outside our townhouse in DC was the ideal location for Mattie to learn so many firsts! As it was protected from being near streets, cars, and the outside public. Our Facebook friend, Tim, once zoomed in closely to Mattie's eyes in this photo and saw what I was describing. Which was Peter may have been snapping the photo, but it was ME who Mattie was looking at. When Tim blew up the photo, he could literally see the reflection of me in Mattie's eyes. 

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

• Number of people diagnosed with the virus: 42,255,382
• Number of people who died from the virus: 675,885

There is NO peace on the Farm. Now I have no expectation that I will get a break, or that I will be able to catch up on sleep. Before heading to the dentist, I made some phone calls. The first was to the oven repair person! Something tells me this oven is NOT fixable. In any case, while talking with him, I could hear Sunny barking outside, then running like a sheep dog after something! Mind you I was on the phone trying to diagnose the oven problem with the repair person, so I couldn't start yelling at Sunny! Turns out two fox had come into our backyard and Sunny went nuts. So nuts that when he was finished chasing the fox, he could not walk. Peter and I knew this wasn't a good sign, as Sunny injured his right back leg in April of 2020, and needed TPLO surgery (like ACL surgery in humans). The surgeon told us that it is very common for the other leg to eventually give out and also need surgery. We were dreading such a day, as the surgery is very expensive, it requires massive rehab, PT, and rest. I will return to this in a minute!

I couldn't address Sunny immediately as I had to head into DC for my dentist appointment. Certainly I could change doctors to professionals closer to Oakton, but for now I decided not to do this. These appointments give me the opportunity to return "home." When I sat down for my dental cleaning, the hygienist was working on putting equipment together and the next thing I knew, she was trying to put a canula in my nose. Needless to say, I said "OH NO." I asked her what on earth she was doing. She said there was a note in my chart that said all my cleanings had to be done under sedation. I firmly said I had NO IDEA what she was talking about. I have been going to this practice for 15 years and not once did I need sedation. I have been assigned a new hygienist as mine moved back to Michigan to spend more time with her family. Something tells me this new hygienist will never make this mistake with me again.

After my appointment, I hopped in the car and picked up salads at my favorite sandwich shop in DC, Jetties. It is very close to Mattie's hospital and to me they have the freshest and most creative salads and sandwiches. Whenever I head into DC now, I try to pick up food to take back to Virginia. Meanwhile, while driving to get the salads, I called the surgical center and pet emergency room we take Sunny to in Vienna, VA. I feel like we are frequent flyers there. They said they could see Sunny if I got him there within the hour. So I got back to the house, Peter carried Sunny to the car, and I was off. Given COVID, it is even harder to get ER pet centers to see your pet, because the demand is so high. 

Turns out Sunny needs surgery. He is described right now as "lame," since he can only walk on three legs. He appears to be in pain and truly unhappy. Now here's the kicker. I called their orthopedic division of this center and their first surgical consult date was October 22. That is a MONTH from now. How they expect a dog to manage pain for a month is beyond me. So Peter literally called the surgeon who did Sunny's procedure in April of 2020 (as she gave us her cell phone number back then). The doctor happened to answer the phone and Peter gave her a diatribe. It is a miracle..... Sunny went from having a surgical consult on October 22, to being scheduled for surgery tomorrow with our original surgeon. Who knows what kinds of strings she pulled. All I know is we are thrilled that Sunny's issue is going to be addressed quickly and by a surgeon we have already experienced. Think good thoughts about Sunny tomorrow. He goes in at 7:45am.

When I got home from the ER, I found Peter talking to a neighbor. I love these neighbors, everyone wants to see inside your house. I also have observed that the men seem to connect with each other better than the women. I am definitely NOT used to such a model, as typically with couples it is the women who make the connections and drive the schedule. In any case, the neighbor wanted to know how I am "enjoying" the house and the neighborhood. His wife even asked if the house is bringing me "joy." These people clearly don't know me, as I despise the word JOY. But I let her know there is NO joy or peace at this house. It is one catastrophe after the other, and Sunny chasing a fox and getting injured was the cherry on top of the cake. 

Sunday, September 19, 2021

Sunday, September 19, 2021

Tonight's picture was taken in May  of 2006. Mattie was four years old and what I love about this photo was the photo within the photo. As you can see, Mattie was holding up a picture of himself as a toddler, standing right next to the same coffee table. As a toddler, the table was at waist height, but by age 4, Mattie was much bigger. His beaming smile shows how pleased and happy he was by his noticeable growth!

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

• Number of people diagnosed with the virus: 42,087,282
• Number of people who died from the virus: 673,763

It felt like a lost day! Though I wanted to sleep later today, I was up by 7:30am and working. Yesterday was a whirlwind and actually emotionally draining attending a celebration of life ceremony. I have many reflections from the event that I will share later this week. 

Today we devoted the day to trying to hang photos and some art work. This photo display of Mattie was in our DC townhouse. Peter gave it to me one year as a Mother's Day gift. It is something that I cherish and it took us hours placing them on the wall. It it actually much harder to create this display than it may look. 

A close up! There are photos on the wall that cover all ages of Mattie!

We began hanging Mattie art work all over the house. These four are Mattie's flower creations. They were in our kitchen in DC, and now in our kitchen in Oakton. Mattie created them in the outpatient clinic. In so many ways the wonderful things Mattie created with his child life specialist and art therapists have become his legacy. 

Mattie did this composition with a volunteer artist who visited the hospital. I loved it so much that I gave it a red backdrop and black frame. Of course on top of the frame is a Mattie lizard, spider, and some toy cars. 

We finally hung Mr. Sun today! This is a wall we see everyday in the house, and to us it was the perfect space for the creation that is the inspiration for the Foundation logo.

This evening we were invited to our next door neighbor's home for dinner. They moved into the house a few weeks before us. They have two teenage children, who are lovely. However, here is the difference between parents, who are actively parenting, and parents like ourselves who lost a child to cancer. Our house is filled with memories and creations. In fact, I am sure if people visited us, who did not know our story, I am sure they would think we are raising a 7 year old. For us time has stopped or stood still, whereas for active parents, they don't need the things and reminders, because their child is ever present.