The last 3 months of 2020
Oct 8th, 2020
October was a bit of a lazy month, but not in a bad way. After Olivia’s discharge on Oct 7th, 2020, we decided to take it easy while she recovered from her kidney stones episode. Thankfully her health continued to improve, but the changes we made didn’t fix everything. She ended up facing some digestive challenges after we switched her formula, but that was to be expected. We had already spent most of the month hiding out at home, so when Halloween arrived, we didn’t mind skipping it. After her doctor’s appointment on the 9th, we left home only a few times to get groceries and visit Santa. It was nice to have a short break from the usual chaos of life (at least for a month).
Nov 26th, 2020
By November things were starting to get back to normal. We had settled into our usual routine of bloodwork and therapy appointments. Our struggles with acquiring nursing help had become progressively worse since we returned home in October. Olivia’s irregular bowel movements hadn’t improved much over the previous month, so we decided to change her feeding schedule to see if it would help. On the 19th, we increased her feed volume from 75ml to 100ml, and we decreased the frequency of her feeds from 8 to 6 per day. Thanks to the extra time between her meals, her digestive system had slowed down, and as a result, she was able to absorb more of her formula (but it was still far from normal). It had appeared to us that she had tolerated the changes to her feed. Earlier that month, we attempted to help Olivia ride her tricycle, but it didn’t go well. Her bike wasn’t providing enough support to keep her upright, and as a result, she wasn’t able to sit on it for long. Her brief tricycle ride brought her a lot of joy, so we decided to ask her physiotherapist to help us make it more comfortable for her. After looking at the tricycle, her physio suggested that we try a different bike with built-in supports. So, on the 26th, we were able to try out a new tricycle that her physio had loaned to us. Although her ride was short-lived, it still went better than our previous attempt with the other tricycle. She seemed more supported, comfortable, and happy. We noticed that she had a difficult time holding onto the handlebars, so someone offered to make her a pair of velcro gloves to hold her hands in place. Once her gloves arrive and the weather improves, we will be able to take her outside for a ride. With all things considered, November ended up being a good month for us. Olivia stayed healthy, and she continued to make small improvements.
Dec 3rd, 2020
December was a busy and challenging month for us. Our nursing situation had not improved, but thankfully Chris was able to help out during his Christmas vacation. On the 1st, Olivia participated in a swallow study at VGH to determine if it was safe to feed her tastes of food. Olivia was excited about the appointment until they strapped her into her chair. Things took a quick dive when they attempted to feed her spoonfuls of yogurt mixed with barium. She began screaming, and yogurt ended up all over her face and clothes. After calming her down with music, we managed to convince her to eat enough yogurt off of her soother to get a good x-ray image of her swallowing. They wanted to know how much she could eat before she asperated, so they fed her once more with a spoon. The yogurt ended up going down the wrong pipe because the volume was too much for her. After reviewing the results, they concluded that she could safely have a couple of small tastes on her soother (as long as she had good posture during the feeding attempt). On the 2nd, we traded in our borrowed standing frame for Olivia’s very own new one (which she gets to keep until she outgrows it). We did manage to try it out that day, but she had no interest in staying in it long enough to have her picture taken. Her digestive system had still not returned to normal, so on the 9th, we decided to stretch her feeds even further apart. Much like what we did in November, we eliminated one of her feeds and increased the volume from 100ml to 120ml. It appeared that the extra time between her feeds helped to slow down her digestion even more (plus it came with the bonus of more sleep for us at night). Olivia’s birthday was quiet but great (I talk about it in my previous post about the holidays). Earlier that year I spoke with her physiotherapist about ways that we could help Olivia get up on her feet more. I had seen a video on Facebook about a father who made a device to help his disabled child walk with him. It inspired me to think of how I could do something similar for Olivia, but I found myself challenged by the position of her Broviac line and her G-Tube button. After doing a bit of research, I had decided to put that idea on pause until her neck and trunk strength was better. When her physio contacted me on the 16th about a device called the Upsee that had just become available to borrow, I was very excited. The Upsee was actually one of the devices I had been looking at as an option for Olivia. Her physio stopped by on the 17th to loan us the Upsee for 3 months. It was a little bit of a struggle to get her into the device, but once she was ready and attached to me, she was full of joy. When we took our first couple of steps, it felt like I was walking with the tin man before he oiled up his joints. After a few more steps, she started to relax, and her movements became more organic. She had a sense of wonder in her eyes as she looked at the world from a different perspective. After a few minutes of walking, it was obvious that she was becoming tired, but she was enjoying herself too much to stop. We ended up walking around the house together for almost 10 minutes before calling it quits. In some ways, our Christmas reminded me of the one we spent in the hospital. We were isolated but not alone (I talk about it in my previous post about the holidays). Since our return home from the hospital after Olivia’s Kidney stones episode, she hadn’t fully adjusted to the changes we made to her feed. It appeared that she was having more reflux and secretions, so we decided to try out a different food to see if that would help. After doing some research on the different options available, I found one that I figured would be gentle on her stomach. So, on the 31st, we switched her from Compleat Pediatric to Peptamen Jr. We ended the year feeling hopeful that we had finally figured out how to help her tummy work better. In the days that followed, we would find ourselves playing the waiting game (waiting to see what her digestive system would do).
