Busy Week and a Little Arden Update

This week is fairly busy, so I thought that I’d give a little Arden update while I have the chance! 

Arden has been teething. Honestly, I can’t remember a time when he wasn’t trying to push out a tooth or two. It seems like this teething business has been an ongoing, never-ending process. We go through a ton of bibs and drool clothes every day in an effort to keep the drool away from his trach and trach dressing, and the amount of suctioning we do seems overwhelming at times. 

Swallowing can be tricky with a cuffed trach in place, and our little man regularly needs help managing his oral secretions. It’s upsetting to see him gag and retch when they get the best of him, and we’re often frantically suctioning multiple times when those moments happen. Lucky for Arden, and for us, he is so resilient. 

After each of these big suction incidents occurs, he recognizes that it’s over, and he goes on with the day as if nothing has happened. He recognizes that it’s over, and goes back to smiling and playing. Business as usual. 

Our little boy also seems to be growing like a weed lately. He seems like a lanky little boy rather than a baby. I must admit that packing away the clothes that no longer fit him brings a tear to my eye. For so long, Arden was so tiny. For some time, he was stuck in the baby stage, and although that period was at a time when he wasn’t doing as well, we grew comfortable there. He was my tiny little man, not quite ready to take on the world. Since we’ve been home, Arden has really been thriving. He’s grown longer, he’s gotten chubbier, and his personality has really developed. 

In the past couple months, Arden has learned to clap, and regularly shows his joy by smiling and clapping. We’re still working on waving, and he seems to think it’s funny if we encourage him to wave and he claps instead. His mobility might be limited, but Arden is not afraid to show us where he wants to go and what he wants to do. When lifted by us or sitting up, he reaches and points to things that he wants. It’s been empowering for him to be able to direct us to what he wants to see and play with. Now we just need to help him learn to deal with the disappointment when what he wants isn’t allowed to be played with! (haha). 

Arden gets excited to see people that he knows. He regularly wakes up when his night time caregivers arrive and thinks it’s a great time to smile, clap, flirt, demand attention, and watch what they’re doing around his room. Anyone who enters our home needs to wear a mask, and for his safety, we limit visits to only those that are necessary. But his world has expanded a bit, and with the weather being nicer, he’s been able to see more people in an outdoor setting. Arden is fairly social, but he does occasionally play strange. This most often happens when I leave the room and he’s with someone else. If he knows that I’m still in the room, he plays happily. 

As far as Arden’s health goes, we’ve enjoyed a long and quiet winter and spring. We haven’t had to visit the city too many times, and have been able to do most appointments in Grande Prairie or virtually in our own home. Our first 5 months home have been incredible. The time has flown by, and it’s incredible to me to think that Arden still hasn’t been home for as long as he was in the hospital. 

This week will be busier. On Thursday we will travel down to Edmonton, where we’ll stay for 4 days, and Arden will have a bunch of appointments. I’m excited for some and nervous for others. For so long, we’ve lived in our happy little bubble, and I’m guarded against anything that could change that. 

We have 4 appointments while we’re in the city, which will really feel like a lot more. We have trach clinic at the Stollery, where we will see respirology, respiratory therapy, and our home nutrition team which includes a nurse, speech and language, and our registered dietician. After that we’ll visit our pediatrician. Our pediatrician most often sees his complex patients weekly. Luckily for us, he has extended that window to one month and beyond because of our location. This time we’ll have to stay over the weekend, because one of the appointments could only be on the Monday. When we go to the city, we try to cluster all of Arden’s appointments together so that we will have less trips. 

While we’re there we will have a big appointment with the orthopedic surgeon that we work with for Arden’s hips, knees, ankles and feet. They will work in tandem with physiotherapy and occupational therapy at the clubfoot clinic. There is a good chance that they’ll end up doing Arden’s first set of serial casts during this trip. I suppose that’s the part that’s making me most nervous. 

Last time Arden had casting done, he was in the PICU and it was too much too soon. He spent 2 weeks in agony before we realized that it wasn’t working at that time, and that it was just far too much for him to bear in addition to surgery recovery, med weans, and ventilator changes. I hope that this time will be much different, but I’m still worried. 

Finally, Arden will get x-rays done on his spine so that his other orthopedic surgeon can assess the progression of his scoliosis. He has had these done in Grande Prairie as well, but it’ll be great to have them done at the Stollery where they are more used to dealing with the required positioning for children with scoliosis. 

We have a busy few days ahead of us, but I’m excited to see the changes that will take place! Take care, and we’ll have another update for you soon!

XO, Rayel