February ’22 Trip to Edmonton & What’s Next
Last week we had our first medical trip of 2022 to the city. Luckily for us, December and January were left open and we didn’t have to make any trips down. We were able to enjoy a very long holiday season without interruption. It was wonderful to just enjoy all the miracles that the season holds without the added stress of coordinating medical appointments and travel. Arden truly loved Christmas this year, and it has been so great to see his perspective change as he grows.
For this trip, we had three appointments scheduled for Arden. We drove down to Edmonton on Wednesday February 2nd and just made it to our appointment at the Glenrose Rehabilitation Hospital in the nick of time. Arden did not nap at all during our 5.5 hour drive, and he was incredibly tired when we arrived. That said, he did not enjoy being poked, prodded and made to do activities by the physio and occupational therapist. In fact, when the neurologist and physiatrist came in to speak with us, Arden promptly utilized that time to take a nap on the mat that was provided for the floor. During our visit, we decided that because we have services for PT and OT at home, and that neurology sees no concerns in Arden, we will likely just continue being followed by physiatry through the Glenrose. There is one physiatrist who will occasionally make trips up to where we live, and we’re hoping that Arden will be able to see him during those times (approximately every 6 months).
During our visit at the Glenrose, I began to worry because I hadn’t received a phone call to tell us the time of Arden’s ptosis correction surgery the next day. After expressing my concern, the neurologist took the time to go online and to call the Stollery and the Royal Alex to see what was going on. We found out that Arden was not on the oculoplastic surgeon’s list for either hospital. Of course because it was now after 4PM, the surgeon’s office was closed and I had to leave a message. The next morning I received a phone call from the surgeon’s assistant saying that Arden’s surgery had been canceled weeks ago, and they were sorry no one had contacted us. To say we were frustrated is an understatement. We know that the current state of our health system is under pressure, and cancellations are sometimes inevitable. However, it is disappointing that the professionals working in these fields did not see the need to call to warn us of the cancellation before we drove nearly 6 hours and booked a hotel stay and other appointments in order to accommodate the scheduling of the procedure.
The next day then became an empty day. It was so cold outside that we didn’t want to take Arden out much. When it’s that cold (-20C with windchill), as soon as we go outside Arden’s secretions thicken and it becomes hard for him to cough them up. All of his equipment becomes cold, including his suction catheter which freezes almost instantly. It’s just not a fun time for him or us, so we kept him in the hotel and played all kinds of games to keep him occupied all day. Arden has recently been enjoying “catch” where we throw a ball back and forth. Of course he usually “catches” it on the floor in front of him, but this game will keep him entertained forever! We used the day to enjoy our uninterrupted family time, and it was actually nice to just slow down and enjoy each other’s company without the worries of work, house work, visitors, or anything else. We ordered in some great food, and later while Arden was napping, our night time caregiver and I went to the mall so that we could get a walk in without freezing outside. Despite how disappointed we were about Arden’s procedure being canceled, we actually really enjoyed our day.
On February 4th we got up early to get our hotel room packed up and check out before heading to Arden’s pediatrician appointment. The appointment was just a check up, which usually occurs every 1-2 months. Arden’s doctor was pleased to hear how he has been doing, especially after experiencing and recovering from his first touch of the cold in early January. During this appointment, Arden was also tired and grouchy with the nurses and doctor. He did not want to be touched, and he let us all know that by using his voice as loudly as possible. Arden got weighed during this appointment, and we were informed that he is now in the 50th percentile for weight on the growth chart. For a kid who came out of the hospital in December 2020 on the 3rd percentile, this was a HUGE milestone!
Since Arden was discharged from the hospital, he has been on an iron supplement. During his hospital stay, Arden had low hemoglobin and they wanted to ensure that didn’t happen again. However, the iron now aids in causing him to become constipated, and we’d love to take that off his small list of medications. In order to do that however, he needs bloodwork. Because Arden is medically complex, and has multiple muscle and joint contractures, he has very difficult veins to draw blood from. I did not want to take him to get blood drawn where they do not have experience drawing blood from complex patients like Arden, so I asked Arden’s pediatrician to do it during this appointment. Luckily, Arden’s doctor was able to draw blood on the first poke, but his veins are so difficult that he ended up having to take it from his head. Even then, it was difficult, and Arden had to be restrained for a long time while the blood was being drawn. Naturally our poor boy hated that, and it was a very stressful situation for him. Even after all that, Arden still signed “thank you” to his doctor as he left the room, and was a happy camper as soon as we were on our way out the door!
The drive home after Arden’s pediatrician appointment was long as usual, but Arden slept for a good portion of it and that made it much easier for him. We were happy to get home late Friday afternoon, knowing that we still had the weekend to rest, unpack, and enjoy.
Our next appointment is scheduled for March 4th. In November, Arden received an MRI to look at the vessels in his knees. During this next appointment, we’ll see the orthopedic surgeon that works with Arden’s legs in order to discuss the MRI results and talk about the progress made in his feet/ankles. Arden currently still wears his boots & bar braces during night time sleep, and we will see what the next steps will look like. In the fall of last year, the ortho mentioned that Arden may require a fairly extensive surgery to help correct the position of his knees and help them become more functional. This visit should provide us more insight into what that may look like.
The MRI that happened in November also gave us insight into what Arden’s brain and spinal cord look like. At birth, Arden had a couple things that needed to be followed up on MRI. First, he had something in his brain called a mega cisterna magna. Essentially, the fluid space behind the cerebellum in his brain was measuring larger than normal. Additionally, he had something called a low-lying conus, meaning that his spinal cord goes down farther than normal. In December, the neurosurgeon called us with MRI results, and we were quite pleased. Arden no longer has a mega cisterna magna, the fluid space is now measuring normal size, and they have no concerns about his brain. The spinal cord still goes down lower than usual (a typically spinal cord will sit between L1-L2 vertebrae, and Arden’s goes down between L3-L4). However, they do not see any cause for concern. There is no evidence that Arden’s spinal cord is tethered in place, and the position has not worsened since he has grown. At this point, they see no need to do any further cord exploration, and it could be that Arden just has a bit of a weird spinal cord. The neurosurgeon will follow up with us in a year to do further imaging and see where things are at as Arden grows.
In the meantime, Arden has been making steady progress at home. He is learning new ASL signs quite quickly, and uses them frequently to communicate his needs. His latest favourite sign is “music” and he uses it regularly to ask me to turn our record player on for him. Arden has also been on the move more than ever, and has been mastering the “butt scoot” as a mode of transportation. He cannot yet move himself from laying to sitting, and we have been working on teaching/practicing that skill with him. However, if he is placed in a seated position, he has excellent balance and will immediately scoot to move wherever he wants to go. This has been a lot of fun when he is doing his off-vent times, as he can follow me around the kitchen or other places when I’m doing house tasks. It has given him a lot more independence and a new way to explore.
As Arden sits and moves more in a seated position, his scoliosis is becoming much more noticeable. When stretched or laying down, we are able to move Arden’s spine into a neutral position, but he cannot maintain that on his own while he is sitting unless we correct his position. Next month we will get another scoliosis series of xrays done that will be examined by Arden’s other orthopedic surgeon, and we will see if he feels there are any interventions we need to do for Arden’s scoliosis at this time.
At the beginning of January, I was sick with a cold for about a week and a half, and although I masked around Arden, I believe he also got a touch of my cold before I even became symptomatic. During that time he needed to have oxygen hooked up to his vent during the day, which is something he hasn’t required in a really long time. He was also breathing a lot harder, so we completely held back on doing any off-vent times until he felt better. It was disheartening to see this slight regression happen, and I was so worried. We had never experienced Arden having a cold, and were concerned that if he continued to need more support, a hospital trip might occur. However, he proved me wrong and came through it stronger than ever. We are now back to doing 30 minute off-vent sprints 4 times per day, and if he continues to do well, we will increase that time soon.
I feel as if so much has happened in the past couple months, and there are a lot more changes coming! It was nice to take a January break, but I’m happy to be back sharing our little life with all of you! As always, we are so appreciative of all the incredible people in our life. If I missed something, or you have questions, feel free to ask! Follow us on Instagram @itsalockhartlife and Facebook @itsalockhartlife20 for more everyday updates!
XO, Rayel