Fall ’22 Arden Update
The summer, and even the month of September, seemed to fly by in the blink of an eye. We are so lucky to have had SO many beautiful days where we got to spend time outdoors. Arden delighted in spending hours and hours outside the walls of our house, and we have continued to do so even as October has arrived.
Throughout the summer, we didn’t have too many medical appointments in Edmonton for Arden, and it was a nice reprieve. At the end of October, we’ll head down to the city for 3 appointments. He’ll see ophthalmology to check on the development of his eyes and his sight, we’ll visit his pediatrician for a check-up, and we’ll see his ENT to check his vent pressures to see if he will tolerate a speaking valve.
The latter of those three is very exciting for us! Arden already produces sound around his trach tube, because he doesn’t use the cuff on his trach during the daytime. Although his speech is incredibly delayed due to his medical needs up to this point, he has been trying harder and harder to vocalize. Arden mostly uses ASL signs to communicate, but he also mixes in spoken language from time to time. He has learned to say a few words that he uses regularly, including: up, home, help, and hi. Some words he uses we can understand because we spend a lot of time around him, but they are VERY modified. For example, when he says “Lexi” (our dog’s name), it sounds like “Yeh-hee.” When he says his friend Asher’s name, it sounds like “Ahh-her.”
A speaking valve might not change how Arden currently speaks. However, it’s a one way valve that will encourage him to breathe in through the trach, and out through his mouth. In that way, it may help Arden maintain a little bit of pressure in his lungs when he’s off his vent, and might help him to be off his ventilator for longer periods of time. Fingers crossed that it works out for him!
We recently found out that we have a new speech language pathologist to work with in our community on a more regular basis, and I’m hoping that she can help us work towards Arden speaking more, and also being able to manage his oral secretions. As Arden has gotten older, his drooling seems to have gotten worse, and we know that he is lacking the skills to manage it.
We had a scare last week when Arden’s pulmonologist prescribed him Atropine drops for management of his oral secretions. The drops were supposed to help clear up his drooling. As a baby, Arden was intubated, and after a few months, he received his trach because it was clear that he would need long term support with his breathing. That said, Arden has never had to swallow, or suckle, or any other oral skills that most children develop early in their life. With that being the case, he struggles with his drool, and usually requires many bib changes throughout the day to ensure that his clothes don’t get wet.
Immediately after the first two doses of the atropine drops, Arden seemed unwell. On a walk in his wagon down our road, he became very overheated and lethargic, but he wasn’t sweating at all. After checking his temperature, he was nearly feverish. His breathing became labored, and his oxygen saturation declined to the point where he needed oxygen T’d into his ventilator (something he doesn’t usually require during awake hours). Throughout the day, Arden experienced many other symptoms/side effects including: bloating, tachycardia (extremely high heart rate), high respiratory rate (breaths per minute), difficulty suctioning trach secretions, dizziness, chest pain, and more. I immediately stopped the drops, and decided not to give him any more doses. The next day I spoke to his pediatrician’s office, and they said that some kids just respond that way, and that obviously Arden should not be given the drops again. Needless to say, it was a very scary way to find out that a medication was not going to work for him! There are other measures that can be taken to manage secretions, including but not limited to: different medications, botox in the salivary glands, and surgical measures. We will discuss next steps with his doctors, and decide what is right for Arden. In the meantime, we’re hoping the SLP can help us to develop some of Arden’s muscles so that he can manage them on his own.
In regards to ophthalmology, we are interested to see what they say about Arden’s eyesight. Last year, before he received his ptosis correction surgery, the ophthalmologist felt that Arden was far-sighted. This would mean that he could see things that are far away, but has difficulty seeing things up close. It was suggested that he might soon need glasses. However, Brodi and I wondered about the validity of the tests. Arden has always been incredibly attentive to detail, and often picks out very tiny items like strings, hairs, and screws on his toys. If he needs glasses, we are more than happy to ensure that he has them, but we are hopeful that his ptosis correction might change the results of the ophthalmologist’s tests.
After speaking with orthopedic surgery in the spring, we decided that Arden will undergo a procedure to place plates in his knees. The plates will assist in a long term procedure called “guided growth.” Over time, as Arden grows, the plates will restrict the growth on the front of his legs, while allowing the back to grow. In that manner, over time the knees will straighten. We still haven’t received a surgery date for this procedure yet, so it has definitely been a long wait. Arden has been trying harder to crawl, climb, and even put weight on his legs in a semi-standing position. We can’t wait to see what he’ll do once his knees are straighter!
We recently started Arden in some library programs in our neighboring communities, where he gets to participate in play time, songs, and activities with other children near his age. We weren’t sure how he would respond, because he hasn’t had a lot of interaction with other children that he doesn’t know. He attended his first sessions last week, and has absolutely loved them! At home, he regularly signs “I love you play” in reference to his enjoyment of his play groups, and it’s so great to see him interact with other kids. The reception we have had from other children and parents has also been wonderful. As the mother of a medically complex, unique little man, I always worry about how he will be received by people who don’t know him. So far we have experienced nothing but kindness, support, and a willingness to learn about him and include him. Parents have politely asked questions, and helped to explain Arden’s needs to their children in a way that is respectful and educational. For that, I am incredibly grateful!
Arden has had a massive change of heart in the past 6 months or so. Last winter, he was terrified of other babies and small children, and now he can’t get enough of them! Last week we had a visit from our friends in southern Alberta who have a 3 month old, and Arden relished every moment he got with baby Marshall. He helped with diaper changes, bottle feeding, and was happy to provide cuddles any chance he got.
Time seems to be moving so quickly lately, and our life is becoming more and more busy. It’s overwhelming at times, but it also feels like we’ve moved into a more “normal” phase of life, where everyday activities and milestones don’t seem quite so out of reach anymore. We’re proud of the progress our boy has made, and we’re looking forward to everything he has yet to experience.
XO, Rayel
See below for a little glimpse of our fall so far! You can also follow us on Facebook and Instagram for more regular updates!
