A Busy Halloween ’22
This Halloween we celebrated early by decorating the house and putting Arden’s Halloween blow up decor in the backyard (a gift from grandma Cindy). However, the actual day was a busy one as we headed to Edmonton on October 30th for 3 of Arden’s medical appointments the next day.
I’ll admit that this one and a half day trip was a bit of a shock to our system…for the past few months we’ve been incredibly lucky to do most of our appointments over the phone, or have been able to delay them. It was a nice break and a great way to enjoy this beautiful fall we’ve been having! I don’t think I’ve ever seen it this warm until the end of October, and I’m incredibly grateful for all the time we’ve been able to spend outdoors with Arden.
On Sunday night we stayed at Ronald McDonald House for the first time. Typically we get a suite style hotel because Arden requires around the clock monitoring and care. Our night caregiver usually comes with us and cares for Arden while we are sleeping, then sleeps during the day when we’re out at appointments. However, the cost of these almost monthly trips adds up really quickly. We decided to forego night care for one night and stay at RMHC. The welcome and care we received was so wonderful, that it certainly made up for the lack of sleep!
We were placed in an accessible room so we had plenty of room to manoeuvre Arden and all of his equipment. We had two beds, so Brodi could sleep in one, and I “slept” next to Arden for the night, taking little naps throughout the evening so I could stay awake most of the time to do his care.
I cannot say enough great things about Ronald McDonald House Charities! The services they offer to medical families is truly unparalleled, and I cannot believe that network of incredible volunteers who put in so much of their time, money, and care into providing such a wonderful outlet.
Arden’s first appointment this week was to see his pediatrician. His usual doctor was away, so we got to see one of the pediatricians that worked with him when Arden was still in hospital after his birth. After spending almost 8 months in the hospital, and about 4 months in her care, we got to know her really well, so it was nice to see her after so long! Overall, we didn’t have many concerns to discuss, and Arden’s doctor and nurse were happy with his progress. He is now in the 50th percentile for weight, and the 15th percentile for height. Arden is on the shorter side, which we knew was a very likely possibility. It has been documented that most people with Escobar Syndrome are short in stature.
We updated the team on our plans with orthopedic surgery, and planned for a followup visit once his next surgery is complete. On November 8th, Arden will be going for a bilateral anterior distal femoral guided growth procedure. What that means is they will place plates in the front of his knees. Over time, the plates will restrict the growth on the front of his legs, allowing the back to catch up. During the course of a year or more, this process will help to straighten Arden’s legs so that he won’t always be in a flexed position. It’s terrifying to send our little boy into another surgery, but we are hopeful that this next procedure will bring us one step closer to helping him walk!
Our second appointment was a visit to the ophthalmologist. Earlier this year, this doctor checked Arden’s eyes, and suggested to us that he might be far sighted, meaning that it is difficult for him to see things that are close to him. We trusted his doctor, but we were skeptical because Arden is SO attentive to detail. We figured that the drooping of his eyelids may have impacted the test, and waited to see what would happen next. In June, Arden had ptosis correction surgery to lift his eyelids, and we thought that it might also help his vision. However, this trip confirmed that Arden definitely needs glasses. He is VERY far sighted, and it’s a great thing we caught it now, because as he gets older, there is no way he would ever be able to read without glasses. It was a little disheartening to find out that our boy will need ANOTHER bit of wearable gear to help him along, but after seeing how cute he looks in a pair of glasses, it’s hard to be upset!
Our third appointment was the most exciting one of our trip. We visited the ENT at her clinic in order to test Arden’s pressures to be fitted for a speaking valve. After doing all the checks, it was determined that Arden is ready for a one-hole speaking valve. Don’t worry…I will explain what that means! Usually when Arden is off his vent, we place a heat moisture exchanger (HME) on the end of his trach. The HME acts as an artificial nose, helping to maintain humidity in his airway, and acting as a filter for his breathing. Our noses do this naturally, but when you’re breathing through a hole in your neck, artificial means are necessary! Now that Arden is off his vent for 8 hours per day (2-2.5 hours at a time), we have been encouraging him to build his strength enough to produce sound without his ventilator. The speaking valve is a one way valve that allows Arden to breathe in through his trach. However, when he breathes out, it forces most of the air up and out through his mouth. That way, more air is passing over his vocal cords, allowing his voice to be stronger and louder.
Arden still needs a lot of practice with speech, specifically using the muscles of his mouth and tongue to make certain sounds, but he has been trying his best to learn new words verbally. HIs primary means of communication is still American Sign Language (ASL), but he has learned to verbalize (in toddler talk) a few words, including: up, hot, hockey, hat, happy, wa wa (chihuahua), yeh-hee (Lexi), honk, own (bone), op op (chop chop), hop (stop), and a few more. We will continue to work closely with our speech therapist, and we know that Arden will be talking when the time is right for him. In the meantime, we will also practice having him communicate with his LAMP Words for Life program on the iPad. LAMP is an augmentative and alternative communication (AAC) app that allows you to push buttons with pictures in order to speak words and sentences through the iPad. We hope that this will help him speak to people who don’t know what he is saying through sign language. We can’t wait to see him communicate with other children using it!
November will likely be a month of recovery and rest for Arden. His knee surgery will likely make him very sore, and we know that being unable to move around as much for a while will be hard on him. Arden has been moving more and more, and in addition to using his butt scoot method and his zipzac wheelchair to get around, he recently started crawling! I realize that to most people, learning to crawl at age 2 and a half seems out of the ordinary…but for Arden, it’s a HUGE milestone! For a kid who NEVER tolerated tummy time, and can’t flatten his hands into a pushup position, he has found a modified way of crawling that works for him, and we are so proud!
Our sweet boy continues to progress each and every day, and we can’t wait to see what this winter has in store for him. Winter tends to be hard on our family because Arden doesn’t tolerate being out in the cold very well. We know that we’ll be cooped up inside for longer periods of time, but that won’t stop us from working on play and development inside. We also need to be aware of the usual colds/viruses/etc that winter brings. Tomorrow Arden will receive his first vaccination of the season, called synagis, that helps to protect him against RSV. He will receive one dose per month throughout the winter. Although it’s a miserable process to go through, we know that having this protection for him could save his life or keep him out of the hospital if he were to contract RSV.
Despite anything daunting that winter could bring, we also have SO many amazing things to look forward to. The stability that Arden has shown us in the past months has given us so much freedom to take him out and about in our community, and the welcome we have received has been incredible. We’ve attended play groups, lunch dates, hockey games and more. It’s wonderful to just do things that are “normal.” With the way everything is progressing for Arden, I know that we’ll have many more positive updates to share in the coming weeks.
XO, Rayel
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