Update: Arden is 15 Months Old! Milestones, Doctor’s Appointments, & Next Steps

Our amazing Arden is 15 months old today! It’s incredible how quickly the time has flown by! I often get caught up in the day to day, and fail to notice the giant leaps he’s taken throughout the months. But it’s so fun to look back and see just how far he has come in these past 15 months. 

After his most recent surgery, Arden bounced back in a way that we never expected. Previous surgeries had been so hard on him, and we expected a longer recovery. However, our little man was able to come home from the hospital the day after surgery. And despite needing the occasional tylenol/advil, he was able to manage his pain and hop right back into his everyday routines. 

With this most recent surgery, Arden was placed in plaster hard casts that are intended to stay on for 6-8 weeks. It has only been 3 weeks since surgery, but he has already managed to take off a large amount of the plaster… In fact, two days after surgery, he was kicking his legs and feet so much that he completely softened the heels of his casts. Luckily, this did not impact how secure his ankles are in the casts. It’s incredible how strong his abdominal muscles are!

As Arden’s abdominal muscles have gotten stronger, he has also decided that he’s had enough of being quiet. Despite still having his cuff up on his trach, he has learned to push hard enough that he can produce sound. He now regularly “talks,” squawks, and demands attention with his voice. We are working on doing cuff down trials every day, in hopes that soon he’ll be able to have it down all the time. Once that happens, there’ll be no stopping his chatter! 

Despite the extra weight of casts holding him down for the past few months, Arden has only grown in his gross motor skills. He doesn’t yet crawl, but is able to roll onto his tummy, and has discovered new ways to shimmy himself around the living room. In fact, just the other day he discovered how to pivot 180 degrees when he wanted to see what was happening on TV (we were watching the olympics haha). Due to his condition, Arden has what the physiatrist would consider “disordered development.” Although Arden cannot yet crawl, or pull himself into sitting on his own, when he’s sitting up, he does a great job of balancing and holding himself up on his own. We are still working on his fall reflexes, because he hasn’t had to use them much. Despite his scoliosis working against him sitting in midline, he is learning to use his core muscles to correct himself in a seated position. His fine motor skills continue to be extraordinary despite the contractures in his hands/fingers. 

Even without being able to make sound, Arden has developed ways to communicate his wants and needs to those around him. He points to toys that he wants, signs for “more,” and copies movements that he sees others making. He listens attentively and responds to requests made. He willingly shares toys, and points to various body parts when asked, “Where is your ______?” So far he knows head, hair, tongue, leg, bum, belly, and sometimes eyes. With Arden having a physical disability, we often get asked about his cognitive development. Escobar Syndrome is in fact a physical condition, and with that, Arden is not expected to have any cognitive delays. Even though he has a trach and a vent and that sometimes limits how he communicates, he is just like your typical 15 month old. In typical toddler fashion, he’s soaking up everything that’s happening around him like a sponge! 

Arden has also been doing well with his off-vent trials. He continues to have 3-4 ten minute trials off of his vent per day, and we may look at increasing those next time we speak to the respirology team. Lately Arden has decided that he’d like to initiate his own times off the vent, and thinks it’s great fun to pull off his vent circuit and use it as a toy. He’s discovered that hitting the end where the air comes out makes a very cool sound, and he’s regularly serenading us with this new musical instrument… 

Another leap that Arden has made this month, is ditching his oxygen during the day! Where before, Arden always had to have a little bit of extra oxygen teed into his vent, now he only requires it during sleep time. This step has made a huge difference in how we travel! Not having to haul an oxygen tank with us has made it much easier for Arden and I to go on walks with the stroller. Where before I had to use one hand to push the stroller and another to pull the oxygen tank cart, now I can use two hands to push and get us places a lot more efficiently. Lately I’ve found this to be incredible for my own physical and mental health, because we’re able to walk further distances together. 

Last week we visited Arden’s pediatrician in the city for a 2-week post-op checkup. They were happy to hear that Arden is on “room-air” (no extra oxygen) during the day, and that he has recovered well since surgery. His doctor was also very impressed at how well he can kick his legs despite the weight of the casts. The only worry we had was that Arden’s trach stoma has grown some bacteria. However, the stoma looks amazing, and unless he gets sick, we will not need to treat it with antibiotics. Trach stomas are known for colonizing bacteria. It’s something that is dealt with on a regular basis. However, Arden has not had any granulation tissue growing on his stoma in a long time. That means no silver nitrate treatments, and we’re grateful for that!

The next step in Arden’s treatment will be to have his casts (and potentially the pins in his ankles) removed. This will likely happen within the next 4-5 weeks. We will also try to coordinate with ophthalmology, so that Arden can see them about his ptosis next time we are in the city. Although it is scary to think that they need to alter my baby’s face, it would be nice for his eyelids to be lifted so that he can see properly, and it won’t affect his balance anymore. 

This week Arden has been popping through some new molars. After a few weeks of minimal secretions, he’s been needing a lot of suctioning lately. However, because he’s been so stable for so long, it’s nice to know that when he does get more secretions and needs some extra sleep, we’re not worried about illness. We know it’s just the arrival of more teeth! 

A lot of changes have happened so quickly for our sweet Arden, and we are so proud of the milestones he has achieved. As I often say to people, we don’t worry about a destination. We know that Arden will have lifelong challenges, but we focus solely on the growth that he exhibits from day to day. Our hearts are full, and we are so proud to be your parents sweet boy! 

XO, Rayel