Lockhart Life Update, Arden is almost FOUR!

It’s been over a year since I’ve shared anything in this space, and I suppose I have no good reason for that aside from the fact that once again, life has kept us busy and more fulfilled in many ways. And also…we have a little boy who is almost FOUR scampering around our house! 

In the past year, Arden has grown and changed in so many ways. There’s so much to tell, so I’ll try to space it in ways that make sense! 

School

Arden started pre-k in September 2023! He attends two mornings per week, and we feel like that’s plenty for him at this time. This was a huge move for him, and it took a lot of planning, but because I’m attending with him, it was a lot less prep-work. If Arden were to attend school all on his own, he would require at least an LPN level nurse to attend with him in case of a respiratory emergency. For example: if his trach tube were to come out or get blocked and require an emergency change. So for now, if I’m in the building with him, he’s able to have the MOST amazing educational assistant with him. 

This year we worked towards having me out of the classroom, and just in the building, but after being together 100% of the time for his entire life up until this point, it’s been a hard adjustment. He didn’t want me to leave the room at all, and now that he’s gotten more comfortable, I think it’s me that’s having a hard time leaving the room. I know that his attachment (and mine!) comes from having a very traumatic start to his life. My security has always come from being Arden’s primary caregiver. I built a feeling of safety in knowing that I’m always the one who cares for him and I know all of his needs. Now that he’s stable and thriving, it’s time for me to step back so that he can have all these new experiences. But it’s not easy! 

As Arden builds new capacity in his school journey, I constantly worry about the world being kind to him. He is learning to make friends but he’s not a super social child with people outside of our family circle. So far, most children have been incredibly kind to him, but the odd one that isn’t reminds me how hard school might be for him as he and others start to become more aware of his differences. I hope that we can build Arden’s confidence in himself so that he knows his worth and isn’t worried about the odd stare or unkind remark. He’s very lucky to have met some very kind people and new friends in and outside of school! So hopefully we can make time for some more playdates in the near future!

Respiratory Health

In the spring last year, we visited trach clinic with Arden where we saw the pulmonologist, respiratory therapist, and ENT. At that time, Arden was using a one-hole speaking valve all day, and his ventilator with the cuff up at night for sleep. The one-holed valve allowed Arden to breathe in through his trach, and out through his nose and mouth in order to produce sound for speech. However, the relief hole in the side made it so that his lungs wouldn’t have too much pressure.

It was suggested that since Arden wasn’t requiring any ventilation during the day, then he shouldn’t need a cuffed trach. We knew that he needed to get a bigger trach during that visit, but we pushed for him to keep the cuff because we had trialed him sleeping without it and it didn’t go well. For months prior to our trach clinic visit, we had tried having him fall asleep with his trach cuff down like he has (and requires) during the day, but as soon as he fell asleep many of his respiratory parameters dropped into dangerous levels. For example, as he would fall asleep, his oxygen saturation would drop too low. We knew in our hearts that he still needed the ventilation at night, and I’m so glad we listened to our instincts. The community respiratory therapist (RT) that was working that day tried to get us to change him to a non-cuffed trach in the clinic that day, and we basically told her that would be insane. I’m so glad we didn’t agree to that, because it was a Friday, and even after changing Arden to a bigger trach size that day, not much changed. When we tried him sleeping with the cuff down throughout the weekend, it went disastrously and we ended up having to put the cuff up every night. 

The fact is, largely due to Escobar Syndrome, and scoliosis, Arden has an extremely restricted chest wall. He has what they refer to as “restrictive lung disease.” Although his lungs function fine, when he’s sleeping, he is not able to expand his tight little chest big enough to get the breaths he needs to ventilate well on his own. That’s why he still requires his ventilator to sleep now. 

At that visit, we also switched Arden to a no-hole speaking valve after the ENT checked his pressures and established that it was safe for him. He’s been doing well on that ever since, and only requires his ventilator while awake if he’s sick or extremely tired and sleep is imminent. 

During trach clinic last year, we also tried covering Arden’s trach, to see if he could breathe on his own through his nose and mouth. He was able to do it for a couple minutes, which is wonderful! If Arden was off his vent for sleep, we would probably be doing what is called “capping trials.” That’s where the end of the trach tube gets a cap to block it, so that the patient has to breathe on their own through the nose/mouth. This process is usually what happens when the respiratory team is planning for decannulation (removal of the tracheostomy tube). Arden still requires ventilation for sleep, so we’ll probably keep his trach for a while. If he ever does get decannulated, he would likely have to continue using a bipap mask and ventilation for sleep time. 

We will visit trach clinic again next month, and we’ll see if there are any big changes coming. 

Speech

Arden’s speech has come A VERY long way in the past year. Back when he started “talking” he used a lot of American Sign Language (ASL) and we also had him using the LAMP Words for Life speaking program on his iPad. Now, he communicates almost all of his needs verbally, and only uses sign language when he isn’t understood by a listener. After beginning school, we were discharged from AHS rehab med services (occupation therapy, physical therapy, and speech therapy). However, Arden’s speech needs are definitely not being met by speech services in school. He is on the SLP’s case load, but is not seen by speech in school. That said, I advocated for Arden to once again access speech services outside of school to increase his articulation ability. Arden speaks in full sentences, has a large vocabulary, and has an excellent understanding of language. However, he often speaks quietly and he has a difficult time forming many consonant sounds with his mouth. Arden’s mouth is most often in an open position, and that makes a lot of sounds tricky. For the past few weeks, we’ve been seeing an SLP via zoom who has been helping Arden with a lot of these skills. He’s trying really hard and we’re definitely noticing a difference in his speech. We hope that as time goes on, everyone will be able to understand what Arden says! He truly does have A LOT to say! 

Eating

Arden still gets all of his nutrition from gtube feeding. Most of his food is prepared by me and blended so that he can be tube fed. However, he still gets a couple pediatric formula feeds through his gtube per day because it works for our schedule. Because Arden is off of his vent during all awake hours, it’s safe for him to consume food via mouth. We have tried really hard to encourage trying and tasting safe foods (liquids and purees), but Arden does not agree to taking and swallowing any volume of food via mouth. He recently took an interest in milk, but he’s scared to try it on a spoon or bottle, so he dips his fingers and licks them. We will keep trying, and speak to our team at trach clinic to find out what the next step is in encouraging Arden’s oral feeding. But in the meantime, he is very well nourished with his gtube feeds! 

Wheelchair

In January of this year…Arden got his first wheelchair!! I started the process of getting his chair back in September 2023, and I’m not going to lie…I pushed VERY hard for him to get his chair in a timely manner. It was suggested to us that it could take over a year for Arden to receive his chair, and to get custom seating put together. Our community no longer has a seating clinic, so the only one available to us is in Edmonton. The Occupational Therapist who measured him, ordered his chair, and handled the referral to the seating clinic for Arden understood how important this step was in Arden’s development, and she was instrumental in getting us results MUCH faster. I explained how mobile Arden is, and how independent he has become, and I made it very clear that him waiting for a chair would be detrimental to his development. The OT worked hard on the medical supply vendor so that when Arden got his chair in the end of January, we had temporary seating to use with it until he could attend seating clinic. However, we were incredibly lucky because he also got into seating clinic less than 2 weeks later! In less than 5 months, Arden had his fully set up chair. It sounds like a long time, but in this province, that’s record speed! We were so excited! 

Arden’s chair has been amazing for him. He was immediately proficient at operating it on his own because he’d had practice with his small blue zipzac wheelchair. He’s able to be at the same level as other children at school, and uses it to go as fast as he can during gym class. It’s also much easier than a wagon for Brodi and I to manoeuvre into buildings, stores, etc. Arden still likes to spend a lot of time out of his wheelchair because he’s gotten really amazing at crawling, climbing stairs, and pushing up to reach things. 

We’re definitely finding out how inaccessible the world is as Arden uses his chair more and more. Curbs are difficult, most places in our community have steps or stairs and no accessible door buttons. The hockey arena where he loves to watch weekly Junior B. games is the oldest and least accessible building I could think of. But we’re making it work! We know that the world is not built for people with disabilities, but we also feel like that shouldn’t hold our Arden back. We will carry him, transfer him, and ask friends/family for help when needed so that he can participate in everything he loves. If we’ve learned anything from parenting Arden, it’s that most things can be achieved through sheer will power. 

Orthopedic Surgery

In February of this year, the orthopedic surgeon that deals with Arden’s legs/hips/ankles had planned a VERY big procedure for him that would help to straighten his legs. The planned procedure involved releasing the tendons in the hips and knees and also taking a small wedge out of the right femur in order to make the legs more straight. The plan would also involve plastic surgery in order to graft skin onto the backs of the knees once they were straightened. It was suggested that doing this would make Arden’s legs straight enough to walk one day. However, we also have a physiatrist who follows Arden every six months, and his in depth knowledge of the musculoskeletal system is imperative to our decision making process. He had very valid concerns about the procedure, and was worried that after straightening Arden’s legs in this way, it could actually cause him to lose a lot of the strength and mobility that he has gained on his own. 

After pondering this for quite some time, Brodi and I made the decision to cancel the surgery. Immediately after cancelling, I felt an intense sense of relief. I know in my heart that we made the right decision. We know that Arden will likely use a wheelchair (at least part time) for his whole life anyways, and we want him to maintain all the mobility that he currently has. His legs are too bent to walk “normally” but we believe that the strength he has will one day allow him to transfer himself into bed, other chairs, vehicles for driving, etc. We are so proud of where Arden is today, and we know that he will continue to show us how strong he is in the years to come. 

That said, Arden still has pins in his knees that were placed a while ago for guided growth. These were placed in order to help straighten his legs as he grew. They’re not meant to be there permanently, so they will eventually have to be removed. Arden is on the waitlist to see the orthopedic surgeon and have those pins removed, but that will not be very invasive and should be able to happen during a day procedure without an overnight hospital admission. 

Walker

This year the physical therapist that occasionally sees Arden in school helped to set us up with a small “crocodile” walker for Arden. He has been weight bearing more and more, but cannot yet pull himself up to stand. This walker has a harness that goes around his bum and hips and spots for his arms to sit so that he can pull himself up and use his legs to push him around. Right now he’s only using it for very short periods of time, but we’re hoping he will build stamina in the walker the more he practices. People always ask if tools like this will eventually replace Arden’s wheelchair, and the answer is no. He will likely always need his wheelchair in order to have fully functional mobility, but using tools like the walker will help to build his strength and skills so that he can access more things around our home and community as he grows. 

Wayne

In December 2023, Arden’s best friend, Rudy (his grandparents’ golden retriever) was reaching the end of his journey on this earth, and we knew that it was going to be incredibly difficult for Arden to say goodbye to his favourite pal. We decided to get Arden a dog of his own, and Brodi’s mom helped us to find the most perfect golden retriever puppy. Wayne (named after Wayne Gretzky) came to our family on December 29, 2023. He’s a rambunctious dude, but he’s already shown his intelligence and his love for our Arden. Rudy passed on February 5, 2024, and our whole family was heartbroken. He had become such a huge part of our life, visiting Arden almost daily and participating in all of our outdoor activities…including family pictures. I know that Wayne’s presence helped to heal the space left after Rudy’s absence, and we’re so lucky to have another sweet boy in our family. 

What’s next?

On Monday Arden will turn 4 YEARS OLD. It’s hard to believe where we are now, and how far he’s come since he made his entrance into the world as a 5lb little bundle almost 4 years ago. We’re hoping that this spring and summer will hold A LOT more adventures for Arden and our family. I’ve been itching for a visit to our family’s trap line, and we think that this will be the year that we finally introduce Arden to our off-the-grid happy place. We know our little nature lover will be just as overjoyed as we are. 

Until next time,

Rayel