January 2023 Arden Update
A while ago I’m pretty sure I promised more blog posts in 2023, but here we are, and my first one is happening in February. Oh well. This year I’ve also promised myself that I would only partake in hobbies and activities when and if they really served me and my soul. So I guess that’s my excuse, or reason, depending on how you want to look at it.
On January 12th – 13th we took a trip down to the city for a few more of Arden’s medical appointments. After time off for the Christmas holidays, we didn’t want Brodi taking any more time off work, so I asked my mom, or “Ah-wah” (Grandma) as Arden calls her, to drive us down. As it was only a one night stay, we didn’t take any night care with us, so by the time the trip was done, I was mighty tired! When we don’t have night care, the nights can be long and tiresome, but it has definitely gotten better as Arden has gotten more stable. I am willing to sleep next to him throughout the night instead of staying up the whole time on high alert.
We had three appointments in one day this time, and luckily each of those went smoothly, and the doctors were on time!
Home Nutrition Support Program
First thing in the morning we visited Arden’s home nutrition team, which consists of a nurse, his dietician, and one of his speech and language pathologists. We hadn’t seen them in a long time as most of our check-ins have been over the phone, so they wanted to see Arden in person.
After a lengthy conversation about growth charts (height and weight), Body Mass Index (BMI), blended food diet and pediatric formula, overall it was decided that Arden is THRIVING! So much so that he’s actually pushing maximum density (haha), and we shouldn’t need to increase his feed volume for a while. At 34 months old (turning 3 at the end of April) he is now a hulking 30.5lbs! We decided that two of Arden’s five meals per day will now consist of homemade blended foods, as he has been tolerating the blended feeds really well. The nurse also took a look at his Mic-key button (the feeding tube that goes directly into his stomach) and decided that it’s looking great and is still a good fit. We were happy to know that we won’t need a surgeon to change it to a bigger one anytime soon!
Orthopedic Surgery
Our next stop was the pediatric surgical clinic where we saw the orthopedic surgeon that deals with Arden’s feet/ankles/knees/hips. Our visit with him was an 8-week followup after the procedure Arden had done in November to place guided growth plates in his knees. In December, we also had one of the occupational therapists in Grande Prairie make Arden an extension knee brace for his right knee, as it is more severely contracted than his left. After the guided growth procedure, and bracing for the past few weeks, the surgeon was very pleased with how Arden’s legs are looking. He was incredibly impressed with the amazing work that the OT did creating a custom brace for Arden, and was delighted to know that we have someone so talented working in our area. The surgeon said that there was a noticeable/visible difference in the appearance of Arden’s knees…meaning they already look straighter! We know that the road to getting Arden’s legs more straight will be a long one, but we are hoping that it’s worth it in the end!
Pediatrician
Finally we visited Arden’s pediatrician. Our pediatrician is sort of like the glue that holds it all together. He follows all of the MANY pieces of Arden’s medical history and future, and gives us advice, guidance, and referrals along the way. He expects to see us about once per month. Over the holidays, life was busy, winter roads were terrible, and we opted to wait longer to drive down to see him. Luckily, he’s very confident in our care of Arden, and he wasn’t worried. Instead, he suggested that we now come to see him at least once every three months. So that’s very exciting!
We discussed Arden’s respiratory status, and I was proud to report that Arden is now off his vent FULL TIME DURING AWAKE hours!! He now only uses his vent when he is sleeping during nap and night time. It’s a huge milestone, and we’re definitely not rushing to make any more changes anytime soon. However, if Arden continues to do this well, next we might be looking at having him nap without his vent! Again, we are in no rush to make changes, and we are very happy with where he is at right now.
In all, we are so happy with where Arden is at right now! We know that there will be many hurdles in the future, but right now it feels as if things have slowed down a bit, and we’re so grateful for a little bit more “normal.”
XO,
Rayel
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