Adventures In Complexity

Hanging out in the Family Resource center and doing some coloring between appointments. Only one more to go!

We love having a quiet place to chill between appointments.

Starting off our full day in with back to back PT for Luca and then Caia.

Unfortunately two of our mid-afternoon appointments got cancelled because our Neurodevelopmental doctor is sick, so we have a long 2.5 hour break in the middle that we need to fill with something we have yet to figure out.

is being a great cuddle buddy 💙

has brought so much joy to all 3 of my kids both while they are in hospital and outside of the hospital. From helping Luca improve his fine motor skills after he lost the ability to use his right hand due to an arachnoid cyst on his spinal cord, to bringing smiles and joy while they have to lie flat after major spinal surgery. Gaming has enabled my kids to interact and have fun with staff, siblings and even their mom!

We have loved teaming up with to show the impact they make and the importance of gaming for kids in the hospital. My kids are even featured on their conference stand, which they think is one of their greatest achievements 😉

On this week of giving we know that Gamers Outreach will bring a lot of joy with any donations they are given.

Thanks for all you do Gamers Outreach, we appreciate you ❤️

We seem to have acquired some reindeer!!

and .girl.calamity got decorated by Caia today!

🐶

Hard at work.

We are so lucky to have these awesome therapists on our team ❤️

We are so thankful to and for making therapy fun and engaging while also hard work.

Caia is enjoying her session she won with rock, paper, scissors 😉

When you love PT so much that only one available appointment means you have to play rock, paper, scissors with your sibling to win the appointment 🤣

Caia won and scored an hour with tomorrow 😉

These lucky kiddos completed an amazing week long OT intensive with Anna from and loved every single minute of it. They were super sad to be finished and want to start another intensive next week!!

Anna is a truly amazing OT who helps my kids achieve goals and laugh and smile while doing it. We are so thankful to have her on our team ❤️

Hanging out in radiology at for Luca's DEXA scan and then some ultrasounds for both Luca and Caia. Then we have a clinic visit. It'll be a long afternoon!

We took Luca's TherAdapt posture chair into PT at today to get some new parts delivered by and get it set up and working better for Luca. We're pretty happy with how good he looks sitting in it now.

We took Luca's TherAdapt

Poor always gets very worried when Luca does his pulmonary function tests and has to cough and breathe heavily. Atticus jumps up and alerts because he is so worried about his boy 💙💛

We're spending about 5 hours at this morning for nephrology and pulmonary clinics.

Luca has been having high blood pressure readings for a while now so we got a referral to Nephrology and had an appointment booked for February. His blood pressure was much higher (163/104) when we were in the surgical center almost 2 weeks ago though and they were contemplating not going ahead with the anaesthesia, so they asked Nephrology to see us in Hypertension clinic sooner. They booked him in before the clinic started today, so we had to be here at 7.15am, which is much earlier than any of us like! We are not morning people!!

We spent 2 hours in Hypertension clinic and left with a 24 hour blood pressure monitor, lab orders to check kidney function, a referral for an echo, and a nutrition appointment and orders to increase his fluid intake! We will see what everything looks like and return to clinic in January unless something comes back that needs to be dealt with sooner.

We're now hanging out and doing virtual speech therapy appointments until our first pulmonary appointment for pulmonary function tests at 10.30. We then have pulmonary clinic at 11.30 before we head to PT for Luca and Caia at 1pm. Busy day!!

was also unhappy to be up so early and confused about Luca hand feeding him his breakfast in the car, but he is being an awesome support as always.