Wednesday 23 March 2016

Happy 7th Birthday Li Lin!

Our dear Li Lin turned 7 today.  Hard to believe she is getting so big! Her enthusiasm and joy of life are contagious and there is never a dull moment with her around!

Over the last year, birthdays have taken a pretty big back seat given our preoccupation with Jadon in the hospital.  Li Lin was excited to be able to have a party this year with some of her friends.  We had Jasmine (her current favourite princess) drop in to sing some songs, do dress-up and play games with the party girls.  Li Lin had a great time!
Li Lin, Jadon and 
Today, on her birthday, we picked up a beautiful cake that had been baked for her through "Icing Smiles", a charity that coordinates volunteers that bake amazing cakes for children and siblings affected by long-term illnesses and hospital stays.  This amazing baker even provided some sparklers for candles.
Picking up her cake with... you guessed it... Jasmine Theme!
Sharing the cake with our church Bible study group

Wednesday 9 March 2016

A little Rascal, and we are loving it!

Yesterday marked 3 weeks of Jadon being home!  We are so thrilled and thankful that he has been able to be at home and we have been able to spend time being a 'normal' family once again!  Our new normal however is quite different than what we've had before.

While Jadon is out of the hospital, a lot of the hospital is here at home with him!  He is on continuous oxygen and nearly continuous feeds.  His SATs are monitored overnight and he gets his antifungal medication through IV nightly.  He has 20 medication doses daily.  His PICC caps and dressings must be changed weekly using sterile procedures.  He has daily appointments.  He attends the SODR (Specialized Orthopdic and Developmental Rehabilitation)  program at Bloorview Children's Rehab Hospital. He has occupational, physio and speech therapy.  This is a daily program with breaks for Sick Kids or local Pediatrician appointments.  These daily outings involve packing the oxygen tank, the feed bag and pump, the 'emergency safety bag' (contains suction supplies and machine, oxygen saturation monitor and respiratory emergency supplies, feeding tube emergency dislodgement supplies, and PICC line emergency supplies), as well as a diaper bag and oh yeah, bringing Jadon along also!  We have night nursing care to monitor him overnight from 11pm - 7am.  The nurse administers the IV med, maintains his night feedings, and monitors his overall health and need for suctioning.  We have had to help train the nurses but things are going more smoothly now.  It is an absolute Godsend having nighttime nursing support because this means that we usually get a reasonably solid night's sleep. With full days, uninterrupted sleep is so helpful.
8 o'clock morning meds!
Jadon pointing out a 'BIG' truck on one of the many trips to an appointment
Despite all of the challenges, we LOVE LOVE LOVE all being home together.  It is wonderful to see the children all playing together and to see the leaps and bounds in Jadon's development as he is continuously showered in love!  He is a real rascal but we love to see the spirit and energy.
The two Littles!