Last night was a quiet and fun (and a bit lonely) night. Trey had a sleep study at BCCH and Ryan took him (Ave is still breastfeeding and only one parent can accompany a child). From 6pm-7:15am, it was just me and Avery. Wow it was quiet. And pretty great, spending some time with just me and Ave, since that very rarely happens, and never for that length of time. It was however, lonely, when I went to climb into bed and both my husband and firstborn were missing from our huge bed!!
Apparently the sleep study was a bit of a gong show. Trey was hooked up all over the place, so wasn’t very comfortable, and he kept asking for Ave and I. Ryan went to work late today with less than 5 hours of sleep. Poor guy.
On a note of thanks, last week we received a cheque from the MPS Society Bone Marrow Transplant Family Assistance Program for $1,500, which helped alleviate the costs associated with our trip to North Carolina. Fundraising and donations are what allows the Society to have a program like this which helps families in times of need. Thank you to the Society!
And on the ERT front, things are moving along. Still no dates, but all arrangements have been made and all we’re waiting for now is for Shire to send the drug up to Canada. In the meantime I have been researching infusion rates (which is not as straightforward as I thought) and reactions (which are not all as benign as I thought).
And then tomorrow we have our pre-op appointment with the anesthesiologist, and Wednesday Trey has his VAD surgery. Compared to other surgeries, this one isn’t a very big deal, but it is Trey’s biggest surgery to date, and letting go of your child as he falls asleep into the hands of a stranger who is going to cut your child open is not easy. However, I’m not really worried because Trey is so strong and healthy and great! And on top of it, the surgery is a good thing. He’s getting it not because anything is wrong, but because everything is right! He’s about to start ERT!!!!!!!!!!!!!