I still can’t bring myself to reflect on the year that has passed — it’s too painful. Too many horrible things have happened. I’ve watched him suffer through too much. I can only focus on the present.
We’re so blessed to have made it this far.
At a year, he has spent just over half his life in the hospital (197 of his 365 days).
I’m struck, sometimes, by the normal things Felix has still never experienced at one year. Because of infection control protocols, he has never:
- splashed in a bathtub of water
- sat on the grass
- played with leaves or eaten dirt
- been smothered in kisses
- snuggled with his big sister
- seen another baby
- pet a puppy or kitty
- shared food with mommy
BUT! He finally gets to live at home. And he is so, so loved.
Felix is just a wonderful human being and a delightful part of our family. He’s still an easy-going baby who loves his bottle, adores his big sister (still mostly from a distance), and has figured out how to move across the floor without actually crawling. He likes to party for two hours every night sometime between midnight and 4am. His smile and laugh are infectious, and on a grumpy day he can always be calmed by stepping outside or even looking out a window to see the trees blowing in the wind. Future nature boy in the making.
He’s still not sitting on his own, crawling, or babbling (he prefers to growl), but we’re hopeful that with time and support he will make progress in the coming months.
(We finally saw an occupational therapist for the first time this last week, and have a physiotherapist and speech therapist scheduled to come see him this coming week. I worry about him with every single breath I take, but I remain hopeful.)
He’s four months past gene therapy. We’re still waiting on the results of the latest blood tests, but the preliminary ones done by our own hospital’s lab look good.
Significantly, his CMV is still below the level of detection. We’ve hopefully made it through his lowest drop in T-cells, and we are overjoyed that the CMV never became a problem. In fact, it never even rose to detectable levels! We are beyond thrilled, and at the same time seriously peeved at the doctor (who shall remain nameless) who tried to cancel Felix’s gene therapy against our wishes because he feared Felix would die from CMV. So much agony and fear for nothing!
Our doctor predicts we’ll be able to stop his anti-CMV meds in about a month, at which point we can hopefully have the central line removed. (In the picture above you can see he’s still hooked up to continuous IV– you can see the coiled tube that connects to his IV pump. We’ve gotten creative in how we integrate it into our lives). How exciting to imagine our boy disconnected from a machine for the first time since he was a tiny baby!
Felix’s Birthday Celebration
Since he’s still in isolation, naturally we had a quiet celebration. We put up our fabric birthday banner and he got to wear his new homemade felt birthday crown. (It features red felt leaves since his birthday is in fall.) The grandparents stopped by for some cupcakes and we sang Happy Birthday.
For the cupcakes, I used my standard chickpea chocolate cake recipe with cream cheese icing. But this time, instead of using beets to colour the icing (pink didn’t seem quite right), I used a teaspoon of turmeric to make it yellow. You couldn’t taste it at all! I sprinkled them with naturally-dyed blue sugar sprinkles (you can buy them here).
Hoping and praying for many more birthdays to come.
Thank you, always, for your prayers, love and support.