I can’t believe it. He’s a year old.
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).
Oh, how we love this boy. We can’t thank God enough for him.
Hoping and praying for many more birthdays to come.
Thank you, always, for your prayers, love and support.
Happy Birthday, Felix! You’re such a big boy now! I’m sure you’ll look back on these photos one day and be so very grateful for your amazing mommy and daddy and family – they love you so well. Keep getting stronger and stronger – you’re doing GREAT! xoxoxoxo
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Hooray! Happy Birthday Felix! Many prayers for you to continue to grow well and heal.
Happy birthday to Felix! Still praying, so glad that he is doing so well.
Happy birthday Felix! We’re so glad to hear you’re doing well. God bless you, little one!
Happy Birthday, Felix!!! I look forward to hearing about many more :)
Oh, that is so wonderful! Happy birthday, Felix! God bless you all in the years to come.
I’m so happy. Happy birthday, Felix! Keep on keeping on, little buddy.
Happy Birthday Felix!!
I stumbled across your blog about 2yrs ago, looking for a healthier choc cake alternative and have been following your blog ever since :)
Enjoy the celebrations, you guys are amazing and wishing you many many blessings.
With love from Australia, Down Under!
Xxx
Happy birthday, Felix! And congratulations to the rest of the family who has made it through Felix’s first year.!
I’m a mother of a child who was…not well… during his first 15 months. Though nowhere as ill as your boy, my son was sick and it was the hardest thing I have ever been through. I can’t imagine how your family is coping but if it is anything like our situation, it will hit you “later”–when things settle down or are more stable and you get out of survival mode and can reflect back on what you’ve just been through. If that happens to you, know that you’re not alone! And second, talking with someone who is skilled at helping you sort through those feelings might be helpful. It has been for me.
Thank you so much for writing about your life. I have found your blog helpful for so many reasons and I appreciate your candidness and thoughtful approach to life and parenting.
Happy happy happy! Love his crown, but more his Smile! Wishing you all the best <3
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I adore that little grin. His crown is adorable. Happy birthday Felix. :-)
happy birthday little guy! first birthdays are a celebration for the parents as much as the child and its especially true in felix’s case. what great pictures to be able to take and share!
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Happy Birthday Felix. What a year for the whole family. I still can’t get over how this blog turned out of the blue into completely new territory. When I read you were pregnant again K I looked forward to hearing you do your close to nature thing with another child in tow. Instead your family has been faced with extraordinary challenges and you have had to go against the grain to keep your beloved son safe. You have had handled it with grace and have inspired me in so many ways, so thank you for sharing your rich tale and keep on keeping on.
SO happy to read this! And I’m sure he’s going to be walking & talking before you know it. He hasn’t had anywhere near the experiences of babies that haven’t gone through what he’s been through. He’s got some catching-up to do.
I have been following your blog for several years now. It has always encouraged & inspired me to continue trying to live a life of simplicity and purpose in all that we do. I have especially connected with your writings this past year or so, as my little one will turn one this week. It was an oddly fun connection to find out you were expecting near the same time I was (even though I really don’t know you at all!) And while I wish for you that Felix was living a more ‘normal’ life, I am so appreciative of the way you have shared some of your thoughts and feelings with us through this blog. Motherhood has been a bigger challenge than I expected it would be, and some days, reading your posts help me remember that our God is so so good. Thank you for sharing with us!