The blog has been quiet for a while because I’ve been thinking about what to say. Big stuff is happening around our house. I’m back to work (evenings and Saturdays), hubby has been battling pneumonia, and after weeks of testing and worrying, we have an answer to Rowenna’s sleep issues. Our schedule has been overflowing with the mundane, the medical, and the downright fun – and the blog has gone to the wayside in the meantime.
As for Rowenna’s diagnosis: she has central sleep apnea with a little obstructive sleep apnea thrown in there. The treatment? Oxygen at night.
There’s a huge green oxygen tank in my girl’s room. It’s ugly and cold and medical. It feels like an intrusion. I’ve always seen Rowenna’s room as a safe place for her, a place where she rests away from her appointments and therapies. Seeing that thing in there throws me for a loop every single time I go in there. I know I’ll eventually get used to it, just like I got used to her ng-tube, but for now it’s a reminder that while there are days that are typical, there are things different about our life.
But if it helps, it stays. So we try each night to keep a nasal cannula attached to 17 month old cheeks and we’re hopeful this might just be the little bit of support Rowenna needs to get restorative sleep.
And though we’ve been reminded lately of some of the challenges in life, we’ve also been reminded of the joy our daughter brings to our lives.
In the last three weeks, Rowenna has been to 3 parties, 4 playgroups, and a performance of Sesame Street Live. She’s been visited by both sets of grandparents and one of her uncles. She has started giving kisses. (I cried even just typing that, I am so proud of her.) She has taken her first tentative steps using a walker toy. She can climb stairs with such ease we’ve had to gate everything in the house.
Rowenna went to her first pumpkin patch and watched us carve pumpkins. (Last year she was 3 weeks post-op and slept right through all our pumpkin festivities.)
She is showing increased interest in music and musical instruments. One of her favorite things is to play one of her instruments and dance along to her own music. We also spend 15-20 minutes a day at the piano. She sits at my feet and feels the vibrations and then we spend time doing some free-form playing and she bangs out some notes of her own.
She went trick-or-treating for the first time this year. Hubby took her to just a few spots but she was oohed and aahed over at every turn. One of my coworkers even put together a special baby-friendly treat bag for her so Rowenna stopped by my place of work, too. I think she makes quite the adorable gnome. (Inspired by the movie Gnomeo and Juliet which you really need to go watch right now if you haven’t seen it!)
But my proudest mama moment came this week when we went to see Sesame Street Live. We went with two of her friends in celebration of a friend’s second birthday. Rowenna sat in her own seat and didn’t try to crawl away once during the entire show. She danced to every song and clapped after each song. She was absolutely entranced and I was so proud of my big girl, sitting there in her own seat and enjoying the performance. I cried, of course, but I was with friends – we were all proud of our littles that day, and we were proud of our own and proud of each other’s kids as we sat there and enjoyed the performance.
So while we have a big, ugly tank of oxygen in her room to remind us of the things I hate to remember about Down syndrome, I am so grateful for the last few weeks for reminding me how normal life really is. Birthday parties, trick-or-treating, visits with family – all seems pretty typical to me!