Living with Grace is a little like living with that monkey from the movie Outbreak. You don’t really know what she’s got until it’s too late. The last two days I’ve been laid up with some kind of stomach virus. Last night I had to call my mom to help feed Hope. Besides me, my mom is the only person Hope will even consider taking a bottle from. Today I’m feeling better, but not yet 100% This is my third stomach bug in at least two months. We enrolled Grace in some summer activities, swimming, dance, and she’s started a playgroup at Exceptional Parents Unlimited (EPU), where Hope gets her early intervention services. The structure and interaction with other kids is great for her, unfortunately the cost is that she’s catching all those nasty little kid germs that we have mostly avoided the last two years. I especially seem to be susceptible to everything she brings home, probably because I’m not taking great care of myself and am still pretty tired most of the time.
Today my mom and Tammy took the girls to EPU for their weekly groups. Grace came home with a goldfish and octopus she made and a lot of paint on her new, white shorts. Hope’s teacher was very pleased with her progress over the past couple of weeks. We missed last week because we were in the hospital with Hope. She had to be fitted with a CPAP machine. During a sleep study conducted about six weeks ago it was discovered that she has obstructive sleep apnea. The “obstruction” is just her own tongue, she has a very small chin which doesn’t give the tongue much area to rest so when she sleeps it falls back in her mouth. We’re keeping her elevated when she sleeps and put a roll under her neck which helps to jut her chin out a bit. The CPAP will ensure that O2 flows around the tongue even if all else fails.
Because infants rarely tolerate the CPAP they wanted us to try it out in the hospital where they’d be able to monitor Hope and make any necessary adjustments. At the same time we had to start her on some reflux medications because the CPAP can exacerbate existing reflux problems which Hope has, as we discovered after her swallow study a month ago. The night went pretty well, the second half was better than the first. Hope has been sleeping with oxygen for a few weeks so she wasn’t too fazed by the tubes in her nose, but the hose for the CPAP is pretty big and when she opened her eyes it loomed large over her and caused her to panic. Tammy and I took turns all through the night at her bedside so we were there to reassure her when she awoke to this unsettling site.
Our home CPAP unit was delivered yesterday and we were supposed to start it last night but due to my condition we’ll wait until tonight. I’ll let you know how it goes…