I haven’t had time to ponder my resolutions. Life has been more day-to-day focused in the new year. The Quail is home and better. It turned out to be bronchiolitis rather than pneumonia both this time and last. I’ve just been trying to puzzle through the last few months and work out in my own mind how big a deal all of her illnesses have been or amount too. I don’t want to over-react, nor of course under-react. Since she’s been born she has been generally healthy. She got sick with a fever and virus last May for the first time and was given breathing treatments as it settled in her chest and she had some wheezing. That worked and she was fine until she got her first ear infection in august. The infection itself cleared up fast with antibiotics but the fluid lingered for a good 6 weeks and she actually failed a hearing test during that time due to the fluid. Zuzu had ear infections straight from 7 months-13 months at which point we had tubes put in. Zuzu would get so ill with them: high fever, vomiting, then thrush and diarrhea from the antibiotics. No symptoms for a week then at each check- up there would still be fluid or signs of a new infection within a week or two and so we would start a new round of antibiotics and begin the cycle again. It was tiring and frustrating. Once she got the tubes she still had a handful of infections but by comparison- not nearly as ill. She was in daycare too and it seemed to coincide with the point in which she became more independent and could crawl and grab toys and slobber on other kidlets. So here we are again- only with the Quail the virus seems to go down into her chest rather than up into her ears. The first time she got quite ill and required an emergency room visit was in November when on the weekend her fever spiked- she was treated for the flu since her lungs and ears were clear and her fever was spiking a second time. Pneumonia followed that. She finished up her H1N1 and seasonal flu vaccines shortly after that.
Then in December there was a huge commotion with the drug manufacturers in trying to get her RSV vaccination. It finally got straightened out and came into the pediatricians office literally the same day she showed symptoms of RSV. She was hospitalized for breathing difficulties a day or two later. When she went in to the ER they said RSV, dehydration and pneumonia. Later it got clarified that it was brochiolitis, not pneumonia- which often will follows RSV. As soon as she was fever free for 24 hours she was able to get started on that vaccination regimen. We kept her home extra long after that stay just to be safe and give her adequate time to recuperate. Well then a few days after returning to daycare we noticed all of us felt sick. The Quail started a small fever a couple of weekends ago but it was there only a day and then went back to normal. On Wednesday the breathing difficulties started again. It was the chest retractions that really signalled us. She was fine- playful, cheerful and good as gold that night when I picked her up from school, then an hour later the fever started and well- the rest is written.
Since then we’ve had a couple of comments and questions about whether or not she should go to school. This is the part where I start to puzzle. It’s important to me that she be given the same opportunities as her sister. I love that she goes to the same little school as her sister and has the same teachers who love her as they loved Zuzu. I love that she plays with the same little kids and when I pick her up each night I see the same little ones playing near her. Our early intervention staff has said that she sees kids that have Down syndrome doing well in a daycare setting- that the socialization they get there is something they can’t be taught other places.
But along with that socialization comes germs. That would be the case with each and every play group, class, outing or daycare we would take part in. When we asked one of the doctors in her practice about what we can do to minimize illnesses effects on the Quail the response was, “Keep her at home”. I just don’t think that is a reasonable option. They were saying not to go to any crowded areas- including the playground, the store, daycare, etc…I admit, I’m tired and nervous these days. It’s a hard cold and flu season all the way around with the surge of H1N1 in addition to the usual suspects. Problem is I can’t predict the future. We went through this with Zuzu and now she has a hardy constitution and rarely gets sick. But that is really just in the last year. She went through her fair share of illnesses to get there. The doctors point was that the immune system will be stronger and more equipped to handle all of this when the Quail is older. I just don’t like the idea of isolating her. And to me- that’s what it sounds and feels like. I know lots of SAHM moms do an excellent job of socializing their children and I admire that. I don’t know that that would be my shining glory. We’ve also had others ask about putting her in a “special daycare” that focuses on children with disabilities. The idea of this feels antiquated to me. Having grown up with a sister with profound mental retardation that lived a good bit of her life in an institution- I just have a hard time only seeing the positives that this kind of setting can offer. I’ve spent my education and a good portion of my adulthood advocating for community integration. While we do tend to treat our therapies as separate events from our lives by scheduling a time in our day to work on, say; gross motor, or feeding therapy-it’s because our days are so blissfully chaotic and we don’t want the day to go by without some time devoted to each development issue we see specialists for- and it easily could. So far we’ve managed that alright. Some weeks better than others, but that’s life.
My hope is that we’ll get through this cold and flu season on a new medication regime that will keep her little air passages open and prevent her from getting so very sick. I admit I don’t like her being on a steroid- and especially having to give it twice a day so that one dose is before bedtime. Have you seen a tired baby hopped up on steroids at the end of a long day? Not fun for anyone. Although to be fair- she exudes bubbliness and playfullness mostly- so it amounts to her laying next to all of us and kicking and rolling over and grinning and calling out to us rather than settling in for her long winter’s nap. So it’s not all bad.
We’ve hired a lovely pediatric nursing student to stay with the Quail today and tomorrow to give her some extra rebound time and we’ll try going back to school on Wednesday and hope that all will be well. We had OT and PT today. She did excellent in PT- really much more stable and supporting herself in sitting and they were able to get her into crawling position with her portioned over a bolster for support. Good pivoting on her tummy for toys as well. OT was another story. We are getting better lip closure for feeding. Much less of her peas and pears returned to us. She loves when we use the Z-vibe spoon and smiles at her honeybear- although a good portion of that falls out of her mouth as well. Her positioning is not good though and we are looking at how to adapt her sitting to ensure a 90-90-90 degree angle for feeding. But her little legs don’t bend at the knee in our seats. We are starting SRJ bubble-blowing protocol to try to build up lung capacity as well. This therapy everyone is excited about- and by everyone I mean Zuzu and the Quail- the Quail shrieks in delight as all the bubbles I don’t manage to catch on the wand go ambling past and Zuzu leaps and bounds to try to catch them, hollering, “Do me, do me”. I try to tell her to not jump in the middle and she can have a turn- but that is like asking a golden retriever puppy to not jump up when you are holding his favorite toy!
We’ll just keep puzzling through and see how things go. I’m oh-so-glad for southern winters right now though- they are brief and not nearly as severe as the midwestern ones I was raised on.