Well, this week has just been exhausting, but nothing really new. Brandt and I saw the cardiologist yesterday-he's reached the 9-lb mark. 9lb 1 oz to be exact. So he's still at the very bottom of the weight charts, but at least his gain is consistent. His 02 sats remain mid 80s and good BP readings. All of this indicates we are on track with good progress toward his second surgery...I guess I was hopeful that at some point (in the near future) some of the 8 meds/supplements he's on wouldn't be needed, and the constant attention to his weight gain would relax. At this point it's all still necessary. He's had another rough week with spitting up--and his doctor wants his calorie intake increased if possible. So maybe after surgery #2 mom will get more rest?! Oh, and several of you have asked--I will not be having surgery for right now. My doctor wants to treat everything with medicine right now until after his second surgery as well, due to just everything going on now and the extreme fatigue from more surgery for me right now...probably good advice and I'm hopeful the new medicine will help.Another good note, I am grateful for family who have helped give Joel and Seth some extra activities during the week. My aunt takes them swimming and other fun outings a couple times a week, and they also get to the library, park, etc with Glenn's family. Glenn's dad has been taking them fishing, and Joel especially has been very diligent in pursuit of a large bass. (Seth gets antsy sitting around waiting for a fish to bite--as do I, incidentally--but has shown a huge aptitude for reading instead.) While Joel still hasn't caught the 5 to 7-lber he's after, he was thrilled to catch this 2 to 3lb large-mouth bass yesterday:-) And Seth LOVED the firetruck and peppered fire personnel with questions at a church activity they attended with my aunt. Lots of happy memories, thanks to such great support, despite the fact it's been difficult to impossible for me to get out with Brandt in the heat.
It will be time for the 2nd surgery before you know it. I too am looking forward to a bit of a break. We don't have reflux, but with his DS we are swamped by therapy appointments. At least we'll have fewer cardiology appointments and I can look forward to a longer gap between surgeries.
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