we've been busy with an over-scheduled week. we keep pushing on but it gets so overwhelming sometimes when life on a daily basis becomes so exhausting. everyday this week, noodles had three doctors/therapy appointments. yikes! meanwhile, nate's teachers had some conferences so there wasn't any school for two of those days. luckily bop took nate to the playground one of the afternoons so he could run all his silliness out. and the other day some friends of his had a playdate and then he want over to "camp didi/bops". and i've been campaigning to get the state program to order and pay for some therapy equipment for lj (before they all leave on vacay for the holiday next week). 
it was prescribed by Children's hospital and the other therapists who work with us also think it would be highly beneficial to have this equipment assist us at home. but it's really expensive, about $1,000, so hopefully we can get it covered by the assistive technology fund. a minor victory i did manage to forge ahead with the bread chronicles and make this yummy brioche recipe.i got conflicting news about noodle's GI issues this week from the folks at CNMC in DC. they don't think he is a candidate for the feeding program at Kennedy Krieger up in John's Hopkins. who knows if this is just chalked up to being competitive hospitals or if there's merit in their opinion. but CNMC thinks Kennedy Krieger puts all the emphasis on desensitizing children to oral feeding so that they can increase the volume of feeding nutrition. this is not helpful in the long-term because they think kids like noodles will still have feeding disorders due to the fact that it doesn't teach them to enjoy food. we'll still go to the evaluation at kennedy krieger for the evaluation in a few weeks to hear what they have to say.
yesterday brought about more health worries for lewis. we thought lj's cellulitis was gone but since friday night it has gotten a lot worse and he's done with the keflex. he has had an on-agai
n-off-again fever (usually around 99.5) but yesterday he spiked a 102.5 fever and he had diarrhea. the skin around his g-tube button was bleeding enough to saturate the dressing, go through his shirt, and then stain my shirt. all of this has made him extremely fussy. he also hasn't slept well in a few nights and we can't seem to make him comfortable. he and i headed into the urgent care center around 3pm yesterday so that we could be certain there was no ear infection or strep infection. the on-call doctor took a skin culture so we won't know for sure whether the skin infection was a strain resistant to the Keflex or what not. and due to the high fever and the fact that he didn't have his H1N1 shot yet, he was prescribed Tamiflu. It's really quite foreboding.
we'll see what tomorrow brings. hopefully it's not anything to be worried about and a different antibiotic won't be resistant this time & lj's fever/stomach thing will be just a fluke. but this week promises to be another bumpy ride. we have an appointment with the eye surgeon to see how his eyes are doing & a follow up appointment with the neurologist. we are going to the GI clinic to check on the current cellulitis situation and discuss his nutrition with the dietitian. we're waiting to hear the results from the skin culture any day now. and if he is up to it, he will go to CNMC for his weekly feeding therapy. thinking of the yummy food at our Thanksgiving feast & relaxing with family will definitely bolster my ability to focus and get through these trying times.
No comments:
Post a Comment