Health knowledge made personal
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We went to dinner at The Old Spaghetti Factory before the show. It's been ages since we ate out as a family and it is one of our favorite places. January: Ainsley had Brow Surgery to Prepare for Eyelid Surgery, met Ainsley's new teacher (late hire) February: Ainsley had Partial Adenoidectomy and Granuloma Removal (This is also the month I started a scrapbooking business before I realized what a crazy busy year it would be. Ha!) March: Ainsley had airway scope, some degree of swelling still there capping slightly better after granuloma removal; received first AFOs; cognitive testing, started allergy meds and nasal steroids (they didn't do much) April: hip/pelvic and leg osteotomy surgery followed by spica cast, starts getting into more trouble (and knows it), she goes back to school in wheelchair, gets stronger stomach from lifting up in cast May: spica cast removal followed by use of a hip brace; neurological evaluation, meeting to discuss getting a more advanced AAC device, does well during the daytime without trach for short period June: received Vantage communication device the week school got out spent following weeks programming it for use and getting Ainsley familiar with it, review with DDD office for waiver program, second meeting with eyelid surgeon July: lost the hip brace!, returned the wheelchair, started short term speech therapy with specialist and saw a huge increase in her efforts to be verbal, started weekly rehab physical therapy, she starts regularly helping make her food August: started "walking" again, consulted with second eye (occuloplastic) surgeon including Skype conference, work on drinking teaching drinking from a straw, found she could be without the trach for a long period during the day (but it's difficult to reinsert trach), confirmed Ainsley has obstructive sleep apnea with cap on or without the trach September: research and shopped for a wheelchair (the perfect one doesn't exist), started trialing CPAP, met with eye surgeon for 3rd time to finalize decision, worked on sense of smell (which has improved) using scent game October: IEP meeting, Ainsley learns to hang in her walker, she attempts running in it for the first time (using gravity), started more aggressive feeding plan November: got the great news that our insurance no longer has a lifetime maximum benefit, started training new nurse (who since quit) December: eyelid surgery, leg plate removal, swallow study, outside AAC evaluation, ENT follow-up It was a big year wasn't it? Looking back at it I can really see how much was going on and why it was difficult, and yet this list doesn't include the many things that were not specifically related to Ainsley. Her needs dominated the year which was already busy but somehow we made it through. Looking forward, I'm hoping for an easier 2011. Looking back...... In 2010 these are the changes we've observed: I'm looking forward to seeing what Ainsley will do and learn in 2011. I wish you all health, peace and happiness in the coming year! |
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