Lauren health update

 Lauren had a sleep study August 12th that showed severe obstructive sleep apnea with sleep related hypoventilation and retained carbon dioxide. She's already had 2 surgeries for her sleep apnea, so obviously this is stressful! 

We saw sleep medicine today. Dr. Patel discussed how patients with trisomy 21 (aka Down syndrome) are more likely to have sleep apnea, and especially refractory sleep apnea (meaning it persists after treatment interventions). She recommended seeing ENT (already scheduled next week) to discuss a sleep endoscopy and possible surgical options. We do NOT want another surgery. Not only does it suck for obvious reasons (risks, nobody wants surgery, etc) any surgery tends to throw off her entire sleep schedule and it takes months to get back into a better routine. Plus time off work and school, recovery is misery (for Lauren and for me). Dr. Patel did not seem super optimistic that CPAP alone will fix this problem enough. She said she thinks ENT will for sure want her to have a sleep endoscopy (which will have to be done with her laying on her belly to get a clear picture of her anatomy while sleeping because she does not sleep on her back at all). She did say we're seeing the best ENT (we know, he's great!) in the system.

So. Not great news. Not horrible news. I'm really hoping Lauren can tolerate the CPAP mask. Dr. Patel thinks just a nasal mask should be okay, with a chin strap to help keep her mouth closed. This all of course depends on Lauren's ability to tolerate/comply treatment. She did say sometimes once you start treatment, central apneas can emerge (the brain not telling her to breathe during sleep. She had 3 of these out of 102 events during the most recent study), in which case she'd need further intervention (bipap vs cpap). I'm working the day she sees ENT, so Greg will take her and I'll conference in by phone.

We're also going to be starting a couple weeks of serial casting soon to both ankles to stretch her achilles tendon and get her more range of motion. This will include hard casts on both ankles for a couple of weeks, then nighttime braces to help her stay stretched. This will hopefully help her walk better and more efficiently, allowing her to better strengthen her legs and her left hip and improve overall mobility.

The good news is that school started and Lauren is loving it so far! We're really thankful for a fantastic teacher and Lauren's best friend is in her class.