Update and upcoming surgery…

As previously shared, the culture from surgery revealed she had bacteria in the sinuses and staph in the ear. (Neither of these are surprising - we have been battling both for as long as j can remember and is why we are pursuing immunology.) Unfortunately, the antibiotic she was on for bacteria in sinuses did not cover the staph, and unfortunately, the hole in her left ear drum is small which while good for improved hearing was not helpful for allowing the drops to get down in there. (We also tried other naturals but didn’t have any luck.) So once she was on an oral abx for staph, it finally cleared. 

Her sinuses over the past 2 weeks have been the clearest they’ve ever been. I can count on one hand home many times in her life the periods of times she’s had when her daily rinses have nothing come out… 

So I am eager to see how long this lasts, if we can keep it this way. 

Her sleep numbers (which are typically just under 2 apneas per hour which is the goal) and overall restlessness (which is not good - and hopefully the next surgery will help with that) has not changed.  

At our follow up with Dr. Knollman he said everything looks good and asked if we’d like to move forward with surgery to remove the Lingual Tonsils. (These are the tonsils at the base of the tongue.) Her palatine tonsils (those are the ones people are usually referring to when they say tonsils and are at the back of the throat) were removed at age 2 along with adenoids. 

As mentioned before, Dr. Knollman shared her lingual tonsils are blocking 75-90% of her airway right now. 😳
 We have no idea how long this has been the case - we haven’t had a lot of work with airway providers (ortho) and it did not come up on their X-rays. 

But it sure would explain why even though her apnea is treated based on her numbers, she’s still restless and over the years we have not seen her improve in stamina. Her runs have not gotten any easier, faster, she can’t run farther… her body is working SO dang hard to keep O2 up in the 97-99 range.

Surgery is scheduled for October 8th - she will have Fall Break as a recovery period.

She had several days last week where she was sleeping 12-13 hrs and also falling asleep in the car (which she never does) — no other symptoms — clearly was fighting something off. 

Seems to be back to her baseline now. 

We have bloodwork, audiology, and myofascial release appointments leading up to school starting.  I will also need to figure out what’s next - who to work with - for upper jaw, midface growth. We have done a great deal, but ultimately, have not gotten the full forward growth needed for her airway (width has been good). Given her age, it’s now going to be more difficult, more involved. 

MARPE (Miniscrew-Assisted Rapid Palatal Expansion) is being suggested. 

We just keep plugging away and making sure she has opportunities, experiences and making memories living her best life while navigating the challenges. Thank you for loving our girl and supporting the journey!