PLUS Taylor was able to snag the 10 o'clock spot and get in 4 therapies for 3 kids in just 2 hours, yay! So now we only need 4 hours over 2 days to get 3 kids all 6 appointments they need each week! I've been given the gift of time!
Hey - there's that adorable I-know-the-camera-is-on-me look Bruce does.
GOOD: Both Bruce and Dean have been seen at the Sleep Clinic and the issues are more behavioral than medical. They have restless leg syndrome and Dean has night terrors, but the solution is very simple. Getting Dean to stick to his bedtime routine and have healthier sleep hasn't been too bad.
Helping Bruce, however, has been painful. He has no ability to self-soothe thanks to my co-sleep-anti-CIO-scared-of SIDS stance to sleep training. At 13 months old, I need to take charge of the poor sleep we are both getting. He does not sleep if not being held (or strapped in that car seat) - he has NEVER slept in the crib (wait, he did for Dan one time, but he was already asleep, and only stayed there about 15 minutes) and once asleep wakes often to kick, roll, arch his back, and scream.
I'm trying to follow the sleep plan I was given but I was far too ill and in pain last night to follow through. Today, I set the timer and went in every 15 minutes for well over 2 hours before my tears matched his. I could take it no longer and so here we both sit, me typing while he is fast asleep in my arms. It took about 8 seconds for him to fall asleep with me. I do so treasure these times and am debating if this is even an issue I really need to be addressing right now, with so much else on my plate.
Taylor's sleep apnea is not well controlled, despite having tonsils and adenoids removed a few years ago. She will meet with a doctor at the Sleep Clinic in 2 weeks and also do a sleep study. She could sleep 12 hours and still be tired, cranky, and sluggish all day since the quality of her sleep is so poor since she wakes a lot.
Tomorrow night is going to be REALLY rough. Bruce's sleep plan requires me to keep him awake until 11 while we work on resetting his sleep chemistry or something like that (but he won't sleep right away because I'm also supposed to use the crib). Then I have to wake Julia at 4 am for her sleep-deprived EEG and stay up with her to ensure she stays awake.
So if you could be praying that all of our sleep improves, the PCA help brings some sanity (and maybe time for me to clean) into our home, we would find absolutely no damage from Julia's seizures, and that God would comfort us if we find something concerning in the chromosome testing, and that it would enable us to get the best treatment available.
Also, I am running into brick walls getting Dean Behavioral Therapy and ABA Therapy for Taylor and Social Skills Therapy for all 3. Not covered by insurance, not offered, years-long waiting list, etc. I've made so many phone calls, done so much research, and spent hours submerged in paperwork. I am tired, I am overwhelmed, in pain, and a bit lonely. Lord, please bring me relief - the help we need, progress, treatment, and sleep.