Reagan slept well again last night. She fell asleep sometime before 10pm and then slept through til 5:45am-ish. It was a little early for my taste, especially since I didn't get to bed til midnight, but she was sweet and smiley so how could I resist!?!? She was definitely more awake today than yesterday, although she did take a little nap this morning before therapy. She had OT and then speech today and she did well for both. During speech she ate some bananas and really seemed to enjoy herself! She's been quite vocal today which is always so cute! And the smiles...I never get sick of seeing those smiles! I've spent my day washing clothes and doing dishes (and washing Reagan's syringes). I didn't get anything accomplished this weekend because of the garage sale (and Reagan being so upset and not sleeping)...so everything really piled up! I hate washing syringes and it's something that I have to do a lot! Right now Reagan is on so many medications, and we have to use a syringe for her medicine and one to flush her tube with water, we go through a ridiculous amount of syringes each day! Here's her current medication list...
Reflux- Nexium (20mg 2x/day)
Ranitidine (75mg 2x/day on bad days)
Seizures- Banzel (300mg 2x day)
Clobazam (5mg am, 10mg pm)
Bad days- Neurontin (150mg 3x day)
Suppressed immunity- Amoxicillin (200mg day)
Nausea/Vomiting- Nortriptyline (8mg 2x/day)
Constipation- Milk of Magnesia (1-2 tsp day)
Senna (1ml- as needed)
Mito Vitamins- CoEnzyme Q10 (150mg day)
L-carnetine (500mg 3x day)
Probiotic- BioGaia (1 pill/day)
As needed meds-
High heart rate-Propranolol (4-8mg every 6hrs as needed)
Urine retention-Lasix/Furosimide (30mg every 6-8hrs as needed)
Sleeplessness- Clonidine (0.05mg pm as needed for sleep)
Pain- Hydrocodone/APAP (2.5mg/167mg/5ml…as needed every 4-6hrs)
Rescue Seizure med- Diastat (7.5mg as needed for seizures lasting over 3 min)
And that's only the meds she's getting at this moment! Too many meds! Unfortunately it seems lately we're adding more, instead of taking away! We're supposed to take her in for some labs and to get levels checked on the Nortriptyline and Banzel...we just haven't gotten around to it just yet. Maybe Friday...
My mom cleans them by hand and then lays them out to dry like this. I preclean them and then put them in the dishwasher to sterilize them.
Reagan fell asleep during our walk tonight (as of now, she's still asleep)! Such a sweetie!