Awake

Today starting at about 9-9:15 she has been awake AND alert (not just awake).  We didn't give seizure med last night but did give her normal sleeping pill.  We did give her 1/2 of a seizure pill this morning.  She is moving her arm like crazy today (which is a good thing).  I haven't seen her move her arm this much or this big for a long, long time.  She moves her arm to sign "more".  The seizure med also helps with spacticity (tight muscles).  I haven't seen the smiles like a was seeing the last few zombie days.  But I'm not complaining.

She seems normal today.

The real question is...since the seizures we were trying to get rid of (the apnea/desaturation spells in the night) are at night, will it really do any good to give her the seizure med in the morning?

She had no desats last night and she had no seizure med last night.  I cannot express how nice it is to be able to sleep through the night and not get up multiple times trying to get your daughter to breathe and turn from blue to regular skin color, not knowing if this might be "it", thinking "what if she doesn't pop out of this one?"  Wondering to yourself..."this is a pretty long one, should we call 911?"  I know it's hard getting up with your baby all night long...but multiply your stress factor by 100 and do it for 2 years straight (babies grow up in a few months) and you might be able to slightly comprehend what we have been dealing with.

Don't misunderstand me...it is hard getting up with your baby.  I get it.  I've done it.  But don't think that you're the only one struggling.  Anyway...I'm not looking for pity or sympathy or anything.  This is just a way for me to vent my feelings and deal with life.

So I really, really, really want the onfi to work and to take away (or significantly diminish) the night-time desats.  That is why I have been willing to go through all of this stuff in the last week...because you have to have hope when you see a glimmer.

Another reason she might be more alert today (and this is my fault) is that she was still getting (until last night) her allergy med at night.  The onfi can interact with antihistamines, estrogen, cold/cough medicines.  I had stopped the allergy med in my head...but hadn't told my new respite worker to stop giving it.  So totally my fault!  Don't you hate those smack your forehead with your palm moments.

We are also moving her estrogen to night instead of morning so that hopefully it won't interact with it too badly.  The main problem is if you are using estrogen for birth control (which we're not---obviously) then it makes it less effective.  It is unknown how the onfi will interfere with the estrogen for the purpose we are using it for.   I guess I should put a call into endocrinology and see what they have to say.  Maybe there is something other than estrogen we can give her to send her in to puberty...but I don't think so.

I spoke with neurology about the antihistimines and the cough/cold meds and the sleeping pill.  The problem with them interacting is that they are all sedating and the seizure med is also sedating.  So they just make it worse.  I don't know what we'll do when she comes down with a cold.  We really rely on Sudafed D and benadryl to get her through without taking her to the hospital.  The neurologist said Sudafed D would probably still be OK because it is a stimulant instead of a depressant.  We'll see.  We can't worry about that now.

I guess we could try a new seizure med or go to the ketogenic (keto) diet...but I think she really likes the onfi.  (Even if it has has been giving me fits instead of her).