Still Waiting

I am not a huge fan of waiting...that's pretty much been true my whole life and now it's not changed too much.  I'm getting a little better at it, but I don't like it.  Right now I feel like we are doing lots of waiting, waiting for calls from the kids' PCM so we can schedule/authorize an ABR (as requested by her neurologist and audiologist...but they are done on base so we have to go through this way), waiting to get an appointment for Josh so we can get new referrals for allergy and dermatology.  His poor skin - it is starting to get bad again, it hurts me to just look at it.  I don't know what else we can do at home right now, I feel like there's something else going on; maybe there's something new in the air?  I have no real idea, I'm afraid we are going to need to change his medicine up a bit, or worse need to retest allergies and I'm afraid I'm gonna have to get pushy because I'm not going to go through this again with him for another year or two unless we have exhausted every possibility.  We're waiting for the PCM to get the blood tests script from the geneticist so that we can have Addy's blood drawn and get that critical sample.  Her blood levels in the morning are still a bit low.  Sunday it was pretty good, in the 70s.  She had a milkshake from McDonald's right before bed and went to bed almost 2 hours late (Give Parents a Break).  Then Monday she was at 62.  Last night she had a cheese stick right before bed and some juice, it was 45 this morning.  45 is not good - it is way too low.  I feel like an awful mom because I forgot to put the corn starch in some milk before she went to bed.  I forgot to give Josh part of his medicine routine too.  I think I need a list...I remembered lotion/ointments for Josh but not the other stuff. 
Yesterday we had 5 appointments - well at just 2 places but still 5 between the 3 of the kids.  Both Josh and Addy had follow ups with ENT - they are doing great.  Then everyone had dentist appointments.  I wasn't sure how they were going to do Addison's appointment.  I was surprised in a good way.  We see a pediatric dentist for the kids here, and I am glad we do.  He had me hold her chest to chest and then lean her back while he looked and counted and made notes.  She even got fluoride painted on her teeth and a new toothbrush.  She definitely has an under bite - guess at 7 we should probably start treatment for that.  He was very thorough taking her medical history, too.  When I was explaining the hearing loss and microcephaly he asked if they were able to determine a syndrome because knowing that is helpful as some syndromes have dental concerns.  He just seemed to be completely comfortable with all the medical things.  Asked about seizures and if there was anything else that may help him treat her.
Anyway, we stopped for lunch and some play time between visits at McDonald's.  Addison had eaten all morning before we left; seriously she had a bowl of grapes, a whole apple, a banana, and a small bowl of cereal.  She didn't get a snack at the ENT office but I wasn't too surprised.  By the time we got to McDonald's she was all out of sorts.  She was upset and not happy.  She just wasn't herself at all.  She looked a bit paler, she was fussy, wanting held, trying to get down, didn't seem to want to put weight on one leg as much, just odd behaviors.  After she had about half her juice box, which took some convincing, she was back to herself.   I wish I would have had her blood sugar test kit.  I am curious as to what it was, if that was the cause of the odd behavior - those are some of the symptoms of low sugar.  Guess we'll carry it from now and make sure we have juice boxes or something with quick sugar tucked in the van and diaper bag. Once we get the blood work back that the endocrinologist wants and if it happens again and her morning levels are on the lower end, I may call and see about a follow-up sooner to discuss the nutrition side of things...make sure we know exactly what types of food are best for her to eat to help sustain a higher blood sugar...but for now we're waiting.
And waiting and waiting....and I'm trying very hard to remember that it's okay to wait and I shouldn't get restless while we wait.  I'm leaning on this verse this week; Psalm 46:10  "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth."