It has been a few weeks since Noah has been in remission, and it’s like I have a different baby!! When those blasts went away, he finally started hitting developmental milestones.  All at once.  He caught up!  After starting out almost silent for the first months, I think he might now rival Calvin for being the noisiest boy! He has energy!  Previously he slept so solidly all night, he had me worried.  Now he has stamina to be obnoxious in the middle of the night.  I never thought I’d be thankful for a wakeful baby at 3am!!

This week I was working on all Noah’s appointments.  He will be visiting many doctors in the next several weeks.  Hem/Onc, GI, Pulmonology, Cardiology(hopefully the last one), Audiology, Neuro-Ophthalmology, well baby check with the pediatrician, and a a care coordinator who I am hoping will help make these appointments clustered.  Oofda.

I keep waiting for my older boys to start asking questions, but for them it just “is.”  We have a children’s book that is written specifically for siblings of Down Syndrome kids, and it explains what it is and what it means for our family and their little lives.  The boys don’t care.  They are so engrossed in their own little worlds of paper-folding, lego building, pretend ninja-fireman-skateboarder guy playing.  I suppose it will be something that they will understand more as they and Noah grow up.  There is some jealousy surrounding when we go to Rochester, but Grandma is amazing at distraction and slight of hand.

We all have had 2 rounds of colds in the last month.  Thankfully, Noah only got the sniffles for a couple days when everyone else had fevers and colds.  Amazing.  His ability to produce white blood cells was down at that time!  This more recent cold has been affecting him for over week now, but still no fevers!

With this cold, Noah revealed a new factoid about himself.  He has Nystagmus, which means his little eyeballs shake- especially pronounced when he is tired or sick.  After talking with his pediatrician and sending a video to his Neurologist, they say it’s probably not a big deal but now has an appointment with a Neuro-Opthamologist.  Another doctor’s card to add to the stack, and another appointment on the calendar.

Today- Noah snuggles in the carrier while I work in the kitchen.  We both love the snuggle until he falls asleep, and I dutifully have to lay him down and plug him in to oxygen.   This always stings.  I took for granted my babies who snuggled into my chest in a carrier while napping all over home and town, and occasionally I would even complain about the backache.  I wish Noah could have the benefit of snuggling and napping with his momma.  I shed a tear, (and mentally stamp my feet and throw a pity-party-tantrum), and put down and plug in the baby.  I turn around and pour into another boy.

Just 2 weeks until the election.  There have been lies going around about Dave, and at the same time his opponent’s less than loveable words have been glossed over and excused.  It is easy to get upset, but remembering “For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. -Eph 6:12, And to put on that spiritual armor so I can be “strong in the Lord.”
A prayer I’ve been praying lately has been for truth to be made known, in spite of what they may read.  Praying for many to be compelled to help, and for the Right voters to show up on election day.

God’s Will be done.

Turn down your volume.  He is shouty.