Who knows.  All I know is my head is rarely connected to my body this week.  Maybe it’s the pile of transition related to do items.  Maybe it’s the stress and pressure of hoping this steroid works as well as we need it to.  Maybe it’s realizing K is having a little bit harder time adjusting than we had hoped.  Maybe it is the news that a Liss twin I’ve been following gained his angel wings earlier this week before he could even celebrate a first birthday.  But reality is really distracting me from the day to day.

There’s no denying I have a lot on my plate.  Next week, in addition to a full-time job and caring for 3 kids, we have multiple medicine adjustments, (adding one and weaning two), home health AM visits on Monday and Thursday, PT and Speech on Tuesday, an appt at the house Tuesday afternoon, and OT on Thursday.

But there’s also no denying that I CAN do what needs done…if I can just focus on the task at hand when I’m doing it.  But instead, no matter what I’m doing I’m worrying about something else.

It’s been a bad combination this week.  There have been multiple missteps.  Including but not limited to late paperwork, a late preschool assignment, and we will be starting a new med one day late because I didn’t get to the pharmacy before 7:00 tonight.

I might just pretend this week didn’t happen, get some re-organized to do lists and goals, and hit the ground running again tomorrow.

All that said – there is a lot going well.

We have had our first discussion and first evaluation with outpatient PT, OT and Speech.  The team is very enthusiastic and was pleasantly surprised with a few things the boys were doing.

We’ve submitted our paperwork for the specialized care division, and are hopeful that good things will come of it.

We have had our initial consult with early intervention, and just yesterday met with the Developmental Specialists.  They were equally as enthusiastic, and seemed thrilled that the boys were doing better than they had expected, and thought we had a great setup for them here at the house.

The boys are handling the steroid well.  They are healthy and happy, both of which were big concerns.  They are also still having spasms, although far less frequently and they are shorter in duration.

Nolan weighed in at over 17 lbs this week.

The boys are getting the hang of eating stage 1 foods.  They eat as much as half a container at a time, mostly at day care during lunch, and sometimes in the evenings if they are alert enough.  They are well on their way to being ready for some ice cream at their birthday party.  😀



They are grasping like champs.


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They are smiling like heroes.


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They are keeping me going, even when I can’t find my head.