The Ups and the Downs

Every baby has them...the ups and the downs.  It just happens that ours are a bit different, but joyful non the less :)

The Ups- Millie had a 30 day PT evaluation and we discovered she went from a 0 month to a 2.5 month!!  How wonderful is that?!  We were elated!! She even surprised her therapist (and us all!) by rolling from her back to her right side!! GO MILLIE!!  

Penn (Millie's daddy) received a very pleasant surprise when the other morning he was talking with her and holding her hand as she was waking up and she turned her head to the LEFT (her non dominant side) and looked at him directly!!! :)  He said his heart leapt for JOY! WOW!  That is HUGE for Mills! 

I have watched her, within the last month, learn to control her head more and strengthen her core....she never ceases to amaze me!  I haven't weighed her but I think she has gained a bit of weight!! Muscle tone as well!! She is really coming along.

Another "up" is watching the boys with her :) They are learning so much about typical babies as well as special babies.  They love holding her, talking to her
and reading to her.  They have started to notice differences about Mill but it doesn't seem to have them concerned, they do what siblings do and love each other no matter what!!

The Downs-  Still changing diapers....ugh.  (WARNING: graphic mental images ahead!!) And her stool is loose...and a LOT...and TOXIC stinky!  I don't know what is going on in that sweet, little body...but good GOD what comes out of it is insane!!  And to be honest, the thought that I don't know how long until she is potty trained scares me sometimes....but I keep the faith that she will be there soon ;)

Another "down" is the whole "home vs. doctor vs. hospital" dance.  She was not feeling well the other evening: fever, high heart rate (like 220s), cough.  But it wasn't a wet cough, in fact it was quite dry.  I mean, typical babies get sick and don't feel well for ALL kinds of reasons.  And we hesitate to take Millie to the ER because the thought of what interventions they will perform frustrates me...will it take a bad situation and make it worse?  Xrays, antibiotics, blood tests, more germs, intubation?  So, we decided to wait and see what the hour held, and thank GOD! she quieted down and ended up having a terrific night!! That would NOT have been the case in the ER.  I am so glad I fought that tiny portion of fear and listened to my overriding "mother's intuition"!!!

Perhaps the most prominent "down" is all the stuff that goes with being atypical.  Millie has SO MANY things going on that it overstimulates ME and completely drains my energy (and unfortunately, sometimes my attitude).  There is no such thing as "me time" LOL!  I spend my days preparing for therapies at the house, driving to other therapies, scheduling appointments and rescheduling appointments, researching information, talking to insurance, home care companies (who are arguing by the way!), nurses and doctors.  Checking on orders and faxes and then rechecking for confirmations on orders and faxes, because if I don't, no one will.  Making formula, meds, beds, diapers, dinner and dishes.  Dealing with "the system" is a full time job in itself!  Then taking care of Millie... and then there are the typical Stay At Home Mom things you get to/need to do...need I say more LOL!  

All in all, I wouldn't trade it for the world!  I recently watched The Best Exotic Marigold Hotel (which I loved!!) and heard something in there that really resonated with me:  "Everything will be all right in the end; if it's not all right, it's not yet the end"  ...and I have no doubt we will be all right...

XOXO Millie and Mom