WATER! It's a miracle worker!!

I've mentioned before that Millie has a history of a high heart rate.  Well, she was not feeling too well last week with a fever and pretty high heart rate which lasted all week.  Come Saturday morning at 6A I was talking with our night nurse and she mentioned the lowest Millie's heart rate got was in the 190's, NOT good.  So, unfortunately I threw up my hands in despair and said "Time to go to the ER,"  while praying NOT to, since my experiences with the ER have been less than great.  

Penn had to run to get his guys out on a few jobs so he said "Give me a hour," and when he was able to get home I would head to Vandy.  It was about 6:20A and I was about to give Millie her meds and thought "I don't want to give them to her on an empty stomach" (as she is OFF her night time feeding machine!! GO MILL!!) so I gave her 2 oz of water with her meds...and her heart rate DROPPED by nearly 60BPM very quickly!!!

Then it hit me!! We only use 240mls, or 8 oz, of water in her formula!! That is WAY under par for a child her age!!  And what makes it worse is that her seizure meds require EXTRA water as well as the med we give her to flush out kidney stones from the seizure meds and diet (which says on the warning label to consume extra water)!!  AS WELL, she has had loose stools for a while (yeah, remember that last post?!) so that dehydrates her as well!  

Now yes, I had mommy guilt when I realized all of this and can't believe I did not thinking of it sooner.... But the real kicker is NO ONE along the way asked or mentioned extra water!!  Not doctors or nurses in the ER, the hospital or at our pediatricians office, no one!   And remember that 7 hour ER stay for nothing...I just wonder if extra water could have prevented that!   

Needless to say, now that she is getting adequate water intake her heart rate is down to a normal range and I am SO thankful!!  Thankful we did not go to the ER that day, thankful I listened to my "inner self" and thankful to have Millie (as always!!)!

As for the ketogenic diet, we are going to look at that this week.  As I mentioned we took her off her night time feed as she is still not producing large ketones and part of the problem might have been the formula separating in the bag over night, that it threw off the ratios.  I will be checking blood ketones again soon to see if removing the night time helps.  I was also recommended a supplement called DMG, or Dimethylgylcine, which is supposed to work very well for those with ADHD, on the Autism spectrum and those with epilepsy ..so I'm really looking forward to seeing how that works! If any one out there has experience (or knows someone who has had experience) with it I would LOVE to hear some feedback!!!

our pretty bathing suit!!

It also happens I met a mom this weekend at a bake sale for an epileptic foundation and we got to talking (SIDE NOTE: her son did not start having seizures until after a typical and age-appropriate round of immunizations...)but they tried the keto diet for about a year and a half and she said he had low muscle tone and once he started eating solids she merged him off the diet and saw a wonderful response!!  I have heard a few stories like this now so am eager to see if we can get those large ketones producing.  Obviously I would LOVE to control seizures with only her diet but if it's not working I would rather her eat whole, nutrient rich foods to help her body flourish and do it's job as effectively as possible.

Safari Baby!!

I HATE that I can never get the stinking pictures symmetrical!!   Anyway....

I appreciate all the well wishes!!  Millie is really coming along and I am looking forward to her sitting up some very soon!!

XOXO Millie and Mom

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