The last 2 weeks,
I've been getting Liam
more familiar
with his mouth
and
massaging his gums
and all around his mouth
to stimulate all those
muscles that work
to help one chew or drink.
He started by sucking
my finger that was dipped in
his yummy, fatty formula!
Then, we moved up to
filling the nipple
of a bottle, which holds
about 10 mL.
I chose to do it this way
so I could see if he was, in fact,
sucking well and swallowing.
That's hard to see when
the bottle is attached to the
nipple.
Well, he did so great with the 10 mL!
Just look at the seal around
that nipple he's making!
He was just sucking away!
So, yesterday, I let him eat
as much as he wanted!
He just kept on chowing down,
he ate 2 oz, or 60 mL!
For each feeding,
he normally gets 3 oz, or 90 mL
by the NG tube,
so the fact that he just ate 2/3 of
a normal feeding
was INCREDIBLE!!!
And, he ate it in about 30 minutes,
with no problems!
I was mystified!
Of course,
last night around 3 am,
I hear him crying,
go into his room,
and he's pulled out his tube!
That's never happened at night!
YIKES!!!
Thank goodness, he doesn't
get night feedings.
But, I was super nervous about how
the morning meds and feedings
were going to go.
He woke up at 9:45,
I had his meds mixed and ready,
all 5 of them,
and started him out with a taste
of the formula to see if he
was awake enough, which he was.
I thought I'd "chase" each med
with some formula,
just in case they tasted bad.
That went great!
He did perfectly, and each med
didn't seem to taste bad.
So, he then finished his
breakfast, all 80 mL, just 10 mL
shy of a normal feeding!
And, he did great 4 hours later,
for lunch, he ate 85 mL!
He's doing so great!
I still am going to try to put
the tube in, just in case,
but will continue to do as much by mouth
as the little lad desires,
and Lord willing,
he'll be off that tube forever!
So, please pray for that!
Just chilling out
watching Lord of the Rings
with Daddy!
Aww, my cute boys!
Watching Lord of the Rings
with sissy
in his therapy chair!
At the beginning of sitting in this chair,
he'd tolerate about 5 minutes.
Well, I don't know if it was the movie,
but that boy sat in that thing
for 45 minutes!
The idea is to strengthen his
neck muscles to give him
better head control,
and enable him to
track toys or us from
left to right,
moving his head from
side to side.
He's doing great!
Even his physical therapist was
impressed with his progress!
Maybe 2 weeks before,
he kept his head looking to the right,
and now he keeps it center!
I just had to take a picture of
McKenna's first braided piggies!
So beautiful!!
This is McKenna's best drawing to date!
Holding Liam, with strawberry plants
and a blueberry tree with an owl hole!
How cool!!
Look, she even has brown eyes,
and Liam has blue!
On Saturday,
McKenna and I got Liam to hold
her playfood, banana and carrot
for a good 10 minutes or more!
All those hand stretches
have made such a difference!
See how much more open his
hands are!
Only a very few times has he
held them in a tight fist,
usually they are open,
sometimes more than this picture!
Holding the naner and carrot!
And his arch nemesis!
The dreaded tummy time.
He usually tolerates about 5-6 mintues
of it, but 2 nights ago,
he may have tolerated more,
if we didn't have to start his feeding,
and roll him over for it.
He's working so hard!
Sissy reading him a story,
in the pillow fort she built around him.
So funny!
My sweet babies!!
Loves of my life!
Doesn't every little 4~year old girl
eat yogurt like this??
Best baby toes ever!!
Please continue to pray for our angel warrior!
He's doing so well with all of his
physical therapy and eating!
We still haven't seen a great improvement
with the decline in seizures.
He's been on the new medication
for 1.5 weeks, and is one week
away from weaning off the original med
that has failed to keep working.
Please pray after the wean,
that the new drug will work for him!
Thank you all so much!!!
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