A New Path.

As most of you know, 

Liam The Brave has been 

admitted at CHOA 

at Scottish Rite.
Since the increase

in his new seizure medication,

called Banzel,

things went crazy.

After the increase last Thursday,

his seizures increased,

were faster and more violent,

and more numerous in each cluster.

He had 46 seizures Friday, 50 Saturday,

74 Sunday, 76 Monday, 125 Tuesday,

and Wednesday over 200.

I called his neuro almost daily to update him,

and Wednesday morning,

he called to tell us to go to the hospital

to get a 24-hour EEG.

We hopped in the car, and went.

Thank God Michael was already off from work!

He was given ativan to stop a 30-minute

seizure that had over 100 seizures.

He was taken off of the Banzel,

increased the seizure medicine 

he takes at night while he sleeps,

and now takes that 3 times a day.

He began weaning off of the 

ketogenic diet

in order to begin the 

ACTH steroid treatment.

This is the #1 treatment for 

infantile spasms.

He has been the miracle drug for countless

children!

It is meant to stop the seizures

and get rid of the hyppsarrythmia pattern 

seen on the EEG.

Once these 2 things stop,

he can continue to develop!

The only reason he didn't begin

with this treatment

was because of the suspected mito disease

and it would be unsafe.

Well, since his genetic testing

 came back normal,

his neurologist,

metabolic specialist,

and epileptologist

all agreed it was time to bite the bullet.

His MRI still shows the cerebral atrophy,

but it has not progressed as rapidly 

as it did from the MRI in March 

and the one in May.

Somehow,

it has slowed from May until now.

His metabolic specialist has more labs

pending, they were just sent off

on Monday. 

So hopefully, 

those will yield some answers

in the meantime of trying

to control these seizures.

So, again, 

on Wednesday he over 200 seizures,

and that night all of his meds were changed.

Thursday, he had 19 seizures,

Friday he had 12,

and today, Saturday, only one so far. 

It's 3:36 pm. 

His first ACTH injection was Friday.

We were discharged from the hospital

today at 12:00!

Talk about a drastic change!!

He will be on the steroid treatment

for one month.

In 2 weeks, we go in for another EEG

to see if the ACTH has 

knocked out the hyppsarrythmia.

PLEASE pray that it does!!!

He's eating breastmilk I've had frozen,

since it's good for at least 6 months,

and also Good Start Formula

when that runs out.

So, if you see coupons for that,

send them our way!

Hahaha!

Snoozing after his MRI.

He's such a rockstar!

Sissy visiting!

I tried to get a picture of all

the smiling and laughing 

he was doing ALL DAY

long yesterday,

this is the best my phone 

would capture!

Still smiling and laughing

after getting his first ACTH injection!

Now that's a rockstar!

Our angel is 8 Months old!!

Liam is 8 months old!!!

Here's a bunch of awesome 

pictures from that

photoshoot when

Liam was 6.5 months old.

I'm awaiting the cd, 

so these may be a little out of focus,

because I copied them off Angelica's site.

She spoke so dearly

 of our wonderful family. 

Thank you again,

dear Angelica,

for taking such beautiful

pictures of our family

to treasure for eternity!

 McKenna always smelling her lil bro!

 Snuggling the boy!

 I just adore McKenna's smile here.

So beautiful!

 Daddy is so crazy.

Thank goodness he makes us all laugh!

 Smooches for my angel!

Our dear babe.

Daddy and his girl.

Sweet kisses for my princess!

 I LOOOOOVE this series

of me and my girl!

Snuggly girl.

sweet embrace!

So, here we are at 8 months!!
Liam is doing ok.
I really wish I could say he was doing great!!
The thing he is excelling at right now is eating.
This is really fantastic!!
For the last few days,
he has been eating 8-12 ounces per day.
That's usually 3 out of 4 of his meals. 
The only thing I've been using 
his NG for are his meds.
I'm not going to mix them with 
his food until he's perfected
that step. Plus, they may taste bad,
and make the formula taste bad.
Don't want to backpeddle!!
So, he's been eating great 
in the morning and afternoon!
 Usually, 
he's asleep by the time is nightly feeding 
is due, so that one is by tube while he sleeps.
We'll get that feeding by mouth soon.
I'm elated at his progress!
Unfortunately,
his seizures are still crazy.
They average 20-40 a day.
He is on Banzel right now, 
and not working, obviously.
It aggravates his acid reflux also.
So therapy has been tough to do.
His PT is pleased with his progress
though, and told me to focus
on stretching and trying to keep his muscles
loose during this period, while he's 
rather irritable, to prevent movement issues.
When we get his seizures under better control,
we'll proceed with more strenuous therapy.
I'm pushing for the ACTH steroid therapy.
This is the #1 frontline therapy for IS,
infantile spasms.
Liam was started on the #2 frontline therapy,
the anticonvulsant, vigabatrin,
because it was suspected he may have
PDH,
or pyruvate dehydrogenase deficiency,
which is a disorder in the family of mito diseases.
This made doing ACTH unsafe for Liam.
We saw Dr. Kendall, 
the mito and metabolic specialist,
this week, and she's repeating 
the PDH level to see where they are.
One day before Liam 
was discharged from the hospital,
the level had dropped, but she stated
they were still abnormal.
So, we need to see where they are 
so we can HOPEFULLY
proceed with ACTH.
I'm really praying
we can begin this and 
praying it will be his miracle drug.
Please pray with me for this.
Please pray my sweet boy gets some relief soon.
It's really just heartbreaking.
3 children went to hold God's hand
this week.
One boy, Ethan, from cancer,
one 7-month old girl, Ruby, from liver failure,
and dear Joseph,
a sweet boy in my IS group,
who turned 19-months old
the day a seizure took his life while he slept.
Needless to say, 
I'm absolutely terrified of this happening to us.
Please pray for comfort and strength 
for these families,
and for all families who battle illnesses.
Please pray for my little man.
We love you all!

My Brave warrior!

I adore his curious expression!

Be Gone NG, Be Gone!!

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!!!