Gratitude.

This Thanksgiving, I'm abundantly thankful to God that my angel is still here, with us, full of breaths and a beating heart. On October 2, he stopped breathing. His nurse was here to do the weekly blood pressure check, and vitals check. Liam had one more ACTH injection left before ending the treatment. He had been asleep 22-23 hours a day for 5 weeks. An unusual side effect. He was lying in his crib when he coughed and failed to regain a breath. She had to stimulate him with vigorous rubbing to revive him. She got him back without CPR. But we called 911 anyway. I was a bawling mess thinking this was it, we were losing Liam. The paramedics gave him oxygen and didn't need to intubate him. McKenna was so brave and stayed in the living room with grandma. Our wonderful neighbor Beverly offered to bring McKenna over to play with her kids so she didn't see anything. But McKenna wanted to stay with her brother. I rode with Liam while Michael followed. That was the longest ride of my life. The driver didn't drive fast enough, didn't swerve around enough people, didn't plow through lights, didn't fly down the interstate. I was livid and wanted to drive to get Liam to the hospital faster. He was breathing ok in the back, just shallow and irregular. I had to explain his diagnosis, to people who didn't know what it was. Just our luck. But he was breathing. In the ER, he had a low WBC count, got antibiotics and was on a bipap machine. The dr didn't want to intubate until he felt he had to, because he didn't know how well Liam would extubate, if at all. He was so weak. Hours later, he was transferred to the PICU. He was still on bipap that night. At 1 am, he was struggling, so he was intubated. He had an MRI, showing more progression of the atrophy, and now it was in his midbrain and brainstem. The vessels were expanding. We were told this was grim but did not tell us his life expectancy. Because noone knows. We were told he has been asleep, unable to open his eyes, the last few weeks because of this atrophy. Michael and I discussed his funeral. We needed to go pick a plot for him. A plot near his grandfather. I wanted a space where he could watch the sun rise and set. A space near the pond where the ducks and geese play and splash so when we visited him with McKenna, she could have fun and not be scared. We talked with the best child life specialist in the world. She helped us cope with telling McKenna that Liam was very ill and we were worried about him. She came to visit him 3 times. She came when the hospital was doing fun things downstairs, like painting,and other fun Halloween stuff. We tried to make the hospital a fun place, not a frightening place, in case she needed to come one day. The hospital was helping Liam not hurting him. While intubated, Liam had a muscle biopsy, which has yielded negative results for mito disease. One week later, it was time to extubate, he had fought the infection, perhaps upper respiratory, and it was time. We'd discussed reintubation, dnr, trach, if Liam struggled. Michael was all for a trach because his father had one and lived a good life afterward. I was against it. It was different this time, with Liam. His brain was deteriorating. If Liam was to continue to lie in a bed and not wake up, not move, not eat, I didn't want to keep him alive, ventilated, for the remainder of his short life, struggling. I was at peace to let him go. I didn't need him to fight for me. I knew he was tired. But, I didn't know how to get up one morning, dress in black, and hold my daughter's hand as we walked into a funeral home. I didn't know if a viewing would ultimately scare McKenna. I didn't know if sitting graveside was something she should be present for. If seeing her brother lowered into the ground was something she should bear. I didn't want to walk down the hallway and pass his room. Empty. Or get into the car and see the seat vacant. Without his carseat. I didn't want to never see his face again. His absolutely beautiful face. His perfect face. I'd miss his warm snuggles. His little fingers and toes. couldn't get it all out of my mind. I couldn't breathe. My heart raced.

But Liam made me erase all of it. He fought on. He did well on bipap for 3 days, then nasal cannula for 3 days. He started to open his eyes. Then he was breathing on his own, with no oxygen at all. The Lord had him in the palm of His hand. Liam was my warrior, and will be for eternity. He was discharged on October 26, with no assistance of any kind. He has an apnea monitor while he sleeps that will alarm if he holds his breath for too long or has an unusual heart rate. The battle we have been facing while home is tolerating his feeds. He was discharged on continuous feeds via NJ tube. He's had the NG for many months, going straight into his stomach, and never spitup or vomited. Then after one day vomiting in the PICU, they tried NJ, having the nasal tube going into the intestines, to bypass the stomach, keeping food down. Well, while that worked, he was miserable, crying alot, horrible gas and stiffening his body, not relaxing. We saw his GI and I said to try NG again, since he's done that for months. He agreed. He was much more comfortable now. We switched to pediasure, a high calorie drink for older children, McKenna's had the chocolate ones! He has vanilla, and we could feed him over a shorter time frame, not the continuous 18 HR feedings. We slowly increased the rate and gave him bigger breaks to digest the food. Now, he only vomits once in the evening. But this has to stop, because he won't gain weight if this continues, and he will damage his esophagus. It's not easy for him to vomit, with the lack of head control, we have to sit him up more than he was while feeding, and make sure he doesn't breathe in the contents. It is so difficult for him. So, he will have the surgery to place a gtube and get a fundoplication as well. This is the wrapping of the sides of the top of the stomach, or fundus, around the esophagus so food is unable to come back up. It helps with severe reflux and vomiting. The NG tube will be gone, it's really been in long enough. We were about to remove it prior to ACTH when he was eating so well by mouth, but we had to start that treatment to diminish the seizures. So, the gtube is a tube on the side of Liam's body, directly into the stomach. All food and meds will go into it. And we'll get that tape off his Beautiful face. :)
On another note,
We had a fun Halloween, trunk or treating at McKenna's school! We were a superhero family, of course, since Liam is our little superman. It was fun letting her run around with friends getting candy. She's loving her school, her teacher, her new friends. She comes home and shows us all her artwork, tells us what she learned, sings us new songs. She even won the art award!! I seriously could not be prouder. Of both my babies. Thanksgiving was quiet and calm and we're so excited for Christmas. All the decor has been up for maybe 2 weeks now. :)
The past few days, Liam has been holding his breath while crying and angry, like when awaking from a nap. I've had to put my mouth directly onto his and give him a big breath to get him to continue to breathe. I'm praying this is not our new normal. I still can't get a funeral out of my mind. I hope he helps me again, and fights to get that image out of my mind. I'm nervous about extubation again, he's way more alert now then he was previously, but still nervous. He will be in the PICU post surgery because of his history. Thank the Lord!! We know all those nurses. The absolute best nurses in the world. They're like family now. They adore Liam. So, please pray that the surgery and recovery go well and he will come home soon thereafter, and this will eradicate the vomiting. We need my happy smiling boy back. It's been 3 months. :( thank you my prayer warriors!!
With much love,
Sasha

Healing.

I probably have never been

so excited, 

except for the days

my babies came into this world.

Here,

it is....

Liam had his EEG yesterday,

after 2 weeks of being on

the powerful steroid ACTH,

to help stop the seizures 

and try to get rid of the 

hyppsarrythmia chaotic pattern

of brain wave,

that makes it impossible

for him to develop.

He has been seizure-free

for over one week.

The EEG showed

a normal sleeping baby.

NOOOO

HYPPSARRYTHMIA!!!!

I could burst into tears 

with pure

EXCITEMENT.

And all I can do

is thank the Lord above

and everyone who prayed for our 

ANGEL.

It's His pure glory and mercy

healing my boy.

This is a picture of Mr. Snoozyhead,

day 8 of ACTH.

Today is day 14, 

and we start to wean him

off of the ACTH.

Please pray for the seizures 

to continue to stay away 

during the wean,

and for sweet Liam 

to awaken more 

and allow therapy to help him

develop again. 

On another note,

McKenna started Pre-K this week!!

Holy cow, how time has flown by!

She's just so big. 

All morning she was rushing me

to get to school.

After she crawled into my bed,

at 7:00,

I put on Peppa Pig for her,

while I changed my clothes.

I came out into my bedroom and

said "It's your first day of school!, 

you want some breakfast?"

"Yay, can I have a bagel?" 

she asked.

"Sure thing baby, let's go into the

living room!"

I made her some breakfast,

and she played watching ol Peppa

while I made up Liam's meds.

I gave them while he slept,

then we changed her clothes.

She was so excited to pick her outfit

for school.

I picked up Liam to give him his ACTH,

then handed him over to Grandma

while I put McKenna's hair into 

a ponytail. :)

She said, "C'mon Mommy!!!

We're gonna be late!!"

"Honey, we're fine, we're gonna be

early."

I started Liam's feeding,

and out we went.

I took a few pictures before

we got into the car.

She had to take a picture

with Liam and Grandma.

 My big girl just so excited!

 Climbing in.

 C'Mon mommy!!!!

 Bustin' a move in the parking lot.

We were 30 minutes early.

Hahaha. 

:)

 She's just gonna burst.

 McKenna smiling away

with her super sweet teacher,

Mrs. Cavanaugh!

This is the same teacher,

my dear friend, Amanda's

son, Manning had last year.

She's an awesome teacher!!!

 Gotta take a picture with Mommy!!

 She found her name!!

I love this picture.

Here she is on her second

day of school.

Still excited!! 

 and 

her third day.

:)

The Lord works in mysterious ways.

At Pre-K open house,

we met the parents of 

a classmate of McKenna named Isabella.

She also had seizures as a child.

Her parents were very comforting

when we talked about Liam.

They prayed for us,

and today Isabella is a thriving

little girl in McKenna's class.

Yup,

we were meant to attend this school.

Please continue to pray for my angel

warrior!!

And please pray for a wonderful year

for McKenna

and peace and healing for all of us.

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!