After a healthy pregnancy,
and natural, uncomplicated delivery,
our sweet, beautiful boy,
John William Stine,
our sweet, beautiful boy,
John William Stine,
lovingly called Liam,
came into the world absolutely perfect
on December
13, 2010,
with his big sister,
McKenna anxiously awaiting his arrival.
He was full-term, and weighed 7 lbs. 9 oz.
He was perfectly healthy, smiled at 7
weeks old,
which lit up our world,
and strongly held his head up like a
champ!!
Around 10 weeks,
he began arching his back alot
and seemed uncomfortable when awake.
He didn't want
to be in a sitting position anymore,
and preferred to be held or paced around the house.
He slept great at night, 5-6
hours straight,
with one middle-of-the-night feeding.
He nursed great, 3-4 oz. every 3 hours.
However, we noticed
that he would cry a lot for about 30-45 minutes
prior to defecating.
He seemed to be in a lot of pain.
We didn't
know if he was milk intolerant,
so we tried one weekend
off breast milk and tried soy formula.
We noticed instant
improvement the next day,
he was so much happier!
But, the old symptoms arose again.
Lots of discomfort while
awake, and lots of arching of his back
including stiffening of his body
resulted in a visit to his pediatrician who said
it was probably reflux and Liam was put on zantac.
This did nothing to help our sweet Liam,
and he was so rigid
that he fought me
when I attempted to sit him on my knee
and bend him over to burp him.
His doctor then tried
Prevacid.
This seemed to help only a little.
On March 8th,
Liam began eating Nutramigen formula,
and had an
abdominal ultrasound
two days later to check for any abnormalites.
He began eating
much less of this formula,
only1-2 oz. and not even at every feeding,
and his symptoms didn't improve.
His ultrasound was clear,
leaving us with
no answer and even more frustrated.
On March 14th,
one day after he turned 3 months old,
he had a full-body
seizure in the bathtub.
I was holding him
and had Daddy record it on my phone,
because I knew when we saw
his doctor,
he wouldn't do it again,
and no one would see
what we witnessed that night.
I talked to his pediatrician
the next day and he immediately
referred us to a neurologist the next day,
and based upon my video, the
neurologist immediately sent us
to Children's Healthcare of Atlanta
for labs and an MRI.
That video probably saved his life.
On March 18th, his MRI
showed massive injury
in almost every portion of his brain.
We were absolutely devastated.
We prayed to God to
place His healing hands upon our sweet boy.
His neurologist thought Liam
likely had mitochondrial disease.
He was admitted,
had numerous blood tests
sent off to a specialty lab in Nevada,
and started seizure medications,
CoQ10, and carnitor.
He became so sedated
on the seizure medications
that he failed to eat from a bottle and had
an NG tube placed.
On April 2,
Liam began an all ketogenic diet
and has tolerated it well.
He spent 3 weeks in the
hospital and finally came home on April 6th!!
We were elated to finally
have him home with all of us,
what a blessing!
He is doing well on the diet,
on all of his medications,
and is still on the feeding tube.
He still has not gained his head control,
but is so much more comfortable
than he was in his second month of life,
and for this we are thankful to God.
His latest EEG showed improvement
in his seizure activity,
due to his seizure medication
and the ketogenic diet!
We pray daily for healing
and a diagnosis to be
made very soon to help
our precious little man.
At 22 weeks,
Liam smiled again and
laughed three times in a row!
We have not seen him smile
since he was 10 weeks old.
You already know
what Michael and I did....yup...
we bawled our eyes out.
Miracles are happening.
We just need a few more.
:)
At 6 months old,
Liam is smiling and laughing everyday!!
His genecist has found
no answers for his cerebral atrophy,
or his seizures.
All tests have been normal.
This is often the case with
kiddos that have infantile spasms.
We see another genecist
who specializes in
metabolic disorders, in August.
Currently, we are just trying
to make the seizures stop,
and he begins therapy July 1,
to help him gain his head control back,
and eat again from a bottle,
and hopefully, get him off the NG tube.
Please continue to pray for our boy!!
At 8 months old,
Liam has been eating
3 out of his 4 meals by mouth!
He's been working really hard
to hold his head up again,
and we'll get there soon!
We do therapy everyday,
lots of stretching to keep him loose,
because he was so tight and rigid
months ago.
We also work with him
to keep him tracking us
from L to R with his eyes and head.
And of course tummy time.
Every baby usually dreads this,
but for Liam, it is especially difficult.
I'm soooo proud of his progress with eating!!
After being admitted to the hospital
again to control these nasty seizures,
he was taken off of Banzel,
increased clonazepam to three times a day,
weaned off of the ketogenic diet and
began ACTH steroid treatment
on August 19th.
He went from over 200 seizures
on August 17,
to only 19 on August 18,
12 on the 20th,
and one so far on August 21st.
His first ACTH injection was on the 20th.
He'll be on this treatment for 4-6 weeks.
Please pray this is his miracle drug!!
Within 10 days,
the seizures stopped completely,
but left Liam totally sedated for 23 hours per day
for 5 weeks straight.
On Oct 2 2011,
he was having shallow, irregular breaths,
and he stopped breathing briefly.
His nurse was at our home
and resusitated him with vigorous stimulation.
His heart was still beating.
An ambulance was called
to transport my angel to the hospital.
That was the longest ride of my life,
he was still breathing,
just very shallow and irregular.
I wanted to jump into the driver seat
and rush my Liam to the ER,
it seemed we were driving so slowly!
In the ER, Liam had blood drawn,
his WBC was high, no other signs of illness,
and he was placed on a bipap machine,
but after 9 hours, while in the PICU,
intubation was needed to help him breathe.
Another MRI was ordered (his 4th),
and it again showed progression
of the cerebral atrophy,
and now it was in his midbrain
and brainstem.
The blood vessels in his brain were expanding.
The PICU doctors did not tell us life expectancy,
but were grim with his prognosis.
We were devastated.
Heartbroken.
We prayed.
Each second of every minute,
we prayed.
We tried to prepare ourselves
to pick a cemetary plot near his grandfather.
I could not breathe for days.
How could I even fathom burying my child?
Should his sister be there?
How could she watch him be lowered into the ground?
I didn't know how to do this.
All I did was pray.
Lord, please help us,
please make Liam stronger
each moment of each day.
We need him here with us.
It can't be his time.
But if it is,
please, please give us peace,
and make his passing peaceful and pain-free.
We discussed his 4 year old big sister,
McKenna's worries and life without her brother
with a wonderful child-life specialist.
McKenna came and visited her brother
3 times and was never fearful.
She was so brave.
When I was home,
I went into his room and kissed his crib sheets
praying for him to come home soon
and not leave us.
We told the doctors
we needed more time for him to heal,
and to not extubate
until it was the absolute time.
We discussed what would happen
if he could not breathe
on his own after extubation;
bipap, reintubation, trach.
After 10 days,
McKenna's brave little brother, Liam,
was extubated
and placed on bipap.
He beat the odds
and did well,
after 2 days went to nasal cannula,
and on October 26th,
was discharged on nothing,
not even oxygen.
HE IS OUR FIGHTER!!!
While hospitalized,
he had a muscle biopsy
which was negative for mito disease.
He also had a buccal swab test,
which showed some abnormalities
with mitochondrial enzymes,
but our doctor doesn't believe
this gives 100% confirmation.
Those are cheek cells,
while the biopsy is muscular cells.
We are still waiting for the mtdna test.
His chromosomal microarray is negative,
and every other test is normal.
She is certain an in-utero stroke
or injury did NOT occur
because that would have only shown
on the first MRI,
not progressively worsen with each MRI.
So, yes, we still have no answers.
He came home eating Pediasure by the NG tube
and after a few days,
was having some difficulty tolerating feeds
since the PICU stay.
I believe it is ACTH-related.
Many children have difficulty eating
after finishing the therapy.
He is in grave danger
of aspirating the vomit
that he is doing once daily.
He is scheduled to get a gtube soon
with a fundoplication.
This is the wrapping
of the sides of the stomach
around the bottom of the esophagu
s to reduce reflux and vomiting.
We are praying this solves
Liam's current battles
and will of course,
remove the NG tube taped to his face.
Liam still remains seizure-free at this time (Nov 2011).
Liam is our fighting miracle!!!
Please pray for him!!
As of January 2012,
Liam is doing well with his gtube.
The surgery in December2011
was very smooth!
They extubated after surgery,
but Liam wasn't strong enough
to breathe on his own, so he was reintubated.
The doctors in the PICU
extubated the next day
and he did great
on a nasal cannula for 12 hours.
That night, however,
he held his breath so extensively,
the doctor on that shift
reintubated him to assist.
After 48 hours,
Liam had enough
and coughed OUT the tube!
He is such a stinker!!
Liam will show them who's boss!!
He did great on bipap after that stunt,
then nasal cannula.
Once again,
he was discharged with no problems
and needed no assistance
with which to go home.
Liam will have his PEG tube changed
to a Mic-Key button
after 3-4 months post-op.
He also had a skin biopsy
at the time of the gtube surgery
to again either rule out
or confirm mitochondrial disease.
He has resumed physical therapy again
in mid January,
after having a 5-month long hiatus.
He is doing VERY WELL!
After all the lying almost unconscious
for 5 weeks because
of the ACTH treatment,
and multiple hospital stays,
he was very weak.
However,
after one day of our wonderful
physical therapist coming to our home,
he is making purposeful movements,
trying to track objects again,
and turning and lifting his head.
Please pray for complete healing,
more strength,
laugh.
Within 10 days,
the seizures stopped completely,
but left Liam totally sedated for 23 hours per day
for 5 weeks straight.
On Oct 2 2011,
he was having shallow, irregular breaths,
and he stopped breathing briefly.
His nurse was at our home
and resusitated him with vigorous stimulation.
His heart was still beating.
An ambulance was called
to transport my angel to the hospital.
That was the longest ride of my life,
he was still breathing,
just very shallow and irregular.
I wanted to jump into the driver seat
and rush my Liam to the ER,
it seemed we were driving so slowly!
In the ER, Liam had blood drawn,
his WBC was high, no other signs of illness,
and he was placed on a bipap machine,
but after 9 hours, while in the PICU,
intubation was needed to help him breathe.
Another MRI was ordered (his 4th),
and it again showed progression
of the cerebral atrophy,
and now it was in his midbrain
and brainstem.
The blood vessels in his brain were expanding.
The PICU doctors did not tell us life expectancy,
but were grim with his prognosis.
We were devastated.
Heartbroken.
We prayed.
Each second of every minute,
we prayed.
We tried to prepare ourselves
to pick a cemetary plot near his grandfather.
I could not breathe for days.
How could I even fathom burying my child?
Should his sister be there?
How could she watch him be lowered into the ground?
I didn't know how to do this.
All I did was pray.
Lord, please help us,
please make Liam stronger
each moment of each day.
We need him here with us.
It can't be his time.
But if it is,
please, please give us peace,
and make his passing peaceful and pain-free.
We discussed his 4 year old big sister,
McKenna's worries and life without her brother
with a wonderful child-life specialist.
McKenna came and visited her brother
3 times and was never fearful.
She was so brave.
When I was home,
I went into his room and kissed his crib sheets
praying for him to come home soon
and not leave us.
We told the doctors
we needed more time for him to heal,
and to not extubate
until it was the absolute time.
We discussed what would happen
if he could not breathe
on his own after extubation;
bipap, reintubation, trach.
After 10 days,
McKenna's brave little brother, Liam,
was extubated
and placed on bipap.
He beat the odds
and did well,
after 2 days went to nasal cannula,
and on October 26th,
was discharged on nothing,
not even oxygen.
HE IS OUR FIGHTER!!!
While hospitalized,
he had a muscle biopsy
which was negative for mito disease.
He also had a buccal swab test,
which showed some abnormalities
with mitochondrial enzymes,
but our doctor doesn't believe
this gives 100% confirmation.
Those are cheek cells,
while the biopsy is muscular cells.
We are still waiting for the mtdna test.
His chromosomal microarray is negative,
and every other test is normal.
She is certain an in-utero stroke
or injury did NOT occur
because that would have only shown
on the first MRI,
not progressively worsen with each MRI.
So, yes, we still have no answers.
He came home eating Pediasure by the NG tube
and after a few days,
was having some difficulty tolerating feeds
since the PICU stay.
I believe it is ACTH-related.
Many children have difficulty eating
after finishing the therapy.
He is in grave danger
of aspirating the vomit
that he is doing once daily.
He is scheduled to get a gtube soon
with a fundoplication.
This is the wrapping
of the sides of the stomach
around the bottom of the esophagu
s to reduce reflux and vomiting.
We are praying this solves
Liam's current battles
and will of course,
remove the NG tube taped to his face.
Liam still remains seizure-free at this time (Nov 2011).
Liam is our fighting miracle!!!
Please pray for him!!
As of January 2012,
Liam is doing well with his gtube.
The surgery in December2011
was very smooth!
They extubated after surgery,
but Liam wasn't strong enough
to breathe on his own, so he was reintubated.
The doctors in the PICU
extubated the next day
and he did great
on a nasal cannula for 12 hours.
That night, however,
he held his breath so extensively,
the doctor on that shift
reintubated him to assist.
After 48 hours,
Liam had enough
and coughed OUT the tube!
He is such a stinker!!
Liam will show them who's boss!!
He did great on bipap after that stunt,
then nasal cannula.
Once again,
he was discharged with no problems
and needed no assistance
with which to go home.
Liam will have his PEG tube changed
to a Mic-Key button
after 3-4 months post-op.
He also had a skin biopsy
at the time of the gtube surgery
to again either rule out
or confirm mitochondrial disease.
He has resumed physical therapy again
in mid January,
after having a 5-month long hiatus.
He is doing VERY WELL!
After all the lying almost unconscious
for 5 weeks because
of the ACTH treatment,
and multiple hospital stays,
he was very weak.
However,
after one day of our wonderful
physical therapist coming to our home,
he is making purposeful movements,
trying to track objects again,
and turning and lifting his head.
Please pray for complete healing,
more strength,
laugh.
Please pray for our sweet warrior!!!
Courage*Joy*Strength
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