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!
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!
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