Infantile Spasms

It's been a long day. It's been a long week. It's been a long month.
Liam had his appointment today with his Neurologist.
We were going to talk about Liams EEG test from last week.
His neurologist suspected that Liam was suffering from a rare case (as if everything he has dealt with wasn't rare enough) of epilepsy seen in infants that begin after 3 months of age.
Liam has what is called "Infantile Spasms" or West Syndrome.

These "seizures" are treated different than others.
Liam will be treated with a steroid.
We don't exactly know what the future holds for this little guy.
We won't know if the steroid will work for him as well as it may work for another child.
There are other kinds of medication, his Dr. just decided to go towards this one first.
We don't know what the long term damage will be until it (may) happens.
The good thing is that his condition is being treated because it was caught pretty early.
The only thing we do know is that Liam will have developmental impairment.

Liam will take longer than we thought he would to be able to do things.
That doesn't matter to us.
What matters is that the little guy is in no pain and happier than he already is.
We don't know how much this will damage him in any way.
All we can do for the little guy is make him as comfortable as we can.

He did not enjoy getting his vitals checked. I don't blame him.
Liam will be having another EEG test done in a couple of weeks and he will have a follow up appointment with his neurologist in about a month.
We are also trying to get a hold of his neurosurgeon.
Liam's head has grown once again and they don't know what the problem is.
He may be getting a CT Scan or MRI done soon.
Check back for more updates.

I should also mention he is trying to break 4 top teeth at once. Strong little man.

EEG Testing

Liam was still having seizures a while back and is still having them.
After sending in the video of a couple of Liams seizures the Dr. emailed me saying that Liam was having a rare case of seizures that is often seen in infants called "Infantile Spasms" but wanted to make sure by testing him.
So today we went in to test Liam at our local hospital.
They asked us like in every Dr.s appointment to feed him and make sure that he was tired so that he actually took a nap through the test.
We know our son so we didn't stop his routine.
He is a great  baby and naps as long as it is quite.
He did great until they actually scrubbed his head.
I didn't like that either but I was glad it was over for him.
At least that test.
Here are some pics.
There are lights on in the pictures but they were really turned off the entire test. We sat there in the dark and quite. He had a couple of seizures during the 30 minutes that he was tested. Which I prayed would happen so they can see and find a cure.

 It didn't take very long for him to starting nodding off...

 No worries, that is not blood. It's just where they mark where the wires will be pasted to him.

 Such a good little man...

 So many wires and he was still I'd say 95% of the time while they were putting them on. After that he didn't move a muscle.

 There's our little warrior. That black lamp there flashed and was unpleasant.

Yesterday Liam's physical therapist came and I just wanted to share this picture.
He still doesn't sit very well. The spasms are helping delay his development but it is still a great picture. They are both the same size when sitting.

Ophthalmology

Today Liam had an appointment with his ophthalmologist.
It's been a long morning.
My parents left this morning and I think the kids were ready for that.
They passed out way earlier than their usual nap.

 At the Ophthalmologist Eliana did a great job waiting for Liams eyes examined. She just sat on the carseat and ate snacks while watching rio.

 Liam did a great job! The Dr. told us what we expected to hear. Liams vision problems are coming from the brain and eyeglasses won't really help in any way. So just keep up with therapies and we'll see her in six months.

 It was a long day and well deserved trip to a restaurant we don't visit often and help us feel a little at home. Plus it was right next to the hospital. We had a great time and I think Liam did too.

Look at those adorable feet that are always cold but somehow sweaty as well. Little rat feet.

Seizures are back...

Sorry it's been a while.
Finally out of bed, out and about!
Casey and I don't usually make time for dates.
Not because we don't want to but because we don't want to leave Liam with a babysitter because of his special needs.
While my parents were in town Casey and I finally had a date.
My jaw was still in pain but muscled through it.
On our way home we got a phone call from my dad.
They had called 911 because they weren't sure what to do.
They were thinking Liam was having seizures.
As he described them, indeed he was having them.
We arrived the same time the medics did.
Liam was having seizures.

The next day Liam had another one and we actually saw it.
They weren't the normal seizures that I had seen before.
These were different.
So we called his neurologist.
They finally changed his dosage.
We were able to get an appointment today with his neurologist.
Sadly Liam still had a seizure right in the middle of getting his blood drawn and lasted at least five minutes.
We recorded it since the neurologist asked us to email a video.
We'll see what happens next. 

4th of July

It's July 4 and Liam has been shooting some fireworks... no joke.
He is pretty pleased with himself.

We sat Liam up for the first time this week. Casey did.
He did a great job trying to keep himself positioned but we still have to work on it.
Slow and steady wins the race.
He gets so excited when he hears Eliana's voice.
He is kicking like he is running like the wind.
He loves playing with his tongue and making all kinds of sounds.
Something that he didn't do before.
He still has the cutest giggle.
Sometimes he likes to just sit and think.
I would like to get into his mind and see what runs through it.
I am guessing that he likes hide-and-seek because every time I pop out of nowhere he gets so excited.
I love seeing that cute and huge smile.
He kind of reminds me of baby daffy duck.

During the hospital stay after surgery
Perhaps during surgery...
Liam broke 2 bottom teeth through
and his top two are coming in.
Poor guy looks like he going to have a gap.
He is still such a cutie.

I'll have to post Liam in his 4th of July suit later.

Out of bed!

I can't imagine how Liam must feel staying in one position, one place.

So...

I took him out of his "bed" and let him spend some time on the bouncer.

I must say I think he really enjoyed that.

A little more movement and different toys to look at. 

Eliana was really excited to see him.

I am still a little careful with having her around him but she is great sister.

She was use to kissing Liam's feet all the time but she hadn't been around his feet since surgery.

The poor girl.

She received a nice hard kick from him.

She jumped up and didn't know how to react.

"Ow... ee kick"

is all she said and looked up me.

You can see the redness on her cheek.

The rest of the time she just decided to stay away from the feet and just stayed next to him.

Oh they are going to be best friends.

Today Liam is doing so much better and all we say is we can't believe how energetic he is and how they really are going to be THING 1 and THING 2.

He is beginning to be just like his sister.

No more Mr. quiet and calm Liam.

Eliana holding the cellphone as my parents spoke to Liam.