December

Liam has been doing such a great job with his head control recently.
We finally adjusted his high chair to sit him up a little more.
He scares me at times but he does a great job sitting there.

He is able to control his head much better and for longer periods of time.
Two weeks ago he could only sit for less than a minute before he was tired.
Today he can last for several minutes and we don't really have to support his upper back.
He can also last longer sitting against us.
In fact, today at church he sat against our chests for half of the hours.

 

On December 18 Liam had an appointment with Urology.

When he had his MRI they spotted Liam had both Kidney's inflamed.

They wanted to keep an eye on it so he had a second ultrasound since then.

One of his kidney's is still inflamed but the other one seems normal now.

Dr. wanted to make one last ultrasound in a year just to make sure.

He would rather be safe than sorry.

As you can see he did not enjoy it but we are glad he is doing great in every way.

 

I also finally decided that Liam needed a haircut.

His first haircut was back in March.

I haven't cut it since then.

His first cut I buzzed him because it was after his first surgeries.

I should have cut it once again in July after his surgery in June but it was a small they buzzed that I didn't bother.

But since he has become better with sitting I decided to take advantage.

I have cut hair for over 7 years and worked at a kid's salon for 3 years.

There I learned so much including cutting a crying child's hair within 10 minutes.

So it wasn't too bad cutting his hair.

He looks like such a big boy now.

 



Look at me now...

Even though there has been so much going on in our home
we still make time for Mr. Liam.
But we finally took time to capture this on video.
He is getting better with controlling his head for longer while sitting.
In the past as soon as we sat him up he was not happy.
This time he can sit longer and most of the time he doesn't fuss.
I still have to hold him up and help with his chest and back but his head is all him.
This is a video we took after I worked him for a little while.
He has Early Intervention come to our home and we take him to Physical Therapy and Occupational Therapy to a Pediatric Rehabilitation but I must say that he is holding his head better because my mom was here during Thanksgiving Break.
She is a massage therapist and she worked his neck and gave him therapy.
So we are very thankful that she came and very happy that they will be receiving us into their home in some weeks!!!
Take a look.

Update

Ok Ok

I am sorry I have not given an update on Liam.

Trust me I have been super busy.

I won't give you all the details about my schedule but here is a little about what has been going with Mr. Liam

 

 

So I think the last time I posted I told you Liam was rolling.

At this point it is ONLY when he wants.

It's usually when Eliana is around swinging things, throwing things, yelling.

The usual.

 

 

 Liam had his one year Dr appointment.

I'd tell you his percentages but I can't remember.

His head is obviously 100.

His weight was somewhere in the 60's

And height in the higher 90's.

 

 

 He was not happy with his shots.

But who is?

 

 

 They had a nice little section that was suppose to entertain Eliana and did a terrible job at it.

 

 

 Liam's been better at holding his bottles.

Plastic is much nicer to him now, apparently.

 

 

 Liam also just started new Physical Therapy.

He did a great job for his first day.

 

 

 

 My mom also gave him therapies

which has helped with his neck and holding his head up a little better.

 

 

 As you can see in the pictures below

he is doing much better with sitting.

Here he is throwing his new Christmas gift Snoopy all over the place.

 

 

 Here he is smiling because he is chewing on that blanket like it's no one's business.

 

 

 He is holding rattles much better and for longer periods of time.

Which is awesome.

 

 

 He has also been talking a lot.

He likes to copy sounds we make.

While my entire family sat at the table Liam turned towards Casey

he then repeated Eliana saying "Hi Dad!"

We were shocked.

As you can imagine.

We were told because of his sight impairment he would not be able to look at us and repeat words like other children, but he would be able to repeat just from sound.

We were quite impressed and knew Eliana would be a big help.

He also tries to wave.

 If I ask him to say hi to daddy he will immediately try to find him by his voice and will try to wave.

He also said "Awesome." And "Chacha"

 

Below is his Vision Therapist.

She was here today.

He is already doing better holding his head up during tummy time.

 

Below is his Occupational Therapist.

She was here today as well.

Here I called Liam and he slowly turned to me.

His head bobbed a little at first but he got it around.

She was NOT holding his head or helping him with it.

It didn't last super long but it is something.

 

 Here she is trying to get him to look at himself.

He did alright.

 

 

Liam's progress is slow but we are taking it a day at a time.

We are in no rush for him to do everything.

He has been through a lot.

He is a fighter and he keeps fighting.

His work is double that of a baby his age.

But he is doing it and with a smile on his face.

We would not trade him for any other child.

He is our motivation.

He gives his everything every day, every minute, every smile.

He had to have gotten it from his parents right?

So we too, must give our all.

He is our strength.

Great job little man!

A little late but still an update.

It's been a while since I have updated Liam's blog.
Liam has been moving like crazy.
He doesn't completely roll to his stomach or from stomach to back.
But he is almost there and rolls from side to side so much that he is all over the floor.
He laughs at sounds Eliana makes with paper or when she waves things around.
He still isn't tracking well but he looks towards the area he feels sound is coming from.
He smiles as soon as he hears us shaking his bottle because he knows he is about to be fed.

While Occupational therapy was over Liam was able to handle sitting longer than before.
He also enjoyed "playing" with a plastic toy.
He more of touched it but for a kid with sensory issues he did pretty good.
He loves music and moves his chest like shakira and bangs on his chest to the beat with one hand.
He likes to kick Eliana and tug on her hair which she is ok with sometimes.

He likes to make sounds and doesn't quite say a word but sometimes says mamamama or dadadadada.
He also needs a haircut.
Haven't given him one since March.
Yeesh imagine.

Liam is being weaned of his Phenobarbital since about a month ago and soon I have to make an appointment with his Neurologist.
But he has been doing great. No seizures of spasms.
About a week ago he had an appointment with his Neurologist and Hematologist/Oncologist.
There is no sign that the tumor has returned which we got the news that his next MRI and appointment with them is not for another 6 months!
Yeehaw!

Thank you for all your prayers and well wishes.

What is he doing?

So many are asking what is Liam doing?

I am going to guess you are asking about his progression...

So in the last month Liam has progressed a lot.

Well, at least to us it feels like a lot.

Liam can not hold his head up just yet.

His won't catch up to his head until he is about 3. Is what we were told.

He may take a while. 

He doesn't crawl.

But let's focus on the positive.

Liam is doing great!

He is a healthy little guy.

Little BIG guy.

He is moving his limbs much much better.

He still moves his right side better than his left but you can't really tell unless you are looking for it.

He is getting a lot of floor time on his stomach and he is loving it.

He loves to suck on his hands.

We can hear him smacking from the other room.

He has a loud voice and loves to use it to let us know he is here.

When he is on his stomach he thinks he is going somewhere and that is such a great feeling to me.

It's like I am actually seeing him crawl away.

It is also his favorite way to nap now.

He is strong and we can feel it when he slaps us, slaps our phones out of our hands, and pulls our hair.

He is eating solids.

Solids I mean pureed stuff.

He has 7 teeth and the cutest dimples.

He wakes up a couple of times during the night to eat. Although I don't know that this is a positive.

We can also tell that he is trying to hard to focus and look and what is in front of him, even if his attention does not last very long.

The best thing about him is his smile and laughter that keeps us going strong as a family.

I have learned that the best thing I can do as a parent to "push" or encourage my kids is to cheer them on, even I know it takes them twice the effort and strength as others. Now check me out cheering Liam on. He can't crawl but he sure thinks he is while I cheer him on. I guess you could also check his moves. Enjoy as much as I do.

Liam's last month

In the last month I haven't been able to update the blog.

But I am back.

So here is the update.

The last time Liam was beginning to roll.

I think he has decided to take a little break from that.

On August 13 Liam had another EEG testing.

This time I wasn't able to go because we didn't have a babysitter for Eliana .

I stayed home with Eliana while Casey went with Liam.

As you can see that cute look on his face. 

He was happy it was over and knows that he has a pretty awesome hair do.

We didn't find out about the results until a week later. 

This EEG test was done because he was having spasms and was put on a steroid treatment for two weeks. 

If nothing showed up we are to wean him off the medication.

YAY 9 MONTHS!!!

We cannot believe how time flies so fast.

It feels like it was just yesterday that our poor baby was in surgery.

6 months later and a big boy 

we can't believe how blessed we are to have a fighter in our home.

He brings us so much joy.

Joy that only he brings.

Each child brings their own kind of joy.

Sweet sweet boy.

Beautiful and soft smile.

Heavy and strong.

Our Gentle Giant.

Smiling and giggling even during trials.

August 16

We had his 9 month check up. 

No shots. HURRAY!

Head is obviously over the normal.

Weight : 21.7 lbs (just a little over sister)

Height: 30 in

 We obviously know he is developmentally impaired but other than that he is still one healthy handsome baby.

We started to sit him up against the couch and any place that we can.

We normally wedge him.

Here is a pic of the first time in the bumbo.

He can't hold his head up but Casey is helping him with that.

Other than that he was enjoying a different view from laying on his back, side, and stomach.

 August 19 

Liam had his visit with his Neurologist.

We were going to hear about the EEG results and what was next.

So they checked his vitals and head circumference.

They EEG Test was normal.

He responded well to the steroid treatment and since the two weeks were up he had us wean him off the steroids and just watch him.

The Dr. said that Liams head was now bigger and that it was something that worried him.

He contacted Liams Neurosurgeon and we scheduled an appointment with his Neurosurgeon.

I don't get a feeling something wrong is happening.

I actually think Neurology is measuring wrong and that Liam's head is changing shape and that is probably what is affecting the measurements.

Liam has begun solids.

His first taste he made a funny face but he got over it soon.

In fact, the first day he wouldn't take milk for hours.

He wanted solids.

He would even get angry if we didn't put it in his mouth fast enough.

He favors the fruits.

But he does like sweet potatoes.

We started feeding him on the couch and then moved him to a high chair that leans back further than Eliana's high chair.

He is getting better at understanding what he is suppose to do with the food.

He use to keep the food in his mouth and talk until the food went to the back of his throat and realized he needed to swallow it.

Now he actually tries to taste and chew it a bit.

Plays with the food with his tongue.

 

 

August 22

We took Liam to his first baseball game.

It was a fundraiser for the Brain Injury Association. 

He did a great job sitting up in the back seat of the stroller. 

I helped by putting my hand on his chest so he wouldn't fall forward or to the side.

It also helped with keeping his posture up. 

Since his head is heavy he pushed his chest forward and his head falls back.

Uncomfortable for him.

He stayed for only minutes, but hey it's something.

 

August 26

Since Liam's Neurologist contacted Neurosurgery

Liam had an appointment with Imaging and his Neurosurgeon.

He did a great job getting his ultrasound.

It felt like the Dr was taking forever to come talk to us.

I must admit that even if I didn't have a bad feeling about this appointment, it still made me anxious.

 I just want the nightmare to be over.

If Liam's head IS growing, that means he get the shunt for sure.

The little tube from the brain to the stomach.

We are hopeful that his past surgery worked even if a nurse when speaking about her experience with her son asked about our son "Does he have the shunt? Oh no? Well we tried that surgery too and still ended up with a shunt."

Thanks lady.

I tried not to say something back or make a face.

Just smiled.

Kind of.

When the Neurosurgeon finally came in he began to ask if we had seen his behavior change.

Vomiting?

Fussiness?

Sleeps too much?

The usual we have to watch out for.

But we had not seen any sign.

He felt his soft spot and proceeded to say it felt great.

In the past his soft spot felt great and still wasn't doing well.

It was beginning to worry me.

He apologized because we had to drive to Salt Lake but to us, we don't live far and we don't mind especially with Liam's history.

The ultrasound came out fine.

He didn't see anything wrong and said Liam's head was NOT growing.

So he kept measuring to try to figure out why Neurology was getting different measurement of Liam's head circumference.

When he finally found it he said Neurology was measuring in the wrong spot and because his head is changing shape, that is where it was coming from.

He sent an email to neurology telling the correct way to measure his head.

I was right.

If I am confusing you, Liam's head gets measure in mm with a tape around his head (head circumference).

It is suppose to be measured around the head at the forehead and the occipital bone.

Neurology was measuring straight around the forehead and the parietal bone.

He also told us that from now on we had to become Nazi parents about Liam sleeping, laying, and spending most of his time on his stomach.

That night we began to put Liam on his stomach.

We fought.

When he couldn't win.

He just passed out.

For those who noticed and those who didn't....

I just realized that Liam is always wearing blue.

He has plenty of clothes but blue is my favorite color and marvel heroes.

For some reason I only take pictures when he wears blue.

Liam Rolls!

Watch out everyone!

Now that Liam has medication that has helped with the spasms there is no stopping him now!

I laid him on his side like we usually do and he has been doing great but I decided to take it to the next level.
I laid Liam on his stomach and he rolled over to his back.

He usually likes to lay there and fall asleep during tummy time, not today!

He lifted his head and kept it there for a while.

He even brought his hands and knees like he was getting ready to crawl.

But no. 

He then got faster at it that I had to place him on his tummy and get the camera prepared so I could get a couple of good pics.

He even smiled really big because it was difficult for me to get the pictures.

But I was finally able to because he slowed down.

Almost like posing for the camera.

Either that or he was getting tired.

Way to go little man!

As you can see Eliana was cheering him on 

and even trying to roll next to him.

She was having fun with her "bubba".

Liam tries

So we have been working with Liam to roll.
He actually beginning to try to turn his head as far as he can to the side and will lift his legs up.
We think he is trying to roll but we'll keep working on that.
He does enjoy trying to roll from his side to his back a little more than he use to.
Baby steps but he'll get there some day.
He is such a cute little guy.

Don't feel sorry....

I walk down the isles at the store. 

I can see people looking at Liam.

I wonder what they are thinking.

Someone asks how old Liam was and went on to comment that she had a ten month old and how difficult they can be and that I probably know.

Someone else comments about how great of a baby he is

because he doesn't make much sound or move a lot.

When I shared Liam was developmentally impaired,

each conversation ended in awkward silence.

And an "Oh, I'm sorry."

Well I am here to tell you. Don't be.

I find that many people find it awkward and aren't sure what to say.

I am aware that you don't know Liams situation.

You probably think that I worry a lot and cry in corners.

Truth is, I don't.

Liam was sent to us to bless us in many ways we didn't know we would be.

He is a special little guy.

 I don't feel sorry for myself and you shouldn't either.

Nothing makes us different.

I am a mother struggling with a different situation but I want to be treated equal.

We love Liam no matter his condition.

To us he is a normal baby.

No matter what the internet says could happen

we live life like an average family only we have more appointments.

I am open about Liam but I don't want to make you feel sorry.

We love our job as his parents.

So when you talk to us don't feel sorry.

Be happy.

Just like we are that he is here with us today.

I mean look at that smile.

He is happy and that is all that matters to us.

 

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.