Liam just keeps doing better.

He is still all smiles.

He likes to look at his hands and feet a little, every now and then.

He is a baby, so he still cries.

I caught him playing with his jaw.

Opening and closing it.

He also like to growl like a lion.

I wonder if it's because Eliana does it so much.

Even if these are baby steps

Even if they are things a 2 or 3 month old do

I am still amazed 

Because it's like our little boy was born again.

Liam has done better today. 

His neck still hurts when we carry him or move him.

Sneezing would hurt but now it doesn't.

I am not sure why but he is sneezing a lot.

He is becoming more verbal and kicking away.

Last night he was making grandma and mommy laugh because he kept puckering up.

Reminds me of my younger brother.

Hopefully I will catch in on camera sometime.

He even gave us a giggle after I asked if he was getting ready for his first kiss.

He is tracking much better.

So good that he was laying and Casey accidentally hit me with a

pillow and he giggled.

He kept giggling as Casey kept doing it.

Then he began to cry and I couldn't figure what it was until I laid him on his side.

He was just tired of being in that position.

He fell asleep and just kept smiling, even giggled, in his sleep.

I just had to take a picture.

If you are wondering what the orange on his head is, it's the soap they put on for surgery.

We are only allowed to give sponge baths and not touch the area for a little while.

Soon we will be able to wash his hair gently, but no baths or touching in incision area.

Not until we see the Doctor in 2 weeks.

And excuse the girly bedding, he has had some accidents (vomiting) so we were out of his bedding for a while.

Thanks every one who is interested in Liam's health and recovery.

Thank you for your prayers, kindness, love, and support!

Family Reunion

Today is Casey's family reunion.

His mom is here so she gets to go.

Wish we could have made it but Liam needs to stay home.

Hopefully when Liam gets better we can go visit his great-grandma!

She is such a wonderful lady. 99 and going strong!

Here is a pic of the last time Liam was able to visit her back in April.

Look at how happy he is to see her!

His Cute Giggle

Yesterday we were able to finally catch Liam's giggle on video.
Not only did we catch it but it is the longest he's ever giggled.
In the past it was spontaneous and very very little.
It is just so cute and we are so glad we are able to see a change in him and how happy he is now.
Take a look at his cuteness.

So I have been trying to figure out what to do. So many I can't decide. Or find.
With everything that Liam has gone through, I have felt the need to serve in some way.
Just recently. About half a year ago. I learned to sew. And about 2 years ago I taught myself to crochet.
While we were in the hospital people made and donated blankets to the children in the hospital. They were even nice enough to give Eliana one.
I have been searching for local groups and haven't found anything yet but I am hoping to soon. If any of you know of any please let me know.
I found this great video of someone who makes super hero capes for little ones that have disabilities and illness and found it to be such a great idea. I may even do the same and donate it them to the hospital that Liam went to. Take a look at Tiny Superheroes!!!
I would love more ideas!


In the meantime if you are interested in donating or learning more here are some of the links that I like to visit every now then.

The National Brain Tumor Society

The Brain Tumor Foundation

Brain Tumor for Kids

America Brain Tumor Association

Children Brain Tumor Foundation

The Hydrocephalus Association

CURE Hydrocephalus

HyFI Hydrocephalus Foundation Inc.

Children's Hydrocephalus Support Group

Teach Her Something...

Last night Casey drew from our "Date Jar"
The Popsicle stick chosen said "Teach Her Something"
After long thinking Casey taught me about the brain.
A little more of what Liams surgery was about and I thought I could share with you.
Now that I have a better understanding.
 If you look at the white arrows. That shows where Liam had his tumor. These are pictures of an adult brain. Liam is a baby so his brain isn't as developed. Those "open/empty" spaces are the ventricles. Liam was blessed that his tumor was in a ventricle. It was attached to the choroid plexus and eyesight part of the brain. So Liam's ventricles are not as small as an adult because they have more space. That was another blessing.
The Pink arrows and circle show where they punctured holes so that the spinal fluid could get through. If you look at the pink circle they punctured a hole between the top two ventricles and from each top ventricle to the third. From my understanding.
The top right picture if you pay attention the blue veins are right above and flow next to where one of the holes was made. The orange circle is the pituitary gland that controls all the hormones. Because Liam had so much fluid it was squishing the pituitary gland and awesomely pushed the brains artery out of the way so that the Neurosurgeon could get to where he needed to puncture the hole.
The green/yellowish arrow shows what is the choroid plexus. This is what was depositing so much spinal fluid. Since Liam had more than he needed the Neurosurgeon cauterized all of that.

And this my friends and family is what procedure was done to Liam. It is known as ETV ( endoscopic third ventriculostomy ) with a CPC ( choroid plexus cauterization ).
Now if someone thinks I said something wrong or I didn't explain it quite right please let me know. If not I will feel very intelligent.
Thank you Casey for teaching me. I had an idea but you made it clearer. That was a great "at-home-date" that I hope I can pass on the knowledge to those who really are interested in what Liam had.

   

2 Things

First thing.
As Liam recovers and begins to move more and be a little more awake, I can already see a difference.
Every trip to the Neurosurgeon and Neurology we kept being asked "How is he doing?"
Well I see him every hour of every day.
To me he looks fine. Just like he did from the beginning.
I wasn't lying and I wasn't trying to keep from the surgery from happening.
In fact, I wanted the Dr.s to tell me what was next.
Is it time for surgery.
Every appointment, in a way, I went home disappointed because his surgery was canceled.
Mainly because I had a feeling it was going to happen.
But I did not like waiting to see when it would happen.
How big does his head have to grow before they decide it's time?
Every appointment I packed bags and had to come home and unpack.
But I am glad that the surgery turned out to be a success. We can only pray and hope that it stays that way.
Before Liam went into surgery we found him to be fine but there were some things that worried me.
His legs were beginning to shake.
My grandpa was diagnosed with hydrocephalus when I was child. For a long time I thought it was because of me. I hit him on the head with a stick while he held my pinata for my birthday. But it wasn't that. He had a shunt in place and his leg shook like Liam's.
I told the Neurologist who said we had to make sure to give him his exercises because it has to do with his muscles, and it's normal for people with brain surgeries. As long as he keeps moving them he should be fine but to watch for it. My grandpa was in a wheel chair so it worried me.
After this surgery Liam hasn't done that. His legs were always pointed and they no longer do that either. He moves them more.
When his physical therapist would come she would say that he still kept his hands closed, which is something he shouldn't do as much for his age. After surgery he just kept raising that hand up like he was asking for a high five. He just can't get enough of it either. Just puts those hands up and waves them around like he just doesn't care.
He has been moving his head a little better. I mean he is still recovering but it's still a little progress. We try not to move him to much. His neck seems to be very tender and cries when we move him. More like squeal. The Dr. said it must be because of how he was laying on the surgery table and not because of the surgery.
He use to be able to move his eyes only so much. He would look up every now and then but we just thought it was by choice since he did it before just not a lot.
After surgery his eyes were just everywhere. Almost like saying "Look what I can do!" (Bambi style)
His eyes seem bigger and less swollen. Which makes sense. I mean all that pressure in your brain, could you imagine?
One big thing I notice is that he opens his mouth wider. It was almost like he didn't want to eat before surgery and we would have to make him open his mouth. Now we don't struggle. It much have hurt to open his jaw.
I am just amazed at how much he has already progressed and he hasn't recovered fully.
We can only hope and pray that he keeps progressing and that we don't have to worry about any more surgeries.

Second thing.
Yesterday one of my visiting teachers. It was pretty late but she brought us some cookies (which I was craving and was going to ask Casey to buy and didn't) and a veggie tray. Really nice and thoughtful of her. But she said to me "How are you doing? I mean you seem really calm with what you are going through."
Yes I am calm. I would be lying if I said that I don't worry but just the fact that Liam looks great, is progressing, and we are home is such a blessing and has be calmed down.
I can only thank my Heavenly Father for the husband that I have because I wouldn't get through all of this alone. He is such a loving and caring husband and very helpful. Helps me stay sane. Love you Casey!

Home Early

Free at Last!!
 As the Genie would say in Aladdin.
I wasn't expecting to go home early, nor did I want to.
I just feel so much safer with Liam all wired up.
I know terrible mom.
But really there I can see how he's breathing, his heart rate, and blood pressure.
At home I wake up every hour to make sure he's still breathing.
Or hasn't slid from his "homemade hospital bed"
The Resident Neurosurgeon came in early this morning.
It's a good thing I was already awake. Didn't want some one to tap on my leg once again.
He checked Liam's head and made sure it all looked fine.
"You may go home today because he looks great!"
"Awesome! Thanks! Oh wait what about his CT Scan?"
"Oh right. Let me talk to his Dr and we'll see if we can get you home early because he looks great!"
I slept great last night.
Sure the bed was a bit stiff but it was better than the last week. I was just glad the surgery was over with.
A bit after his Neurosurgeon came in. Checked his head. Said someone had told him we wanted to go home already. I didn't want to but I guess he had things to do because he was talking fast and I barely had time to get a word in. So he said he would be changing his CT Scan to this morning and if it all looked good we'd go home.
Casey, Eliana, and his mom were staying near by so I let Casey know.
Liam must have slept great and had no complications last night because I wasn't awoken with beeping, crying, or nurses. That's good.
I was a little worried since after surgery Liam was having a hard time keeping his food down, or medicine. They weren't sure if it was the oxycodone they gave him so they gave him Tylenol and Motrin.
The nurses were impressed with how he was dealing with pain. He didn't always show he was in pain but I didn't want him crying hysterically to give him pain meds. Probably the worst thing you could choke on.
He kept throwing up and choking on some of his vomit. Flem. 
He is one brave little guy.

My little hero.
Casey was on his way when Liam was sent to get his CT Scan.
Again he just impresses everyone around him with how good he is. He just sat still during his CT Scan.
The only thing he did was spit his pacifier out and somehow get it back in his mom. It was funny to just see his tongue stick out to get it.
After some time of waiting the Dr.s came in and gave us the ok to go home.

I didn't expect to come home this early but I am glad everything has turned out better this time.
All we can do now is hope and pray that Liam no longer has to have surgery again.
After coming home we set Liam up his own little hospital bed because we have to keep his head elevated for 2 weeks, until his check up. Which reminds me I need to call his neurologist and make an appointment with him.
Yay for phone calls to Doctors and Therapists! 

But before we went home of course we took Eliana to spend sometime playing in the play room. There are pictures of the last time she was there.

Woohoo Surgery!

Here we are once again at the Hospital in Salt Lake.
This past week was terrible.
I couldn't sleep one night.

I am so jealous of those lips

I kept waking up another.
I went to bed late.
I woke up way to early.
I am just tired.
One thing I can say is that I am glad we are back and that Liam finally went through surgery.
We had an appointment with Oncology last Thursday.
They had an MRI done. He was sedated. Poor child. Pricked a lot once again.
The MRI revealed what, as a mother, I had anticipated.
Liams ventricles are much larger than they were in the past.
They let his Neurosurgeon know.
Yesterday we had the appointment with Neurosurgery.
We talked about the procedures that could take place.
Either an ETV with a CPC or a shunt.
We are blessed to live near 1 out 8 surgeons in the world that could perform the ETV/CPC procedure.
It is risky because it will be done right by the brains main artery and could cause death.
After talking it over Casey and I decided to go through the risky surgery.
Why be afraid?

This morning Liam was prepped for surgery at 7:00 am. I was up since 3.
That's right... 3
After about 3 hours of surgery Liam was out of surgery and in Recovery.
What a strong little guy.
I feared the first hour.
Why?
The Doctor said if for any reason he thought that the procedure would not work out he would immediately call us and tell us Liam needed a shunt.
At about an hour and a half his nurse called. I was nervous but it was good news.
Surgery was going well.
The Surgeon came to talk to us about the outcome and the future.
There is still a 30% chance Liam would have to come back in the future and there was nothing that could be done but put a shunt in.
We pray that this doesn't happen.

We have been blessed with such a great hospital.
Liam is now recovering and Eliana has been able to be here.
There is even a play room for kids of all ages.
As you can see in the pics she is having a blast.
She didn't even want to leave.
We spend A LOT of hours there.
The good thing is she will sleep great tonight.
I didn't even know she knew how to do half of those things.
May be from watching mommy and daddy she has learned
I mean I do not iron very often but she has seen because as soon as she picked that iron up she knew what to do with it. She also did the dishes.
She pushed a doll on the stroller and ran yelling "GO GO GOOOO!!"
She sat her on a high chair and fed her.
She ate pizza.
She also attended a sick baby.
Maybe she will be a Doctor. I had a great time with her playing pretend.

Oncology/Hematology

Today Liam was scheduled for an MRI.
He was really suppose to have it last month but apparently their front desk does not know how to schedule appointments.
They said that they were going to call me and when May came along I tried to schedule and was told someone else would have to call me. The person that is in charge of the scheduling.
I ended up having to call once again last week.
They scheduled me for Tuesday and on Monday his Dr called me saying they scheduled him wrong.
So anyway.
Since Liam was having an MRI it was going to take several hours so we needed a babysitter for Eliana.
A family member lives on our way to SLC and she volunteered to watch over her.
After dropping her off we headed to the hospital.
Sedation was planned for 10:30 am  so that the MRI could take place an hour later.
While we waited Liam was asleep.
I don't know if it's me but he seems sleepier than normal.
I think I'm just ready for him to go through surgery.
I haven't been given a for sure but as a mom I just know.

My poor baby boy.
I am not sure if the technician was new or what but Liam already has problems with technicians finding his veins and actually getting the IVs in right.
She was struggling and he was crying.
Tears were just filling my eyes.
Flashbacks.
I was about to ask for someone else when they went to find someone better who was able to get the IV in less than a minute.
While they went to get her I could hear him asking for me so I took him into my arms.
I wanted to cry because for the first time he looked into my eyes for what seemed a long time.
He just stared and calmed down as I looked at him and repeated "You're ok little man."
Finally after the IV was in we went to the MRI place and sat as we waited for his nurse or someone.
I just sang his and Eliana's favorite primary song "My Heavenly Father Loves Me."
When they were ready they sedated him and took him to get ready for the MRI.
Casey and I just went out and about until it was time for us to come back 2 hours later.
We actually got them a little gift.
We had to wake him but he didn't want to.
I believe he was thinking "Hey I am finally getting some sleep without Eliana around, you are not about to wake me up!!"
It took a while but we were finally able to wake him up and feed him by the time his appointment with oncology was up.

At the Oncologist his Oncologist was out of town so we had other Dr.s come in. We knew them as well so they weren't knew to Liam's case.
They told us the MRI looked great. No sign of any tumor. So nothing has returned BUT...
Yes here it comes what I suspected.
....Liams ventricles are much larger than when he had the CT Scan and even the Sonogram.
So they called Liam's Neurosurgeon and let him know about the MRI and they would talk about it over the weekend.
I was ready to go home and pack for Monday.
Monday he has the appointment with his Neurosurgeon and Tuesday he is already scheduled for surgery.

Urology

When Liam had an MRI of his spinal chord to check for any tumor there

They found that his left kidney was swollen

It caused the Dr.s a little concern 

but they said he may just grow out of it.

They still, however wanted to make sure that it was going away and not getting worse.

So today he had an appointment to just check how his kidney was doing.

He had an ultrasound done yesterday and today Dr. Si

(for short because his last name looks something like Oottiskldfalsdjfnslikjfei)

He said the ultrasound looks like it's still the same.

There are three reasons why

Either there is a blockage,

Reflux

And I can't remember the last.

As long as Liam shows no sign of infections it should be fine.

He may have just been born with it like that and never change but as long as there are no bad signs we will just get Ultrasounds every six months.

Woohoo

 

 Eliana had some fun while we waited to be called for the Ultrasound.