Day 1 Wish Trip - Travel to California

It was an early morning to catch our flight! But, the kids went to bed a bit early and were very excited for the trip. Even Madison was excited, more than we thought for a 2 year old.





The kids were super excited about a room with a bunk bed. Of course, this excitement can't go without a bit of an incident. Liam fell off the bunk bed ladder and skinned his forehead.



Off to bed to rest up for Disney California Adventure!

Liam's Wish Trip

We had an amazing trip to California! The highlight of the trip for Liam was visiting Radiator Springs at Disney California Adventure Park and seeing all the familiar sites from the Cars movie. He was especially excited to meet Lightning McQueen and Tow Mater. When we saw Lightning McQueen, Liam ran up and gave him a big kiss!

We visited Disney California Adventure, Disneyland, Legoland, San Diego Zoo and Sea World. 

Thank you Children's Wish Foundation for this amazing opportunity! It was a great time for the whole family.

I will post more details and pictures soon!

The "New Normal" for a Brain Tumour Parent

I found this blog posting, I can't believe how accurately it describes the scanxiety that goes along with having a child with a brain tumour. If you wonder what consumes my mind every single day:

http://themourningafternatasha.wordpress.com/high-scanxiety-portrait-of-a-brain-tumor-parent-on-the-brink/

April 30 will be 1 year from diagnosis. Pretty much every day, I am reminded of the stress of a year ago. Remembering Easter and Liam's symptoms the months leading up to diagnosis. The many tests Liam had to go through. Then that dreaded day the ER doctor said, "your son has a brain tumour".

Feeling Well & OT Sessions

Liam is feeling well and doing well. Having significantly less appointments is good for us all! Some days Liam is more tired, some days he has more energy. I have read that for some kids the fatigue can last years, so we'll just hope for the best.

Liam started his OT focused sessions this week. Until now, Liam's OT has mainly been suggestions of things to work on at home to build strength in his hands. This has been great, and has helped Liam come a long way with his fine motor skills. We decided that the most helpful would be to focus on Kindergarten prep activities, such as printing and scissor skills. They also have a student that is going to be working with Liam for 4 weekly sessions who has previous experience working with preschool kids.

Liam is not quite able to print letters. In our session, they watched Liam do some colouring. Liam seldom picks up the marker/crayon and holds it "correctly". I realized in the session that I always put the marker/crayon into position for him. They put a sticker on the web of Liam's hand to help him know where to position the marker. This is going to take some practice for him to do by himself.

When Liam holds the marker correctly, he holds it well. There are a few things Liam does that we need to work on. Liam tends to use his whole arm when he colours. And when he colours at the bottom of the page, he hooks his wrist to reach down.

I am happy that Liam is able to get this help in these areas. I know that some kids aren't keen on colouring at his age, Liam is in that same boat. But with the damage to Liam's brain (area affecting his motor skills), it is going to take Liam longer to gain the same skills. I'm happy to be working on these things now, and do small bit of work on them at a time. I hope this help will prevent Liam from getting frustrated, as that will just lead to him not wanting to do it.

Liam's Wish Trip

We have our wish trip booked! We are going to Disneyland for Liam's wish to meet McQueen & Tow Mater. We are also going to Legoland, Sea World and San Diego Zoo.

A huge thank you to Children's Wish Foundation of Alberta. It is really a huge deal to be able to have a family holiday and give Liam such a special gift.

We received gifts and trip details from Children's Wish this morning. The kids are beyond excited!

Neurotherapy

 

This picture is of Liam at Stars Gymnastics Club. Jamie's Preschool attends Stars for a class once a week. It is so great for the kids to be able to take part in this!

A part of Liam's recovery has included neurotherapy, including PT, OT and speech therapy. Liam saw them daily when he had his first surgery to get him up and walking. When we first came home after his first surgery Liam could stand, but had troubles walking without falling. He had ataxia (shaking) for quite a while, and was weaker on his left side. Liam's tumour was in the cerebellum area of his brain. The cerebellum plays an important role in motor control, impacting Liam's motor skills.

After Liam's initial surgery, he was unable to swallow food/liquids. This was the original need for the feeding tube. The damage to Liam's vocal cord has also resulted in a change in his voice. Liam still speaks in a higher pitch than before his surgery and still has some nasality to his voice.

These monthly sessions are now Liam's favourite, he loves the therapists and all the activities they play. Sometimes we do PT/OT and Speech all in 1 hour, but often just 2 areas in one session.

PT (Physiotherapy)
As with everything, Liam has come very far with his gross motor skills. In therapy, I can see that Liam is benefiting from his Jamie's Preschool gymnastics class. He showed his physiotherapist that he can walk on a balance beam (assisted). Liam can jump forward with two feet very well compared to before. We can see Liam jumping farther every month. From our last appointment to today, Liam is doing much better walking up the stairs, one foot ahead of the other. We also do neck stretches, because he still tends to hold his head one way.

OT (Occupational therapy)
A few months ago, Liam didn't have the strength to squeeze a clothespin with one hand. We've been doing strengthening exercises, so he can now squeeze and pick up toys with tongs! This has given him the ability to hold the pencil so much more comfortably. Liam is not keen on drawing, so it isn't easy to get him to practice a lot. Similarly with the fine motor skills, a month ago Liam couldn't cut with scissors, but he is doing it on his own now.

It is great that Liam loves playing with Lego and putting beads on rope. These have both been very helpful with his fine motor skills.

Going forward, the occupational therapist is arranging to have some longer sessions dedicated to Liam's fine motor skills. They have someone experienced in working with preschoolers who will work with him to help Liam out with Kindergarten. Liam isn't alone at his age in prefering Lego to colouring. But we want to make sure Liam has the strength and ability in his hands, so he doesn't get frustrated.

Speech therapy
Last month, we did something a bit different for speech therapy. Liam played a few computer games to test his pitch. The game tested Liam's range of pitch and helps Liam understand high vs low. They were simple games where Liam spoke into a microphone and a character moved up or down the screen. Liam would have to adjust pitch to move the character and get the reward.

They tried doing a test to check how much Liam's voice is hypernasal. You can hear it when Liam speaks, and his voice is different than before his surgery. They put a mask on Liam's face which sits on his upper lip. He was scared to talk (it is a strange contraption) so the test didn't work. We'll try this again later.


Liam's biggest area of "challenge" at the moment is his "toileting". It's hard to pinpoint the reason for this setback, as he was well toilet trained until late summer/fall. Chemotherapy/antibiotics caused Liam a lot of diarrhea, it seems like the issues have continued ever since then. We've been working with the neuropsychologist and the PT team on this.

Someone wrote a good blog post on the "cost of surviving cancer", the writer's daughter also had Medulloblastoma, she speaks about her rehabilitation.
The Cost of Surviving Cancer - A Parents View

Info from BT Buddies

A few pieces of information from Brain Tumour (BT) Buddies: