General Meeting - Hydrocephalus

This month was the annual General Meeting for SB&H, our Ontario organization.

This is the second year I've attended. They have presentations every year from professionals in the area. This year the area we were talking about was Hydrocephalus.

I think I'm the only person who took notes on the presentation, but it was interesting.
One of the presenters is a renowned neuropathologist, Dr. Marc Del Bigio and he discussed the brain with hydrocephalus.
The information he gave us was interesting. And I understand the importance of having specialists coming and  talking to us, but the title of the presentation would give me some insight into the way we heard the information presented.
Damage and Dysfunction in the Hydrocephalic Brain
Personally I'm extremely sensitive to not labelling. Not saying Hydrocephalic brain, but the Brain with Hydrocephalus. Doesn't really seem to be that big of a deal, but it is to me.

Anyways.
The speaker is a pathologist. Which means that he is used to working with dead people ect. Which adds valuable knowledge, but you have to remember he is talking to a room full of people who either have hydrocephalus themselves, or has a loved one who does. I swear my mouth dropped open when he talked about animal testing and autopsy findings.
I`m going to review my notes and put them into my other, learning blog.
HERE - I want to get this part out before actually adding the information (with pictures) so hopefully it will be up by the time you visit.

The second speaker was Dr Ruth Donnelly who talked about her research done with 100 kids who have hydrocephalus secondary to a number of different reasons.
How Smart Are Kids With Hydrocephalus?
Is this a reasonable question?
Is there a reasonable answer to this question?
Not only did she start by saying who did we think was smarter. But she ended the presentation saying that no matter what different tests say, they do not label our kids.
Hallelujah!
It`s very nice to hear from a medical professional. I know sometimes we feel that they just don`t understand, and that we are fighting a battle to get our kids to seen as just kids, who also have ...
I`m going to review what she talked about as well HERE

Other parts of the General Meeting we got to meet 2 puppets with spina bifida!
Teaching Awareness through Puppetry
They go to schools and talk about what it`s like (for the puppet) to have spina bifida, and give an opportunity for questions.
They start at Grade 1.

Another great part of the general meeting was the opportunity to meet other people. I sat at a table with 4 other mothers. 2 of whom I know, but the other 2 I've only met online. It was nice to sit with mothers and eat and chat. They are also 'ahead of the game' with older children.
We are hoping to all meet at a Support Meeting for Hydrocephalus in about a month - our second meeting for our newly formed group with help from SB&H.

I enjoyed the General Meeting, and will definitely mark it on my calender for next year as well.

Glowing!

Had a little trip to the dollar store (to look for accessories for Halloween and a little boy's birthday that is coming up in 6 weeks or so), and decided to pick up something to surprise the kids!

 

We had 50 cents of fun right here!
Katheryn thought they were sooo cool!

And Nick of course used his as drum sticks!

;) Thanks for the idea Jill!

Under pressure (sore)

Just before Labour day weekend Nickolas came home with 2 large blisters on the top of his left foot. This is the foot he has less feeling in, but he still has feeling on the top of his foot.
Within an hour of me seeing it, the blisters had both popped leaving a awful looking open sore behind. I immediately pulled out my box of bandage supplies

This picture was taken after about 1 week. The toe one is actually healed in this picture, it was smaller.

We've been pretty good with skin so far. So it was kinda a kick in the face to have to deal with this. It's amazing just how fast it happened. I had just assumed that because Nickolas could feel his feet that this wouldn't happen.
He can definitely feel his feet. Every time he is on the potty I'd take a look. So that Nickolas kept screaming at me "No mommy! Not my foot!"

I had cream on it, then a band aid, then so I could put his shoes and braces on (luckily the AFO's don't rub against this spot) I put some gauze on it for cushioning and taped it all up.
But it's on it's way to healing well.

Nick is a boy and boys get dirty. I taped a sock to his foot to keep the dirt off of it.

It hasn't impacted his walking at all. And we've put him in some crocs just in case things rub a bit.

I'm just amazed at how fast it all happened. And this is on area he can feel. Everything I have talks about skin breakdown and being vigilant (and I thought I was) but now I can really see how one little sore can get so big so fast.
I'll be so happy once it finally heals (we are heading into week 2)

 

Meet the Teacher, Meet the School

We went to the school BBQ this week.
A chance to meet the teacher, a chance to look over the school.
An opportunity for Katheryn to show off her classroom
And for Nick to be out with a school full of children in his wheelchair.

I'm trying really hard not to make Katheryn's first year of school about Nickolas. This is Katheryn's time, Kathryn's thing. I don't want to take that away from her. We were there to see about Katheryn, have Katheryn show us around, show us what she is doing.

Katheryn was excited that we were going to school with her.
When we got there she became a little nervous and didn't want to leave our side. We went to the book fair first. Katheryn had already picked out a book she wanted, but then she saw the Princess book. That was it. Princess Birthday book (we've read it 3x tonight already).
It's one of the early reader - learn to read books
Nick went over the the bookshelf and said "Cars? Where is cars? There it is!" And never let go of his cars book.

Katheryn started to get more comfortable when we walked around the school.
She LOVED drinking from every water fountain we passed.
Nick tried to as well, but it was difficult to get his wheelchair into the right position (and he's still small).

Outside there was pizza and we had a little picnic in the playground.
Katheryn finished her pizza and then was off running and trying to play with bigger girls. Nick was off and going all over too. Climbing up on his wheelchair, off, up and down and wanting to go all over the place.

Kyle hadn't been to the classroom before, so when it was time Katheryn was ready to show him everything! This is where her cubby is, where she sits and eats, where she plays. We each had a couple of minutes to talk with the teacher. Katheryn is adjusting really well (no surprise there).
Katheryn is loving school!

But we had some Nickolas issues.
Wheelchair access.
Sure there is a ramp at the front of the school. But at the back there are steps that Kyle and I carried the wheelchair down. Going into the school from the back there was a ramp.
At the top of the ramp is the door, which opens into the ramp. So to get through the door we had to wait for people to stop so we could close the door, wheel in front of the door, and then pick Nickolas up the single step into the hall.
Not so accessible.
I was really upset about that.

The classroom.
I'm not sure how it would work with the wheelchair, and it wouldn't be able to get into the play area, which is down steps. But if he could move around with his walker? Hopefully that means that it will be better. He didn't particularly care the there were steps. He was excited to just crawl around and race around the steps. So I guess this makes it my problem (not his).
When we had to leave the play area Nick had a complete meltdown in the classroom. I had to take him into a corner and give him a time out before he finally calmed down.

I had a chance to talk with the teacher, be reassured that Katheryn is doing as well as I think she is doing. Also mention that Nickolas will be following next year (and we'll start setting things in place in November - hopefully). I may have also mentioned that I could volunteer if needed...

When we were leaving Katheryn and Kyle raced ahead (no running in the halls!) and Nickolas and I followed. Nickolas wanted to do everything himself. So I wasn't allowed to touch his chair at all "No Mommy! Nick do himself!"

If I was grading everything, I'd say the school would get a C in accessibility. But the night out was fun, even with the time-out.

Voice of the Family

I was approached at the beginning of the summer about an opportunity to talk to the Board of Trustees at Grandview Children's Centre about our experiences there. It is a program called the Voice of the Family.
Of course I jumped at the opportunity.
I had a 'interview' with a representative so that the board had something to read ahead of time. And then I made notes (like a blog post) from there. I couldn't just read off my notes. So what I brought with me were just point form that I wanted to talk about. But these are my original notes/post.

It went great. They were very thankful to hear about our experiences, the good, the bad and the ugly.

 

Thank you. My name is Amanda and I would like to talk to you about our experiences with Grandview Children's Centre. My husband and I live in Oshawa with our 2 kids, both receive services at Grandview. Katheryn is 4 1/2, and Nickolas is almost 3. We primarily come for services for Nickolas.

Who am I?

Nickolas is a very happy and easy going kid and he loves to make people laugh. He loves his family and especially his sister. Nick also is very, very stubborn. Which he likes to show during physiotherapy or when we try to get him to do something he doesn’t want to do.

I found out that Nickolas was going to be born with spina bifida when I was 22 weeks pregnant. (In their read-ahead-of-time stuff it explained what spina bifida and hydrocephalus is. Nickolas also developed hydrocephalus when he was 2 weeks old and has a vp shunt (which was not unexpected). We were scared by the doctors about what to expect with a child with spina bifida. I researched a lot online, and found online support and hope from other parents that had children with spina bifida. I found that there is a whole blogging community. While I was pregnant I started my own blog to share our story and provide hope to others. I also have an educational blog to help explain what spina bifida is, in simple and easy to understand language. And I talk to students at Centennial College to educate them about what spina bifida and hydrocephalus looks like.

There was also links and the actual address for the 2 blogs.

 

 

Nickolas was born November 2009 and immediately transferred to Sick Kids, where he had surgery to close his back at 24 hours old. He stayed in the hospital for 2 weeks before being discharged home. While we were there he was referred to the Infant development program in Durham, as well as the spina bifida  clinic at Holland Bloorview, and the program at Grandview.

 In February 2010 we had our intake assessment. I found it stressful for that initial visit. We sat around in a circle in one of the treatment rooms and everyone asked me about what he was doing. But Nick was only 3 months old, and he wasn’t doing very much. After the visit we were told that he was going to be admitted to OT and PT, but that their wait list was about 9-12 months long. Speech said that right now he was age appropriate and there wasn’t any need to admit him. (This changed by the time he was a year)

In the meantime we also had our initial visit at Holland Bloorview and found out about a monthly mom/baby group where it offered support to parents, education and an hour with all of our therapists (nurse, PT, OT, ST, SW). In May/June I talked with the physio at Holland Bloorview who offered to take us weekly to Holland Bloorview until we get picked up at Grandview.

It was hard to make the journey weekly through the summer and fall. It took about 1 hour to get there, 1 hour of therapy and 1 hour to get home. But we did it to get Nickolas what he needed. It felt like it took a whole day. We weren’t able to take Katheryn with us, so she stayed in daycare on those days. It was hard on our family because we were still trying to adjust having an infant, getting him what he needs, but balancing it with what the rest of the family needs, especially making sure that Katheryn didn’t feel left out.

It felt like we were making very slow progress, even though I knew that Nick had the ability to do things he just wasn’t doing it. He rolled over for the first time at 10 months. He stood up for the first time at 15 months.

 

When we found out that we had finally got picked up at Grandview I was really happy to get 2 hours of our lives back. But I was still afraid of losing someone who was so versed in spina bifida.

 

For the first 2 years Nickolas showed his stubborn streak. He hated therapy. He cried and screamed and often wouldn’t last the whole session without needing a break (or 2 or 3). Some days he refused to do anything by ‘hugging the floor’.

We had an assessment in the fall of 2010 and started a block of PT/OT in winter 2010/2011 when our block unexpectedly ended. Right when Nick was starting to do things (sitting unassisted, standing by himself for the first time). We were told we had to wait 6 months for more therapy because of restructuring – after 5 sessions since being picked up. I was furious, and upset. I didn’t know what to do.

I felt abandoned and lost and didn’t know where to go or who could help.

We started to investigate private PT services (and maxed out our benefits very quickly) as well as alternative therapy such as conductive education. We also had the opportunity to talk to PT and OT monthly at our mom and baby group. Nickolas was just getting used to having his AFO’s and standing frame, but at home we didn’t have the structured time that PT provided.

We were picked up again in July 2011, with a new PT, and I wanted a concrete plan and something to continue with at home. I wanted a walker. Together Melissa and Sheka worked with me over the rest of 2011 to get a walker that worked for Nickolas, we trialed a variety of different types through the preschool lending program. And in April 2012 Nickolas brought home his own walker, and he is now functionally walking with his walker.

Only in the last year or so Nickolas has started to click with therapy and realize it helps him to be independent. This year that he started to show some interest and went a whole therapy session without crying. He is starting to enjoy himself, to actually laugh! During physio! This last session has been the best yet, Nickolas is having fun and playing while working. No tears. Katheryn has also been able to come and join us.

It is as if something has finally clicked. Realizing that he can do the things that we are asking him.

Last July I had a goal to get Nickolas a walker. This was after our initial block ended. I wanted to have something to work on at home, a plan. Worked well together to help me to reach my goal and by April we had our permanent walker, so that the real fun/work can be done.

Currently we are completing a block of PT only therapy. We have been working with Sheka from OT from the beginning of our experience at Grandview, but she left us this past spring. Nickolas is doing very well with his PT-only sessions and has begun to enjoy himself. We saw our new OT in August and have been cleared to be reassessed in 4-6 months.

Over time I have found it difficult when we have an issue with services, or to know what the proper protocol is. There isn’t one person for us to go to with problems. If we are between services I need to find the letter that was last mailed, to find the most appropriate person to call if we have questions. We do not have a social worker at Grandview, but there is one at Holland Bloorview in the spina bifida clinic. A lot of times I use our infant development worker as the go-to person.

Through the SB clinic at Holland-Bloorview we would see our team monthly at groups, as well at have a clinic visit every 4-6 months. Now that Nickolas is almost 3 years old our clinic visits are going to be annually. They also cancelled our monthly group, so this summer I have lost a vital support network of families and professionals. I don’t see how Grandview would be able to fill in this gap. It was through reaching out online that I found about this opportunity to share our story.

During our initial intake meeting in February 2010 we saw the developmental pediatrician, Dr Hunt. We were told to follow up in 1 year. In January 2011 I phoned for an appointment and was told that we would be put on a waiting list “because of summer vacations”. I was still put on the list, but we were never called. We see the developmental pediatrician at Holland Bloorview in December 2011, as well as Nickolas’ own pediatrician. I was concerned about doubling up on services and talked about it with our pediatrician and never followed up.

 

During the summer of 2010 we also used the Audiology program. I started to get concerned that Nickolas wasn’t turning to look at me when I was talking to him. We were seen and assessed fairly quickly. And after 3 tests he was finally able to show that his hearing was appropriate.

Speech has been a journey. In February 2011, at 15 months we were reassessed for after noticing that Nick’s speech was severely delayed in his language (I don’t remember how long the wait was), and we were admitted to the service. March 2011 we were involved in a speech group. This group was difficult for us, as Nickolas had mobility needs and seemed so much younger than the other children that had more advanced issues. In the fall of 2011 we started some weekly individual sessions with Sabrina (sometime between the spring and fall we had a turn over of speech therapists).

Nickolas had always shown comprehension, but just didn’t talk. At all.

During the winter of 2011/2012 was when Nickolas really started to talk. And we just finished a reassessment in August with Sabrina and we are cleared for 4-6 months.

 We have already had experience with the speech services with Katheryn. I referred her to the speech and language program at 18 months old. At the time there was a 9 month waiting list. We have seen 4 or 5 therapists between both kids over the years. It wasn’t until the beginning of this year that Sabrina (Nick’s S/L) asked why we didn’t have both kids with one person. It made a huge difference to have one single speech person to see. We know that Katheryn only has 1 more year of service before she ages out. At the moment she still has what is categorized as a severe speech delay and waiting for a reassessment this month.

 

We have had a number of different experiences with Grandview. Katheryn has received good care with the SL program and I’m nervous about when she ages out.

I have been satisfied from the actual care we get from PT and how they really listen and respect what I want and work with me.
I have felt isolated through our experiences with Grandview. I only recently discovered that they have an orthotics clinic which would help us from needing to go to Bloorview for our new orthotics in November. The PT/OT combined therapy helped for continuous care. But the services don’t seem to work together for a team approach to our care. There doesn’t seem to be any kind of overlying person or group that helps to put everything together.

 

If I had a wish list to add to what we currently are receiving at Grandview:

I have looked into recreational programs but there has not been many opportunities we can participate in. I have looked into skating last year, and looked at swimming lessons but find dates difficult.

I wish there was more opportunities for support for parents through Grandview. When we first started at Grandview I contacted someone about the Parent to parent feature offered, but I never heard anything back. Through online support and the Bloorview group I know of 4 families who live in the Durham area who have children with spina bifida.

Thank you for giving me the opportunity to talk to you about our families experiences.

 

They really enjoyed hearing my story. They told me about some changes they are making that would hopefully address some of our past issues. I'm happy that I was given an opportunity to have a voice.