Spina Bifida and Hydrocephalus Awareness: Week 3

This is the 3rd week of awareness. I didn't realize at the start just how difficult it would be to come up with 30 individual topics. But I still came up with stuff to talk about every day (and I combined 2 days because I was going to talk about the healthcare centres in one day, and doctors on the other day).

Spina Bifida and Hydrocephalus Awareness: Day 17

Siblings. Spina bifida has an impact on your family, both your life and your children’s. There is an impact on any family when a new child is born.

 We were told to consider the impact having a brother with spina bifida would have on Katheryn’s life. And when I was pregnant that was one of the hardest things. Katheryn was still a baby (there is only 19 months between them) and I worried SO much that I was taking away from her.

Now I can laugh at myself. There was no taking away from her. There was adding… multiplying! Nickolas has had a profound impact on Katheryn’s life. Not only are they always laughing and giggling away (when they aren’t yelling and hitting and teasing each other), but I can see how great they are for each other.
 

  
And if you want to see how sibling life is like in our house, this video from last year is priceless!

 

Katheryn is very in-tuned to the needs of people around her. Whether it is someone needing help on the playground, waiting her turn, carrying canes and crutches and backpacks, helping someone who fell down or getting help from an adult... Katheryn helps Nick, sometimes too much (like pushing the wheelchair when Nick is supposed to be moving himself), but doesn’t complain and likes helping.

 

                                                                                                                        

She is getting older and understanding more what spina bifida is (and very excited for our walk on Saturday). It is a balance of everything in life, that our world does not revolve about spina bifida, and just because this is what Nick was born with doesn’t mean he is any more or less special than Katheryn. So spina bifida and hydrocephalus awareness today is all about Katheryn!

 

Spina Bifida and Hydrocephalus Awareness: Day 18 and 19
We have been lucky to have reasonable access to a number of different healthcare centres and physicians that gives Nickolas all of the care he needs. I thought I’d combine the 2 days and talk about the hospital and doctors who are involved after a spina bifida diagnosis.

 We started off with Mount Saini, and their genetics clinic and their pregnancy clinic. It was the genetics doctor who was the one who organized everything for us in those first couple of days, to give us all of the information to make an informed decision. At the pregnancy clinic I was followed in combination with my own OB for all of my prenatal care for us and got us Nick was transferred out as soon as he was born though.

Then came Sick Kids. A world class hospital. Nick sees his neurosurgeon, Dr Rutka, through Sick Kids. For those first 2 weeks that was where he got all of his care, including the initial follow up with urology and plastics (for his scar). We still see neurosurgery every year for a check up and MRI.

Next was Holland Bloorview Kids Rehabilitation Hospital, we started there at 2 months old. This is one place to see everyone in clinic days. These days include Dr Church our developmental pediatrician who runs the clinic. We love her! We also see urology, orthopedics, psychology, as well as nursing, physiotherapy, occupational therapy and social work. These clinic visits are now yearly and include bladder x-rays and ultrasounds while we are there. We’ve also seen ophthalmology at Bloorview as well. We were seeing orthodics for the first 2 years as Bloorview.

At 1 year we got picked up by Grandview Children’s Centre in Oshawa (there was a yearlong wait list). There is a developmental pediatrician, as well as the therapist that I’ve talked about Day 12. We’ve started to go to Grandview for orthodics last year as it significantly cut down on our travel times and we found the care comparable.

To round out the picture Nick also has a family doctor (who we hardly see) and a general pediatrician, Dr Montgomery who keeps us on track and we see every 6 months. And we have recently started going to a kids dentistry clinic as we have found Nick’s teeth have developed a significant  number of cavities.

So if you are keeping track, that is 4 healthcare centres (and 2 additional individual clinics) and 13 doctors and all kinds of therapists. It may seem like a lot, but really it makes about one really busy month once a year.

Spina Bifida and Hydrocephalus Awareness: Day 20
When talking about awareness there are many different colours that signify to people that you care about something. And I thought that today being the opening ceremonies for world pride. Talking about colours would be fitting.

 Spina Bifida and Hydrocephalus awareness is traditionally yellow, and in some places teal.

So when you see me and wonder why the yellow nail polish and yellow socks, or the yellow ribbons on my car or front door. Yellow is the awareness colour for spina bifida
 

Spina Bifida and Hydrocephalus Awareness: Day 21

Awareness is putting yourself out there. So that is what we did today. We participated in our 5^th annual Spirit Wheel Walk Run for the Spina Bifida and Hydrocephalus Association. This event is organized every year through the month of June by different families in Ontario. That means that instead of one big event that not everyone can make it to, there are dozens of smaller events that are family friendly, personal and everyone who can make it attends.

Our walk this year we met a number of people who had questions and I had some pamphlets all ready. We also met another family who just happen to be at the park and their daughter also had spina bifida. And for our walk this year we had Nickolas, a friend from work and her husband who were all born with spina bifida.

We spread awareness in Oshawa yesterday, a couple of people at a time. And of course everyone who has followed these posts here on facebook!
 

Spina Bifida and Hydrocephalus Awareness: Day 22

Today is our anniversary (15 years) so I thought I would talk about relationships. The parental relationship… I am years away from thinking about Nick’s romantic relationships.

There is research out there that says that when you have a child with a disability that your relationship has a higher chance of ending in divorce. There is also research out there saying that when you have a child with a disability you have higher rates of depression. It’s a little bit scary to think that just having and loving a child with a disability has shown to have negative effects like this.
 

Having that knowledge is half the battle. Taking time for yourselves and recognizing that this time is important and enhancing the parent-child relationship as well. There are so many decisions that need to be made, and two parents to make the decisions right from D-Day. And that relationship and decision making (at least from my experience) helps when things get overwhelming.
 

Spina Bifida and Hydrocephalus Awareness: Day 23
Relationships in general are important. Social relationships and social groups.

When Nickolas was a baby I joined a mom and baby group through Durham Public Health, and it was one of the best things I did. Because Nick was still a little boy first.

It was a time to meet other moms and watch out children play together, talk about mommy things, make baby food, do stroller-fit, aqua-fit and baby salsa, and kinds of other things for new moms and babies to do together.

During that first year this social group was a life saver. After my maternity leave finished our group drifted apart with the idea that we would always connect again. Unfortunately we lost a very important member of our group last year. But the help that being just a mom of just a baby was invaluable.

One more week of awareness to go. I hope that it has brought more awareness and helpful information this June