Neither Adrian or I are from the big city. And after we had kids, I always wanted to move back to a smaller community. But we relied so much on Children’s Hospital how could we ever leave? At times when Naya got meningitis we lived at the hospital for up to 2 months straight. The thought of moving away scared us and really, it didn’t seem possible. So I set a goal. I said if she ever reached 3yrs surgery free. We would consider it. At that time, the longest she’d ever gone without surgery was 18 months.
Her last surgery was September 26, 2018 🙏So in March 2022 we decided it was time. Time to realized that she was stable. Stable enough to live away BC Children’s Hospital and from our beloved medical team. Time to start living our lives.
Within weeks of our decision, we sold our house and we started looking for a new home. That was the most difficult part. And not just for the reasons you’d think. For us we had additional concerns. Was it close to a hospital? How was the ambulance response times in that area? Was the fire hall permanently staffed or was it based on volunteers? Which hospital was best for pediatric care?
Fast forward through the summer. It is now September. And we are in our new home! We are still settling in and adjusting to the new city. The girls start their new school next week! Our neighbours have been wonderful. Only time will tell if this was the right decision. But for now, the girls are happy here. What more could a parent want? ❤️
We knew Naya was going to have challenges in school. Even in preschool, she had a designated support person to help her with her social interactions, her safety with manuveuring stairs and outdoor play time, and also her learning and development. But it wasn’t until Kindergarten that we realized where her strengths and weaknesses lied.
As she progressed into Grade 1 and Grade 2 we started noticing patterns. She could recall peoples names who she had just met briefly, but when it came to remembering our phone number she had troubles. She always scored 80-100% on spelling tests, but would have troubles recalling what 1+0 equalled.
We noticed she would ask the same questions over and over again, even though she knew what the answers where. We suspected she had ADHD (Attention Deficit Hyperactive Disorder), but a lot of children at that age fidget and can’t sit still anyway so maybe it was normal.
Finally, in 2019. our paediatrician sent Naya for a NeuroPsychological Assessment at BC Children’s Hospital. We wanted to know exactly how her brain worked so that we could equip ourselves with the tools to help her succeed. And the results were very interesting!!
Naya’s official diagnosis is Right Brain Hemisphere Brain Damage and, as we suspected, ADHD. Her brain bleed was on her right side. And most of her brain surgeries were done on her right side, so we were not surprised. But what did that mean?
It became very interesting to learn about the different sides of the brain and what functions each side is responsible for. Based on her test scores, she was “text book” for right side brain injury. The right brain controls the left side of the body, attention, memory, reasoning, and problem solving. All of the areas we noticed weakness.
Strengths – Naya scored high, Average & High Average, on Verbal Intelligence (58 to 84%). She excels in verbally identifying similarities between words an ideas. She showed strength in the ability to learn and remember things she hears. This explains why she can recall names so well.
Challenges – Naya scored extremely low on reasoning and problem solving. When given a set of shapes in a set pattern, she could not predict what the next shape was going to be – for example O O A A O O ? ?
Her memory for visual information was Extremely Low (less than 2%). When shown a geometric design, she couldn’t recall major details of the image. Also part of the right brain, Naya is not good at reading facial expressions and cues.
Naya also shows significant weakness on the left side of her body. She can not stand on one leg using her left leg. As a baby, her left arm was significantly smaller than her right.
Overall these results did not surprise us and we are very happy with the results and recommendations. It became clear why she is so good at some things, but not good at others. It confirmed our suspicion of ADHD and it eliminated our curiosity if she could be autistic.
I know labels are not always a good thing, because you put assumptions on those labels which may not always be accurate. But for us, it gives us the tools we need to help Naya with her struggles and to reinforce her strengths.
Monday morning Naya woke up with a stomachache. Next thing I know we were kneeling at the toilet and she was vomiting.
Teya asked if she should go wake up Dad and I said yes. And with the whole family gathered in the bathroom, Naya asks “where’s Teya?” Teya was standing right there but she couldn’t see her. Naya was about to have a seizure.
The next 10-15mins went by in a blur. Adrian’s mom was in town so Teya jumped into bed with her. Adrian carried Naya down the stairs while I frantically drew up the seizure rescue medicine.
Naya was in and out of consciousness. She soiled herself which is common with a seizure. And then she started turning blue.
We now had Winston our Labradoodle. And this was his first test. Under the pressure he did exactly what he was supposed to do. He sat next to her and gave her comfort. He stayed calmed. During her stages of consciousness, she had her hand on him and was rubbing him…he was giving her comfort. ❤️
The ambulance came and instinctively Winston became protective. He stayed under her stretcher and didn’t want to budge even when it came time to wheel her away.
Adrian and Naya left. And within minutes, Winston started throwing up from the stress. 💔
Our little 14.5 week old puppy. He was chosen specifically for this job – to help when Naya was in emotional and medical distress. And he did a fabulous job. Our boy. He is perfect. 🥰 🐕
The puppy is a third child. Still potty training. Still has his sharp baby teeth. And yes, there is such a thing as puppy witching hour. 😈😱
But aside from an exhausted mom and a tornado of a house. Winston is a great dog.
He loves people. Especially kids. And he loves other dogs. He is social. And very out going.
He has met probably 50-60 dogs in the last 3 weeks and easily over 100 people. Including about 20 daycare kids and 30-40 elementary school kids. How does he react? He just sits there and soaks it all in.
I am so excited a new year has started. I will not go into the details except to say 2018 was easily the hardest year we’ve been thru….But enough of that!
We have decided to add a dog to our family! 🐕 🐶
Naya and Teya have always loved dogs. And from all the Therapy Dogs we’ve met at BCCH, we have seen how beneficial adding one to the family can be!
Our requirements: Smart. Non shedding. Small to Medium size. Calm enough for a special needs child, but playful enough for a 7yr and 4yr old!
Its a lot harder than we thought it would be.
We tried a rescue first. And finding a non shedding rescue is rare. A couple weeks ago we thought we had found one! Walter. A Maltese Terrier cross who was being given up by a local owner. 2.5 yrs old and hypoallergenic. We applied. And we got chosen! We were getting a dog and we were so excited!
We took the kids to have a meet and greet with Walter. To see if he had the right temperament. He was excited to see us! We gave him lots of pats and ear scratches as he greeted us…and in the first 30secs there’s short dog hair flying in the air and all over Adrian’s black pants. We looked at each other with sullen faces. This wasn’t our dog. Sorry Walter. 😔 💔
I have been MIA in here and I apologize! Things with Naya have been going so well I admit I’ve been a little afraid to talk about it. 😬🤞🏼 (Knocking on wood)
Since Naya’s surgery end of September we have watched her bounce back and blossom. The light has come back in her eyes. She is articulate and will say intelligent and quirky things – which make Adrian and I laugh and say to ourselves “Our Naya is back!” 🥰
We have not had an MRI to see how the fluid mass is shrinking, but at this point we don’t care. She is flourishing and happy. What more could a parent ask for? ❤️
2.5 weeks since our last surgery and I’ve just been trying not to think about it.
But what inspired me this past week was seeing Princess Eugenie proudly embrace her scoliosis surgery scar on her wedding day.
Naya has significantly more scars now. She doesn’t like them. The ones in her tummy especially. She hates seeing them. I haven’t done a recently tally but we are close to 20 scars now.
She is getting to an age where she is more aware of herself. She touches the scar on her scalp when she looks in the mirror. She doesn’t like me looking at the scars on her tummy.
My hope is that one day she will wear her surgery scars proudly. That she’ll realize they tell a story of how strong she is. And how amazing and blessed she is. That her scars are beautiful. And she is beautiful – inside and out. ❤️