We first featured Ameliya last year. Here is the link to her original article-
http://thegimpygirlwhocould.blogspot.com/2017/05/the-faces-of-guillain-barre-2017-day-4.html?m=1
It's been a year since we posted last about Ameliya, and almost 20 months since her GBS AMAN (acute motor axonal neuropathy) diagnosis. In one way, the year has gone by SO fast, but in other ways, the days, weeks and
months seemed to have dragged by. She has come a long way since her blog feature last year, but we still feel like we're stuck in everyday limbo, wondering if she's ever going to fully recover and walk unassisted ever again. We try to live our lives day by
day, focusing on the positive, but I won't lie, it's been tough!
Ameliya is now 4, and her younger sister Clara, now 2. With Ameliya getting older, she's also starting to understand that she's a bit "different" than other kids she sees. She has a lot of questions, for which we always give honest answers too, but with that being said, she hasn't let her feeling different, stop her from doing anything she sets her mind too! I honestly feel that we as her parents, are having a harder time than she is! We had this "vision" for our future, and when that changed 20 months ago, we really haven't been able to fully pick ourselves back up and start planning our new, modified future. But life must go on, and we really have accomplished a lot with Ameliya in the last year!
We hosted a huge GBS Awareness Fundraiser last May, that saw more than 300 people in attendance and raised $5000 for local children's hospitals and physiotherapy programs.
Ameliya took part in her first dance recital, where we saw Princess Poppy from the movie "TROLLS",
dancing to the song "Get Back Up Again", and I will tell you, there wasn't a dry eye in the house! That was a true proud mommy moment!
We bought a new camper trailer and went camping quite a few times last summer! Ameliya LOVED it! It was difficult seeing other kids on their bikes and running around, knowing Ameliya couldn't, but she did what she could, and always with a smile on her face!
Last holiday season we set out to raise money to put in a new accessible bathroom in our home, and selling my Christmas cookie packages, we made almost $6000 for our bathroom renovation, which is currently being completed as I type this! It will be so great for Ameliya to be able to get into the bathroom without her walker getting caught up on the door.
In January we went to Disneyworld in Orlando, Florida; a trip we had been planning since before Ameliya's diagnosis, but a trip that we refused to reschedule. We surprised the girls with the trip, just hours before hopping on a plane from Ottawa, Ontario, Canada. It was a tough trip, again, having that image in your mind of what things SHOULD be like, and what reality actually is, but how can I be kept in a funk when the smile on Ameliya's face never faded the entire trip?
Ameliya is now registered for kindergarten, starting in the Fall, and although mommy is having anxiety surrounding the idea, Ameliya couldn't be more excited. I honestly feel she's going to thrive in a school environment and feel she's going to make a lot of really great friends! Physically, Ameliya has come a long way in the past year, and although she's not where we would like her to be, we are more than thrilled with her achievements!
For the most part, when just relaxing at home, Ameliya will crawl around because it's what she's fastest at, and let me tell you, she is FAST. She gets up in her braces and walker multiple times a day; but would much rather crawl around and play on the floor with her sister. She's now able to get herself up onto the furniture from the floor, as her upper body strength is more than what it was before she got sick.
Her left leg has come a long way, but oddly enough, we are still waiting for the quad muscle to reconnect to the nerves. We have been in discussion with her main Neurologists as well as the Pediatric Plastic Surgeons at the local Children Hospital about the possibility of a nerve transfer to get that quad back connected and starting to strengthen.
The right leg is coming, again, not as quickly as we would like it too, and to be honest, we don't know how much more recovery that right leg has left, but we still have hope that with Ameliya's young age, fight and determination, she will get more strength back!
Her orthopedic surgeon was concerned about the hip on the right side, and so they created a new brace for Ameliya that goes right from her hip, wrapping around her waist, and down to her ankles. It's extremely inconvenient to get on and off, but Ameliya's hip is getting better and is no longer moving around so much in the joint when she takes steps. Speaking of steps, Ameliya has taken 13 steps on her own in the braces, not holding onto anything! That's huge! We've come to terms with the fact that she may need some form of leg brace for the long term, but if we can get her walking without the use of walking aids, I will be a very happy mommy. Right now she primarily uses her walker and has also started mastering the cute little walking sticks! When in her walker, there's no stopping her, she's almost running! We take her to our local mall every sunday, so that she can basically run laps and get out some of her crazy energy! Everyone that sees her is just amazed by how great she's doing and we couldn't be more proud!
This bump in Ameliya's life journey is merely that, just a bump, and she's overcoming it beautifully, while inspiring thousands of people at the same time!
We're in the middle of getting ready for our fundraiser in a couple of weeks, where we are once again raising money for our local children's hospital and physiotherapy program, and this year we're hosting a Roll 'N Stroll, where Ameliya will lead the pack in laps, and raise awareness for GBS every step she takes!
This summer we have many camping trips planned, a big trip our to Nova Scotia to see her grandpa and in November we will be flying down to San Diego to the GBS Symposium to hopefully meet up with many other families who's lives have been affected by GBS, and create some new friendships and bonds! It's hard to talk to just anyone about GBS when they haven't been through the experience themselves, so we're very excited for November's trip!We're also hoping to meet up with a few doctors while we're down there to see about getting some advice on Ameliya's recovery, as it hasn't been the typical GBS recovery that we were told it would be from the beginning. We just keep being told she's "The rarest of the rare", and that's hard to hear when there's no answers to our questions. We're hoping to talk with some doctors who may have some answers for us. Until then, we will keep living our lives, one day, one step and one silly little nerve at a time! Ameliya has already come so far and has been through so much in her 4 years of life, I can't wait to see where this next year will take us ❤ She dances in her recital again in a couple of weeks to the song "I Hope You Dance", again, I am positive there would be a dry eye in that theater! Ameliya speaks through her dance and her movements and expressions, and it just amazes me everytime. I said last time that I believe in everything happening for a reason, and while, a year later we still don't have an exact reason, I'm starting to see a bit of the light.
Ameliya is now 4, and her younger sister Clara, now 2. With Ameliya getting older, she's also starting to understand that she's a bit "different" than other kids she sees. She has a lot of questions, for which we always give honest answers too, but with that being said, she hasn't let her feeling different, stop her from doing anything she sets her mind too! I honestly feel that we as her parents, are having a harder time than she is! We had this "vision" for our future, and when that changed 20 months ago, we really haven't been able to fully pick ourselves back up and start planning our new, modified future. But life must go on, and we really have accomplished a lot with Ameliya in the last year!
We hosted a huge GBS Awareness Fundraiser last May, that saw more than 300 people in attendance and raised $5000 for local children's hospitals and physiotherapy programs.
We bought a new camper trailer and went camping quite a few times last summer! Ameliya LOVED it! It was difficult seeing other kids on their bikes and running around, knowing Ameliya couldn't, but she did what she could, and always with a smile on her face!
Last holiday season we set out to raise money to put in a new accessible bathroom in our home, and selling my Christmas cookie packages, we made almost $6000 for our bathroom renovation, which is currently being completed as I type this! It will be so great for Ameliya to be able to get into the bathroom without her walker getting caught up on the door.
In January we went to Disneyworld in Orlando, Florida; a trip we had been planning since before Ameliya's diagnosis, but a trip that we refused to reschedule. We surprised the girls with the trip, just hours before hopping on a plane from Ottawa, Ontario, Canada. It was a tough trip, again, having that image in your mind of what things SHOULD be like, and what reality actually is, but how can I be kept in a funk when the smile on Ameliya's face never faded the entire trip?
Ameliya is now registered for kindergarten, starting in the Fall, and although mommy is having anxiety surrounding the idea, Ameliya couldn't be more excited. I honestly feel she's going to thrive in a school environment and feel she's going to make a lot of really great friends! Physically, Ameliya has come a long way in the past year, and although she's not where we would like her to be, we are more than thrilled with her achievements!
For the most part, when just relaxing at home, Ameliya will crawl around because it's what she's fastest at, and let me tell you, she is FAST. She gets up in her braces and walker multiple times a day; but would much rather crawl around and play on the floor with her sister. She's now able to get herself up onto the furniture from the floor, as her upper body strength is more than what it was before she got sick.
Her left leg has come a long way, but oddly enough, we are still waiting for the quad muscle to reconnect to the nerves. We have been in discussion with her main Neurologists as well as the Pediatric Plastic Surgeons at the local Children Hospital about the possibility of a nerve transfer to get that quad back connected and starting to strengthen.
The right leg is coming, again, not as quickly as we would like it too, and to be honest, we don't know how much more recovery that right leg has left, but we still have hope that with Ameliya's young age, fight and determination, she will get more strength back!
Her orthopedic surgeon was concerned about the hip on the right side, and so they created a new brace for Ameliya that goes right from her hip, wrapping around her waist, and down to her ankles. It's extremely inconvenient to get on and off, but Ameliya's hip is getting better and is no longer moving around so much in the joint when she takes steps. Speaking of steps, Ameliya has taken 13 steps on her own in the braces, not holding onto anything! That's huge! We've come to terms with the fact that she may need some form of leg brace for the long term, but if we can get her walking without the use of walking aids, I will be a very happy mommy. Right now she primarily uses her walker and has also started mastering the cute little walking sticks! When in her walker, there's no stopping her, she's almost running! We take her to our local mall every sunday, so that she can basically run laps and get out some of her crazy energy! Everyone that sees her is just amazed by how great she's doing and we couldn't be more proud!
This bump in Ameliya's life journey is merely that, just a bump, and she's overcoming it beautifully, while inspiring thousands of people at the same time!
We're in the middle of getting ready for our fundraiser in a couple of weeks, where we are once again raising money for our local children's hospital and physiotherapy program, and this year we're hosting a Roll 'N Stroll, where Ameliya will lead the pack in laps, and raise awareness for GBS every step she takes!
This summer we have many camping trips planned, a big trip our to Nova Scotia to see her grandpa and in November we will be flying down to San Diego to the GBS Symposium to hopefully meet up with many other families who's lives have been affected by GBS, and create some new friendships and bonds! It's hard to talk to just anyone about GBS when they haven't been through the experience themselves, so we're very excited for November's trip!We're also hoping to meet up with a few doctors while we're down there to see about getting some advice on Ameliya's recovery, as it hasn't been the typical GBS recovery that we were told it would be from the beginning. We just keep being told she's "The rarest of the rare", and that's hard to hear when there's no answers to our questions. We're hoping to talk with some doctors who may have some answers for us. Until then, we will keep living our lives, one day, one step and one silly little nerve at a time! Ameliya has already come so far and has been through so much in her 4 years of life, I can't wait to see where this next year will take us ❤ She dances in her recital again in a couple of weeks to the song "I Hope You Dance", again, I am positive there would be a dry eye in that theater! Ameliya speaks through her dance and her movements and expressions, and it just amazes me everytime. I said last time that I believe in everything happening for a reason, and while, a year later we still don't have an exact reason, I'm starting to see a bit of the light.
