It has been awhile that I haven't sat down and poured my thoughts into the blog.
Truth is we have been busy and at the end of the day was too exhausted to update on the little one.
Since September 2015, we have moved to a new home, changed school, Naylah has been catching the bus back home and have been at the doctors non-stop.
Miss Naylah is loving to have a backyard - it's absolutely one of her favorite things ever.
My sister and her better half came for a visit and got Alex and Naylah a trampoline since then, I am loving to watch sister and brother bond .
The older Alex is getting the sweeter he is with Naylah. He helps her out, understands her as much as I do. He has been an amazing helper, and her she is in awes in front of him.
I love how he protects her when his neighborhood friends ask about Naylah - such as why she is wearing an eye patch ? Why is she making so much noise? And what's that in her belly? He always gives out the best answer E V E R. Thanks buddy, you have a huge part on Naylahs milestones achievements.
We were sad to change school, but since we moved we didn't have much choice. I was scared at first but her teacher is as amazing as the previous one.
Naylah loves catching the bus home. It's giving her more independence and I love how when the bus park in front of our home she always peeks to see if we are there.
Naylah reflux still hasn't gotten better so in December of 2015 we decided to go for the Nissan procedure to try to block reflux and also see if we could see improvements on stridor and liquids found in lung.
We are now weaning her off reflux medicines and go back next week for a bronchoscopy and endoscopy performed by gastroenterologist and pulmonologist. We are hoping for good results and improvements and to finally catch a little break from hospital testing.
I had forgotten how it was like to sleep in a hospital bed, be awaken by all hours by nurses that needs to do their assessments , to be in a close wall while your child is in a bed with monitors on. Luckily we got to go home after 3 days inpatient.
It feels lonely in there, as busy as it is with doctors and nurses in and out, and how well everyone is familiar with a child , a hospital is a hospital . You stay away from your home, one of the spouses need to care for the other child(ren). And it honestly gives you too much time to think.
Think of how it would be nice to never know this medical world, and then you look around you, the rooms next to you and see another parent there alone as well, holding their child hand, trying hard to make it seem like home as you possibly can.
Naylah got featured in a calendar by happy soul project. Tara is a mom of a little one who happens to have Down syndrome. This year it was all about #differentisbeautiful and Naylah showed well that indeed it is. We were so proud that she got chosen to be part of the project.
In my end, this mama here will try to write more.
In the past few month I have gotten many emails from mothers who just gotten a diagnosis similar to Naylah, and I feel privileged to be able to read their stories. I know their stories because of Naylahs website, they shared their fears with me, their joys, the unknown that we know all too well.
And each email I have received made me realize that Naylahs story is helping another person. So I will continue to share our ups our downs and share her story with you.
I know it's already February but wanted to wish you all a happy new year.