2014 has been great. Naylah had only 2 surgeries for her ears and we were in and out in no time. She didn't have as many Emergency trips like we had in the past. She had many procedures and test done but I am thankful for less hospitals stays.
We once felt like we were there a whole lot. You feel helpless because you can't do anything to make your child feel better.
In 2014, our main health issues was and still her stomach. She was diagnosed with pancreatic heretopia ( pancreas tissue in stomach), has had bad vomiting and sometimes she just put herself in a ball on the floor and locks her whole body. We are hoping for better answers in 2015.
In 2014, we had to say goodbye to our amazing speech therapist due to her move out of state, but we will forever be thankful to have had her in our lives. She came at the right moment, where I felt lost and all this special needs parenting was still so new to our family.
We also got introduced to new therapists and oh my we are lucky. They are all amazing and most important of all, my child loves them.
2014 will be memorable no doubt on that, Naylah took her very first steps and each day is only getting better. Seeing her walk for the first time without her walker was magical. So many happy tears were shed. We were waiting for that moment for so long, and it finally happened. Some specialists said she might never walk, she sure proved them wrong. By her walking improving, we also had to let go our in home physical therapist so she could go in a clinic and get better practice with different equipment. We all knew that's what was best for her.
She also got to visit the beach for the very first time and she absolutely loved it. ( she ate plenty of sand & salty water)
She showed us that she can eat anything even if it's a small amount. To us, even the smallest amounts give us hope that she might not depend on her feeding tube her whole life.
In 2014, we were touched by all the amazing people there are out there.
Non-profit companies such as tiny superheroes, Peach Neet feet, David's box of sunshine project, binkeez, I run 4, and all the amazing people that showered Naylah with love by their amazing work that truly come from their heart.
Strangers, that take the time to do something amazing for our children and make them feel so important in a world that differences is not always recognized.True act of kindness that I will be forever thankful.
In 2014, I was too worried about how people look at my child so differently. How they notice her differences and give that "sorry" look. As a mother, you want to protect your child the best way you can. I kept too many feelings in and honestly, there is no need for "sorry" stares. My child is exactly who she is suppose to be. Her rare genetics define her as her own little self. She is the happiest child I know. She is who is suppose to be. She is loved, she is bright, makes us laugh, is the best huger ever, is sassy, knows well what she wants.
My motto for 2015 is to worry less about what people think, how they judge.
In 2014 I decided to write Naylahs blog, in hope to one day help another family with the same diagnosis. Help someone that is new to this whole special needs parenting thing. I am proud of the outcome, I have had many families reach out for answers even if their child does not have trisomy 5q. Families from different part of the world asking for advice, sharing their fears.
I was able to tell my daughters story. Our main issues, what is it like to live with someone truly unique and that is okay to be scared. There is nothing wrong being scared of the unknown, not knowing what tomorrow will bring, not having an estimate time on when a new milestone will happen.
What matters is your child knowing you are there no matter what, and that you love them no matter how difficult the road may be.
Starting the blog, was the therapy I needed to accept all her differences. I could write from the heart, let things out, share my scares, my moments of pride.
The most difficult part to me from that whole special need thing was acceptance. Today I can definitely say I do. I still have my moments of doubts but who doesn't? Moments where I wonder if I am doing the right thing, making all the right choices, doing what's best for her. It's a full time job being your child advocate. Keeping up with all the doctors appointments, therapies, medical supply, making a schedule to fit everyone in, dealing with insurance to make sure your child has all she needs and In between find a little time for yourself.
That's another thing on my list, making sure I take time for me, because it's only with a rested and healthy mama that you can make the best choices for your kid. Stress less over small things.
2014 has been the best year for my child, she got a medical team that follows her and are there to make sure she got all the care she needs. I know exactly who to reach out for, when she needs it.
2015 has been a great start for us, Naylah cardiologist that has been following her since my 20 weeks check up let us go. Not going to lie, I will truly miss him, he is the reason why Naylah got a genetic testing. He is the one who noticed it was more than a heart issue, that something else was going on, and he was so right. I'll be forever thankful to this doctor for paying attention to small details and now Since her VSD repair is looking great, he doesn't need to see us anymore unless her heart specialist says otherwise. Naylah tachycardia is still controlled by daily medication. Well it was until January 16th. She is now off of it and soon we will be going regularly to the doctor office to get a 24 hours heart monitor to keep a close eye on it. With hopes, she won't do us any scares like we had on October 2013 when her little heart went on the 240+ after waking up from anesthesia and bought her a ticket for a 5 days stay at the hospital. We are hopeful that this year will be different and she will do great without her heart medicine. *positive thinking*
Our 2014 ended in the best way ever, my parents came to visit, Naylah got to spend time with her grand-parents, we sure had missed them. With all Naylah's health issues we haven't had the chance yet to go overseas. It was mind refreshing having them over, watch my mother entertain with my child and love her the same way I do. I hope they will come back soon.
We also had this beginning of the year, our first meeting to Naylah Pre-school program for special needs children which she will be able to attend as soon as she turns 3, meaning only 4 months away.
I am NOT ready for that just yet, see her go to a special needs classroom. It's just a bit overwhelming, that wasn't how I had pictured things. But, that's another story for some other time. I know Naylah will love it, at the end it is all that it matters.
2015 hasn't started with all happy news... this week, our dear occupational therapist told us she will be moving out of states for a better opportunity for her family. I am sadden and I know Naylah will miss her dearly. She has been great with us, with her and truly cared for my child. She is someone who truly loves her job and care for the kiddos she works with. She has that passion for what she does. Changes is part of life, and oh the changes we've had for those almost 3 years. Change is a reminder to enjoy it all; the good therapists that comes and show you what to look for if when looking for the new one even when you think you will not be able to find someone as great for your child. Change is a reminder to turn the bad days into good ones, change what you dislike.
Change is a constant reminder to truly enjoy it all. Thank you Jennalee for being part of our journey for 1 year, for being so great and for loving my child, for all the progresses she made. We will truly miss you!
2015 is finally here, we hope you have an amazing year with many blessings your way.
( better later than ever, here we are welcoming February and I am just now posting this. Our year started busy, hope you can forgive me.)