On May 5th, 2014, Malena Lola became trach free. It was a moment that liberated us on so many levels.

Malena Hawaii

Malena Lola was able to experience her neck free of the trach, the trach ties, the speaking valve. She was able to finally breathe through her upper airway, to experience inhaling and exhaling through her mouth and nose. She was able to experience speaking without a speaking valve.

Breathing. Speaking. On her own.

It’s amazing how such simple actions that we perform everyday, hundreds of times, can have such powerful meaning.

I will forever remember watching Malena Lola see herself in the mirror without a trach for the first time. She kept staring at the stome – the hole in her neck where the trach used to be. She touched it. She lowered her chin and touched her neck with it. She wasn’t able to do that before. Her chin would always touch the trach instead. Now her neck was totally free and she was exploring what that felt like.

It was magical and fascinating to watch her explore her new trach free neck.

It was even more magical and moving watching her explore her voice, her speech.

I still get teary eyed sometimes when I hear her say “mommy”. I feel so blessed to be able to hear my daughter’s voice.

And even on days when I am so tired I can hardly think anymore…even on days where the idea of being stranded on a desert island seems just about perfect…even then, when I will hear my little girl call me “mommy”, I remember how precious it all really is.

Her voice.

Her mighty spirit.

Her breathing.

Her existance.


This very moment.

Right now.



Off to the beach!

It’s been months since I have written a post. So many amazing things have happened. Malena Lola turned 3 years old this past April 25, 2014 and she is speaking!

It’s been quite the journey to get to this stage…last year I felt Malena Lola was ready for her airway surgery, but her doctors were reluctant for no clear reason…finally I requested a meeting and demanded clear answers. They had none. I insisted and finally they all agreed that there was no real reason to wait. The surgery was finally scheduled.

It never ceases to shock me how much I have had to push doctors to do what is needed…anyways…

Malena Lola’s final big surgery was last September 2013. She had airway reconstruction surgery which involved lasering the scar tissue obstructing her upper airway and then taking a tiny piece of one of her ribs to shape a tracheal ring. This ring was then placed in her airways to open it up to the size it should be for her to breathe through it.

The surgery itself took about 3 hours all together and was very successful, however the five days after the surgery were the hardest of my life…

After the airway surgery Malena Lola had to remain sedated and paralized in order for her airway to heal properly. It was critical that she did not move at all.

As always, I stayed in the hospital with her, in the PICU. Those five days were extremely difficult because it was very hard to see my very active little girl sedated and paralyzed. And the worst of it all was that she got a lung infection which was hard to treat due to her sedation and all. I stayed with my little girl day and night. I remember feeling so responsible for what she was going through because I had insisted on the surgery…I had to chase away the fear of losing her and remind myself that she was a strong little girl, a warrior, and that all would be fine.

After five sleepless days, she was ready to come out of sedation and paralysis. I couldn’t wait to see my little girl open her eyes and smile again.

After she woke up we spent two days helping her swallow and making sure she didn’t choke.  More sleepless nights but all worth it. Malena Lola was awake, moving, smiling and finally eating again. We could now go home. The surgery had been a complete success.

Now that her airway was repaired, she could start wearing a speaking valve! I had been dreaming with the day I could hear my little girl’s voice for almost 3 years!

I will never forget the first time she made a sound. Sweetest voice I had ever heard. I cried with so much gratitude and happiness!

I remember being amazed at the fact that we could hear her sneeze, cough, laugh, cry…such simple things that we cherish so much.

Malena Lola  took to speaking right away, she immediately loved being able to be vocal.

Her first word was “Booba”, as she loves breastfeeding…and her second word was “teta” which is booba in Spanish.

But something even more amazing happened just this past May 5, 2014 – Malena Lola was successfully decanulated! She is finally trach free!

There were many times when I wasn’t sure if I would ever hear my little girl’s voice or if she would ever be trach free. Now that has all finally happened and I am thrilled for what this new stage will bring.

Malena Lola continues to live each day to the fullest. Never letting anything stop her. She is the most inspiring and joyful spirit I know. She is speaking more and more each day in both English and Spanish. The sound of her voice never ceases to amaze me. I am forever grateful for the journey that brought us to this day.

lola decanulated

Malena Lola is free to sing and fly!

We are off to our first family vacation since Malena Lola was born. We couldn’t be more excited. Off the beach! Ocean here we come!