Deb here to give you some long awaited Ella updates…
What an amazing feeling to come home from work to a peaceful home with Ella resting, and Glen doing what he does best – being a dad!
It’s been months since I’ve heard what I am hearing now. Glen playing Ella lullabies on the guitar, helping her relax to go back to sleep – and then laughter. It’s been too long since I’ve heard that little girls laugh coming from her room, it feels good. It finally feels like home again.
Last Wednesday, January 12th, Ella was discharged from UCSF, and we brought her home. After 5 emotional months, we start this next chapter of our life.
I was luckily enough to ride in the backseat with Ella on her ride home from the hospital. Alycia drove us through the streets of San Francisco, across the Golden Gate bridge, through the Novato narrows and finally home to Petaluma. Ella had been at Alycia and Marks house the past 5 days, today she came home to Sebastopol. Glen has spent the past 5 days, scrubbing the house, organizing and decorating Ella’s room. He is a wonderful man, and a dedicated father; I’m lucky to have him, and Ella.
Ella has always had an awesome room at our home, filled with books, games, puzzles and art – Well this kiddo’s room just got a whole lot cooler. Glen has transformed her space into a visually stimulating & aesthetically divine, recovery room.
The ride home from the hospital was wonderful and memorable. I videotaped the majority of the trip, a few times I would put the camera down, Ella would turn and look at me, and say ‘Where’s the camera?’ – and as soon as I started taping again, she would start with the shy act. She is so funny, and I’m so thankful that even though she has physical limitations, her mind and spirit are intact.
I asked her ‘Are you glad to be home and out of the hospital?,’ and her wide eyed response was ‘Oh Yes! It’s much better, definitely Yes’.
Ella has a long road of recovery ahead of her. We are all hopeful, but only time will tell how much recovery she will make. She is getting stronger with each day, learning to use her hands, and strengthening her neck and shoulder muscles. One of her eyes is very weak, so she wears an eye patch to strengthen it. She is still being fed by the g-tube, but is able to have yogurt and ‘soft’ foods too. For now, she is mobile only by wheelchair and our arms. She will start out-patient physical therapy soon, but the most of the rehabilitation will come from stretches and exercises done at home with all of us.
Luckily Ella has four parents that love her more than anything. Mark & I (step-parents) are working the (out-of-the-home) full-time jobs, and trying to help with Ella as much as we can in our time off. Glen and Alycia are the real workers here. Their jobs just turned into being a 24 hour a day nurse to Ella, as well as trying to balance life.
We are all so thankful to be home and learning the new routines of finding ‘normalcy’ in our life; however, this next chapter, yet hopeful, is even more demanding – but of course, also very rewarding. Ella needs 24hr a day supervision, the only break you can catch is during movie time. It’s a challenge because we want to keep her motivated and gaining strength and not just laying in bed watching movies all day. She knows that getting better will be hard work, and our job is to keep her motivated and on track with a structured routine.
We’ll post updates & video weekly, if not more frequent.
Thank you to each of you for your love and support. We have so many people to Thank, that one of these days, I’ll dedicate a blog just to recognize some people that have changed all of our lives for the better.
UPDATEISH
Glen here, I wanted to add that Alycia and I took Ella to see the surgeons who saved her life, today. She didn’t remember them, and the full impact of this meeting won’t be felt by her, until years from now when she watches the video. However, Dr. Pang and Dr. Zovekion were moved and relieved to see her doing so well. Dr.Pang immediately went into doctor mode, checking her out, asking her to lift her arms, move her legs, etc. He addressed the paralysis that still affects the right side of her face and right vocal-chord; he said in a few months we can talk about surgery to try and repair the nerves in the face, if they don’t gradually come back on their own.
It was very emotional for me to see these men again and thank them for saving my daughters life. I have been waiting to do so for over a month now, going over what I would say time and time again, in my head. Of course the well rehearsed speech was condensed into “thank you for saving my daughters life, I owe you everything”. They are incredible men, scientists, doctors, humans. If it wasn’t for science my daughter would not be downstairs, in her room, laughing at her favorite movies, screaming for me to come down because she has something very important to tell me, which turns out to be “daddy has a half-brown eye” which is audible gold to me.
I’m the richest man in the world, without a penny to my name.
