A Positive Story. A Thriving Baby.

In February of 2023 Livi had her feeding tube surgery, she was now getting nutrition to meet her growing needs. In March she began therapies. Therapies included physical therapy, occupational therapy, and speech therapy through our local hospital’s outpatient rehabilitation center. We went in for her initial evaluation to determine frequency of visits. We started with two times a week for each discipline. At this time Livi is 6 months old and has no head control, not sitting at all, not reaching for her toes, not consistently tracking objects, not sucking a bottle, not grasping toys. Livi was here for the snuggles, she was born to give you your best hug ever. But the time to work diligently had began.

Along with my nightly google searches I also looked for help. Not just answers I feel I will never get, but help. Our wonderfully amazing pediatrician had referred us to the outpatient rehab for therapies but what else was there? Through each state there is a program called early interventions. We had a virtual zoom meeting to show them Livi and get an evaluation from them as well. They would send someone out to your house until your baby is of age three. I was a little apprehensive to have someone come into my home, so I drove to meet her early intervention specialist at a center. We had a wonderful visit. There are some that are nervous around babies. By babies I mean a six month old baby that feels like a newborn. This was not the case, I met my new best friend. My very own therapist she would become. This specialist came into my life at the right time. She too has a son of disabilities, he is in his teen years. She has been where I am, she knew my heart. Not only does she understand, she is also an extreme advocate for these babies. After our first visit I felt completely confident in having her come each week to work with Livi. She always brought in ideas and toys that I had not considered or knew about. With Livi not tracking objects consistently she was knowledgeable about different vision needs and began to work with what colors it appeared Livi could see. She had these little rings, extremely light weight and small. It was the only toy Livi ever held in her hands. She would ever so slightly grasp them. Each toy that Livi appeared to be interested in she left, she let us use and work with Livi. In this smallest gesture such as lending us toys it made my heart explode with gratitude. We were working together. Everyone wanted Livi to thrive. Not just survive, but thrive and be her best self. Our meetings each week became an anticipated visit, I often joke that she is more than Livi’s therapist. She is mine.

I am known to be “extra” when it comes to both of my babies. There were times I would ask her early intervention specialist if I was being too much, because I know I can be, and she always always reassured me that I am Livi’s advocate. It is never too much. At this time we had many doctor visits, between New Orleans, LA and Jackson, MS as well as our hometown; before each upcoming visit I would review the topics or questions I had listed to discuss with each doctor and asked if there were anything she noticed that I needed to include. She was not just helping Livi, she was helping me.

With each new diagnosis you get of your child, it sets you back. Whether you knew in your heart it was coming or not, it still hurts. We had the bulk of Livi’s diagnosis but there were the occasional add ons. It hurt, it took me time to mentally overcome. Life is what we make of it, and I am determined to make this circumstance, this challenge into a positive life. A positive story.

Livi’s diagnosis were detailed in a previous blog, but at this time we were battling gross motor delay, failure to thrive, oropharyngeal dysphagia (difficulty swallowing), and of course the severe obstructed sleep apnea. Physical and occupational therapy were diligently working on Livi’s strength. Speech therapy was working on Livi’s suck, swallow, breathe coordination. They were trying to teach Livi to suck a bottle. Her early intervention specialist was working on Livi’s tracking and vision improvements. I found my new home away from home. It was not the beach house we all dream of, it was a room designated to us in the outpatient rehab center. We spent hours multiple days a week in this room, tossing ideas between each other and working diligently for Livi to thrive.

Thrive she began to do. It was now April and we decided to have Easter out of town with my husbands family. So we packed up our entire house and drove four hours. When we got there it was a fun time loving on Livi, holding and passing her around. Again, night came. There was something we packed and never used. It was her portable oxygen concentrator. The night of Easter we connected Livi to her pulse oximeter to monitor her breathing. We were waiting for her to obstruct from her sleep apnea and then we would tape on her nasal cannula that would give her oxygen to breathe. That moment never came, Livi did not desat. Not once.

There was a new energy present, we told everyone who would listen to us! Livi did not need oxygen last night!!! The next night came, same regimen. Again, she did not desat. Her oxygen levels were maintaining. I am writing this many months later, and I can again exclaim Livi does not need oxygen! Not awake, not asleep, not at all!

We still continue to monitor her on her pulse oximeter machine each night, it also brings reassurance from the traumatic times we did endure. The pulse oximeter is a small piece of sticky tape that wraps her foot, this is all she sleeps with. Almost six months since her last desat, I do believe in my heart she has outgrown her obstructed sleep apnea. A later sleep study will be completed to confirm, as it has not quite been a year.

I am so thankful for all of those who have prayed for Livi or found interest in her story. There is more. There is hope. There is light. There is strength. There is growth. I leave you with this today, Livi can breathe!!