August Contest Winner- Thomas Family

Happy Tuesday! I am beyond excited to share with you the photos of the Thomas family that we took this week! But first, I would like to share the amazing story of this family's journey with little Vinny! Brittany Thomas is an incredible, strong, and amazing woman and mother! She and her husband Marvin are an amazing team taking care of their boys, and they are honestly an inspiration to watch! Here is their story: 

"Vinny was diagnosed with laryngomalacia when he was 8 weeks old. Laryngomalacia is an airway defect where the larynx doesn't fully develop, causing it to collapse when babies breathe in. This causes "stridor" which is a high-pitched squeaky sound made with every breath. I used to call Vinny my little goose, because the sound reminded me of a goose honk Most babies don't have further symptoms, however less than 5% will, and those symptoms will be life-threatening. Vinny fell into the 5%, with his laryngomalacia causing "failure to thrive", low oxygen levels, severe sleep apnea and feeding issues, in addition to the stridor. He ended up needing airway surgery called a supraglottoplasty. During this surgery, his ENT removed excess tissue from his larynx. Vinny first had this surgery at 8 weeks old. One unfortunate thing about laryngomalacia is that it gets worse before it gets better... and just under two months later we found ourselves back in the hospital waiting for Vinny to have his second supraglottoplasty. Vinny ended up with a total of three supraglottoplasty surgeries and consultations with multiple specialists (neurologist, GI, plastic surgeon, pulmonologist, geneticist), his ENT decided it was in his best interest to have a tracheostomy. During this procedure, his doctors would make an incision in his neck opening a direct airway through to his windpipe. On August 3, Vinny underwent surgery to place a trach. During this surgery, they discovered he also has tracheomalacia (the tissue of his windpipe collapses when breathing as well). Since his trach surgery, Vinny has been doing well! He is still struggling to gain weight, and may need a g-tube for feeding, but many of his other symptoms are gone. We are optimistic that the trach is temporary, and once he grows and is stronger he will be able to have it removed! Overall, Vinny has had four surgeries and spent about 40 days inpatient since March of this year. Through this all, he has been the happiest and most resilient baby! He has made our stressful moments easier and brings a smile to everyone who meets him!" 

 

If you would like to learn more about Laryngomalacia, you can visit: copingwithlm.org

 

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Jessica Scalf1 Comment