DSDN Blog Corner: A Surprise Hard to Swallow

feeding issues down syndrome

After finding out about Liliana’s diagnosis, I started imagining how her life was going to be; how long will it take her to learn to walk? Will she dance? Will she swim? Is she going to like all the things we like to do? After reading books, we were prepared to work really hard on her gross motor skills, we were ready to rock that extra chromosome. But I never stopped to think about little details like, when will she laugh or will she be able to breastfeed?

It’s been 20 months and every day she surprises me. She surprises me with how well her gross motor skills are developing, we are so proud and happy of that, but what keeps surprising me the most is her feeding skills. When I was pregnant I imagined myself breastfeeding her, because I grew up watching my cousins and aunts do it. Because of those experiences, breastfeeding was the normal thing to do for us. Well not so normal, because breastfeeding is incredibly hard. Breastfeeding was especially difficult for Liliana because of her low tone in her mouth muscles. Unfortunately, she wasn’t able to latch and breastfeed, which was a very heartbreaking moment as I was really looking forward to that. Instead, she has been taking a bottle since she was born.

I pumped for 11 months and it was a very stressful time, but extremely rewarding as well. She tried her first actual solid food when she was 13 months, because every time we tried to introduce her to something chunkier than her usual pureed food she would gag. I never realized how hard it was going to be to teach her how to chew and swallow solids, so of course a big milestone was when she had a piece of a veggie straw and then a piece of bread. Now, she loves solid foods, especially bread and graham crackers. Teaching her how to suck from the bottle wasn’t easy either and until today she would still leak a little bit of milk while drinking from the bottle. Surprisingly, she learned how to use a straw in about a month. Little victories. Who would have thought that feeding skills were going to be a big issue for us? But hey, she even utilizes American Sign Language to tell us when she wants ‘more’ or when she is ‘all done!’ Additionally, she loves dancing, and it took me about 9 months to hear her giggle… Patience is the key and focus on the little victories.

Tool tip: The Nuk Brush is used to massage her mouth and works very well. We have also found that having our meals with her at the same time helps her to mimic what we are doing.Y ou can find more about Liliana’s adventures in her blog www.lilimcawesome.com or her Instagram @lilimcawesome. Editor: Emily Duckworth.

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