Firstly, I want to thank all of you for your diligent prayers over the last week. I know there were a lot of you praying for us and for a good day today.
It’s been a really tough day. Elena aspirated on her third swallow. It wasn’t a large amount, but any aspiration is not good. She did fine for seven more swallows and did fine with her puffs. They didn’t even want to try liquids.
This is a huge disappointment. My heart broke for Elena. She has worked so, so hard over the last eight months, relearning how to eat. To get a big F on the third swallow is just heart breaking. She was such a big girl today, not intimidated by all the people and big machines. She took her bites so well. I’m so proud of her. I just wish the outcome would have been different.
I felt like I had prepared myself for some level of bad news, but both her therapist and I did not expect her to have trouble with the food. She’s been completely healthy for eight months, never coughs during feeds and has improved drastically with the amount and time it takes her to eat. We just don’t know what happened.
I’m so thankful that Elena has the best speech therapist. She was there every step today, supporting and encouraging me despite the bad news. She is determined to make Elena an eater.
I KNOW how far Elena has come since November and I KNOW there are certain to be disappointments along the way, but it still hurts. I just can’t help but think how hard it is for Elena to eat…something we all take for granted every day. It just isn’t fair. One step up, two steps back. My poor, sweet baby. We don’t think the doctor will cut her off food, which would be worst-case scenario, but we certainly won’t be moving forward. We’ll just keep working with her and praying that she’ll continue to get stronger every day.