Lily had her stent removed today! Just as planned (for once), Dr. Manfredi removed her 2nd stent after one week of having it in. He also injected some steroids around the scar tissue to help prevent further scarring. He said he was very pleased with how everything looked though. Yay! He also said he would expect her esophagus to narrow a little again, but nothing like the stricture we had a month ago. So we will come back in 2 weeks for a follow up EGD with possible dilation and go from there. I'm very hopeful that this is the last BIG thing, and that we can start moving forward with her oral intake and decreasing her feeding tube volume. Despite being here for almost a month, Lily hasn't moved backwards at all in any of her skills. I'm so glad she tolerated the stent well because she was able to play and learn and communicate just like normal. She even progressed in some things. She is crawling on her hands and knees now instead of just army crawling, she's playing peek a boo and mimicking a lot, and she even did the sign for more a couple times.
As long as she does ok today and tonight, the plan is to discharge home tomorrow (Saturday). We are so ready!
Thank you all for your loving support and prayers! It's been a crazy 3 weeks.
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| Rooftop garden of the hospital. You can just see the tall Prudential tower |
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| Such a happy girl through all of this |
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| More music therapy fun. Rose even joined in on a video call :) |
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| It was 67 degrees on Thursday! |
Praise the Lord for such a happy update!!! The weather looks gorgeous there for this time of year!! Hang in there mama the “light at the end of the tunnel” is near and you are doing so so good!!! Lily stick to the plan and bust out of there Saturday so you can get home and show everyone your new moves💜
ReplyDeleteYour post brings tears to my eyes! You all are such troopers. Just can't wait to see how God is going to use Lily in this world for Him. She is a special little one, for sure. Soon you will all be home together again. Love you all!
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