I had all intentions of blogging this week about the BIG 4!! and how we spent our day on Sunday but that has been put on the back burner for today at least....
There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....
To this LC mom: I know you.
I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.
For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......
All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.
As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.
Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!
Hello, My name is Stacey and I have two children born who were born with a LC. We also use the doctors in Boston, but over at Mass Eye and Ear/MGH. My daughter is now 8 and doing very well. She was misdiagnosed, but finally had her surgery at 3.5 years old. The change after was fast! My son had his repaired at a year and is now 4. He still aspirates on all thin and nectar liquids. My question for you is did your daughter's repair not hold or as she got bigger and her airway grow did they realize the cleft was not fully repaired? We are going back to Boston on Tuesday to talk about a next step. I am sure a scope looking at the repair is next. Also have you tried any feeding therapy with your daughter to try to teach a safe swallow? Has the second surgery helped significantly? I would appreciate any info/insight you would be willing to share. My e-mail is sdsweet@comcast.net
ReplyDeleteThank you,
Stacey
Hey LC mommas! Thank you so much for this sweet post! Our GI and ENT think my 15 month old has a LC. He's failed two swallow studies and does vital stem feeding therapy three times a week. They think LC is the only diagnosis that fits. They just aren't sure which type it is yet, and want to scope him in dallas next week and possibly do the surgery right then. It will only be their 6 th time to perform. Would yall suggest Boston? Any other advice? Thank yall so much! spacier6@yahoo.com
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