There are days when I think our blog has lost its luster. We are stuck in a gray area just waiting for pneumonia to rear its germs again. Sloane is drinking, Sloane is coughing, Sloane has a slight wheeze at times, and Sloane is visibly aspirating almost once day. These are the facts, but we just wait.....will she get pneumonia again or wont she??? Will we see Dr. Rahbar on April 30th or will we move our appointment up because Sloane gets sick again??
As each day goes by with nothing new to report in our laryngeal cleft world, I think this blog may not be the vehicle of speech I once thought it was. I actually found a group of Rhode Island women who started a blog contingent when I was blog hunting the other night. I considered emailing to see if I could join, but then after reviewing some of their blogs I thought maybe not...... A Sip Of Heaven isnt as aesthetically developed as the other members of Rhody Bloggers' blogs. I am bit technically challenged. lol
Then today happened. A mom posted a comment on my last post that reminded me what it is like to be a laryngeal cleft parent and why we so need each other.
Thank you, Gina. Your post helped me to remember that all the voices I hear in my head revolving around every one of Sloane's coughs, gags, and aspirations are normal and justified for a laryngeal cleft parent. Your post gave this blog a bit of life........Here is her comment:
I stumbled across your blog in the wee hours last night as I fueled my anxiety researching more and more about laryngeal cleft repair surgery. I skimmed a few posts and I saw my own life flash before me many times---the boxes of simply thick, the photo of the VERY FIRST juicebox, etc. I look forward to reading your story in my "spare" time!
My son is 4 1/2. He aspirates with thin liquids--he has since birth. He has a history of respiratory infections, pneumonia, etc. He has had so many scopes to try to figure out why he aspirates and doctors found nothing.....that was until December 17, 2012. A type 1 cleft was FINALLY discovered. It evaded diagnosis all these years. Doctors had been stumped because without an anatomical reason for the aspiration, we were left with a suspected neurological reason for the swallowing disorder. We were told over and over again that he would "grow out of it." I never accepted that for a moment and kept fighting to get to where we are now. My son just had a second foam injection in his cleft in December and he passed his very first swallow study three weeks ago. Full surgical repair is scheduled for March 26th and I am petrified.
Because this is such a rare condition, it is not only stressful, but beyond isolating. I am scared of every cough, gag, throat clearing. I know you understand......... I just wanted to share a little bit of my story and thank you for sharing yours. I get it. I truly get it.
Best,
Gina
I commented once a long time ago when our family was starting our laryngeal cleft journey. I've appreciated your blog because reading about your daughter's progress gave me hope that we could get there someday too.Kyle had his repair for his type 2 cleft in December at 10 months old and passed a swallow study, but we are battling severe reflux still and he doesn't want to eat anything orally. I like your blog because it helps me not feel alone. I couldn't tell you how many people ask why my son still uses the tube. He was made NPO as a premie, but everyone thinks our process should have ended with his surgery.
ReplyDeleteAnyway, this is a long comment but I think your blog is a great service to people who find it.