My Name is Tarra and My Child has a Laryngeal Cleft

Last night I did some research in regards to this blog.  I am able to gets statistics daily as to:
who is reading it,
which posts are being read,
who subscribes to receiving it daily via email,
the search engines people use to find it, and
what countries my followers are from.

So I decided to do some research on Laryngeal Cleft blogs. Through this journey, I have always searched factual information on Laryngeal clefts and their prognosis. I had never come across an actual personal experience blog. Now as a disclaimer let me say, there were there.  I just didn't want to read them. As a matter of fact, I was in a dark place when we got our diagnosis that I was furious with our circle of trust when they sent information forums/stories about children with laryngeal clefts. They were all too negative (in my opinion at that time, but clearly now that we are 2 years into our journey......they were realistic).

Last night, I spent some time researching Laryngeal Cleft Blogs. It seems that I am not exactly original. LOL There are quite a few families who have put their journeys out there for the world to follow along with. We have never had a conversation with another cleft family to have a place to bounce ideas off of. Our doctors and friends have told us of other families they have known, but none were close enough for us to feel comfort. I guess we wanted to pave our own way for our child.

I spent some time seeing as though I have become more realistic reading other journeys without wanting to toss the computer across the room. Some stories have similar paths and others don't. Many parents talk about their loathing of the feeding tube. I am convinced now that it has something to do with the fact that many  children with isolated Laryngeal Clefts do not have any visible medical issues but the feeding tube. So its like a jedi mind fuck!!

I contacted some blogs to network some on our end. I have had moms of cleft children contact me as a result of finding our blog, but I havent reached out myself. Last night changed that. After 2 years and a closed up mickey button site, I am finally ready to open myself to hear others war stories and pot of gold endings.

As for Operation Fluids, Sloane is on 4/12 oz. of liquid to one packet of Nectar Consistency Simply Thick. She is doing well and I only hear a cough here or there. Usually because she s swallowing too much liquid at once. Sloane likes to take BIG sips and swish the liquid around in her mouth like its mouthwash before swallowing. We try to control the volume in her straw but many times she squeaks a chug by!! Tomorrow, we will be trying to increase Sloane's liquid to 5 ounces to one packet of Simply Thick.