Rattling Away

If someone out there can teach my 2 year old to walk and not run that would be great. This morning there was a big boo boo. I was walking down the hallway to answer the phone, Sloane was sprinting on my heels and down she went on her forehead with no bracing of the fall. How she didnt break the skin open, I have no idea??? She slammed so hard that she has a blood blister indentation of the bevel in my hardwood falls down her forehead on top of the very large black and blue egg. I must say WALKING FEET 17,000 times a day!! Anyhow, I took her to the ped and she is fine. She doesn't and won't look fine for a few days but no head trauma! Thank You Above!!!

Back to the WONDERFUL phone call I got yesterday from Dr. Rahbar's staff.......

I think I chewed Amy's ear off. I was rattling off information non-stop. I am very passionate about Sloane's laryngeal cleft. We spent almost 30 minutes talking about being the parent of a child with a laryngeal cleft and all that comes with it. It was refreshing!! Finally, someone understood some of the things I have struggled with because a LC is so rare. There truly is very limited information out there. 

 I was over the moon that while Amy was researching for Dr. Rahbar she found this blog. I mean I know people are reading us. We have had almost 4,600 hits in 8 months from all over the world. I have had moms from all parts of the US send me emails and share their stories, but I must admit that it was pretty cool that a medical professional found A Sip Of Heaven. Thank God I have written all good things about Dr. Rahbar.... the man, the legend!! LOL  My hubby reeled me in last night, when I was doing somersaults of excitement on the phone with him, that perhaps the good old doc maybe wasnt thrilled that I posted his picture on the blog?? Oh dear, I hope not!!

So Amy is creating an online parental information page on the teeny tiny LC.
HIP HIP HOORAY!! Imagine if I had had that information from the beginning. I may have bypassed the dark and disconnected days 2 years ago. Dr. Rahbar and his staff are interested in our journey or rather Sloane's story. They would like to share it on the page! Go For it!! Amy wanted to know what kinds of information I as a parent of a child with a laryngeal cleft would have found helpful back at the beginning and now. I went on and on but not without "I am sorry for rattling....I just think this is the best idea" Amy also wanted to know if I thought a support group was a good idea??? Do I ever!! Yes, sign me up.

And so we chatted and chatted...and then something validating happened. Amy said that some other parents too thought the feeding tube's presence in a Laryngeal Cleft child's life is one of significance. Other parents, too, had said that the feeding tube was, for lack of a better term, a jedi mind trick!! Thank You...I am not crazy!!! That fucking thing was constant reminder that my child had a medical abnormality. At some point, the feeding tube starts superseding the birth defect and then everything is out of balance. Even yesterday at swallowing therapy when Cara found out that Sloane's mickey button had pulled and she asked me with complete exhilaration what that was like. I couldnt really answer her....I am still processing all that has happened. I am not stuck....I just need more time to work through it all.

I shared a couple of my cooky invention ideas with Amy...to which she didnt think were so cooky. I like to dream up great ideas in all free time  (Post: Mother's Den) and do nothing with them....makes my hubby very happy!! HA!! I am looking forward to Amy calling me again and chatting with her at our next appointment with Dr. Rahbar. She, on the other hand, may wish she never stumbled across this blog and dialed up Sloane's mom because, as per usual, I have A LOT to say.....