"A Mom in London" thank you for your comment. Please contact me again and leave your email. I would love to correspond as well as answer any questions you have!
Hi,
I am another mom who is extremely grateful for this blog. My daughter was born six months ago with a long type 2 laryngeal cleft. She also was diagnosed early and has no genetic or developmental issues. Your blog has been one of the only sources of useful information I have been able to find. Your story gives me hope and has also helped prepare me for what may be ahead. We are living in Europe at the moment, but will be seeking treatment from Dr Rahbar. I would love to get in touch via email if you would be interested. Your little girl sounds like a real joy and I am glad she is doing so well. Thank you again!
A Mom in London
Life in Sloane's world is great! We have battled a constant runny nose, ear infections, junky coughs and the stomach flu for a week this past winter but we have made it thru :)
Sloane is back on her inhaler once a day. Mid-February, the junky cough got the best of us. It had permanently resided in Sloane's lungs so our ped suggested starting back on the inhaler. And it worked! Not sure how long we will use it for??? Taking it one week at a time!
It is obvious that Sloane needs her inhaler for airway issues. Whether or not they are related to the cleft isn't as important to me as it used to be......Each month, we inch further and further away from the life altering effects of the LC. Which is almost unbelievable!
What is also unbelievable........that A Sip Of Heaven has had over 15,000 views!!! OMG!!!
Hi,
ReplyDeleteIt's the London mom again. Thanks so much for your quick reply to my comment. I am so glad your daughter is still doing well. I would love it if you would like to email me at londonmom2015 at gmail dot com.
All the best and thanks again!
Hi Tarra - I just came across your blog while I was at work and have now spent the last hour reading so many of your blog posts. Thank you so much for taking the time to document your journey. We had our first scope procedure with Dr. Rahbar last week where he diagnosed a level 2 cleft for my 9 month old daughter. I would love to stay in touch via email kristen.sanville at emc dot com.
ReplyDeletehope you and your family are doing well! :)
ReplyDeleteHi Tarra,
ReplyDeleteYour blog is very insightful. My son (who just turned 1) has a type 2 cleft. It has been repaired but he still aspirates. I have a few questions for you in regards to the journey and also reflux. My sons team of doctors here is Houston have no answers for my son and just want to see him again in 6 months. They don't provide ANY details and told me the first surgery would take care of everything. Which it didn't. He is currently on Honey thick liquids and takes 20mg of reflux medicine a day. Can you email me if you have time? The only way I have been able to gain any knowledge about what kind of a journey this is going to be is through other moms like you across the country. My email is shell87bell@yahoo.com