6 Months Already????

Time has flown by! I can not believe that it is mid-August and tomorrow is already our follow-up appointment with Dr. Rahbar. We have been waiting since April to see him again, but it seems like Sloane was just getting scoped by him in his office (post: 4 Months and Counting 4/3/10). I always get a bit quiet the night before a doctor's appointment. I like to gather all my thoughts, plan out the day in my head as well as gather all the paraphernalia will need to take with us for the day. I am not sure what my thoughts are on tomorrow. I am not expecting or prepared for any negative news.

On the other hand, I am not exactly expecting him to say that Sloane is dismissed from his care. I am much more of a realistic 2 years later. One of my dear friends, used the word "disconnected" when she referred to my state during my time in the NICU. So to tally up, thus far, I have heard dark and disconnected. Both seem like perfect choices when I re-read my circle of trust emails from 2010! I think it is funny that at the time I had no idea my dearest friends were thinking those words! You gotta love your dearest friends...they always tell you how it is...no matter how much time has gone by!! Thats why they become the friends you hold the dearest!

Here he is!!! The man, The legend, Our Leader

As per usual, I am sure Dr. Rahbar will scope Sloane tmrw and tell us what he sees. I'l be asking him if he sees any signs of reflux...either swelling or irritation or redness. I am going assume his response will be yes seeing as though Sloane refluxed so badly today that she couldnt catch her breath and was visibly upset but its sudden appearance. 

I am hoping also to discuss the size of Sloane's airway. Is it smaller than the average 2 year old? Both of his answers will help the ped and I decide on whether to re-start Sloane's reflux meds and give us some insight as to Sloane's re-occurrent croup. Is it croup or the result of a narrow airway compounded by reflux swelling? 

I have lots of exciting things to share with Dr. Rahbar: 

1. Sloane no longer has a g-tube. 

2. Sloane is drinking 4oz. of liquid to one packet of nectar consistency without any visible issues. 3. Sloane is drinking between 8 to 16 ounces on an average day.

4. Sloane is off all her reflux meds.

5. Sloane has not have any respiratory issues in the past 6 months.

As I type this all, I actually can not believe we have made so much progress in the past 6 months. It is AMAZING!!!

Some days I start to think about all that has happened in these last 6 months, I can not process it all. Many huge accomplishments and so many tiny milestones. Everyday, Sloane is growing and learning beyond her laryngeal cleft. What I mean is....everyday, huge and teeny tiny 2 year old things are happening in our home and they have nothing to do with her laryngeal cleft!! Last year at this time most days all I thought about was:
her laryngeal cleft,
her feeding tube feeds,
her mickey button,
her lack of a sippy cup in her hand,
her potential aspirations into her lungs and
her acid reflux.

Today......I thought of none of those things! I thought about how rapidly Sloane is increasing her vocabulary, I thought about the fact that she is counting to 10 and has learned 3 colors, I thought about what she is going to be when she grows up, I thought about her freshness with all the "i dont want tos" and how much they piss me off.