The Thinnest of Them All

I can easily say that today went off without a hitch! 

• There was no traffic which was great, but on the other hand WTF...why, did I leave my house 2 1/2 hours early??? Honestly the drive into Boston is completely unpredictable. 
• I had assumed that we would wait 2 hours for Dr. Rahbar, but in fact we only waited one.
• Sloane was relatively pleasant being trapped in her car seat for 2 hours and then her stroller for another one before Dr. Rahbar stuck his camera tube down her nose for an eternity. 

Those 3 things can make a visit to Children's much more pleasant. Sloane did start to unravel on the way home before she collapsed into her nap, but the truth be told I was unraveling too. My knee was killing me from driving, my eyes were slits from drain of the day and my stomach was dying for anything more than a roasted almond. Mammie, as per usual, was much more seasoned than me and took the day as a real veteran. 

As for our visit, it was a good one. I think there were some participants in our circle of trust that thought Dr. Rahbar was going to discharge Sloane today from his care. I knew that wasn't going to happen. In spite of all the progress she has made, Sloane's laryngeal cleft is still very present in her airway as a significant player in her general health and a constant topic in her medical care. Sometimes, I think because she doesn't have her feeding tube anymore and because she is drinking that people think our journey has come to an end. Sadly, this is not the truth at all. 

Dr. Rahbar did scope Sloane and say that in his opinion there is no visible irritation, swelling, redness from her reflux. As an ENT, he does not think we should put Sloane back on reflux meds at this time. He would like to give it more time without them to assess the situation more. We can assume then that Sloane's bouts with croup were just that or an airway infection of some kind. 

He and his staff were happy with Sloane's Super Duper progress! The plan moving forward is to have a BIG push thinning out her liquids from now to October. He wants Sloane to make some headway before cold and flu season is upon us. I was thinking that this year would be a bit less concerning for Sloane....but I guess not. When he said the words, the wind was immediately taken out of my sails. 

We are going to use the 1/2 oz. every 2 weeks formula...meaning that we will do 4 oz. of liquid to one packet of nectar consistency for two weeks and then up to 4 1/2 oz for 2 weeks and so on...providing I don't see any signs of aspiration this formula will continue right until we see Dr. Rahbar in late October (11 weeks). If/when I see signs of aspiration, I will backtrack to the prior consistency and sit tight until our appointment. 

If Sloane has signs of aspiration at the thinness we are at when we see Dr. Rahbar in October, he is going to schedule a swallow study to formally assess her swallow. Once that is done and based on those results, he may want to go back in and surgically tweak (put another stitch in) her laryngeal cleft. I did know that this could happen from our 1st meeting with Dr. Rahbar in January 2011, but I had assumed that Sloane had done so well so far that it was off the table. The reality is that her cleft was a level 2 almost a 3 and her incredible progress thus far is a testament to how strong-willed my daughter is..... so a second surgery shouldn't be shocking if it has to happen. 

We met our new SLP (speech pathologist) today. She was very nice and had a sweet way with Sloane. We are going to see her monthly just as we saw Courtney. Our new SLP will monitor use thru our thinning out schedule. I do like having a professional to help me manage it all. I have missed the one on one attention of a SLP these past 2 months. 

My hubby would call me Rusty Jones tonight if he could. I am out of practice. These past few months have been a vacation in regards to medical appointments. I forgot how draining these days are for me. I am on the couch vegetating right now, which isnt ideal since I just committed to running a road race with the aunties in honor of a dear friend who we loss and should be out for a run!! 

Tomorrow is day one of this next 11 week stretch! The pressure is back on. 

Sippy Cup, Sippy Cup on the counter,

Who will be the Thinnest of the all??