After 2 years, I finally have my shit together as the mom & driver and made it to mammie's house early enough to give Sloane some time to play before we began the rest of our drive! letting Sloane stretch her legs a bit made a big difference in our morning. Rather than Sloane sitting for almost an hour and half hour straight, we broke up the drive a bit. After 2 years and about 20 + drives to Children's, and I finally have my shit together enough to be early!! That should give everyone a clue to how my life rolls!
Our visit with Kara was a good one on all fronts! Having a professional to facilitate our swallowing journey has changed everything. I entered Kara's office with all my concerns on the tip of my tongue. I had been obsessing about them for over a week. After Sloane charms Kara to get a snack different from the one her mom brought, I open my trap and tell her about the last 2 weeks of aspirations and my opinions in regards to them. While we are talking, Sloane is wandering around the room drinking her ju, then switching it up to chocolate milk and finishing with some chunks of watermelon without a cough, gurgle or choke. Isn't it always the way???
Now, Sloane didn't just sip either today. She did her big gulp and swishing trick. Kara asked me if I thought Sloane's swishing was a habit. My answer was no, I don't think so. Honestly, I think it is a result of watching her father do his Listerine antics in the morning. I think it is a goofball move. She swishes her gulps to be a goofy girl and sometimes to tease us a bit. Sloane has this look on her face when she swishes that let you know she is doing something you arent exactly thrilled about! She's a little shit!! I was very proud as a mom NOT when Sloane showed Kara just what a monkey she can be. Kara asked Sloane to swallow her gulp and swish and Sloane shook her head no twice with the sweetest smirk on her face!
When Sloane does the swish, she ends up with too much liquid in her mouth and when she tries to swallow it, she loses control of the liquid and aspirates it. I wasnt excited to hear that swishing can become a habit and not a good one. Kara agrees with my initial hope and "the machine's" thoughts....Kara thinks that Sloane's coughing & aspirations have more to do with volume than consistency.
Some facts to note that we reviewed today:
1. Dr. Rahbar doesn't become overly concerned with a child's swallowing progress until they become sick. In his opinion, coughing is okay while a child is learning to swallow so he may not be in red alert mode on Oct. 30 because Sloane has been healthy! I knew this but couldnt wrap my head around it.
2. When Sloane has a stuffy nose (like this week), her swallow will be sloppy because she cant breath thru her nose while her mouth is closed. I didnt consider this one myself but it makes perfect sense.
3. Sloane's coughing MAYBE a good thing. If you have been following this blog since the beginning, you will remember that Sloane was a silent aspirator. She aspirated her liquids and didn't react to it. Because of this, we ended up at the Neuro Department of Children's in line for a MRI. It was unclear why Sloane wouldn't physiologically react to an aspiration. The thought was: Does Sloane have a neurological issue affecting her swallow. The MRI's results were NO she doesnt. At this point of our journey, the coughing when Sloane aspirates could be a GOOD sign. Her larynx has woken up and is reacting to the aspirating. Kara said sometimes this is what happens in laryngeal cleft kids. There larynx wakes up and then the child's swallowing progresses. This thought process made me relax instantly.
4. Children Sloane's age without laryngeal clefts are able to swallow big gulps and swishes without aspirating. Sloane will need to learn to control her big gulps the same way she has learned to swallow liquids. My question is how?
5. Sloane may be swishing because her liquids are getting thinner and she likes that she can move them around in her mouth. Yes!! This could be it. The thinner the better in my child's eyes.
The schedule is: 8 oz to one packet of Simply Thick for 2 weeks! And then we are on decreasing to a 1/2 packet to 8 oz. until we see the myth, the legend on the 30th. We are thinking that a follow-up MBI(swallow study) will be scheduled after this visit.
Kara and I did discuss Simply Thick and all the hype surrounding it lately. To be continued.........
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