It is clear that our slow and steady approach is working. Sloane little by little, ounce by ounce, sip by sip, has trained her muscles and nerves to swallow perfectly in spite of the neuro-muscular discoordination she is left with as a result of being born with abnormal anatomy in her throat.
Before I explain any further. Let me give you some visuals.
I, on the other hand, missed all the swallows. Now, before you judge me, there were only 3 or 4 of them. Sloane, as her typical self, was only willing to eat and drink when she wanted to today. The x-ray room isnt exactly low intensity or low aniexty. She wasnt thrilled with her surroundings. With lots of coaxing, bribing, teasing and even some praying. Sloane delivered 4 PERFECT swallows!!! As time was ticking and Sloane was refusing, I was trying all kinds of antics to get the ball rolling so I missed all the swallows. When I asked the radiologist, "did it go where it was supposed to?" and the answer was "perfectly" my eyes did tear up. It has taken almost 22 months to get here! For a moment, I actually couldnt believe it!
What do today's results mean? First and foremost they mean, Sloane is exactly what her name means...a warrior!! In my opinion, my daughter kicked ass today. She showed me that every tear I cried, every night I tossed and turned, every moment I thought why, was wasted. She showed me that she will learn to swallow liquids in their natural form when she is willing, able and ready!
Medically, today's results mean that we can continue our slow and steady approach. We can continue thinning out Sloane's liquids by adding 1/2 ounce of liquid to a packet of Simply Thick every 10 to 14 days. Of course, we are always watching for any visible signs of aspiration. If we see any, we back up to the earlier consistency. We may have a bump in the road the thinner we go, but where we are today feels AMAZING!! We will continue to see our SLP monthly for check-ins and we have a follow-up with Dr. Rahbar in August. I have to assume as long as all goes well with the thinning out approach, we won't have another swallow study until the end of the year.
Today's results also mean that we have to encourage and motivate Sloane to drink thickened milk as much as we can. If Sloane acquires a taste for milk in any form (flavored, smoothies, shakes) and starts drinking it more frequently during the day (increasing her daily volume intake), we can BEGIN the discussion of taking out the feeding tube in months to come. We now know, at the very least, that her current thickened liquids (6oz. of liquid to one packet of honey Simply Thick) are safe for her so we can begin the big push to get drinking as part of her daily routine.
Courtney did say that letting Sloane drink non-thickened liquids as a treat is not helping Sloane at all. In fact, over time, it could slow the process down. So moving forward, there will be no more sips of water from our glasses or bottles! New policy in our house, "Sippy Cups Only!" Let's keep the sippy moving forward.
It would have been awesome today to have seen Sloane drink a thinner liquid than she was used to because MAYBE she would not have aspirated that either??? Courtney actually had nectar consistency of Simply Thick ready to give a whirl, but by that point Sloane was done. She would not take the tiniest sip. No skipping steps for my little lady. We will continue moving slowly onward and upward from 6oz to
6 1/2 to 7 and so on.
To my friends and followers, thank you for all the text messages of encouragement for today! There are so many of you following our journey on this blog....it blows me away. We are forever grateful for your support, care and interest in Sloane's progress. Now that cold/flu season has come to a close and Sloane attended her swallow study healthy, I hope to become less red-alert, high-strung, and overly-medically obsessed! Thank you for riding out another "please wash your hands" season with me!! And welcome to, "may I offer you a sippy cup of water?" LOL
What a amazing blog!! XO
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