Greeting everyone! Each little new found freedom combined with the beautiful weather is really hindering my blogging time, so this is a little late but I wanted to share the results of our final diagnostic test (and when I say "final" I mean for the next 6 months at least). Gracie had a Modified Barium Swallow Study (MBS) on February 16th at a branch of PCH. Once again, they did not disappoint what with no waiting time, attention to Gracie's comfort and overall competence. AWESOME. In the grand scheme of what we have been through, this test is no big deal (and it's our third one so we know the drill). Gracie sits in a little seat while I don a lead vest and feed her various things while we watch the x-ray-like video of her swallow. It's actually pretty cool. The speech therapist was great- handing me her bottle with the barium/milk, followed by a marshmallow-like substance that actually smelled pretty good, followed by a barium cookie. Bleh. But Gracie tried each item, which is truly shocking. So the amazing news is that she no longer bunches her tongue at the back of her throat, which allows for a functional swallow. She did very well with thin liquid and puree, but still struggles with solids (ie the cookie). She holds the food in her mouth for a long time and then it sits at the back of her throat, indicating a weak swallow and putting her at risk for aspiration. But she didn't aspirate. She never has, and this is HUGE! This is what truly keeps her off of a feeding tube. So now that we have further confirmation that she is a safe oral eater and no further MBS tests are recommended, we can proceed very specifically with her feeding therapies. We have been practicing for quite some time with straws, open and sippy cups. Thanks to some Elmo take-and-toss cups, we have gotten her to understand straw drinking. She is even starting to hold her own cup! Although she has been physically capable of holding her own bottle/cup for a while, the coordination and effort of swallowing is so tricky for her that we usually hold her bottle while she drinks. But I digress... the straw is going to be our new best friend. It helps to develop stronger oral-motor skills, thereby helping her to swallow. So we will be trying some puree/water mixtures of different consistencies and take it from there. She does still have some texture sensitivities, so we practice things like finger painting (which made her gag) and putting her hands and feet in bins of rice, etc. So her final diagnosis re: feeding is dysphagia which is a fancy way of saying "weak swallow". Weak but functional. We can work with that! We have also cut her Prevacid dosage in half and her bottles consist of a breast milk/Elecare/Duocal cocktail. She lost a few ounces after her airway scope, but has shot back up to over 16 pounds. My personal goal for her (which I truly have very little control over) would be 17lbs by her first birthday...which is SOON!!
ps- we had our first dining-in experience at Chick-fil-A yesterday! I'm not gonna lie, my palms were sweating and I am pretty sure I gave a dirty look to an innocent child who happened to cough, but Gracie was in heaven watching the kids and people. I kept her in her stroller or held her and doused us both in hand sanitizer, but I have to say, it really was a good first experience. Gracie has never been into a restaurant, grocery store- nada. So this was a big step! Thank you to Steffanie, Cal and Jake Murphy for holding my hand though it and making our day so much fun!
ps- we had our first dining-in experience at Chick-fil-A yesterday! I'm not gonna lie, my palms were sweating and I am pretty sure I gave a dirty look to an innocent child who happened to cough, but Gracie was in heaven watching the kids and people. I kept her in her stroller or held her and doused us both in hand sanitizer, but I have to say, it really was a good first experience. Gracie has never been into a restaurant, grocery store- nada. So this was a big step! Thank you to Steffanie, Cal and Jake Murphy for holding my hand though it and making our day so much fun!