Here Is Why

Today Sloane had swallowing therapy probably should have told you folks that in yesterday's post. It was our last session before the swallow study. Here is what I learned today:


1. Do not write anything in marker on our family calendar. Here is why: THE SWALLOW STUDY HAS BEEN CHANGED TO MAY 8th. (one week earlier)


2. Sloane is news-worthy. Here is why: the SLP today confirmed that isolated laryngeal clefts, like Sloane's, are the minority AND level 2 almost a 3, like Sloane's, are very very rare/not what they ordinarily see which means SLOANE IS ONE EXTRA SPECIAL KID.


3. It is an incredible feeling to hear a medical professional say positive statements about your child. Here is why: Our SLP called Sloane clever, impressive and bright after watching her  do her thing today. She said each time she sees Sloane she loves to watch her be herself. As her mom, I know she is fabulous. But boy, it was AWESOME to hear that from someone who works with children all day.


4. We are very blessed. Here is why: The SLP spent some time today explaining how very lucky we are that Sloane is as healthy as she is given the depth of her cleft. I know this deep down, but the REMINDER HIT HOME. 


5. Spending time at Children's Hospital is good for me. Here is why: It helps me see that in the big pond, we have a healthy, perfect treasure even if when we are in our small pond of family/friends we are PAVING THE WAY in the journey of having a child with a medical need. 


6. When we have drs. appointments in Boston in the morning, I should tube Sloane in the car during the ride up. Here is why: I organize our BON VOYAGE to the minute and I am always late because I am waiting for the slow winding pain in the ass tube feed to finish. 


7. The car ride back/forth to Boston is exhausting. Here is why: Sloane is not enjoying sitting in the car for 75 minutes, sitting in the stroller for another 75 minutes, and then sitting in the car for another 75 minutes. Her crying makes me FEEL LIKE A SHITTY MOTHER because she has been confined all day.


8. This is the first week ever that Sloane spent an hour or two with someone other than me every single day. Here is why: 
on Monday, mammie babysat Sloane 
on Tuesday, the aunties babysat Sloane
on Wednesday, auntie she-she babysat Sloane
on Thursday, na-na babysat Sloane
on Friday, ti-ti babysat Sloane
I enjoyed the time away & appreciated the help, but I noticed that I felt a bit DISCONNECTED from my best friend as she is usually all mine all day. 


9. The difference between honey and nectar consistency of Simply Thick is 4oz. Here is why: adding 1 packet of honey consistency Simply Thick to 8oz of liquid is the same as adding one packet of nectar consistency to 4oz of liquid. Sloane is safely drinking 5oz to one packet of honey consistency so we will have to have SUCCESS with 5 1/2, 6, 
6 1/2, 7, 7 1/2 and finally 8oz before we can move onto to nectar consistence of Simply Thick. 


10. Mammie follows directions better than me. Here is why: I was supposed to be further along in the thinning out liquids than I am. I admit it....I didn't up Sloane to 5oz when I was suppose to. I was afraid because I was going to be away so I waited til I was home. The SLP wasn't exactly over-joyed today so she clearly looked mammie in the eyes when she discussed the THINNING OUT SCHEDULE to occur prior to the swallow study. I'm pretty sure she wanted to be sure the schedule would be followed so she directed herself at the best listener in our group. Sloane and I weren't exactly in line for stars today. 


11. The swallow study will give us black and white information, but there are shades of gray when dealing with aspiration. Here is why: The SLP said today that even if the swallow study shows signs of aspiration, we MAY NOT HAVE TO CHANGE anything in Sloane's diet because the black and white of it is that Sloane has remained healthy, with no pneumonias since she started on thickened liquids so we maybe able to continue with liquids anyhow.