Days 9-13

Apr 24, 2017

4 min read

Well it has been another SUCCESSFUL week at the feeding clinic!

On Monday, Sebastian added 4 new foods to his pureed food repertoire, which included broccoli, cheese, bananas and bread. :-)

On Tuesday, he added another 4 foods, which included hamburger, corn, oranges, and oatmeal. This brings us to the total 16 target foods that the clinic planned to conquer during our admission. So we are doing WONDERFUL on the variety front! We also doubled the amount of liquid he is taking per drink with no issues!

On Wednesday, we went to the largest bolus (spoon) they offer...and it went GREAT! It was as if he didn't even notice. We also switched over all of his Pediasure to Carnation instant breakfast. This was so we can ease him from thick Pediasure to Carnation and then to just regular milk. It's also like a fourth of the cost of Pediasure....so that certainly helps ;-).

On Thursday, we went from 30 seconds in between bites of food to 15 seconds. It didn't even phase Sebastian! They also started "capping" his meals based on volume....so instead of feeding him until my arm falls off ;-), we are finishing his drink sessions in about 20 minutes and food sessions in about 30 minutes, versus 40 minutes for each :-( Woo-Hoo!!! AND because he is getting in so many calories from food....we have gone from 5.5 bottles of Pediasure to 2 cups of Carnation....how AMAZING is that!!!!

On Friday, they surprised us and moved him from the tomato chair (think special needs 5 point harness chair) to a regular booster. And he did GREAT!!! This was a huge change, and I had no idea what to expect, since he would have much more freedom to move (i.e. food avoidance, and problem behavior). So happy about this because it is age appropriate! :-)

This is what next week looks like for us (hopefully):

-potentially moving from 15 second breaks in between bites and drinks to no breaks, and just going bite to bite. So basically as soon as he swallows, another bite is presented.

-complete a baseline assessment on self drinking from an open cup (this is a skill they want him to have before leaving the program)

-we will start having more homework at night and on the weekends, and feeding Sebastian from the apartment and not just at the clinic, to see how he transitions in a different environment

-and hopefully by Thursday/Friday, we will complete a baseline assessment for chewing. They say that Sebastian has emerging chewing skills, but he needs a lot of work on tongue lateralization....so we shall see.

He is progressing so quickly and is at the top of his class ;-) (and pretty much as fast as any child they have ever seen, according to the doctors ;-)) However, they have told us that chewing is on a whole different level as far as difficulty to teach, learn, etc. and it could take Sebastian up to a year to establish age appropriate chewing skills (crazy huh?) So we remain extremely hopeful that he will surprise them and take on chewing like a boss! :-)

Prayer warriors...the prayers ARE WORKING AND GOD IS LISTENING, so please continue to pray for Sebastian! We are so grateful for all of the support and love!

We sure do love you guys! ;-)

P.S. Below are some pictures of the kiddos this week with accompanying captions ;-)

Below: our sweet Sebastian did a faceplant on the playground while running....still handsome as ever!

My kids love bubbles like nothing else!

This is Sebastian telling me to "stop" taking pictures! God love him! I do take A LOT of pictures!

Only our child loves reading so much, he physically won't put the book down, so he takes it down the slide with him, and continues reading.

After a long week at the clinic....I was out cold in mommy's arms.

Sebastian is obsessed with play-doh! He drew little faces on all the cut outs independently....what a cute little imagination! It really is the little things in life....that become the big things.

So I took Sebastian to the grocery store and told him he could get a balloon when we went inside....well low and behold, he chose this one (of course he did)....it's a sweet balloon! Talk about getting the biggest bang for your buck when mom makes a promise ;-)

P.S. that's a toothbrush in his mouth.....Sebastian loves brushing is teeth!

We went Downtown and found these amazing old-school slides! SUPER FAST! Love stuff like this!

Sebastian and Daddy going down the slide! Sebastian LOVED it!

Our sweet Aspen on the swing! So happy all the time!

Aspen is just along for the ride and adjusts to EVERYTHING WONDERFULLY! She is the most easy going, resilient, beautiful little girl! She was made to complete our family and we couldn't be more blessed! Love you so much Aspen!