Days 14-18

Apr 30, 2017

3 min read

Well prayer warriors....it has been a rough week! Monday we kept everything the same and were blessed with continued success. With that said,Tuesday we attempted to do self drinking from an open cup. That is the last step as far as liquids go. During the first session, he picked the cup up, drank from it without spilling anything and had no problem behavior. However, as the sessions continued, he began to refuse and also had a lot of problem behaviors. It could be a lack of motivation to self drink - i.e. no interest - or he is just being stubborn. The team will be coming up with a new treatment plan as far as liquids go next week. To be honest, we came to this clinic because Sebastian was not eating, liquids were never really a huge concern for us. But the whole concept of this program is..."when I tell Sebastian to take a bite or drink of anything, he does so within 5 seconds, with no problem behavior". So I understand why they consider compliance with liquids an important component of our treatment.

On a positive note, throughout the week and over the weekend, we have been taking meals and drinks home, and he has been taking his bites and drinks beautifully from me in the home environment. Which is huge! This shows us that when we return home, (chaos in the background, his sister running around, all of us eating together, and not in a clinical setting), that the skills seem to be transferring well. To God be the glory!

On Thursday, we did a baseline assessment on chewing....it was not pretty! (Background: Sebastian can chew and swallow certain foods, but his chewing skills are just emerging, and his tongue lateralization is very weak). So basically when you put a bite of a new food in his mouth, he immediately expels it. It is almost as if he doesn't know what he is supposed to do with it. Needless to say....I was the one doing the assessment, and after 80+ bites of different foods being all over me and all over him, and being vomited on multiple times.....I was OVER IT! It was rough to say the least; it was the hardest session we have had to date! Just picture the hitting, screaming, kicking, etc. behavior from before and add on vomiting. I will spare you all the other details ;-) We can either move forward with these aggressive sessions to see how Sebastian responds or switch to a plastic tube that has food inside of it, that allows us to maintain control of the food, while teaching him how to bite down and eventually chew it. The latter is a much slower process, but it might be what he needs in order to obtain age appropriate chewing skills. For now, the data tells us that Sebastian acted this very same way when being introduced to pureed foods and we pushed forward and got results, without having to take the slower path...so, we plan to do the same with table texture foods to see what happens.

With that said, our primary doctor and lead therapist were out of town last week, which made all of this much harder. However, they will be back this week and we hope to come up with some sort of treatment plan for liquids and keep working on chewing to see how he responds. Sebastian has knocked their socks off thus far, and I don't think he has shown them what he is truly made of just yet. So please pray that the intensive sessions work and he starts chewing!! Pray and speak it into existence!

We are so blessed and we realize that we have made wonderful progress thus far, we just want that to continue. You only get one shot at this 40 day intensive experience and we want to get the best possible outcome for our precious Sebastian. "God is able to do exceedingly abundantly above all that we ask or think." Ephesians 3:20

God, today we are asking for a miracle that only you can provide.

Thank you prayer warriors for praying, supporting and loving us through it all. We are so grateful and we love each and every one of you!

P.S. We went to the Omaha Childrens' Museum this weekend....below are some pics of our trip and of our week! :-)

The many beautiful faces of Aspen below!