Progress

Sorry it's been so long but things have been busy. For a quick update they had us do some experimenting this weekend to see if Mason would eat better by mouth when he was empty (before tube feeds). We worked on three "meals" of his preferred food gravy and he did great right before his tube feeds (which is when we think his belly would be empty. So on Monday afternoon we made some more tweaks to his feeding schedule so that during his therapy meals he wouldn't be so full and that has seemed to help! Today he took 20 g of his gravy at 8:00, 8.5 g of beef stew at 10:30, and 7 g of beef stew at 1:00...1 oz 1/2 by mouth! Woo hoo! I have also worked with Mason and taught him the cue "chew" which he thinks is hilarious (and it gets him to chew and swallow his bites faster)! Win-win. 

The plan is to add a new food and see how that goes and they will send food home for a 4th "meal" tomorrow. His oral motor skills are getting so much stronger and he is clearing his food with 2 swallows instead of 3 so we are pleased and will take it! So proud of our boy and his progress! Thank you for continued prayers!

Passing the time in between meals. 

Ups and downs

            Tired out after a long day. 

The past few days have been full of ups and downs. At the beginning of the week we were trying to figure out how to make things work with the feeding sessions to set Mason up for success. His 10:30 meal was always a struggle because he had just finished up his tube feeding which made his reflux worse and more gaggy. They decided to split his tube feeds up so it wasn't such a large volume at one time and that did help us be more successful. Today was a difficult day. We did switch back to the puree Mac and cheese and Mason just seems to have a hard time with it. I think we will move on to something else tomorrow. As of now the goal is to get him jump started to develop muscle memory and strength to take possible 25% by mouth with more being a very long term goal. I am hoping and praying that we can even get there at this point but I'm not losing the faith yet. Please continue to pray for success. He has improved with the acceptance of bites and a more timely swallow and he is closing his lips over the squeeze bottle which is much improved. He is trying very hard which is more than I can ask. 

Sunday came

Sunday came and it was time for Mason and I to head back to Richmond. This is getting more and more difficult and I have such a hard time leaving Corbin upset. But we are thankful for safe travels and for the opportunity to be here and for the wonderful time that we had together this weekend. 

  Love and miss this sweet boy. 

                          Silly face

It is amazing to see the bond between Corbin and Mason even without words. They love each other very much. Corbin has taught Mason to reach over from his car seat so they can hold hands while we are driving. We are blessed. 

"For where your treasure is,there will your heart be also." Luke 12:34

Please pray for good gains this week and progress with Mason's learning how to eat and continued health. I'll continue to update! Thanks so much for your prayers. 

Happy Halloween

               "Woody" the jokester

                         Buzz

  So happy to be home for the weekend. 

Chicken soup for the soul

Mason had a hard day yesterday. He did take 9 g for his first meal (of gravy) but then struggled with the mac and cheese for the next 2 meals with several reflux like episodes and just not seeming into the sessions. Then he came back to the hotel and took a 3 hour nap that I had to wake him up from! For those that know Mason you know that is unheard of...he doesn't take long naps at all!

Today the plan was to try a soup/stew that was on the thicker side and the choice was chicken noodle soup. One of the good things about us doing the blenderized diet is that Mason has pretty much been exposed to all real foods so we know that he can tolerate them. At breakfast Mason took 10 g of gravy! Making some good gains! For the next meal he did a good job handling the soup and was much improved, swallowing timely. He did have a burp/reflux episode which caused him to hold the food in for a second in order to deal with that. During the last session he ate 5 g of the soup with no behaviors and timely swallows. He also seemed to have a stronger pattern of moving his food back which was really good. Overall, a really good day and we continue to make some gains! 

           Enjoying this beautiful day!

Mason and I have searched for all the pumpkins throughout the hospital. They are having a decorating contest which has been neat to see. 

Trucking along

Hooray for a good day! Mason is finally complying for the most part and that is helping! His therapist had decided to have his first meal be his preferred food (which is gravy) since he has difficulty first thing in the morning and Mason did great. He ate 7.5 g for that meal and we switched back to the macaroni and cheese for the 10:30 meal. He did a decent job without too many tricks. He did through in a fake cough or too (she hadn't even put anything in his mouth) and did blow raspberries in between bites. And for the last meal of mac and cheese he ate a total of 9.5 g which is the most he has ever taken with the mac and cheese. We will take it! She was also able to move up his time to 17 minutes and yesterday she started some beckman oral motor exercises during each session. So we are pleased and thankful that we made some progress today! Hopefully he will keep up the good work!

Monday

Today was definitely a Monday. Mason had a hard night last night and was fussy, waking up several times throughout the night. I knew going into today that it was going to be difficult. For the first two meals Mason pulled out all the stops to avoid swallowing. He will open his mouth and take his bite but he would hold it and a couple of times he even spit it out. Now we know this food (the puréed Mac and cheese) is an appropriate food for him because he did accept it just fine initially and has had some successful attempts with it since then. Finally in the third meal today he ate and swallowed appropriately taking 4 g in a 15 min meal (the most he has ever eaten of the Mac and cheese) and was able to get 18 presentations in a 15 min period. Phew! 

         Catching a snooze in between 

                        sessions. 

We had our first conference today and that went well. It is much like rounds where everyone discusses their piece. They are estimating it will probably take more towards 8 weeks since he has been so resistant and we are just unsure right now of how he is going to adapt. Please continue to pray for all of us. Corbin had a really hard time with us leaving yesterday and it broke my heart. Also please pray that Mason will catch on and make progress and realize that eating by mouth isn't such a bad thing!

            Being "country boys"

          Sneaking doughnuts.