Phew! I know I haven't been updating this regularly but things have been busy. Between driving back and forth and getting Mason to the hospital, etc I have neglected this. But the end is near...this Friday! A total of 8 weeks and we have almost made it!
Overall, Mason has continued to make good improvements. We ran into a little difficulty the week before thanksgiving and during thanksgiving where he was acting abnormal. He has started to take foods with ease (even though still in smaller volumes ~15-18 g per session) but he started acting differently from one day to the next so the nurse practitioner checked him out and his tonsils were enlarged. He was a little stuffy in his nose but other than that no symptoms but the good news is we were able to continue trials by mouth because he was strong enough to handle it oral motor wise. Once we got through that he powered through and has made some good progress. I think where I left off they were cycling through the thicker soups like beef stew, chicken noodle soup, black bean soup, and lentil. Next they introduced him to veggies such as: sweet potatoes, carrots, green beans, and peas. This final week we have targeted a fruit and a carb in order to make it thicker and decrease the overall fruit sweetness: cream of wheat/peaches, pancakes/pears/peaches, and french toast/apples. With every new introduction of food Mason has been able to adapt and generally take in more volume and we were able to get rid of the gravy as a preferred "food" and add sweet potatoes (plus he is enjoying these fruit/carb combos really well). He has taken up to 33 g in one sitting and generally takes at least 15 g a meal which doesn't sound like a lot, I know, but is great improvement. He is able to clear his mouth with 1-2 swallows now and is more timely. The plan is to continue rotating through each kind of taste weekly and introducing new foods over 2 days at a time with always having his preferred meal in the morning (since that is typically his more difficult meal). We are also going to be coming back here once a month to continue working on these techniques.
We are so thankful for the opportunity to attend this program and for God's perfect timing for us being here. We are also appreciate for all are friends and family who have helped take care of Corbin while I have been here. We couldn't have done it without you all! And we are very thankful that we will all be together for Christmas!
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!
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 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.
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.
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.
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!
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
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!
We are home! It was so good to see all my boys! Mason had a hard Friday and decided to test the system. We had some moments of spitting and open mouth extension as if to say , "I'm not gonna swallow this stuff", as well as moments of timely swallowing his bites. All of this is to be expected as he gets used to eating regularly and right now is a behavioral problem. I also forget he is 3 too and can have "typical" child behaviors. But for now we are enjoying our time home with our family and keeping the faith!
Enjoying Corbin's soccer game today.
He was so excited and was pointing at me because I was home! Love this boy!
We are almost through our first week! Today went interesting...his first meal she decided to stick with his preferred food of gravy because the first meal can usually be more difficult ( he is typically more gaggy). He continued to do well and swallowed more timely. Then came the next meal of puréed Mac and cheese (he has had this before and tolerated). The goal was to try something that was thicker so that it would stay in Mason's mouth easier and wouldn't slide forward. Mason took the first 2 bites beautifully and swallowed very timely with no gagging. But then it was as if he realized they had changed it up on him and he wouldn't close his mouth to swallow. He may have gotten two more swallows in after that during that session. But in the third session after a good stern talking to do do his best (he said uh-huh) he did great with the new food. Hooray! Here's to praying for more success tomorrow and we get to see our family for Ashley but this weekend.
Today was another good day. Mason's feeding time was increased to 12 minutes per session and trails of his preferred food (gravy) were given. He stayed steady with his amount of intake around 6 g to 6.5 in his last session. What improved today is that at the last session he actually had no spillage on the bib which means he actually took the full 6.5 g instead of it falling out during the swallow process.
Mason being fed gravy with a squeeze bottle.
Today was also his first day of recreational therapy (he will receive that M-Thurs for 30 min) and when we came home he was beat and took the longest nap he has taken in a really long time! We try to keep busy between sessions exploring in the hospital or walking around for exercise. Below are pictures from the accessible playground they have there. The past couple of days have been beautiful and we have been taking advantage of it before cooler weather comes!
Tomorrows game plan is to try a slightly thicker food to help decrease spillage and increase time again. I'll let you know how it goes! Thanks for continued prayers.
Therapy began today which means this was my view during each session so that Mason could get acclimated to his therapist, eating 3 "meals" a day, and techniques and his focus could be solely on her.
Mason the "movie star"
Mason showed gains with each session which is exciting. He ate today for 10 minutes with a timer started so that he knows when the timer goes off he is finished. He handled that great. She began using reinforcement (musical toys) to encourage him to close his mouth and swallow after each bite. That is the goal right now because if he develops a more timely swallow then he can take in more volume per "meal". He receives 3 sessions a day: 8 am, 10:30 am, and 1:00 pm and then he is done. We have lots of down time between each session and after the 1pm we head back to our "home" for now. He is handling the change well and I am pleased with his progress. He improved volume wise (even though that is not the focus quite yet) from 2g to 4 g to 5g in our last session.
We made it to day 1 of the feeding program. My mom came up and helped us get settled in and unload all of our stuff during the 8 weeks we will be here. We had quite the load since we brought equipment, toys, food, clothes for our time here. We plan on staying in a hotel (it does have a small kitchen) so that we can go home on the weekends and not move all of our stuff out!
Today they got a baseline where I fed for two feeds and then his therapist fed him with no cues. Mason was tolerable of all the new changes and was his usual happy self! During the first feed he took 14g which is a decent amount (for him)! We brought gravy and they added new foods of yogurt, peaches, and carrots. We also met with the nurse practitioner and dietician that will be following, as well as other families in the program. Quite the eventful day for sure! We are excited that we have this opportunity and are hopeful that Mason will make good progress! Please continue to pray for us (and for our family at home that we dearly miss) as the days come!
Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12
The Matthews family is full of exciting adventures! Beginning next Monday,Mason and I are headed to Richmond, Va for 6-8 weeks to start an intensive feeding program to work on eating by mouth. We have been on the waiting list since January and have finally been accepted! We would greatly appreciate your prayers: for Mason to be successful and become more comfortable with eating and drinking, for Corbin and Josh while we are away from each other, and for smooth transitions. It is definitely going to be a difficult time being away from each other but we are excited and hopeful for great improvement to be made! I will be updating often here on his progress for those that are interested in following.
Home is truly where our story began and a week ago today we said goodbye to our first home together. Here is where many memories were made and where we started our journey as parents. This house knew much laughter, joy and some tears. We will miss this house (and especially our wonderful neighbors) but are excited for God's plan for our future.
This boy is growing up. I can't believe he started Kindergarten. He said he had a great day and can't wait to go back on Monday. Below are some pictures of the first 2 days.
Mason was excited too!
He is attending Summerfield charter academy. His teacher is Ms. Collier. He said he wants to be a ferry driver when he grows up.
Today's drop off was harder (on mommy) because he walked in by himself. He did a great job but it hit me that my boy was growing up. So proud of him and the boy he is becoming. When he saw me pull away he smiled and waved. We are praying for a great school year!
Today we had an incredible opportunity for Mason. He received an adapted power wheels car from Go Baby Go that will help him with mobility. We are so excited and he really enjoyed it (after he got his nap)! We are so grateful for the wonderful sponsors-Go baby go, Tommy baldwin racing, and Toy state. Now Mason and Corbin can ride their "race" cars together! What a great opportunity!
We are here!
Mason's car (and the other 6 kids) was styled after Alex Bowman's race car number 7.
Josh hard at work learning how to build/adapt the cars for children with special needs.
Mason got to be the first one to try out his new wheels.