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.