Week 2- A Monday Feeding Frenzy

It will not surprise anyone who knows Leo that when we walk in and through 

the Ronald McDonald House you hear  

"Hi, Leo!", "Hello, Leo!!"  "How was your day, Leo?"  

Leo has become the popular kid in the house.  

He loves the interaction and the attention.

One of the hardest parts of "Chewing Camp" is the loneliness we both feel especially in the evening.  Everyone is extremely friendly, but when we retreat to our room to get ready for bed, it is extremely quiet.  This is one of those times I really wish Leo wasn't non-verbal.  We talk, but it is a one sided conversation with him answering me in grunts and little noises.  

This picture was take Friday.  Friday was extremely hard as we switched roles and I fed Leo and the therapist watched.  Leo did NOT like me in the feeding role.  Thankfully by the end of the day he was being somewhat cooperative.  Then we went home and attempted to do feeding sessions at home.  Leo was not on board with this plan.  He cried, he flailed, he screamed, he kicked, he was not happy.  BUT and this is a big but as soon as the buzzer beeped, he stopped crying and was ready to get down.  So along with learning how to swallow, we also need to deal with the behavior side of wanting to learn to eat.

Monday update:  Today went extremely well.  Leo made some progress.  One of our 10 minutes sessions was indeed a "feeding frenzy". An answer to a prayer that some special friends prayed specifically for.  In between each spoonful of food, Leo is given about 10-15 seconds to play with a toy of his choice.  He then has to give me the toy and take a bite.  During one session, Leo threw a towel at me.  I held it until he took a bite and then threw it at him.  He threw it to me, then took a bite. Back and forth we went.  Because we weren't moving a toy like blocks or a bus, it actually went faster and during one ten minute session he took 23 spoonfuls. This was a record.

Homework Continues:  Today, Miss Whitney, our feeding therapist, brought a high chair over to the Ronald McDonald House specifically for Leo to use at dinner time.  Tonight, I put Leo in the chair with a plate of food to "play" with and we did a 5 minute feeding session with no problem.  I didn't attempt to take the plate of food from him, but just put the spoonfuls in every few seconds.  He did really well. A lot came out, but he didn't fight me.  That may have something to do with the few teenage girls who were eating all around us and "flirting"with Leo.

The highlight of Leo's day is definitely the therapy dogs.  Two dogs came tonight and Leo fed them both lots of treats.  He didn't make them "work" for the treats so he was definitely the dogs favorite too.

Prayer Requests:  We need lots more feeding Frenzies.  Leo is slowly getting it.  His swallow is becoming more coordinated.  Pray for his endurance as this is hard work!  Leo probably had about 3 ounces today over 7 hours.  He feeds to be able to swallow/drink about 40 ounces a day or eat the equivalent calories.  Endurance is going to be key.

Also, we need him to poop.  No one feels like eating when they are constipated.  We are giving him things that should aid in this process, but unfortunately the little bit of food Leo is eating is unbalancing his bodily functions.