Day 2- A Little Better and a Pinata

Today went a little smoother.  Leo had 10 feeding sessions.  We are still alternating using a spoon with formula and a nook brush with baby food. They are gathering data to see which way will be the best way to proceed with Leo.  

Today, Leo did seem to understand a little better what was expected of him.  He did open his mouth when asked quite a few times.  He was also understanding a bit better that when the timer went off that he was done for that session. We are still working on swallowing.  It is still not automatic, but less food is coming out with each attempt.  Once he starts automatically swallowing when food is in his mouth, we can move onto the next step.

naptime today- learning to eat is hard work

 The hardest part for both Leo and I is missing everyone.  Today a brother and sister came into the clinic.  They were about Tyler and Amanda's ages.  Leo went over and interacted with them.  He handed them toys expecting them to play with him.  Thankfully, they were good sports and played some with him.  He misses his siblings and so do I.   

Tonight, dinner at the Ronald McDonald House was provided by a church group. Their meal was a celebration of Cinco De Mayo. Mexican food, Mexican music,decorations and a pinata for the kids Let's just say they think Leo really like Reeses peanut butter cups.  

Toby, the therapy dog, came for a visit tonight.  Toby didn't even sniff or try and get any of the candy the kids were carrying around.  Leo is really enjoying the dogs and they are great with and for the kids.  

Leo is asleep and I am headed that way.  Tomorrow we do it all over again.  

Prayer Requests: That Leo keeps pooping (changes to his diet affect his bowels) and that Leo begins automatically swallowing tomorrow when food is placed in his mouth.  

Day 1- chewing camp

First day at Chewing Camp:

Arrived 8:40- did some intake information. Began first of 3 base lines feeds. I was in a room with Leo in a high chair. Video camera started. Timer set for 10 minutes. 2 therapists in adjoining room watching through one way mirror.  First plate of food- yogurt and peaches with cup of water. We did pretty good. No problem -- Leo played with the food while I attempted to feed for 10 minutes.  10 minute break given. Back in chair. This time we have peaches and butter scotch pudding.  By now Leo was exhausted and done. (Apparently getting up at 5:00 AM caught up with him) It was a long 10 minutes of Leo fighting me and throwing food. Break time and Leo decided it was nap time. He slept for about an hour. Next meal was scrambled eggs, tiny, tiny pieces of cheese, and applesauce.  We did much better this time.

We walked back to Ronald McDonald house for lunch for 30 minutes. Too short of a break for both of us.

Now it was time for the therapists to take over. I would watch and they would attempt to get him to swallow. A random coin was flipped to see which was first- formula on a spoon vs. pears on a nook brush.  Again 10 minutes on, 10 minute break. Spoon,  nook, flip coin next time nook then spoon. Collecting data. Leo did great for the most part. seven 10 minute sessions, with a 10 minute break in between. They keep data during each feed and if you know Leo you will not be surprised to know by the end he had his own paper and pen to keep data with. Before and after each attempt they would weigh his bib, rag, and bowl of food to see how much he took in.  I think the most was 8 cc's. That is a tiny amount.   Before each attempt they let Leo push the button on the timer to start the 10 minutes. Leo also pushes the button to stop the timer when it buzzes at the end.  Feeding time can not end before the buzzer goes off.  The last time was the longest 10 minutes of my life.

 the small room we get to hang out in between feeds

By the 10th time in the feeding chair, we both were done. Leo cried through most of the feed. He did get 1 or 2 swallows. We ended our day at about 4:15 with both of us crying.  We came back to the Ronald McDonald House and enjoyed the play room.  

For now we have gotten rid of one of his morning feeds and will decrease others as his intake increases.  Leo was weighed today and will be weighed again on Friday.

Dinner is done, bath given and now it is time for bed for both of us.  Leo just fell asleep and I am headed that way soon.  I am wiped and homesick.  Not a good combination.

Please pray we both sleep well tonight and that Leo actually sleeps in till 7:00 or later! (ok- at least till 6:00).  Pray Leo continues to do well and that the swallow instinct kicks in and that he starts automatically swallowing.

We are Here!

Our first answer to prayer came at 9:00 AM when we found out we got into the Ronald McDonald House.  Our second answer came when Lauren, my cousin who is a college student at Penn State Harrisburg campus, was able to meet us at the Ronald McDonald House and help me get settled.  

We arrived about 4:00.  Leo has tried to leave numerous times and is not as impressed with the place as I am.  The house is beautiful.  The volunteers wonderful.  The amount of food in this house is unreal.  Dinner was ham, potatoes, baked pineapple, salad with all the trimmings, 3 different kinds of bread, rolls, and green beans.  Then there were at least 6 deserts all prepared by volunteers. Everything was delicious.  There are 2 refrigerators with food that is there for anyone to use. I am a stress eater so none of this is a good thing.  Tonight's dinner will be put in the frig for anyone to use for lunches for tomorrow.  There is a coffee station and a keurig machine!  Tyler and Jordan would be in food heaven here.  There is even a 25 cent soda machine.  

There is an outside playground and a toy room.  

 Our one and only smile came when Leo met Blizzard the therapy dog.

There is a therapy dog here each night and even a pot belly pig comes to visit.  

This is a house full of stories. There are probably about 25 families here each with a child receiving some sort of care that requires them to be away from home.  We met a little girl named Miracle tonight who is 6 years old.  She truly is a miracle for all she has been through in her short life.  

Tomorrow we begin feeding therapy.  Let the games begin...