Thursday, May 28, 2015

Gone to the Dogs

 The happiest part of his day:  Pet therapy at the Ronald McDonald House.

 Yesterday, Leo took in 8.5 ounces over 9 sessions.  Drum Roll-  Today, Leo took in 11.5 ounces over 8 session.  We upped the time of each session from 12 minutes to 14 minutes.  We also got rid of another one of his feeds.  So now instead of 5 g-tube feeds a day he is getting 3.  We will probably add one back in over the weekend while we are home but everyone seems confident that we have permanently replaced at least one g-tube feed with oral eating.  Leo's swallow is so much stronger.  We are only working on swallowing liquids at the moment.  Talk is we will add baby food back in next week.  
Tomorrow is the end of week four.  One more week in the intensive program to go.  After the intensive program we will be returning to the clinic for follow-ups every 3 weeks till Leo is an expert at eating.  I was reminded again today this is a marathon not a sprint.  Leo is making progress and will continue to even when we are done our 5 five weeks.  
In bed and asleep by 8:00 each night.

Our goal is to finish the week strong and well.  Please pray that Leo stops fighting the sessions.  He goes willingly into the room when we say it is time to eat.  He is smiling and laughing as we put him in the chair.  He eagerly pushes the timer to start the session and he even takes quite a few bites willingly.  He does awesome and then he decides he is done.  He has performed long enough and he wants out.  My prayer is that his endurance will grow and that even though he doesn't understand why he needs to eat, he will become a willing participant.  Please pray that Leo cooperates tomorrow.  Please pray that we can increase his volume even more. Thankful for how far Leo has come and we are trusting God to carry us through the rest of this journey.  

Wednesday, May 27, 2015

Trying to NOT let Stubborn WIN!

Leo can turn on the timer.
Leo can lean back.
Leo can open his mouth.
Leo can lay his tongue flat.
Leo CAN swallow!
Leo will even let out a happy sound when he hears the ending timer beep.
Leo can turn off the timer.

But.... Leo sees no point to any of this!  He is still fighting us during at least part of each feed.  Waving and pushing the spoon away.  Pulling back.  Crying.

The last obstacle we need to overcome is Leo's will.  Leo needs to stop fighting the process and become a willing participant.  Today, Leo took about an ounce during each session for a total of 8.5 ounces over the 9 sessions. (The last session was a wash as Leo fought the entire time) This is huge and an answer to prayer.  This is the most Leo has swallowed in his entire life!  Leo's swallow has become more immediate and automatic.  His swallow is getting stronger. The only way Leo is going to finish strong and be able to increase his volume is if he stops fighting the process.

We would really appreciate it if you could pray with us for Leo to cooperate tomorrow.  God can do this.

Tuesday, May 26, 2015

Week Four Finds Leo Stubborn

It was good to be home for the weekend.  Leo is happiest there.  We went swimming.  Had a fun family picnic, which included fishing.  And went swimming again.  The weekends are too short.

Today, Leo did fabulous until the second to last session.  Leo probably got about 6 ounces in over 8 sessions.  I did one session and I got the record of a little less then one ounce in during the 12 minute session.  Leo and I were both covered in pedia sure, but we got it in.  Neatness was not our goal. Leo's swallow was better today.  

The second to last session, the head doctor who is over seeing Leo's program did a feed. He is kinda like the "Principle" here.  Leo was a beast and stubborn.  He fought Dr. Keith.  The timer went off and Leo needed to finish his swallow.  Short story is it took Leo an additional 15 minutes to finish that last swallow.  It was a stand off between Leo and Dr. Keith.  Dr. Keith won and Leo eventually swallowed, but oh, my, can my boy be stubborn when he wants to.

Our big, mountain moving totally unrealistic only God could do prayer for this week- for Leo to drink 8 ounces in one session. He currently isn't even doing 8 ounces over 8 sessions so this is a huge prayer. We need Leo's volume to increase in order to decrease or get rid of his tube feedings.  Please pray with us. 
Leo's new birthday swing
Brothers.  Happy to be spending the weekend together.

Leo is apparently very good at t ball.

Memorial Day Fun

Leo loved fishing!

My handsome son.

Ben caught the first fish!

Friday, May 22, 2015

Big Prayers, Big Answers

Things began to change on Wednesday.  Big prayers were being said and answered.  On Wednesday, Leo began having quite a few deliberate and immediate swallows.  Yesterday, we saw even more swallows.  Today, Leo had a near perfect session with no fighting or defensiveness and a bonus of immediate and deliberate swallows.  Four out of Leo's Eight sessions were perfection.  He was so cooperative.  The other four were still a step above other days, Leo just asserted his will and was feisty during them.

Bottom line- three weeks into this journey, Leo can now swallow.  Leo is learning what it means to swallow and his swallow has become deliberate and faster.

The next goal is to increase volume.  In order to decrease his g tube feeds we need to increase the amount taken by mouth.  It is now Friday night and we are headed home tomorrow morning.  The balancing act will be getting at least 5 feeds in each day we are home, which means we need to stay home or close to home to have them happen.  We will return Monday night and start week 4 on Tuesday.

Please continue to pray big prayers for Leo.  Specifically praying that we remain focused and have productive sessions at home.  Pray that Leo increases his intake.  Also, prayers for poop would be appreciated and also for Leo and I as we travel.  I am tired and emotionally spent.

God is answering.  Thank you for praying and being a part of Leo's eating journey.

Thursday, May 21, 2015

friends who help

Sacrifices have been made.  Ben turned 10 on Wednesday.  Amanda has had 2 school concerts. Daily interactions are not the same when done through skype or phone.  The hardest part of feeding camp has not been the actual daily program, but rather the separation from family. Missing events happening at home. It has been hard being separated.  It is hard to go home on the weekend and just jump back into daily life.

I am thankful for those who have come along side of us helping to ease the burden.  Mom-mom basically moving in and keeping the house and kids in order.  Friends delivering meals so that mom-mom has one less thing to do.  Texts, cards and flowers all being delivered on extra hard days. They are such an encouragement to me, a reminder that I am not alone.  Special play dates arranged with special friends to give mom-mom a needed break.  We have been reminded over and over again the last 3 weeks that we are not alone.  We are surrounded by friends and family who will do hard with us.  We are so thankful for the big prayers and those cheering Leo on.  We could not do this without all of you who have deliberately surrounded us and are walking this journey with us.  God has without a doubt blessed us.

Today Leo took in about 3 ounces over 9 sessions.  It was observed that his lip closure was more immediate and deliberatetoday. A definite answer to prayer.  Our biggest obstacle still seems to be endurance and volume.  Please continue to pray specifically that Leo will be able to drink about 1 cup of formula in a sitting.  This seems impossible, but ALL things are possible with God!

We have program all day tomorrow but will be heading home for the weekend and will of course need to do sessions while at home.

Wednesday, May 20, 2015

Glimmer of Hope

They say it is a marathon not a sprint.

Leo has mastered turning the timer on and off at the start and finish of each session.
Leo will now open his mouth and accept a spoon.
Leo will move the food around in his mouth.
Leo will lay his tongue flat, when accepting the spoon, making swallowing easier.

These are all things Leo couldn't do 12 days ago. We are halfway through our time here, progress has been slow, but there has been progress.

We are now focusing in on the swallow.  This means fewer bites per session, which means less volume, but we are pushing Leo to close his lips, swallow and totally empty his mouth after every spoonful.  There is loud cheering and clapping when he swallows.  To be honest, it is a battle, as he will hold the liquid in his cheek, cry, carry on, flail and wail until he finally swallows it. We are only getting about 7 spoonfuls in, in a 12 minute session. Most of the time is spent waiting for the delayed swallow.

Today we may have turned a corner. Today Leo took in about 3 ounces total. The difference with the ounces today versus yesterday was todays swallows were more deliberate.  He actually took in the 3 ounces with less spoonfuls.  In previous days 3 ounces took at least 14  spoonfuls each session. Today we averaged about 7 spoonfuls a session and still got 3 ounces in total.  His swallows were more immediate and deliberate.  We are praising God for this glimmer of hope.

Please pray that tomorrow we continue to go forward.  That his swallow becomes even more automatic and deliberate and that he continues to become less defensive.  We still have a long way to go but we are cheering for the hopeful steps Leo made today.

Tuesday, May 19, 2015


Nothing has ever been easy with Leo. Leo has always done things on his timetable. Not mine. Not the doctors. Not the therapists. 

I started this intensive feeding camp feeling overly optimistic. Optimistic that we would leave 5 weeks later eating orally and not needing the g tube.  Now we are 3 weeks in and Leo is averaging about 3 ounces a day over about 8 feeding sessions.  He has had a high of 6 ounces one day.  This is discouraging to me.  Leo is working so hard and is trying so hard to cooperate and swallow.
I have come to the end of myself and my abilities.  Leo is getting the best treatment where we are and yet this is going to need to be a God thing.  In being realistic, Leo has made great progress, but in my human eyes and the expert opinion of the therapists we could go home only having replaced one of his 5 feeds with an oral meal.  I need to be ok with this, but I also need to continue to have faith that my God is bigger then all of this and He can open Leo's mouth and coordinate his swallow. God alone can increase Leo's intake volume.  

Will you pray big prayers for and with me?  Praying that Leo will cooperate.  This is hard work for him.  Pray that his swallow will become automatic and that he will increase his intake.  

Sunday, May 17, 2015

Start of week 3 - doing hard is hard

Leo and I returned to Hershey this afternoon.  My laptop, which has been dying a slow death, apparently took its last breath in Feasterville because it was found dead upon arrival.  This will make communication more difficult and sporadic.

Last week ended with Leo doing a spoonful of baby food, spoonful of formula then toy.  No huge volume increase but he did not lose any weight during the week.  Not losing weight is a huge praise.

We returned home Friday night.  I will admit going home is hard but staying would be harder.  It is difficult to hear the boys say they miss us.  I had a talk with Jordan and Ben about why we are doing this for Leo.  They all want Leo to eat but honestly they want us all together again more.  We are all trying to keep our eyes on the goal of Leo learning to eat while keeping our eyes on the only one who can make that happen and give us the endurance we desperately need.  I was reminded of the poem The Footprints in the Sand.  It talks about how when you only see one set of footprints that is when Jesus was carrying you.  I will be honest, this week there is one set of footprints with drag marks behind in the sand.  I want to be here.  This is where we need to be, but it is not only hard being away from everyone but teaching a child to swallow is intensely hard emotionally and physically draining.  

Please pray that Leo increases his volume and learns to maneuver baby food.  Please pray he keeps pooping.  Please also pray for the laptop situation, not having one here makes this all the more difficult.  We really do appreciate all of you who are following along and praying for us.

Wednesday, May 13, 2015

Groundhog Day!

Not much going on today.  Leo actually took in less volume today. Yesterday, Leo was drinking formula off a spoon. Today, we did bite of baby food, drink of formula, then play with a toy. Repeat.  Leo is not yet consuming the baby food in any sort of volume.  So his overall total was less for today.

It feels like Groundhog Day here.  We do the same thing everyday.  Looking forward to going home for a quick visit in 2 days.

Prayer Request:  Leo started with a bad cold today.  He is snotty and congested.  This makes eating and even wanting to eat more difficult.  Please pray he sleeps tonight and that he wakes up less congested.  Please also continue to pray that Leo's swallow becomes more coordinated and that he consumes more liquid and food.

Tuesday, May 12, 2015

Terrific Tuesday

 Leo and I ready for the day!
 Artwork by Ben and Jonathan!

Today we did 8 feeding sessions.  Three of them were 10 minutes long and five of them were 12 minutes long.  The goal is endurance.  Leo did well making the transition from 10 minutes to 12.  Over a 7 hour day with 8 sessions- Leo swallowed 171 grams of formula off of a spoon.  171 grams is appr. 6 ounces.  This is awesome progress, but we still have a long way to go.  We have stopped one of Leo's five feeds and I think the plan is to drop one more the end of the week.
Special treats from Jeremy!

Tonight we also had a special visit with my Aunt Peg and Cousin Lauren.  Leo was excited to see familiar faces and I was thrilled to have adult conversation.

Please continue to pray for Leo.  Pray for his endurance in his feeding sessions and that his intake volume increases. We did have poop today.  Yay, poop!  please pray that the prune juice continues to work.

Monday, May 11, 2015

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.

Saturday, May 9, 2015

Leo's homework this weekend

Kim has been soooo good about keeping the blog updated regarding Leo’s progress at the feeding clinic.  The least I can do here is give her a little break this Mother’s day weekend and put together a blog update of my own.

Kim and Leo came home Friday night and it was GREAT to have everyone home, together, even if only for a little bit.  Kim told me that Leo had been sleeping in a king-sized bed there in the Ronald McDonald house in Hershey, so we were a little concerned that he might not want to return to his little kiddie bed here.  No worries!  Leo was happy to play with his brothers again, and he was plenty tuckered out from all his work, travel and play.

Kim and Leo came back with homework for the weekend– and I got to help out.  The exercise goes like this: Leo sits in his high chair, a timer is set for 8 to 10 minutes, and we attempt to feed the boy baby food.  He frets, cries and wails, and still each time we manage to get a spoonful in we applaud and shout “Good job!  Yay Leo!” 

Leo hates it, and lot of the food comes right back out again.  But some stays in, and so we persevere. 

Leo does like to hold a clipboard throughout all of this, just like the clinicians at Hershey.  He also likes to work the egg timer and, remarkably enough, he can turn off his water works pretty quickly when he knows his time in the high chair is up.

When Kim talks about her stay at Hershey being hard, she ain’t kidding.  The prospect of going through this feeding routine TEN times a day, 5 days a week, is daunting. 

One neat thing is that I have observed is that Leo appears to be a bit more vocal this weekend.  It is (at least) theoretically possible that the development of the muscles and motor skills necessary for eating would aid in Leo’s ability to vocalize.  Or maybe it is all the crying he does during these sessions!

Earlier today I was working on a household repair – and Leo came around to “help” as he often does.  I try to talk to him when he does this, and I swear he answered one of my questions with an audible “Yes” (as opposed to the “Uh” I normally get). 

If that is really what Leo said, then it is a huge deal.  The word “yes” would be an important new word in his vocabulary, which is currently limited to “hi” and the occasional “Ma” and “Da”.

So, tomorrow, Mother’s day, Kim and Leo will hit the road again in the late afternoon.  Please keep them in your prayers.  Please pray that Leo would make great progress this week, and that Kim would keep her spirits up. 

Thursday, May 7, 2015

80 cc's

80 cc's or almost 3 ounces is how much Leo drank today over the course of 10 feeding sessions.  This is huge for him!  Miss Whitney and Miss Kathy (his feeding therapists) were thrilled with his progress today.  The swallow still needs to become more automatic and eventually Leo initiated, but for now we will celebrate Leo's  80 cc's.  

Tonight at the Ronald McDonald House it was crazy there were 4 dogs and 2 cats.  A lot of pet therapy was happening.  Leo LOVED all of the dogs and even petted the cats.  

We have one more day of therapy this week and then we get to head home for a short visit.  We will return to the Ronald McDonald House on Sunday night so that we are ready to begin week 2 on Monday morning.  

Rumor has it that we will be given homework to do on Saturday and Sunday.

Thank you for praying.  God is answering.  Please continue to pray for us tomorrow as we have to complete our 10 sessions before we can head home.  Pray that Leo's swallow continues to improve and that he keeps on pooping.  Pray also for God's protection on Leo's airway, the more he drinks/eats the greater at risk he is of aspirating until he becomes proficient at it..  Please also pray for me as I drive home tomorrow night and then return Sunday night.

Wednesday, May 6, 2015

Baby steps.

Day 3- a repeat of yesterday.  10 feeding sessions.  Leo is a trooper and so forgiving.  He will get angry when a feed is going on if he doesn't want to cooperate, but as soon as he is down out of the chair he is smiling and blowing kisses.  We had a rough session and I decided we needed a daddy fix. So we called Jeremy and he was able to skype with us.  Leo loved skyping but was sad as soon as daddy was no longer in the computer. 

We were able to skype with everyone tonight and Leo loved seeing everyone in the computer.

Tonight we had Bailey and Bo visit.
Pet Therapy is great for both of us.

Learning to eat is hard work.  It is slow work.  We are still working on swallowing.  Please continue to pray that Leo's swallow becomes automatic when food is placed in his mouth and also that he keeps pooping!

 "Eating" cake at the Ronald McDonald House.

Tuesday, May 5, 2015

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.  

Monday, May 4, 2015

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.

Sunday, May 3, 2015

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...