Happy Birthday Jonathan!

Six years ago.... We saw a picture of a little boy named Li Futing.  He stole our hearts.  We knew he was our son.

Six years ago... He turned 3 and we celebrated his birthday here in the USA while he was waiting for us in China.

At that same time, we were able to have a cake delivered to him in China.  

Happy 3rd Birthday, Jonathan.

Today, we celebrate Jonathan's 9th Birthday.  

He is an amazing young man.  We are so proud of him.

He plays chess, swims, plays basketball, and sees no reason
why he can't play flag football next season.

He is perpetually optimistic.

And, he is growing in his understanding of God.
He loves church and takes his Sunday School lessons there
seriously.

Happy 9th Birthday, Jonathan!

We are so proud of you, and we can't imagine our

family without you!

We also celebrated Mom -mom's Birthday!  

We love you, Mom-mom

No Regrets

When Jeremy and I explored the Hershey Feeding Program a few months ago, we had no idea how successful Leo would or wouldn't be.  We knew there was not a money back guarantee, but we both felt we needed to give Leo this opportunity and try it.  We didn't want to look back in five years and say what if.  We have no regrets about the amount of time, energy, and resources we have put into Leo learning to eat the last 8 weeks. We learned so much from the therapists at Hershey and it really has catapulted Leo's eating full force ahead.  We have invested too much in Leo learning to eat to go back now.

All that to say, after our appointment at CHOP with a specialist who we trust and respect and who "gets" Leo, we are needing to change our feeding path.  We have tried the "Hershey" way for 8 weeks and although it has helped and worked for hundreds of kiddos, it is not working for Leo.  There are some other physical issues like constipation and reflux which are being caused by the tiniest amounts of a certain formula that we have had to stop and get Leo back to where he physically was before he started eating by mouth.

The reality is that Leo is considered a medically fragile kiddo.  He has had surgery that has altered his stomach, affecting the way he digests food.  His little body, fights change and immediately goes into a defensive position when any change good or bad is introduced.  Leo looks great and is doing so well in so many other areas it is easy to forget just how fragile he is especially when it comes to this thing called digesting food.

We are still doing 2-3 daily eating sessions with Leo.  They look different then what we had been doing, but Leo is enjoying them more and is much more compliant.  The downside is the intake volume is not there during these sessions, but we are trusting that given time and practice the volume will come

I will admit that I am actually somewhat relieved.  Life feeding Leo was stressful and wasn't enjoyable for any of us, especially Leo.  We are in the process of formulating new strategies to help Leo.  This isn't the end of Leo's eating career.  I still believe that is it possible for him to be g-tube free some day.  As with any journey, you sometimes need to make a u-turn or take a detour, Leo's eating journey is no different.  We covet your prayers as we continue on this journey. We are so thankful for all of you that pray daily for Leo and we ask that you continue to pray for Leo as he continues to learn to eat.

2 steps forward, 1 back

This week Leo's volume has actually gone down.  He is experiencing some tummy, bowls and reflux issues.  Tomorrow we go to his surgeon who takes care of his g-tube, reflux and nutrition.  I am hoping we can figure out what is not agreeing with Leo and get him back on the upward track to eating orally.  

 The lack of measurable volume has been discouraging to me.  We are trying to figure out the balance of feeding Leo and living life.  We need to be able to do this long term.  If this marathon is going to take years (yes, I said years) then we need to slow our pace and figure out how to live life and keep Leo moving forward with eating.  

 Yesterday, we spent the day together at a family water trampoline park.  It was a lot of fun and we had a great time, but we had opted to leave Leo home with his nurse.  Leo was too little to participate in any of the activities.  This was a first for us.  Leaving Leo home from a family activity and not home with a parent but home with his nurse.  We totally trust his nurse and she had a fun day planned for Leo.  We needed to be ok leaving him home with her.  Leo would have been miserable with us. The heat alone would have made him uncomfortable.  I would love to be able to say, we won't do a family activity unless all of us can participate but that wouldn't be fair to the rest of the kids.  I know life isn't fair, but trust me when you have a brother who has multiple medical special needs your life needs a little crazy fun that doesn't involve g-tube feeds and seizures. 

Tomorrow, Jeremy and Tyler leave on a mission trip with our Jr. High Church Youth Group.  They will be gone 12 days and are headed up to Moose Factory in Ontario Canada.  They will be serving in a VBS, construction projects, street evangelism and church services.  Please pray for them as they travel and serve and for me and the other kids as we stay.  Please continue to pray for Leo and his eating and that we find some answers at tomorrow's appointment.  

The Magic Cup

My brain translated the face book post to read- 

If you buy this Renflo cup your child is guaranteed to drink an ounce like mine did.

The cup has an insert that only permits small amounts of liquid to come out at a time.  It doesn't matter how you are holding it, if it is tilted liquid will come out in small amounts.  No sucking skills required.  

 After reading the post, I thought if  Leo's friend, who also has WHS, can drink an ounce from this cup then so can Leo.  So I did what any respectable, loving mother, who is desperate, would do.  We drove to Whole Foods, who happens to sell these cups, and bought one.  

Looking at the above picture, one could be led to believe that Leo is actually drinking.  Don't be fooled, he loves the idea of drinking from a cup, but still does not have the ability to swallow in an organized manner.  Let me take that back, Leo will swallow if you are shooting a liquid, that is neither too thick nor too thin, into his mouth using a syringe (it must be a 3 cc syringe so that it fits perfectly into his mouth) as you repeat over and over again "Leo it is time to eat", "Quiet hands" interspersed with singing along with Barney as he visits the farm for the one millionth time.  When you aim said syringe into Leo's mouth, avoid hitting his front teeth as it will then splash back out at you.  If your aim is good, you may just get 2 ounces in over the session. We repeat this process over and over and over again for 17 minutes, 5-8 times a day.  

Now, let me tell you what the face book post really said- "I found this training cup at a second hand store and **** liked it!! Unlike a regular sippy with a valve, it's an open cup with tiny openings all around so wherever they attempt to drink they are successful! He drank a few oz the first time! He is very reluctant to try new thing...so I wanted to pass it along"

Why do we do it to ourselves, the comparing.  Just because another child can drink from this cup doesn't mean that Leo will be able to do it.  But I had to try.  I really wanted to believe that there was a "magic" cup that would suddenly allow Leo to swallow successfully.  Yes, I do believe that some day Leo will be able to successfully drink from this cup, but unfortunately there is no magic here.  All that we can do is persistently repeat the above process over and over until Leo's mouth muscles become stronger, his brain signals figure out what swallow means, and with lots of hard work someday swallowing will just happen automatically.  You see the child in the face book post never lost his ability to swallow.  He can suck successfully from a bottle.  He is ready for this cup.  Leo is not ready.  Two different boys, they have the same syndrome, but it is not fair to them or to ourselves to compare them.  Comparing only causes worry and stress and unplanned trips to Whole Foods.  

So, next time you sit and eat a meal.  Think about swallowing and say a prayer that Leo's swallowing skills will become more automatic and that his volume will increase and that we will have the stamina and persistence to keep on practicing everyday.

smile emotico

Progress

We are currently into our second week of eating at home.  

The first week was horrible, stressful and felt like we had wasted our time at the feeding clinic.

I was feeling very discouraged.

I think I can safely say that Leo has turned a corner. 

Leo's nurse, Sierra, is doing a great job feeding Leo orally.  

It is a challenge to her to see how much she can get in during a session.

Really, it is a sorta competition among us to see who can get in the most.

Leo has stopped a lot of his fighting.  His volume is slowly going up.

He is back to taking what he was during our last week at Hershey, 

which is about 1 to 2 ounces a session.

We return to Hershey on Monday.  

Our goal is no weight lose.

Weight gain would be a bonus.  

Thank you for praying. Please continue praying that Leo increases his volume during a session.

Also pray that Leo's mouth muscles become stronger and better coordinated so that he can maneuver and swallow baby food.  He is currently only able to swallow thin liquids.

Eating is hard work.  

Playing with Ben is fun.

Dear Webby Friends ...

You're going to have to forgive the silly graphic I chose to go with this blog post.  I decided that the time was right (yet again) to ask friends for prayer.  And when I thought of the phrase "Dear Webby Friends", well that idea for a picture popped into my head.

So, apart from that bit of fun, this is a pretty serious post.  Most of the Shafers are feeling pretty good this week.  It's been good to have Kim back home.

However, our little Leo has really lost ground since coming home.  When he was in the Hershey clinic, he peaked at eating about 12 ounces a day by mouth.  Now, since coming home we are lucky if we get half that in a day.  We are currently struggling to get 1 ounce into Leo in a feeding.

This is really discouraging, and Kim is bearing the brunt of that discouragement as she does most of the feeds.  Kim and I both are fighting off negative thoughts that dwell on 5 weeks of time invested in something that is (apparently) not showing any return.

Leo has been acting "run down" too, and that makes me wonder if he isn't discouraged too in his own way!

So, dear praying friends, please pray for Leo.  A bold prayer would be for him to eat 12 ounces of formula by mouth tomorrow, and to keep that volume up for the next few weeks.

Please pray also for my attitude and Kim's.  Please pray that we would stress less over what we are / are not able to do through our own efforts, and rest more in God's ability to provide, in His time, for Leo.

Thanks, webby friends.

-- Jeremy


 

We Have Only Just Begun!

We are home!!!  Everyone survived 5 weeks of being gone and 5 weeks of having us gone.  We finished off the intensive program strong.  This week Leo began taking 2 ounces in one sitting.  He has worked so hard.  Like so many things, eating has not come easy to him.  He has to work hard.  Leo is my hero- he is an inspiration to so many.

Today was the last day of the intensive program.  The hard work starts as we try to keep this going and moving forward in the "real" world.  The balancing act of keeping at least 5 solid sessions going a day begins.  More sessions equal more practice which will will lead to a stronger swallow and more volume.  The challenge will be to get Leo to eat constantly in a chaotic, crazy environment.  It is one thing to eat in a nice quiet office with no distractions and quite another  to eat in our house.

We will return to Hershey on June 22nd for our first follow up session.  Leo is now on 4  g tube feeds a day, which means we need to get in an amount orally that is equal to one feed.  When we return in 2 weeks, Leo needs to not have lost weight.

We would appreciate prayers.  Prayers that we keep going strong.  That Leo continues to move forward.  Prayers that Leo's volume continues to increase and that his cooperation continues.  Thank you for continuing  on this journey with us.

 Leo and Miss Whitney.  

 Leo and Dr. Williams

Leo and Miss Kathy

A day in Hershey ...

Today I got to be Kim's "Prince Charming" (her words, not mine).  I left home early this morning, drove to Hershey and spent a full day at the feeding clinic with Kim and Leo.  I will spend the night here in the Ronald McDonald house and, after a half day at the clinic tomorrow, head home.  (So I guess I am sort of "rescuing" her.)

So I got to participate today.  I got to feed Leo.  I am happy to report that Leo broke his previous records today and ate 12 ounces over 8 feeding sessions.  This is great progress!

I wish I could take credit for that success ... but I am pretty sure he would have done more had Kim fed him all 8 feeds.  She can get in 50 to 30 percent more than I can.  But, its good for me to be able to do this.  Really it is not just good, it will be essential when we get home!  We want his progress to continue and that will take a prolonged investment of time and energy from us both.

Kim has been at this for 5 weeks.  And its clear to me that what seemed like a long visit to me and the rest back home has been a much longer visit for Kim.  A day at the feeding clinic is a long, long, tedious day.

It was great to meet the specialists at the clinic, but I think I appreciated the Ronald McDonald house even more.  I had heard of the Ronald McDonald House charity, but now I can say from first hand experience what a great organization it is.  It really is very touching to see so many families with different needs, and different stories, come together in a place like this that give generously to all - expecting nothing in return.

I was also impressed with how popular our Leo is here.  He really is the life of the party around here, and I can tell that people are genuinely sad to see him go home. 

That made me reflect a little bit on God's purposes for my little guy.  If you look at all the minuses in Leo's column, you could easily write him off in one way or another.  But his big plusses - his great strengths - are that he brings out the best in people, he makes everyone smile, and that he makes everyone slow down and appreciate simple things.  Those qualities, I am convinced, are some of the ways that God has uniquely gifted our boy.

It makes me wonder what God has in store for him!

Odds are Not in our Corner

Another hard, long day. This has been a hard, long, emotional, physically draining journey.  Learning to eat is not easy.  This has been hard work for Leo.  He has made great strides.  Leo has so many good things going for him.  Things that make learning to eat easier.  He is not as combative as some kids, he really does want to please, and physically he is able to do this and his body is able to handle it.  His biggest giant to eating is  his  low tone and his poor oral motor coordination.  His swallow has gotten gotten a lot stronger in the last 5 weeks.  You can now hear him swallow.  That is huge.  

Today the doctor reminded me that the odds are and have been stacked  against Leo ever eating by mouth.  Just having the diagnosis of Wolf Hirschhorn Syndrome puts him at a disadvantage to eating my mouth.  (By the some of Leo's WHS friends do eat my mouth)  BUT the team at the feeding clinic all believe Leo can do this. They see Leo and not a diagnosis.  They believe in Leo. They also know this is extremely hard work for him and they are realistic.  I was reminded once again that this is a marathon not a sprint.  Leo will master this, it will just take time.  They are predicting Leo will eat and chew by mouth and get off his feeds, but on Leo's time table not ours.  

Now we prepare to transition to home.  Leo came to the clinic taking 5 g tube feeds a day.  He will go home on 4.  Progress.  We will return June 22nd for a follow up and adjust his feeds accordingly.  

Please continue to pray for Leo. Pray we finish strong and that even in these last 2 days Leo's volume increases.  

3 days left

3 days left.  Please pray for a feeding frenzy our last three days.  We need a miracle from our Mountain Moving God to increase Leo's volume during a session.  He is holding steady at 1.5 ounces during 14 minutes.  Please pray that we can increase that to at least 8 ounces during a session.  

Walked Out.

Today was a frustrating day and at one point Leo and I walked out.  We walked around the block for about 20 minutes.  We had a talk and Leo convinced me to go back in.  

In an effort to get Leo to drink in the most effective way, they introduced a honey bear cup to him today.  Basically squeeze the bear belly and the liquid goes up a straw and into the mouth.  This is a great invention but requires skills Leo doesn't have yet.  I want volume up so that we can come home on as few feeds as possible. Learning a new skill decreases volume.  So we walked-literally.  I did go back and explain my concern.  We reached a compromise that I think will work.  We will try it tomorrow.  

A praise- Leo did cooperate the most he ever has.  His "fights" per session were down.  This was awesome.  

This is our last week- 4 more days- I am chanting "I think I can, I think I can."  Please pray that God gives me the strength to finish strong.  Please also pray that Leo cooperates tomorrow and that his volume intake is back up.  

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.  

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.

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!

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.

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.

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.

Expectations

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.  

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.

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.

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.

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.

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. 

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.

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.