Graduation day excitement (and a new beginning for the Shafer family blog)

It has been on my mind to start blogging again.  In the last week or so, I had started to consider what I might write that could possibly bridge the gap of years between my last post and this one.

Then yesterday happened.

For starters, my precious daughter graduated from High School.  Here she is in her cap and gown.  Isn’t she just … AMAZING?  

That event, along with last weekend’s graduation party, have reduced my emotions into a puddle of nostalgic goo.  Somewhere in my brain Amanda will always be that little girl in the yellow dress who wants nothing more than to go for a wagon ride and get an ice cream cone at the shop a couple blocks away.  Sigh.  Those days are long gone.

I could go on and on, and Amanda would deserve every loving word I could string together, and then some. But, I fear, that is not what will make yesterday memorable.

You see, we had a simple plan.  I would shuttle Amanda and four other passengers to the high school in our big, 12 passenger van.  My wife would follow in a second car after dropping off Leo (our youngest) in the care of friends, and shuttle the additional members of our party to the school.

So, off I went in the big red van.  We got about a quarter of the way to the school when … the van DIED.  I mean it was a quick and sudden death.  We were just slowly approaching a busy intersection and then the needles on the dashboard went crazy, and then … dead.  I had no way to pull over and there we were, a big red clot obstructing a full lane of a busy arterial road.

If, in that moment, you could have heard my thoughts, they would have heard something like this, all in overlapping rapid succession.

"What’s happening?  Why is this happening? Why won’t this thing start?  Am I out of gas?  How could I be out of gas?  I should pray now.  It’s the battery!  Is it the battery?  It’s sort of the battery. Alternator.  Can I get a jump?  Will a jump work?  How can I get a jump?  Will Amanda miss her own graduation?  If she does, it’s my fault.  Oh, God help.  Will I miss Amanda’s graduation?  Father’s Day is Sunday.  This is a busy street.  This is dangerous.  How am I going to fix this?"

In that moment, I was powerless.  I was powerless to get my daughter to her own high school.   I was powerless to move that hulk of a vehicle.

Help came in many forms.  The hero in that moment was my Dad (father in-law) who martialed the resources of an angelic stranger who somehow managed to pull his small car up alongside us on the curb. 

My daughter called my wife and she managed to get to us.  

While Dad was working his magic, I was busy reaching out to AAA who advised us to call 911 (because we were blocking traffic.)  My daughter called 911 who advised us to call AAA (because we needed a jump or tow.)  Great.

Meanwhile angel-guy just happened to have an extra-long pair of jumper cables that reached my battery.  A little fiddling and we got a jump and - low and behold - if I kept the engine at about 2000 rpms I could drive that hulking vehicle to safety…. And ultimately back home again.

Additional heroes in my story were -

• Our friend Meagan who came to pick up Leo so that my wife could head straight to us.
• My wife, who got Amanda plus additional passengers to the school.  She also masterfully determined who got to what car, with the right number of commencement tickets.
• Suzy, my wonderful sister-in-law who drove Dad, me and the remaining passengers to the school (which, by the way, was packed with, I dunno, maybe 4000 people?)

The final outcome, we made it there.  We made it with 10 minutes to spare.  We sat down.  Then we realized we left the signs in the car trunk. 

I ran.  I got the signs. 

We got water-ice afterwards.  It was all good.

This is so significant for me because, as I noted before, I was helpless in that critical moment, and so many people and events conspired to make for a pretty happy ending to the day.

Here’s what stings me about all this. I am not good at receiving help.  I don’t like to be dependent on others.  And … sometimes … the predicament I am in is of my own doing. 

What made the whole van incident worse for me was that I had put a new battery in the van roughly 48 hours before.  I had misdiagnosed a problem with the vehicle as nothing more than a defective battery.  That conclusion is obvious… in hindsight.  It was a bad call. 

My personal devotions have me reading the Gospel of Luke these days.   Not too long ago I re-read the parable of the prodigal son, who ultimately had to approach his father and say, essentially, “I don’t deserve it, Dad, but please take me back.”   (see Luke 15:18,19)

Then there is Zacchaeus, the man I read about this morning. (Luke 19:1-8) He "came up short" ... literally!  His best efforts to get close to God was to climb a tree to get so he could better see and hear what Jesus had to say.  That was a close as this notorious tax collector dared to get.  But Jesus had a better plan.

This processes of acknowledging your need for help, and then being willing to receive it from God is all throughout scripture. 

Yesterday’s van trouble was a lesson for me.  I was powerless, and I needed help.  Help came.  And, as much as I dislike it, I know it won’t be the last time for me.  All of us, sooner or later, in spite of our best efforts, come to the end of our own self-reliance.  Learning that, in both the physical and spiritual realms, is a life-long process. 

Apparently, God decided I needed a reminder.    

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.