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.