Eat Happy!

Eat Happy!


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Monday, July 9, 2012

Outdoor Fun

Last month Ian had a great trip to the park.  He enjoyed walking on all the playground equipment, no surprise there!!  It was a very hot day so we only spent about an hour playing.  I made sure to give him a few big boluses of pedialyte to hydrate him.  He especially likes the swings.  My sister Amy and I enjoyed playing on the see-saw.

Staying cool with my shades

Amy and I having childhood fun

Free Swinging

Walking the see-saw with Pap

On July 4th, Ian had lots of water fun.  He enjoys playing with the sprinkler.  He does want to run through it, but likes trying to catch the water.  He also loves his little pool.  We use it here at the house for him to splash him.  At first we were worried about at cold water..... but with it being over 100 degrees here in northern Virginia lately, it only takes about 20 minutes to get warm..... and only a couple hours to become a spa!
In has started swimming lessons and likes to kick and splash.  He practices more in the tub than at the YMCA, but he likes it all the same.  He will be taking lessons every Saturday throughout the summer.

Reaching for the Sprinkler

Walking through the grass in my swimsuit...... except I have little legs ;)

4th of July pool party

Ian loves to play outside.  We even got a water table for him to play with on the deck.  He loves to pour the water out onto the deck with cups and scoops.  He does splash around in the water too.  His bath toys have quickly become dual-purpose toys!

Children's Hospital of Richmond

Last Friday, we ventured to Richmond to visit the Children’s Hospital there.  They have a very highly recommended day patient, feeding therapy program there.  It took us 2.5 months just to get the clinic evaluation appointment.  The program has a combination of many therapists that help the children with feeding and other skills.  The clinicians include nurse practitioners, psychologists, dietitians, speech language pathologists, feeding therapists, social workers, occupational and physical therapists, case workers, and MDs to help coordinate a comprehensive treatment plan for each child.
The program is 6-8 weeks long.  The therapy sessions are Monday-Friday each week.  Ian will have 3-4 1 hour sessions everyday.  Since the program is hours away, we will be staying in the area for the 8 weeks.  Unfortunately, the program has a 6-9 month waiting list!  They only treat 5 children at a time and the average stay is the 6-8 week time frame.  The clinicians were wonderful about giving us homework and things to work on at home prior to the program.  They also have scheduled two follow-up appointments with Ian while we are on the waiting list.
Ian’s feeding therapy here in northern Virginia is on hold until after the herniated Nissen is repaired.  Once we move beyond that, we can incorporate the recommended skills from Richmond into his therapy here.  Ian will also begin working on a sensory diet while learning the new feeding skills.  By exposing Ian to more textures and consistencies, he can learn to accept more as non-threatening... very similar to his sensory processing disorder with his hands and feet.
The therapists in Richmond also noticed that Ian is fairly “floppy” in his trunk and shoulder muscles.  While he has control of them, he is low-tone in those areas.  They suggested we begin working with a physical therapist to start building more muscle and strength in those areas.  Unknowingly to us, jaw muscles for chewing and speaking stem from core and shoulder strength.  Thankfully, the rehabilitation clinic that Ian attends for feeding therapy also offers these services.
The program is very much focused about behaviors and skills.  It uses positive reinforcement to integrate feeding skills into the child’s environment.  The program also ignores negative behaviors during therapy, so as to help extinguish the behaviors.  This will include vomiting and gagging/ retching.  The reason these behaviors are ignored is that many children will learn the gagging, retching, and vomiting will buy them an immediate ticket out of eating.  Some child use this to cease therapy sessions.
While the program does not follow the principle of creating hunger to encourage eating, meals are decreased as the oral intake increases.  There are several feeding programs in the country and most function in one of the two ways: behavior or hunger.  Both are very successful programs, depending upon which one the child responds to best.  With my psychology background, I tend to agree more with the creating and extinguishing behaviors as opposed to creating hunger.
The program protocol involves presenting utensils and food for a count of 1-2-3.  If the child accepts the bite, sip, or utensil, there is great praise and reward.  Refusal of acceptance is redirected by following the child’s motions to continue presentation.  The rules are presented to each child prior to the beginning of each session, even very young children.  It is very much the experiment of Pavlov’s dog.  As positive reinforcement is linked to feeding behaviors...... behaviors increase in order receive praise and happy activities.  At times positive reinforcement can be confused with bribery.  Bribery however, does not always include positive reinforcement for the one in control of the situation.  In this program’s circumstances, the administrator takes control of the therapy session, but is not the one being rewarded.
When therapy sessions begin, administrators use statements instead of questions.  The therapist would say “Ian, take a bite” present it to his lips, and count to three.  Comments such as “Ian, would you like a bite of cookie” are not used.  Therapy sessions for Ian right now at home last about 10 minutes.  When the timer is done, Ian is praised for his effort and therapy ends.  However, if he shows interest, he may eat or snack at other times of the day.  Keeping therapy sessions and other eating times separate are very important.
The rewards that Ian receives are whatever is appropriate for his age.  Toys and videos seem to be the most popular. One importance they stressed was to make sure toys and videos, or whatever he is being rewarded with, only come at therapy sessions.  If we were to use on of his favorite Elmo toys, he would quickly learn not to perform behaviors during therapy sessions in order to play with him...... simply because he could hold out until a later play time to have him.
The program also offers fun time and support and relaxation for the families.  Art activities and music are available to give children time to play, along with many other choices.  The families are able to attend weekly support groups, speak with counselors, and even receive relaxation such as massages throughout the course of the program!

We are hoping that the time will pass quickly and we can begin feeding therapy “boot camp” with Ian.  Until there can be constant consistency, I’m not sure he will progress as we would hope.
One medical concern they will be following is the likely-hood of visceral hyperalgesia.  This is a condition where the nerves sense pain when they would not ordinarily.  The nerves in the viscera (lining of the stomach and so forth) are hyperactive.  As the stomach contracts to empty and food is moved through the intestines, the nerves in those areas sense pain.  Therefore, normal gastric emptying and digestion feels painful.  The nurse practitioners feel as though Ian has this condition to some degree.  They mentioned that by treating the blood sugar and dumping issues, along with gastric emptying regulations, and digestion aids, the visceral hyperalgesia has also been managed.
This condition is something I researched greatly prior to Ian’s CHOP treatment back in November.  I have always felt that this may be playing an issue.  If necessary, after evaluation and progression, medication may be introduced to help relieve these symptoms.  The medications used are the same ones used for other nerve and muscle pain perceptions.... such as Neurontin and Lyrica.  Hopefully we will be able to work around these medications.  In the meantime, we will continue to work with Ian at home.
From a non-medical standpoint, Ian is getting smarter and smarter each day.  He identifies lots of animals, shapes, and colors and understands more in order to be a better listener.  He is an excellent helper around the house.  His curiosity grows each day and he is always into something.
He has the brightest smile every morning when he wakes up and seems to be the “freshest” then.  He is much more a morning person than an evening guy..... very much like his father...... and unlike me!!  We are still using the comfylift bed for him and he loves sleeping on it.  He always looks so peaceful sleeping.  It fits perfectly in his crib in his room so he didn’t have to change the environment.
He enjoys sticking food with forks and scooping things with spoons.  he even puts empty utensils and food to his mouth.  But then they immediately go back to the plate.  Sometimes he sucks the juice out first, like watermelon.
As we work with Ian at home I will update everyone on the successes and setbacks..... hopefully more of the former!
The link for the program is: