Friday, February 27, 2015

Intensive Feeding Therapy - Week 1

Not ready to work!
This Wednesday, James started intensive feeding therapy.  Due to his stubborn nature, the speech therapist decided against the normal course of action, two full weeks in the program.  Instead, she asked us to come three days a week for three to four weeks.  Generally, each day, his schedule consists of three meals with the speech therapist, an hour with physical therapy, and a half hour with occupational therapy.  We have small gaps here and there where the kids get to play in the Kids Zone that has lots of toys, activities, and free books(!).  Yesterday they had a musician who had a little private by-request concert for James and Rita.  They loved hearing "Wheels on the Bus" on the ukelele.

It was an exhausting week, but here are some highlights:

1. James is eating much better at most meals, not fighting us, but willingly feeding himself and at a faster rate.  The speech therapist noted that, thanks to his stubborn streak and age, James really wants to exert control.  When we ignore his "no" tantrums and don't "force" or ask him to eat he does so willingly.
2. James can bite.  We worked on biting on a fruit chew and he did really well.  Today he even took several bites of a brownie cookie, using his front teeth.  He spit most of it back out.  The therapist wants him to be comfortable spitting foods out so James doesn't feel scared of food.  He did, however, wash a few crumbs down with a sip of milk.
3. James played with shaving cream.  James is really sensitive to anything sticking to his hands.  This, of course, makes self feeding difficult.  He played with shaving cream in OT today which was great!  He usually doesn't touch anything "sticky."
4. James did well with self-feeding.  We had to give him a break sometimes, but he did really well bringing the spoon to his mouth.  The therapists agreed that his low muscle tone just makes everything so much harder for him.  Even lifting a spoon can be a difficult task.  We found using plastic, instead of metal, spoons work much better.  The therapist added a big round piece of foam to the handle that makes it much easier for him to hold.
5. James took 100 steps with his walker three days in a row!  The PT used a backwards walker so James didn't have a bar in front of him, but had supports to hold on the sides.  The walker also had a small core support since he is still building his muscle strength.  He still needs a lot of encouragement to take his steps, but is doing so well!

James did so well at dinner tonight.  He had a fit here and there, but we were able to ignore it while keeping a normal flow of conversation and motivate him with favorite foods.  It was the least-stressful dinner I've fed him in a long time.

With love.


Sunday, February 15, 2015

Crazy Winter

Every year I think the pace of life will slow down in January.  And every year I am WRONG!!!  January was a crazy month.  James started weekly feeding therapy after being on the wait list for 6 months.  Of course, we are about to start the intense program so I don't know if we'll be able to keep it up or need to.  Poor James dealt with major constipation issues which, in turn, caused serious feeding issues.  We had to give him enemas on a regular basis and had to fight to get him to eat for about a month.  Luckily, adding prunes into his diet has made a big difference and regular popping means he is eating well again.  With better eating we are able to do more work on self-feeding, tastes, and textures.  He LOVES prunes.  It is really nice that he is developing favorite foods that motivate him to eat.  He likes prunes so much that, last night, we were able to get him to pick up the prune-filled spoon, put it in his mouth, and place it back on his plate.  He did that two times before refusing any further attempts, but he has never done that willingly.  These small victories make me very hopeful for success with the intensive program.

James also, FINALLY, after six months, received his gait trainer.  It is like a walker with more support.  We need to work on his acceptance of this new technology.

With the chaos of January we were so excited to get away from the stress and the cold and hop a plane to Florida.  We've never taken a real Pilegaard family vacation and were more than ready to leave therapy and school behind for a bit.  It was so nice to have the opportunity to step back from food fights and tension; to have the chance to sit at the table as a family, three times each day, and have a good time eating.



The kids had a great time!  They were so happy to all be together.  We took it pretty easy, but did a lot of walking!  We'd hoped to spend most of our time at the pool, but it really only hit 75 on the good days which was wonderful, but a little chilly for the pool.  So, we ended up at Downtown Disney quite a few days as well as playing mini golf and biking around the resort.  The couple days we stayed to hang out in the pool were wonderful, but we only lasted about an hour before James was shivering.

Rita and James did well sharing a room.  James slept in a big boy bed, but crawled in with Rita one morning.

First time bowling!

These two like Cuban food - they ate half my yuca and plantains!
James took a couple swings.

James wasn't the happiest biker.




We did Disney one day.  Rita LOVED it, James enjoyed himself, but got overwhelmed at times.  I think his favorite rides were Dumbo with Granddad (he was there for a couple days on a business trip and go to do Disney with us!) and the train.  Rita's favorite was definitely the Merry-Go-Round.  James is not a fan of riding the horses.  At all.  They both liked the electric light parade, although James decided he was done about half way through.  He also wasn't a huge fan of the fireworks (Rita loved them), but did well snuggling with me and clapped with everyone at the end.

In the Dumbo behind Rita, Mark, and me.

Taking James on the cars!

Rita's favorite.

James is content in the marry-go-round's carriage.
This is our last "normal" week before we start the feeding program.  Please pray that it goes well!

With love.