Saturday, March 7, 2015

Feeding Therapy End of Week 2

So worn out after therapy on Thursday.

This week was just rough!  After two days at the hospital with unsuccessful meals (he threw fits through them) I was about ready to give up.  We were snowed in at the hospital last night and James and I had a snuggly snack before bed.  He ate really well, sitting in the chair with me, and we even took some "pirate" bites (thanks, Aunt Lily!) on his fruit chew.  He took a big bite out of a chocolate "brownie", but freaked out and didn't know what to do with it.  He was able to spit it into my hand which is exactly what we wanted him to do.  He needs to feel comfortable with food and knowing that he can spit something out is an important part of that.

We were snowed out of 4 of our 5 appointments on Friday which was really disappointing.  James finally took a good nap, ate a good meal, and pooped Thursday afternoon so I hoped Friday would be promising.  We are trying to decide whether to keep going with the program or stop here and try again in a few months.  James is determined to do everything on his own time and it is clear he will not reach the goals we set.  We are trying to be content with the progress made.  We have moved from pureed to mashed food and he is able to spoon-feed as long as we fill the spoon, although sometimes he misses his mouth!  :D

I appreciate that his therapists constantly remind us how low his muscle tone is and, consequently, how difficult normal tasks are to accomplish. He really need more core strength before he can really progress. 

Working on core strength.

Swimming during the snow!

With love.

Wednesday, March 4, 2015

Feeding Therapy Week 2, Day 1

Today's feeding was pretty rough. James had snack as soon as we arrived today, but he just didn't want to cooperate. He had PT afterwards and did really well. He walked up and down an extremely long hallway in his walker. Then, in OT we did some swinging and played with shaving cream. Then, lunch didn't go well, either. It was pretty frustrating. We hoped to work on chewing today, but James wasn't in the mood!  It was a little discouraging, but I'm sure it wasn't easy for him to transition back into the program today. We are hoping that snow won't ruin the rest of our week and that we won't be stuck here!

With love. 

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.

Sunday, December 28, 2014

Merry Christmas!

We finally got our tree up and decorated on Christmas Eve.  It is turning into a tradition that we all decorate together the night before Christmas.  We were pretty behind this year with lots going on with the kids, especially James, so we got our nativity scene, stockings, and rest of our decorations out that night as well.  We had a great time listening to Bing Crosby sing Christmas songs (that's what my family always had on while we decorated our tree) and spend time together.  James enjoyed the tree, but wasn't super into decorating.  The kids had to go to bed before were we all done.  They were pooped!

His "James" ornament.

The kids woke up really early Christmas morning so we went to early Mass (which was awesome because it was nowhere close to full) and took a drive.  They both LOVE riding in the car and it gave Rita the chance to take a good nap.  They looked so cute in their Christmas outfits:

He is good about kissing her after he hits her.  :P

Discussing the essence of ball.

Handsome boy on his 4th Christmas.

James didn't enjoy opening presents.  He was really content playing with his books and wasn't happy when we tried to refocus his attention.  He still doesn't understand the concept of presents.  I keep hoping each year will be different, but I guess that's me trying to impose the excitement on my children.  :p  Rita, on the other hand, loved it!  

James got into a present he made for us while we were making breakfast.

He did like pulling things out of his stocking.

They received sensory balls.  We saved those for last; we knew there would be no focusing after that.

Their big present was a ball pit.  It was awesomely easy: a clearance inflatable pool with all the balls they have plus one bag of ball pit balls.  We may fill it more eventually, but they love it as is and a sparse ball population makes it easier for them to move around.  They both loved it!  We all had a blast sitting in the pool throwing balls at each other.  :D  I love having things like this we can all do together.

Merry Christmas to all!

With love.

Thursday, December 18, 2014

Next Steps

James is doing a lot of work and having a lot of fun. Not only does he have three outpatient therapies and three inpatient therapies, but he is on his way to independent feeding. Yesterday, we went to the feeding clinic at UVA for pre-program evals. James had fun during OT and PT, but he didn't do well when the ST was more demanding of him. It was nice to have someone else take control and push James to help himself, not backing down with his fits. I am pretty nervous because it will be an intensive program, but it is what we need. The whole process is going to be much quicker than I expected so I hope he will be feeding himself and chewing by the spring. 

James likes waving at the cars that drove by below the waiting room. 

It really is a beautiful place. 

With love. 

Saturday, December 6, 2014

Frozen at the North Pole

Yesterday we took James and Rita to see Santa with my family.  The line to wait was super fun because it was Frozen-themed.  Once we waited twenty minutes we walked into the Frozen snow globe, a dome with the songs from the movie and snow falling from the ceiling.  The kids were enamored by the falling rice-mixture.  I'm sure people thought we had terrible dandruff for the rest of the night, but it was really neat.

He doesn't like having his picture taken anymore.
Then, James enjoyed making faces with Grandmom and throwing snow at Aunt Becky.


Great bunch, huh?

With love.