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.

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.

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. 

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.

Hugs!

Great bunch, huh?

With love.

The End of Fall

We had a great time yesterday at the playground on the last warm day of the year. James loved the slide and throwing mulch but wasn't too fond of the swing. Rita, on the other hand, loved it. She sat in the swing watching him throw the mulch and they were both really happy. Rita tried the slide a few times and enjoyed it too. We're sad to see the end of Fall, but looking forward to the calm of winter.

The swing made a good chew toy for our teething daughter.

He has a good follow-through when he throws.

With love. 

Huge Speech Milestone

James just signed and said a two word phrase without prompting!  When we were reading Chicka Chicka Boom Boom this morning he asked for Daddy and I told him, "Daddy is working."  Half an hour later, while eating breakfast, James said, while signing, "Dad work."  I have never seen or heard him put together a sentence on his own!  It was fantastic!

Apple Picking

I've been so overwhelmed by the amount of pictures of the kids that I haven't known where to start with a post.  So, I will just start throwing things up here.

On Halloween we went apple picking with Aunt Becky and Aunt Laura.  James enjoyed himself, especially because he was able to carry a chocolate bar all over the orchard.  The orchard was giving out Halloween candy and I grabbed him a chocolate bar.  He really enjoys food covered with sealed plastic wrap and I figured, if he did decide to eat it, that would be the only candy he could handle.  And he does really enjoy chocolate.  So we ventured all around looking for Fuji's.  Either we couldn't read the map or someone misspoke about there being plenty of Fujis.  It was really fun walking the bumpy rows with two strollers.  Rita loves bumpy rides in the stroller so at least she enjoyed it and it put her to sleep.  We did find some awesome apples and James enjoyed putting them in the bags.  While I was focusing on filling our bushel the aunties gave him the chocolate and he ate it!  He licked it until only half of it was left.  He thoroughly enjoyed himself as you can see from this picture:

He fell asleep soon after he finished his bar.  I'm not certain, but I think he had a pretty bad stomach ache the next day and the chocolate is the likely culprit.

He also got to drive the "tractor" and really loved it.

With love.