A Hawaiian Christmas

It has been a crazy few months, hence the silence here.  Here is a snapshot of Christmas and hopefully I will have another post soon.  James received a farm puzzle to help with isolating his fingers, a tunnel to motivate his crawling (I have never seen him crawl so fast and enthusiastically.  I am so happy he loves it!), a music kit for singing time, and a swing to help with his vestibular motion (he has a major love/hate relationship with swings, but it is good for him!).

He is actually really happy here!
 

We talked about having a Hawaiian Christmas a few months ago when we saw the racks of Hawaiian shirts at Salvation Army.  When Mark found out he had to work on Christmas we decided it was the perfect way to "get in the spirit" when he got home.  We changed into out tropical clothes to decorate the tree, open presents, and have our Christmas feast.  I think our family picture gives away that Pilegaard baby #2 is on the way.

With love.

James Welcomes Daddy Home

James really missed Daddy while he was gone being a mountain man.  We were able to film his reaction to Daddy's reappearance at the airport:

With love.

James' Baby

We finally found James a non-girly baby doll.  Several therapists have suggested it as a good tool for learning body parts, getting him comfortable with new situations, etc.  James has been struggling with bath time lately (not sure why, but the water, all of a sudden, freaks him out) and, of course, with eating.  Here is what James and baby have been up to:

James loves to hug and snuggle his baby doll:

Bath time has been so much easier with the baby doll.  James is ok with water on his head since baby doll gets water on his head as well.

Baby doll gets a bite, then James gets a bite.  It did encourage James to eat, but it may have taken twice as long.  We haven't tried it again since.

Tonight we sang "Head, Shoulders, Knees, and Toes" with baby doll.  I think we'll keep it up to see if James picks up the body parts.

He has also been saying the word, "baby", all the time.  He sure is a fan!

With love.

Sweet As Candy

Every day I am reminded that my James is just as sweet as can be (even though he sure does like to scream!).  After a doctor's appointment this week James got a dum-dum lollipop and actually enjoyed it!  I was surprised he let it in his mouth in the first place, but after a sweet taste he was all for it!  Mark and James traded licks and James actually had a great pucker!

After the appointment we ventured into Whole Foods and found a more natural type of lollipop, hoping it might be a big step to overcoming the hurdle of his aversion toward solid foods.  So tonight we were able to have family desert time.  Mark splurged on a small container of ice cream (which James can't have, sorry, dairy!) and we armed ourselves with a lollipop.  We were able to capture his initial reaction:

After this he really warmed up to the 'pop, even trying to grab it out of Mark's hand, and sucked on it for awhile.  It was nice to see him exploring a new food and enjoying it, even if sugar was the catalyst.

His mouth muscles are working hard!

He also said "NO!" for the first time today, he imitated me as I read to him.  I couldn't get him to say it again.  Maybe that is a good thing?  ;D

With love.

Falling Hard

September has been a flurry of activity, so many doctor's appointments and therapy sessions!  His genetics appointment went well, nothing new from cardiology, and we are waiting for James' orthotics to be created.  We opted out of county speech therapy (will write about that separately) and will start educational therapy through the county instead.

I hope October will be slightly calmer (or that the activity will be more fun).  James has been working hard to strengthen his leg muscles and stands (with the help/force of the stander) at least 30 minutes each day.  We are beginning to see some real progress.  We are going back to see James' feeding specialist/speech therapist/cranial sacral extraordinaire this month and are so excited.  She is the only person that has gotten results (and James has worked with 5 other speech therapists) and we hope she can help us climb the brick wall we have hit.  James eats well, but we can't seem to move into the chewing stage.  He is starting to learn the concept, but is very averse to it.

With the stress of stalled feeding development and attempting to teach our son to stand, in addition to the awfully slow arrival of two year old molars and the awfully fast arrival of cold season, we have struggled to keep positive.  We had a couple weeks where we just didn't know how to handle this state of perpetual infancy.  Luckily, we've taken a weekend or two to step back, take a break, and relax from the chaos.  With rest, prayer, and encouragement we made it through the worst weeks.  I appreciate our family that pushes us to keep going.  It is easy to get bogged down in the day-to-day and not always easy to remember all the good progress James has made.  I can't believe that this time last year James was on his feeding tube with no real thought of weaning him off.  That is enough to make me thankful for where we are.

Now that we have picked ourselves back up we are ready to enjoy the Fall.  :D  James and I had a chance to go to Aunt Melanie's soccer game last weekend.  James loves watching soccer and he enjoyed sitting on our picnic blanket, crawling around the grass after his ball, and watching (or chasing) "Referee Rich" (aka Granddad).  I think he paid more attention to what my dad was doing than what was going on in the game.

With love.

New and Improved

James is learning so many new things!

How to stand:

We were lucky enough to borrow this "dinosaur" of a stander from the early intervention office.  He has a platform to stand on and the front leans forward slightly so it is a little easier to stay upright.  We are so grateful to have it, but people keep telling us it is old and, ideally, we need something else.  I don't mind at all, it does the job, helping James put weight through his legs!  He is getting more comfortable and we hope to do a couple segments a day so he practices for about an hour.  James was cast for orthotic shoe inserts today.  They will help support his ankles (they roll in when he stands), keep his toes from curling under, and give his low-tone muscles a little help.

How to play:

Sitting with the big kids, James played his first game of "Duck, Duck, Goose"!  

How to snuggle:

James has always been good at this one, but he has been stellar lately!

With love.

Barbara Ann

Our son was born to sing and dance.  Last night he woke up soon after falling asleep and wanted water.  We gave him a drink, turned his music back on, and tucked him back in.  Even in his exhausted state he started groovin' along to his lullaby.  He picked his head up, did a couple wiggles, flopped back into his sleeping position, picked his head up, and danced again before falling asleep.

Unfortunately, we didn't get that on tape, but we did get the following video.  Whenever we ask him if he wants to sing he starts singing "baa baa baa."  We usually sing "Baa Baa Black Sheep" or, his new favorite, "Barbara Ann."  I don't think you can hear it, but he is singing along to the song in the video.

With love.