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.

First Day of School!

He loved it!  I'm surprised he let us take him home.  :D

With love.

Today James Sat

Completely by himself, unsupported.  He has made so much progress but he just couldn't go that last step.  It felt like he could take months before compiling enough courage to sit without a safety net.

We were doing some supported sitting today when he decided to flop forward onto his stomach.  I just plopped him back up to see what he would do.  I've seen him lean forward off his support and sit well, but only for a second or two.  This time he stayed up and sat there looking at me like it was no big deal.

I can't wait to do more sitting tomorrow!  What a big day!

He looks so great!

With love.

Getting Somewhere

We finally feel like we are getting somewhere in terms of sitting!  We were able to ditch the infant car seat (FINALLY!) and get James in a normal, upright, but still rear-facing toddler seat.  We have been able to do much more playing in a supported sitting position (check that goal off our IEP!) and James can sit in the shopping cart at the grocery store which is super exciting!!!  He is so close to sitting on his own he just needs to work on balance and confidence.

We propped James up with just a little support and let him watch a movie so he would be distracted enough to sit well.  I was spying through the banister, excited to see him sitting so well, but he caught me.  :D

James in the shopping cart!

With love.

Snapshots of A Birthday

James' first celebration without any looming medical issues!

I tried for weeks to find a dessert that James would eat.  On a last-ditch attempt I found he liked this avocado-based chocolate icing that is dairy and processed sugar-free!

With our first "normal" summer we were able to have a little party!

We are so excited to be blessed with the gift of health this year and pray that we continue physical therapy with vigor to help our James grow strong!

With love.

Why I Love My Son's 3 21s

James turned two last week and I am in a nostalgic mood.  We are finally starting to feel distant from the emotional struggles and exhaustion of the past few years which is refreshing, but we appreciate these years for the growth, faith, and love that we received and were able to give.  A friend recently had her twenty week sonogram and the doctors told her that they suspected Downs.  It was odd being on the "observing" side of the situation, but I was so glad that we could be there for her and her husband because it is a confusing feeling to hear that your son may have an extra 21st chromosome.

I remember well how confusing it is.  We couldn't figure out how to pray.  We wanted our baby just the way he was, the baby that we loved, the baby God had blessed us with, but should we pray away the struggles that come with the possibility of an extra 21st chromosome?  Every parent wants what is best for their child and it is hard to believe that mental delays and physical struggles (sometimes involving surgery) are what is best for him.

I have only just realized the best way to pray in these situations.  The only way to make heads or tails of wanting what is best while still accepting God's will is to ask for what is "good" for the child.

"Good" is so different from most parents' wishes: health, happiness, an easy life.  The sentiments are natural but not necessarily the most important.  Health and happiness will come and go (who hasn't had a rough relationship, a bully at school, terrible strep, or an ER trip with some crazy story?) and life needs character-forming struggles.   The best life is a good life.  "Good" goes deeper, it hits the core of who we are as people, how we see the world and interact with it.  "Good" is how we approach each conversation and action.  "Good" is how we love.

James certainly has a "good" life.  He radiates goodness and love to everyone he meets.   His interactions with others are the deepest level of goodness.  People I have never met like me because of my beautiful, friendly, happy James, my son that challenges me to be a better person, to give pure love.

Most people equate quality of life with health, success, happiness, and friends.  Because of this many "poo-poo" the quality of life of people with an extra 21st chromosome.  Oftentimes people with Downs do have medical struggles.  Because of mental delays people think kids with Downs won't succeed in education and other endeavors.  And with mental delays how will they be happy and develop friendships?  These people are severely mis-informed and, I believe, scared of people with Downs and have never met and interacted with a person with an extra 21st chromosome.  The health aspect can be difficult, but I can't tell you what a bright light James was through his hospital stays.  He flirted with every nurse and won everyone's hearts even in the midst of his struggles.  Mental and physical delays are not the cross everyone believes especially with the magnificent (and sometimes free) programs for development.  And it is incredible to see the happiness radiate from these kids and adults, the friends they develop and have for life.  It is just beautiful.  Who can say these kids will have a terrible quality of life?  They may have to work a little harder, but they certainly have a "good" life!

Back to the title of this post: "Why I Love My Son's 3 21s".  It is simple.  They make him who he is; the always happy, dancing, music-loving, waving, giggling, affectionate, stubborn, strong, social-butterfly that he is.  I wouldn't want to get rid of my son's third 21st chromosome because then he wouldn't be James.  We love him exactly the way he is and isn't that one of the best things to have in life?

James' third 21st chromosome means he will have to work harder than most kids, it will teach him determination, discipline, and perseverance.  It means he has a heart so open to others that he radiates love.  It means he will be a witness to the "goodness" of life no matter what the circumstance.  Can you imagine having that kind of joy in life?  I am sure that extra chromosome means so many things we have yet to discover and I can't wait to find out what this next year and the rest of his life brings.  There have been many difficult times, stressful situations and struggles, but, although he has been the one in pain, James has brought us through them with love.

I am grateful to James for the gifts he has given me just by being who he is.

Happy son on his second birthday!

With love.

Happy Birthday, James!

With love.

A Room of His Own

I hope to have some pictures of James' new therapy room up later this week, but here is a sneak preview:

James' therapist brought him a chair that we can strap him into so he can sit better.  Mark made a little table to go with it so James can do some good hand play and get his feet out of sight.  We are still trying to convince James that it is fun to use his hands.

With love.

Indulging in Italian Heritage

James had his first spaghetti!  We've held out before on the chance that he has a tomato allergy, but he did well with the new food.  He didn't have actual spaghetti noodles but spaghetti squash which cuts down on the worry that it will disagree with his little stomach (he's had squash before and it is a whole, unprocessed food unlike spaghetti).  As you can see in the video James got a blend of our dinner which consisted of spaghetti squash and Mark's famous spaghetti meat sauce.  He liked it until he decided he was done (possible sensory overload from the new tastes) and decided to spit it out at which point we had to stop the video and discipline him.  Kids with Downs are very smart and know when they are doing something they shouldn't and James definitely knows that spitting is not the way to tell us that he is done eating.  We had to give him a little slack because the sensory experience may just have been too much for him.  We'll have to try again when make spaghetti this week.

This new food was extremely exciting to us as parents as we are taking small steps closer to normal eating.  James has been working on chewing small, soft vegetable chunks and now is expanding his oral sensory experience with new foods.  This is a big deal for him as he doesn't deal well with oral change, not uncommon for kids that have oral delays.

Here is a video of James' first spaghetti.  I apologize for the boring parental conversation, it is a pretty standard James-related conversation as we work together to help James develop his skills.

With love.

In Philadelphia!

Pictures first today.

St. Rita's Shrine, Philadelphia 

Liberty Hall, Philadelphia - Both the Declaration of Independence
and the Constitution were signed right behind us.

Liberty Hall and the Founder of the Navy

Enjoying the day.

Not sure why he is getting his picture taken with a big broken bell.

Haha, just kidding.

Philly cheese stake!

James was happier with his own meal.

On Monday we went on a mini-pilgrimage to Philadelphia to the shrine of St. Rita, the wonderful saint that helped up through James' pregnancy, surgeries, feeding issues, etc.  We didn't know it existed until our friends gave us a perpetual membership to the St. Rita Society as a Christmas present.  We made it in time for Mass and were able to explore the basement of the shrine that contains two relics of St. Rita.  As we attempted to get upstairs to the main church a woman flagged us down and said she wanted to say "hi."  She had seen us in Mass (who hadn't, our kid is loud, but everyone loved having him) and told us that she grew up with friends and relatives with Downs and loved "God's little angels."  She was so kind and took us over to the rectory to help us get the key for the upper church where the parish secretary was so friendly to us as well, telling us about her son with special needs.  Needless to say we felt welcomed.  The upper church was absolutely gorgeous, but we couldn't stay long because we had a hungry baby (and a hungry husband).  

We got Philly cheese stake #1 at Pat's King of Stakes, the original cheese stake place in Philly before heading to Liberty Hall for a tour of the historic buildings.  James was really good during the tours, although loud.  We think he liked being around lots of people.  

We drove around, found the St. Cardinal John Henry Newman shrine and found Philly cheese stake #2 at a little shack that is rated in the top 10.  We took a nice long walk along the Delaware River after dinner which James loved before hopping back in the car and heading home.

James absolutely loves car trips.  And music.  

With love.