This Is What Our One Year Old Looks Like

He liked his watermelon italian ice.  :D



With love.

Happy 1st Birthday, James!!!

Look at the stars, look how they shine for you

And everything you do,

Yeah they were all yellow...

Your skin, your skin and bones

Turn into something beautiful.

You know I, 

You know I love you so, you know I love you so.

I swam across, I jumped across for you,

Oh what a thing to do

'Cuz you were all yellow...

You know,

For you I'd bleed myself dry, for you I'd bleed myself dry.

When James was in the hospital for heart surgery I had a few special songs I would sing to comfort him.  Although he preferred Wagon Wheel, this one was my favorite.  I've always liked the song, but it had new meaning in our situation.  I still love to sing for him when I tuck him in at night and, although I don't always remember the correct words, the sentiment of this song means a lot.

It is amazing to look back over the year and everything James has been through: learning to eat, having a feeding tube in his nose, physical therapy, a virus that sent him to the hospital, a "tet spell," g-tube placement surgery (twice), more physical therapy, heart surgery, speech and feeding therapy, several ER visits, winter isolation, a g-tube lodged in his intestinal valve, more physical therapy, and learning to eat again.

I really admire our son.  He has been so brave and happy through everything.  He has truly taught us to appreciate life.

To be honest, I didn't think we would make it to his first birthday.  I can't count the number of times we received terrifying predictions and diagnoses from doctors, but James has proved everyone wrong.

We thank God for our beautiful son (even when he wakes up and screams at 4:30AM) and can't wait to see what this next year has in store.  Thank you all for your support and love!

Check out his early morning birthday dance party:

With love.

Spoonfuls and Mohawks

James is learning to eat extremely well and receives interesting fashion advice from his dad.  Check it out:

P.S.  The weird rumbling noise in the background is Mark attempting to coax life out of our Magic Bullet.

With love.

Aunt Melanie

:D

Flying Food Part 2

:D

With love.

Celebration Smiles

Celebrating the end of hospital bills, hopefully for awhile!  James loves eating outside at this restaurant, he did really well eating his sweet potatoes.  :D

First birthday cake with the Great-Granparents!  His first birthday is only a week and a half away!

Flying Food

Figuring out ways to gather the nutrients James needs into a vessel that will then push those nutrients into his tube extension is quite exhausting.  I am starting to feel more adept at creating and administering his meals, but boy when it comes to the syringes we use this is how I feel:

Dear Syringes,

Your ease at loosing any sort of lubricant, making it near impossible to push the already difficult blended liquid into James' g-tube, is near maddening.  Please refrain from your devious ways and work with me.  Otherwise I will be forced to throw you in the trash.

Sincerely,

Me

It can be funny at times.  Yesterday morning I measured James' liquid vitamin in a syringe and proceeded to adjust the measurement.  The lubricant on the stopper decided to work half way through the process and the vitamin ended up all over the ceiling.  That stuff is gross.  It wasn't funny at first but as I finished cleaning the brown goo off the ceiling I did chuckle a bit.  I was forewarned when we started this diet that there would be goop everywhere, including our ceiling.  Until yesterday I had been able to contain the explosions to the lower regions of our kitchen.  It does get difficult to suck the goopey food into the syringe and then work out the air bubbles without food going everywhere.  And pureed chicken does not smell so good all over me.

I realized that I have not put a diagram of James' tube on this blog.  So, in order for you to understand what I am talking about, here you go!

The tube in the picture is type James had for the first three months.  The balloon (small blue circle in the stomach - this is what keeps everything in place and can be inflated/deflated by a small, external port) and tubing are all one piece.  James now has a "button" which is an internal balloon connected to a port on the outside of the stomach.  We attach a tubing extension to this port when it it time to feed.  It has been a blessing now that James is moving around as the tubing doesn't get pulled along with him.

So the basic components are the internal balloon, external port, and extension tubing that attaches to the port.  Then, of course, there are the things we attach to the extension tubing: 1. the tube from his pump which we use for breast milk feeds, 2. catheter tip syringes for his blended feeds.

Hope that clears things up!

With love.

P.S  Today, we finally paid off James' hospital bills from March!!!!  I think we will have a little celebration at our favorite restaurant.  James' loves it because we get to sit outside.  I'll try to get a picture of his cuteness!

A Great Ab Workout

We ask James to do a lot.  He works hard all day doing things that would come naturally to most kids.  One of our big tasks is strengthening his core (abdominal) muscles.  These muscles help with many important body movements, but the specific function we are working toward is sitting.

James does a lot of strengthening while he plays: rolling, eating his toes, tummy time, etc.  But, we need to help him along.  The Bumbo seat has been a great tool as it supports James while sitting, but still allows him to do some of the work.  We are working on more ways to use it (maybe a bath tomorrow so he doesn't try to roll in the tub).  Here are a couple:

On a different note we "bit the bullet" and bought one of those tiny, single-serve blenders, the Magic Bullet.  The small volumes were are using for James' feeds won't blend well in our blender because there isn't enough for the machine to work with.  Cue Magic Bullet.  It was way easier to put James' meal together tonight.  I didn't have to add ounces of juice or broth just to get it to mix, which would really mess with the calorie to ounce ratio.

Also, thank you to the Cunninghams for the Bible Songs video.  It kept James fixated on the TV for 15 minutes today which was a huge help to me.  :D

Enthralled by Bible Songs.

Great uses for the Bumbo and Kitchen Accessories!

 With love.

Real Food for Small Tummies

We couldn't be more thankful to switch James to a blended food diet.  We are finally starting to get the hang of things and today's blended creation looked better than ever.  Here is the plan:

1.  Start James slowly.  In the beginning we didn't start slowly enough.  We didn't jump in all at once, but we increased more quickly than James' bowels were able to handle.  Now we know the warning signs and how to counteract problems.  Out of 4 daily feeds James gets a half feed of a blend and three and a half feeds breast milk.  He is handling this extremely well and we hope to increase to a full feed on Friday.

2.  Start with easy, healthy, non-allergin foods.  We are trying a "combination" diet which blends food that digest well together.  We are also going completely organic.  Often times the pesticides in food aggravate already sensitive tummies.

3.  James will eat what we eat.  This isn't entirely true.  If we are having something on the less healthy side of life we probably won't blend it up and give it to James.  But, the goal is to make James' meals mimic our family's meals as much as possible.  This makes him part of our mealtime in a very natural way.

We are using the following combinations for his feeds:

Chicken, Green Beans, and Olive Oil

Green Beans, Sweet Potato/Carrots, and Olive Oil

Green Beans, Quinoa, and Olive Oil

As we continue, and when we get a blender that can handle more foods, we will add more.  We can try a new food, watch for allergies, and, if everything looks good, add it into the rotation.

The nice thing about the blended diet is Mark can get more involved.  It can be very stressful to calculate mixtures and count calories, but we feel so much better giving our son real food.  James has looked so healthy since we have started this diet and we can't wait to see how it helps him in the future. The other sacrifice of the blended diet is less use of our feeding pump.  The blended food has to be pushed into the tube gradually through a syringe.  This takes a bit of time and isn't hands-off like the pump, but it is nice not to worry about James pulling on his pump tube and it gives him more freedom to move.  We have settled into giving James 10-15 mL every ten minutes until finished.  He may have anywhere between 60 and 90 mLs per half feed.

Check out his food:

Green Beans and Quinoa

Syringe-full of Goodness!

Going dairy-free for James' sake has been a big challenge, but it has been worth it to keep him healthy until we could get to this point.  I can't imagine what would have happened if I gave up and switched him to all formula.  Moms, pumping is not fun, but it is worth it for your child!  

A dairy-free diet is rough, but it has made us healthier, more creative and resourceful.  Check out our dairy-free, delicious pizza we made for dinner tonight.  We used homemade pizza dough and sauce (you can use store-bought, I like to do it myself), organic pepperoni and veggies, bake at 400 degrees for 15 minutes and ta-da!  A fabulous, non-dairy dinner!  It took me a couple of months to learn how to cook without dairy, but I don't have many problems anymore, even when it comes to baking delicious goodies.  There are all kinds of options out there and it is fun to learn how to do something differently!

An awesome dinner!  My first pizza in 9 months.  Why didn't I think of this before?

With love.

Home, Sweet, Home

James got to meet all the California relatives!  We had such a great time, it was so hard to come home.  Some highlights from the last two weeks:

1. James is now an expert clapper.
2. James is a great flyer.  We only had one small grumpy leg of the trip.
2. James received his first haircut by the same barber that did Mark's first haircut.  It was MUCH needed.  His curls are gone, but he looks very dapper.
3. We found a nutritionist to monitor our blended food diet!  James did very well with the blended food we gave him on vacation and we are looking forward to increasing his menu.

Vampire sleeping on the plane.

Before.

During.

After.

More about his new diet later in the week.

With love.