He liked his watermelon italian ice. :D
With love.
Sunday, July 29, 2012
Friday, July 27, 2012
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:
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.
Thursday, July 26, 2012
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.
P.S. The weird rumbling noise in the background is Mark attempting to coax life out of our Magic Bullet.
With love.
Wednesday, July 18, 2012
Tuesday, July 17, 2012
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!
Monday, July 16, 2012
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!
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!
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