Thursday, October 25, 2012

Happy Halloween!

William is five months old now- how time flies! We are ready for some Halloween fun!

Will is working hard at physical therapy. He loves it. We have met a lot of goals in only two weeks! He is rolling now, sitting better and longer, bouncing on his feet, and more!

We hope y'all have a fun and safe Halloween weekend!

Sunday, October 21, 2012

Music and molasses festival

Yesterday we took will to the music and molasses festival with our friends! It was a blast and the weather was perfect.


William was accepted for an organization called inspiration through art. They helped us connected with a local photographer who did a photo session for us, Tausha Ann Photography. She was great! These are some of the pictures she did!

Monday, October 15, 2012

How it feels to be a heart mom

I wrote this poem this morning. The photo is by Tausha Ann photography.

How does it feel to be a heart mom?
How does it feel to fear the worst?
To cry tears of joy just to hear
His heart failure has been reversed

To spend hours in a surgical waiting room
Not knowing what news you'll receive
What's happening under the knife
While people urge you to "just believe"

How many times do we wake up at night
Just to make sure they're alive
Then lie in bed and wonder
Will my baby live... Will they thrive?

We are told that the future is unknown
All we can do is work on today
So we go to our appointments
And pray that things are okay

You hold your breath at every nuance
Hope that this visit is brief
And all of his good X-rays and echoes
Bring only temporary relief.

How does it feel to cheer and rejoice
When they drink just a sip or two
While healthy babies eat too often
And that sounds like heaven to you

How does it feel to cherish
Every time he is in your lap
Because you remember what it's like
To have a week long gap

To feel anger like you've never known
When others express sorrow and pity
When they say "I feel so sorry for that poor baby
"But at least his eyes are pretty."

To wonder daily if you've made the right choice
Why did I put him through pain?
But at the same time I know he deserves life
It's something I just can't explain

I hate that I know how to drop a tube
Or that I know about iv mil
I don't want to be medically savvy
But I must advocate, so I will

People tell me that I am strong
If you were me, what would you do?
My life belongs to my child
I do what we need to pull through

One thing I will never know
Although it is my heart's desire
Is how it feels to be my son
For he is the one we should admire

I don't pretend like I'm the only one
Who suffers with my fate
In fact I feel I'm luckiest
To know my life is great

Wednesday, October 10, 2012

Card visit

Will's appointment went great! His pc said he looks awesome! He had an echo that showed a bit of improvement in function. It's still slightly depressed but any improvement is good and it could continue to improve with time. The best part? We don't have to go back until next year! Our next visit is in January. This will be the longest will has ever gone without seeing a cardiologist! Love it.

Tuesday, October 9, 2012

Physical therapy.

The good news is that William passed his OT evaluation. The disappointing news is he did not pass his physical therapy eval. I was fairly surprised because he is sitting on his own and already trying to crawl. However, he isn't bearing weight well on his arms, not straightening his legs, not Rolling over, amongst other things. The only thing I knew about ahead of time was that he didn't roll over. The rest was news to me. So, every day we will work at home, and we will go to pt once a week. It could be worse, for sure. I was just so sure he would pass.

Sunday, October 7, 2012

Busy week!

Will had a busy week and more to do this week. We still haven't heard the results of his OT evaluation. His pt eval is tomorrow. Today, we had photos done with inspiration through art through Tausha Ann photography. If you're in the Nashville area I highly recommend her! We had lots of fun and the pictures looked great on her camera screen. I can't wait to see them after she edits them! Will was a perfect angel, as usual.

Yesterday we went to a pumpkin patch, and Will had a blast!

We have a cardiologist appointment on Wednesday. I think that I will always be nervous for these.

Wednesday, October 3, 2012

Baptism and milestones

Will's baptism went great. He was so well behaved. He say through the whole service quietly playing with toys, then fell asleep right before he was baptized (which he mostly slept through). It was wonderful to get to see family and friends from out of town.

Will has suddenly reached a lot of milestones. He is reaching for and playing with toys, and he sat unassisted at his OT evaluation yesterday. Still waiting on results for that. He was tired and not completely cooperating. Lying on his back he would not reach for the toys (even though he can) and would just wait or her to put them on his chest to start playing. Some things he did not demonstrate, I showed her pictures and videos. I don't know if they count when you do them that way but it was worth a shot.

Will is still not eating well. We are pretty positive one of his heart meds is affecting his appetite. If he gets very hungry he will eat just enough to not feel hungry (half and ounce or so) and stop. So we know he is able to eat and also associates hunger with needing to eat a bottle. That's all very good. Hopefully once he gets off some meds he will feel better.