*there's the storm

The winds took off a lot of our roof on Wednesday. We're really happy that no one here was hurt. Other parts of the state and Alabama with actual tornadoes were not so lucky.

 

Our neighbor's swing set used to sit in their backyard.

Since this is on the ground, nothing is covering the venting hole in the roof.

Leaning tree

*there's a count

Number of teeth Will has now = 5

Number of times I have left Will's feeding pump at daycare (on a FRIDAY which means we would have to feed him by syringe all weekend) = 2

Number of times Will's nurses have saved me by arranging to get the pump to us = 2

Number of times Chris found the feeding pump on the side of the interstate at night in the cold (long story) = 1

Number of times we have tried to go out to eat with Will and he vomited everywhere = 1

Number of chicken nuggets Will has stolen from other children = 1

Number of times Will has started to dance spontaneously while eating = countless

Number of times Will has given the food he is supposed to be eating to our dog = countless

I think those numbers sum up our current feeding situation. :)

*Happy Easter!

2011 Easter Egg Hunt at daycare

I'm guessing this is as close as he got to the Easter Bunny.

More pictures to come...

*there's his surgiversary

Or is it his heartaversary?

I think every day is a heartaversary so we will go with the other name.

Sometimes I write blog posts ahead of time and save them to publish later. I wrote one for Will's surgiversary months ago that sounded fairly sad. I think some grief is to be expected. But it hit me one day that this was a time to celebrate!

So then what? A party wasn't really practical. But we COULD share a yummy dessert with some friends! Taking full advantage of an excuse to eat something really bad for me, I became pretty obsessed with the idea of getting heart shaped red velvet whoopie pies. (Still a genius idea if you ask me.) But that proved to be too difficult since our local bakery had never heard of them. I'm keeping that as a goal for the future.

image of ingeniousness courtesy of cambrookefoods.com

We ended up with these delicious cuties:

 

 

Now for the original post.
This time last year we were taking videos of Will in his hospital room. Just in case it was our last time with him. Hoping for the best and preparing for the worst.

 

When surgery was over, we didn't want people gawking at pictures of Will not looking his best. If it is possible to look perfect and awful at the same time, he did. I asked other heart moms if they showed anyone pictures of their child after surgery. I got all kinds of responses: some never did, some did but people got upset with them, and some didn't think it was a big deal at all. Now that we know he is all fixed up, it seems like the time to share our pictures. Don't look at them if you prefer.

 

A few days after surgery (minus some tubes) when the fluid was at its worst.

I hope that comparing those pictures with the one below will help us remember that there is hope when life seems bleak.

Will at age 1

I don't get queasy in hospitals and I can usually handle medical stuff. We were shown pictures of what to expect right after surgery. I think that helped it not be such a shock.When we got to see him after surgery in his PCCU room, the nurse explained all of the equipment and medicines and I was fine until she said "This is the chest tube" and my eyes followed it to the floor. Chest tubes drain excess fluid out of the body. It went from the middle of his tummy all the way to the floor into a box to measure what collects there. At that point my knees got weak and I had to sit down. I've never experienced anything like that before or since. It wasn't because it was gross, but I think it must have been a symbol of how fragile he was. It didn't help that my mind magnified it to the point that I was imagining it much larger than its actual size. That tube was my least favorite thing about the PCCU.

Will's surgery day was memorable and life changing. We hope he never has to do that again.

To my son,
I write this as I wonder,
Will you ask someday?
Why do I have this scar mom?
Did God make me this way?
What will happen to me?
What does my future hold?
Will I hold my own children?
Then live until I’m old?
I think about your future,
Imagining what lies ahead,
Perhaps I need to concentrate,
On present things instead.
The present:
Right now you are enjoying life,
A typical mischievous boy,
You make us laugh…yes everyday,
And fill our hearts with joy.
And people often ask me,
So he’s all better right?
His heart is fixed, he seems just fine,
His future’s looking bright.
Yes, “He’s doing well”, I say,
I hope things stay this way,
I still fear for his future,
And every night I pray…
“Give me yet another day,
Keep my child strong,
I do not want to lose him Lord,
Please let his life be long.
Thank you…
Thank you Lord, for showing me,
What just one child can do,
I marvel at his courage,
And the trials he’s been through,
Thanks for your compassion
(And need I say it?…grace)
You’ve led me through each valley,
And you’ve brought me to this place.
A place where I’m not angry,
And it’s easier to see,
That I was not the person,
That you wanted me to be.
Thank you for the trials Lord,
They’ve taught me how to give,
Thank you for my child Lord,
He’s shown me how to live.
Did God make you this way?
I’ve asked myself this question,
A thousand times before,
Then it became a question that,
I just could not ignore.
God, He made you perfect,
Bestowing you with gifts to share,
God made you with his own hands,
Then numbered every hair.
He saw no imperfection,
Or heart…all rearranged,
He saw you…his well loved child,
And then he saw…lives changed.
The future…
The future is no place to live,
And neither is the past,
The present should be cherished,
As it truly goes too fast,
I don’t know what your future holds,
Or what we’ll have to face,
I know who holds us through each storm,
I know we lean on grace.
I know that life’s not always fair,
I know God has a plan,
I know He gives us strength and hope,
I know, he says…”You can”.
I write this as I wonder,
Will you ask me why?
Will you someday understand,
Just why we had to try?
Know, how very much your loved,
(Through every storm and strife)
Know, I wanted you to have,
A chance… to live your life.
~ by Stephanie Husted

One last thing...a major part of Will's OHS was the closing of a hole between two heart chambers. To listen to what a heartbeat with a VSD sounds like before repair, go to this link. Scroll to the bottom and click on Ventricular Septal Defect. Not the typical thump-thump pause thump-thump we're used to is it?

*there's good kidneys

Good news! Will does not have kidney reflux. We spent a whole day at the hospital last week for tests to get that discovery. Will had a urinary tract infection in December and since those are rare in little boys his urologist wanted to make sure it was a fluke and not kidney reflux. He was very patient with the whole day. 

First we played in this garden in a hospital courtyard:

Trying to see the fish.

Finding a secret path.

One of the waiting room toys.

Chris and I were once in this waiting room so long that we both tried playing the game in this car.

Notice the silver pole at the top for hanging I.V. bags. They think of everything at this place.

First there was an ultrasound of his abdomen. I am sorry to say that one of the downsides of Will getting older is that he has seen enough to know that being with doctors sometimes equals pain for him. We had him lie on a bed for the ultrasound and it took him awhile to realize that the ultrasound didn't hurt. When she would start to examine a different spot he would cry again and then realize that it still didn't hurt.

The next test was not nearly as easy. His bladder was filled with dye so a video Xray could be taken of how his kidneys processed the dye. It was really uncomfortable for him but he was really good despite the circumstances. And luckily the staff was all really nice. I have discovered that appointments with offices that haven't seen Will before can be really long. Before they do anything they first have to wade through his plentiful medical records to get his history. Just pulling up his records can take awhile because there is so much information in it their computer suddenly "runs slow". And sometimes they end up calling his other doctors to ask questions. So we had some nice conversation with the Xray technicians and the observing student while the Radiologist and the Fellow (because of course he gets to be a teaching case almost every time) read over his chart.

Since December he has been on a prophylactic dose of antibiotics every day to prevent more infections. I have really not enjoyed adding that to our routine. But we are actually lucky that Will has not had very many long term medicines. Since having a constant antibiotic in your system is incredibly unnatural, we balance it by putting packets of probiotic powder in his nutrition. That seems to help and I actually like giving that to him.

His next urology surgery has been scheduled for mid-May. Wish us luck!

*there's more food

This is how Will used to pass some of the time during "meals".

  Then there was some of this.

 Next came this.

Literally so happy about this he is singing to the heavens.

Look at what he can do now!

I have trouble knowing what the next step should be with food. I think this is because Will is our first child and I don't have the experience. I have spent ages walking around the grocery store trying to find something that is close to what he already likes but different enough that it introduces him to something new. 

Good example of this: 

graham cracker > chocolate graham cracker > cinnamon graham cracker > Goldfish graham cracker > Teddy Grahams > graham crackers with larger and larger amounts of any kind of condiment on them 

Once he does that he has gone from liking just one food to more than 5 foods.

Bad example (at least at our house): vanilla wafer > Vanilla Oreo Cakesters

I thought that would be good bridge between the vanilla wafer and whipped cream. Will disagreed. And honestly I was a little offended that he crumbled it up with a look of disgust on his face. Anything made by Oreo should be revered.

That picture above is from the day I learned he doesn't want everything cut in small pieces anymore. He asked for my banana and used one end as the handle while he chewed on the other. I didn't realize that the difference in a sliced banana and a whole one is how it feels when we touch them. Once it has been sliced it becomes sticky and he is still not crazy about sticky or wet or really soft things. What does work is adding one of those to food he already likes. I put vegetable flavored cream cheese on Veggie Sticks

and sunflower seed butter on carrots...which went so well he began to rub his hand in the sunflower seed butter and then cram his entire hand into his mouth (see "singing to the heavens" picture above). Adding new tastes and textures to foods he already considers "safe" is called Food Chaining. 

The little mountain of whipped cream you see in the last picture is a standard addition to meals with sweet things. I encourage him to dip his other food in it and usually by the end of the meal we're smearing it everywhere. It is clear that he still doesn't really like it. He will get a handful and squeeze it through his fingers though and he likes when I say "Give me five" when I've covered my palm with it. Then we get to laugh when it splatters on his face. :) 

I have thought about keeping a list all of the foods he likes, but now it would be hard to keep up. He is getting closer to eating every day. Drinking is another story but that will happen in time.

*there's our first weekend apart

Chris and I went to Knoxville recently to see friends, eat good food, run a 5k, and visit some of our favorite places. Spring is perfect in Knoxville. 

On our way to the expo to pick up our race info at World's Fair Park.

The Sunsphere

Market Square during the Dogwood Arts Festival

shops and restaurants at Market Square

more of Market Square

Will had a fun time with his grandparents, the family dogs, and our cousin Elliott while we were gone.

Will's new teeth total is 4. He tends to get one tooth that comes in really slowly. Then it is joined by the tooth next to it which catches up fast and the two finish poking through together. Here are the bottom two:

Click on the picture to get a better look.

Getting a shot of the top two is going to take awhile. Playing with the camera is just too much fun to him right now. He has been learning to follow some directions from us so eventually we will be able to say "Smile!" and we'll finally get a picture of all of his teeth.