*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.

*there's more treats for special kids

The following projects are not just for kids with CHDs, but also those facing a range of medical challenges:

Blankets:

Cuddles from the Heart: Providing blankets to kids in hospitals in several states with various medical diagnoses.

Stuffed Animals:

Bummer Bears: Kids get to comfort bears just like them!
Click on these examples to see them enlarged:

Mended Heart Bear

Cast Cub

Alert Bracelets:

TigTagz: alert bracelets for kids. Good for medical conditions or to keep caregiver contact information handy. Click on each photo to see them enlarged.

 

Free Professional Photography:

in the U.S.:
Inspiration Through Art (formerly The Littlest Heroes Project)
Flashes of Hope -primarily hospital photos for kids with pediatric cancer and other life threatening illnesses

in Canada:
Helping Hearts and The Tiny Light Foundation

in New Zealand:
Shine on Little Star

Worldwide:
Tiny Sparrow Foundation

*there's treats for heart kids

I wanted to make sure other heart families know about these nationwide projects of that provide treats to CHD kids and their families:

Heart Heroes : 

Super Hero capes for little CHD warriors! So cute. To order go to this page. The site says there is a waiting list so if you want to donate or buy a gift card for a cape for a little heart hero you know go here.

The CHD Awareness Quilt Project :  

Quilt squares for CHD warriors and angels. Special appliques are added for angels and kids with pacemakers or transplants. The quilts are displayed in various places around the country. To donate money, materials, or sewing talent go to this page. To request a block go here.

Saving Little Hearts:

Saving Little Hearts is based out of Knoxville, Tennessee. They send surgery care packages right to you and your child at the hospital. They also have parent matching, support groups, and an annual calendar with photos of kids with CHDs.

*This list is not exhaustive. These are specifically the ones I know of that are available to kids with any CHD in any location in the U.S.
There are many others that target specific groups:
Sisters by Heart - who get care packages to families of kids with Hypoplastic Left Heart Syndrome and
Hope for BraveHEARTS - who get goodie baskets to heart families at Medical University of South Carolina
are two such examples.

*there's good news

Will's physical therapist told me today that he is in the 90th percentile for his adjusted age for gross motor skills! What?!?! No more PT! That is such good news! I had stopped asking about percentiles because his prematurity is still skewing his development.

90th 

90th 

90th!

If you are trying to keep track, Will is about to be 17 months old, 14.5 months old adjusted. It is really hard for a 2 pounder to be in the 90th percentile of ANYTHING!

*there's a place for more syringes

Of all the places in the world to get good syringes for tube feeding, I never would have thought to look at the Squirrel Store! We get syringes every month from our home health company and sometimes the pharmacy. But the plungers with rubber tips just don't last very long. So I've learned from other moms that the syringes with O rings instead of rubber tips are more durable and can be found here.


Also, it might interest some parents to know that there is a sort of Special Needs Underground for these things too. It is where families swap medical supplies that they can no longer use and the recipient pays for shipping.

A month's supply of bags for Will's feeding pump.

This on my mind because I recently got a month's worth of Pediasure for Will and soon learned that his team of doctors wanted him to try something else to see if it would help his frequent spitting up. It looks like it's working so we now have a few cases of unneeded Pediasure. We have been the recipients of donated formula in the past so I know exactly where to take ours. But when he's done with tube feeding we will have several things left over that we've received from the home health company that will not allow us to return them. We were told from the start, "If you don't use them, you can't send them back...donate them". I may list the things what we have left over here, but if you need something now here are some places to look:

Oley Foundation - Tools for living better on home IV and tube feedings

Facebook - Medical Supply Exchange

There are similar things in online communities for specific medical conditions, for example:

www.mitoaction.org - scroll down to The Trading Post

www.trachestomy.com - go to their message boards and look for Supply Swap

I hope this helps someone! It has definitely kept me from embarrassing myself at the grocery store. I saw a man buying preemie formula one night and wanted to chase him down to offer him the leftover cans we have at our house. But I knew I could find those cans a home in a way that doesn't scare people. So send me a message of you need any Smiliac NeoSure!

This is one of our syringes full of a homemade formula that I have made for Will a few times.

*there's a sign

I have tried to teach Will sign language for "more" and "all done" for months. It wasn't working so I gave up forgot about it for awhile. Today I showed him the sign for "please" and he used it almost immediately! These pictures aren't of him actually signing "please" but he is sort of celebrating it with silly faces.

 

 

Will actually just used the "please" sign so I would pick him up and put him in my lap while I'm blogging. It's hard to type while he's pressing buttons on the keyboard!

This is a picture of Will in Daddy's Phillies hat. He no longer has a fear of hats and he is really fascinated with this one.

And these are some pictures of Will before his recent haircut. The first pictures above show his new and probably temporary shorter look. His hair was so long and curly it was literally falling in ringlets. You can't see his hair well in these shots because I was really taking a picture of him eating a pickle. But you might get the idea. I miss those curls already. I hope they grow back soon.

*there's a trickster

also known as Mr. Mischievous hanging out with two of his loves

the dishwasher and the bathtub. 

He comes running (actually crawling) when he hears the dishwasher door open.

Trying to touch the water from Daddy's shower.

 And his newest hobby

removing and replacing the muffin tins from the kitchen cabinet.

*there's art with hearts

I love the website Etsy.
I have not always loved the cartoon shape of a heart.

But I found this for sale on Etsy

Your Home Is Where Your Heart Is

and I thought it was cute. You can get one made for yourself of any state, the United States, or another country.

And then I saw this:

and I decided that the heart shape is growing on me. It doesn't look anything like an actual human heart, but a real human heart isn't all that cute. Which is probably the reason someone invented the heart shape we usually see.
Although this one is sweet in a different kind of way:

Just for fun, do an "anatomical heart" search on Etsy. It is amazing that all of those things have been made.
Including these:

Anatomical Sweet Heart Floursack Tea Towels

Who knew this stuff existed?

Back to cute Etsy finds. Here are some good ones:
This bracelet can be found at this Etsy link:

 

 This card can be found at this Etsy link:

This keychain can be found at this Etsy link:

This teether can be found at this Etsy link:

This CHD Awareness charm necklace can be found here:

This heart suture bracelet can be found here:

HeartArt4U and Lucky10 are Etsy stores
with too many heart items to list.

 For Kids

These first two are available in different colors for
boys and girls and come from the StickyGenius shop:

Zipper Heart

I don't think these two were made with 

heart defect kids in mind, but they are just cute!

Super Hero Cutie stamp

You are my hero - boy note card

I have to confess that I don't have new pictures of Will here because I can't find our camera. Tonight at dinner he mouthed a tiny kosher dill pickle for a very long time and then licked a slice of pepperoni a few times before finishing off with his usual Goldfish (Slammin' Sour Cream and Onion flavor) and cornpuff poppers (Kroger brand Extreme Butter flavor). I was really sad that I couldn't record that moment OR the moment when he walked by himself all the way across our kitchen!! I'll do better soon.

Also, if you are an artist there is a great new site that is, in my opinion, a more exclusive, skilled, and upscale version of Etsy. Check out Across the Earth Emporium by Artisans at www.ateea.com to set up a shop.

And I know I said I was going put all the heart posts up in February, but I have found a lot of things I want to share with other heart families so there will be more posts on that soon.

*there's walking!

He's walking!
Pictures or maybe video to come...