*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...