HUGE DAY!!!

Some days, you praise God a little more than other days.

Today we have so much to be thankful for!

COOPER DRANK EVERY SINGLE OUNCE ORALLY AND DIDN'T NEED A SINGLE TUBE FEED!!!

AND

HE DIDN'T FIGHT US FOR HIS TUBE MEDICINE!!!

This is such a big day for our little family!

This is honestly the first time he has EVER drank or eaten his entire calorie needs for the day.

In his entire life.

Seriously.

I could cry.

I did cry.

This is the biggest milestone he has reached.

Fingers crossed that it continues like this!

Granted, he only ate 2 baby carrots orally on top of that.

But he took in his entire daily calorie intake orally without needing his G-Tube and that is a giant win!

:)

Veteran's Night Hockey

The Coyote's Hockey team had a National Guards Veterans night for Army and Air Force Guardsmen.

They could get tickets to bring family members to lower level seat for free.

We took advantage of that!

We didn't have Cooper that night because IT was the weekend of my friends wedding and I had to be back with the bride the night before the wedding.

So after the rehearsal and the dinner, Jeff and I, and a bunch of our mutual friends went to the game!

It's really nice when there are events that give back to the people in the military.

Food Truck Friday!

A few weeks ago, our family decided to check out the grand opening of a Food truck market for dinner.

We love going on little adventures,

so we were super excited to try it out.

We got there right as it started, and parking was a bit of a nightmare.

That was nothing compared to when we left. It took an hour to get out of the parking lot when we left.

We will definitely go back after the newness wares off!

I need all of these!! 

Best dang lavender lemonade!

So crowded!

Bored

Daddy and Cooper

Feeding therapy

YES!!!!

I cannot express how excited we are to finally be getting the right therapy for Coop.

9 months ago, I went into the doctor and requested a feeding eval to be seen by a feeding therapist.
They had us see a therapist and she agreed that Cooper needed feeding therapy.
This was before we found out Cooper had EOE.
They put us in contact with an Early Intervention program, and that is where things started going wrong
They had us work with and occupational therapist.
I told them multiple times our main focus needs to be feeding therapy.
They said OT would do both.
So we started working with her.
Mind you, it took MONTHS to get him qualified for their program, and three separate in home meetings....

The first few meetings, I always had food prepared for Cooper to eat.
But the therapist would always work with toys and finger paints and goop, and when I said he needs to eat, because we scheduled it around lunch time so we could do the feeding therapy too, she seemed a little irked, and that I was almost bothering her.
After the first few sessions, she sort of phased out the eating and focused solely on OT.
We prepared food a few times, but she didn't really incorporate it.
We talked to GI and asked for another feeding eval and to focus only on seeing a feeding therapist, and he agreed.
After meeting with the therapist, it was decided Cooper would be needing feeding therapy, starting out for three months for our first block.
He needs this therapy for two reasons:
His muscles in his mouth are underdeveloped due to lack of eating for pretty much his entire life. chewing small portions of food becomes exhausting for Cooper. you can see it when he is chewing. He takes a few chews, then has to stop.
The second reason, being that he needs to have different textures introduced, and he refuses to eat anything different than what he likes (most two year olds do this, but his is becoming debilitating since he can only eat such few things)
He will only eat crunchy or super soft/liquid texture.
He won't even touch anything in between.

When we mentioned that we would be seeing a feeding therapist to our OT, she became very upset.
She said she tried traditional therapies, but Cooper can't have many things so "good luck to her with that"

Jaw drop.

I understand Cooper's situation is a bit unique, and traditional things may not work on him.
So her idea was to just give up and not give him what he needs to thrive, instead of doing additional work to find ways to help him.

Traditional feeding therapy is when a therapist sits down with a child to help their eating.
They have multiple foods, flavors, textures, and temperatures.
Since Cooper can only have apples, carrots, bananas, white potato and we are trialing coconut, that is more difficult.
I understand his therapy is more difficult than others, but leaving a child without the help he needs because he is "different" or "more work" is NOT ok.
We have our meeting to end our OT sessions because he is handling tactile sensory so well.
From here on out, we expect to just be working with the feeding therapist.

First Button Change

Cooper had his first button change on March 17th.

Doctors say after the first change, it can be done by a parent at home, but I think I would rather pay the copay and drive an hour there, and an hour back.

It was bad.

Cooper has VERY minimal granulation tissue, but it is still connected to the tube and he was not happy or feeling too great when the doctor changed his tube.

When the tube is changed, you take the small syringe and put it in the side of the tube where you check the water inflation of the balloon holding it in place.

You extract the water to deflate the balloon so the tube is just a peg and can be removed from the stomach.

You then make sure to have gauze to cover the site, and slowly pull the tube out.

This then leaves a hole where the tube was, which is why it is important to keep the gauze over the site, to ensure nothing gets in it.

You then take the new, never inflated button, place it in a lubricant, and position it under the gauze by the site.

You don't want to force it in to the hole, so when they breathe in is the best time to slide it in.

Once the new button is in place, you inflate it back with water and you are done.

It took all of 30 seconds for the surgeon to do.

However, because Cooper is older and can put things together, like specific events and pain, we now have a struggle 99% of the time we go to touch his G-tube.

He remembers how it feels, and he doesn't want you touching it, which is the main reason I will not be doing the button changes for a while, 

apart from the fact that it kind of bugs me out to see a skittle-sized hole in my baby's belly.

When he is old enough to discuss and understand what is going on, we may try to do it ourselves, but until then, I don't want him associating me coming to touch his G tube as painful.

Poor little bug.

On the plus side, Cooper loves going to the doctor's office and is such a champ! 

He runs up and steps on the scale, he stands under the height measurement station and giggles, and he gives his hand when they need to take the pulse-ox.

He may have had a little too much practice to get this good at it ;)

In the waiting room

Cooper was having so much fun with the little girl sitting in front of him.

Getting measured

Pulse Ox

He kept jumping from tile to tile and saying the colors 

Also, Happy St. Patrick's Day!