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!

Big week next week!

Cooper has his first button change next Tuesday!

Once he has his first change, depending on how comfortable I am with it, I may be able to do them from here on out, so we will see after Tuesday how I feel!

Wednesday, Cooper is finally being seen for feeding therapy!

And it turns out the woman doing the eval is a friend of the family!

YAY!! 

FINALLY we will be working with a therapist for Coopers eating issues, and not just using occupational therapy for tactile issues!

We will finally be working on the main issue, not just a secondary problem!

Thursday Is the rehearsal for one of my best friend's wedding!

I am so excited for her and can't wait to stand up with her and support her as she marries her best friend!

Friday is the wedding!

I can't wait for her to experience marriage! She is going to be a gorgeous bride!

Spring Training

Our little family loves to go out and do things, so yesterday we went to a spring training game.

Cooper had a blast in the grass seats, and he basically stole everyones hearts.

He is a little baller!

(See what I did there?)

He snuck into 2 sets of girls pictures in front of him, and they ate it up!

Also, Will Ferrell came to the game to support and raise money for some great causes!

Stand Up to Cancer and Cancer for College

To read about his day, where he played for 10 teams in one day, check out this link here! 

You can also search Twitter and Instagram using the hashtag #ferrelltakesthefield

If you want to join the cause, click the links below!

To donate to Stand Up to Cancer, click here then click, donate on the right hand side.

To donate to Cancer for College, click here!

Cooper sending snapchats

Stealing hearts on girl group at a time

Baller

Boss

Seriously kid, we have enough Hospital bands already... I promise we don't need any more.

Yesterday Cooper decided he wanted to add to our hospital band collection.

So we wound up in the Emergency Room.

When I was giving Cooper a bolus feed, nothing was going in, and blood was coming out of the tube pushing the formula back.

I called the surgeon, but since it was after hours I was transferred to the after hours line.

I gave our information and explained what the issue was, then we were told we would get a call back from the Surgeon on call, who happened to be Cooper's surgeon. 

If we didn't hear back within 15 minutes we were to call back.

She called back in 10 minutes and asked what the issue was.

We told her and she sent us to the Emergency Room.

This was the first time Daddy had to sit in the waiting room of an emergency room.

We have had plenty of practice from Cooper's first 2 months of life, but since Jeff was deployed then, he never went through any of it.

I'm so glad he was there this time.

After waiting for almost 2 hours, we were taken back into our own room.

Someone please explain to me how the rooms for actual patients admitted are very small and shared, but the ED rooms have tons of space and are individual??

Any ways.

We waited for a doctor to come in.

She checked the button to make sure it wasn't dislodged.

From feeling around and moving the button, she said that wasn't the problem.

She then wanted to flush the button with water directly into it with a syringe, then pull back and see if more blood came out and to get gastric fluid to ensure it was positioned right.

That took quite a while for them to get back in the room to do and to find the right syringe to fit the button.

But when they did, it was clear.

There wasn't any blood, and there was gastric fluid.

They don't know what exactly caused the blood.

They said it could have been an irritation in the stomach lining.

But his button was functioning properly now and there wasn't any more blood, so 5 hours of travel and an ER stay later, we were sent home.

Always keeping us on our toes, Little Man.

Formula going in, blood coming out. 

The pink is a mixture of the two as they were combining

All the bands from the first hospitalizations, ER visits, surgeries and procedures , and all the cards from the different doctors he was seeing, until Cooper was 2.5 months old.

 

Adding to the collection since then.