Gastric Emptying Test

Monday morning, we had Cooper's solid gastric emptying test.

They told us he could eat one of three options for the test: eggs, oatmeal, Rice Krispy treats.

When the scheduler called, and gave me those options, I told her he can't have any of those. 

So they were going to contact the radiologist and find out if we had different options, and I was going to contact the allergist to find out if we could let him have one just this once.

When he got back to us, they decided he could have the Rice Krispy.

Then a week later we got a call at 11AM on the friday before the test, and they told us how much he had to eat, about a chicken nugget and a half's worth, and I said he won't eat that much of anything regularly, plus we didn't know if he would even eat the Rice Krispy since he has never eaten them before.

What else were our options.

What can we do if he doesn't eat that much?

She gave a few more options that he could have, including sunflower butter, and actual chicken nuggets.

I called our allergist, but he doesn't work on Fridays.

Normally, you call and leave a message and his office is TERRIBLE at getting back to you. 

I constantly have to call back after the 48 hour window, and ask to speak to someone directly.

I'm telling you, I have no idea how working parents of kids who have multiple doctors do it.

If I worked, I would be on the phone my entire shift some days.

I called and went through the front office and said I needed to be put in direct contact with someone who can help me because I know our allergist doesn't work fridays, but we were just informed of new things, at 11 AM, that he could have for his emptying test, which is at 9 am the following Monday, so I needed an answer from someone in the practice.

I wanted to make sure those weren't big things that could cause a reaction.

I wasn't comfortable making a choice on my own.

Especially about the sunflower butter (I literally blended sunflowers in the food processor to make a butter.)

They said they were going to get back to me after I talked to them, which of course they didn't, and we just decided to hope that Cooper would eat enough of the Rice Krispy.

I thought it would be a good decision to give Cooper the Rice Krispy the day before, and let him scope it out on his own.

We all had one and even our neighbor joined in.

We told him it was candy and we let him take the treat, wrapper and all, and do his own thing.

 He took his time, but eventually ate a third of it!

So the next day, we get to the scope early because we were trying to beat rush hour, and luckily they took us back early.

They told us he needed to eat half the treat in 7 minutes.

I laughed.

I told them he has never eaten that much.

Ever.

She put the radioactive particle on the top left corner and told me to try to get him to eat as much as possible and she would be back in 7 minutes.

One thing about Cooper is when you force him to eat, he isn't going to. 

I was pushing him to eat, and he was getting frustrated and said, "no" and started to walk away in the room.

I found some toys and we bribed for bites.

He ate about a cm off of the top of the treat and refused more, then his time was up.

We were told when we scheduled the test that it was a 2 hour test, but I didn't know that it was 2 hours strapped to a machine.

Poor Cooper.

He held my finger the whole time, as well as the edge of the machine over him. <3

We put Cars on and for the most part, he just laid there.

Then he said he needed to go potty.

We had regular underwear on because he is trained during the day and we didn't realize this was what we were going to be doing.

So we asked for a diaper, and had to unstrap just his legs, and try to change him.

He did well the rest of the time.

And he was able to pick out a new beanie baby when he left.

He chose a rhino.

<3

Results from his test. 

We will know the results and if he ate enough to get conclusive answers soon!

The middle screen's little light is the radioactive particle

He passed out in the car  with the sucker half in his mouth.

 I took this when we were stopped, then took the sucker from him because, clearly this isn't safe :)

Woke up all smiles :)

Feeding Therapy Friday's

We have loved working with Cooper's feeding therapist!

She is great!

We started seeing her in March of this year, and as soon as we introduced completely new foods to Cooper in her presence (Chicken and avocado) Cooper started to slow his progress.

He didn't want to try the foods.

So we used the Steps Model to make sure he is comfortable with the foods.

Check it out here!

Essentially you work your way up from tolerating being in the same room as the item, to interacting, to smelling, touching, tasting, and finally eating.

There are categories and steps within each of the major stairs as well.

For example

We can get Cooper to lick the chicken, or bite the chicken,  all within the taste portion.

Or his favorite is "rocketing" his food, where he has to bite into the food, then spit the piece out into his "All done bowl".

This gives him the power and control that he lacks in the basic feeding times due to him not having many choices of what to eat.

All of these are encouraged to get him to one day, finally eat a bite and swallow it.

That day has been 5 months in the making but,

IT HAPPENED!

COOPER FINALLY ATE AND CHEWED MULTIPLE PIECES OF CHICKEN!

Ironically it was the day after the scope, when he technically doesn't have to eat it daily anymore, but a win is a win!

There is a lot of bribing when it comes to working with Cooper at meal times.

We use bubbles mostly because they are instant and not lasting so you don't have to take the toy he just earned from eating one thing away to have him do it again.

This lesson we moved on to bigger and more interesting toys and he was hooked!

Our feeding therapist brought out an original Fisher price Super Spiral Speedway and Cooper was obsessed.

If anyone ever finds one at a kids resale shop, or a garage sale, please pick it up and message, call, text, email, snapchat ,  or whatever contact info you have of mine, use it to get in touch with me, because I am on the lookout for one!

The only ones I can find new are branded ones like, Batman, Cars, or Toy Story, and the cheapest I have found is $101.00!

UNREAL!

It's two spirals and about 15 inches tall. 

$101.00

Mind-blowing.

Used online for the original is still 35 bucks which is a little much.

Anyways,

Cooper loved this toy and ate SO MUCH CHICKEN!

At this point his feeding therapist says it is behavioral when he doesn't eat it because he doesn't have any signs of textural issues and he doesn't gag or act like he doesn't like it.

It is purely control.

So we will still try it, but I won't push it as often now that he doesn't technically need it.

Cooper is hit or miss in feeding therapy.

The week before this INCREDIBLE week, he refused every single thing we gave him, even his preferred foods, and he literally ate half a baby carrot.

I'm not even talking about the bigger ones that come in the veggie platters.

I'm talking about the petite ones you buy seperately.

So we were pretty discouraged leaving that session.

But boy, did he make both myself and his therapist happy this week!!

Friday was a good day and this friday's session he ate more as well.

He refuses to eat it when I offer it at home, so there was a week between of him not eating it, but he did it again, so that is progress.

This Friday's session he wasn't super interested in the cars, but we still were able to have him eat some by making small pieces jump around in the bowl and he had to catch them and eat them!

Which he loved!

Oh 2 year olds with feeding issues, how you make us jump through hoops!

*Videos at the end!*

Playing with the toy

This is what made our stubborn little guy try chicken!!!!

$101.00

Still speechless.

Look at how tall it is compared to a 2 year old in a highchair.

Ridiculous.

Scope 3

Last Thursday, Cooper finally had his 3rd scope.

We had to be downtown by 7AM for check in 2 hours earlier than his appointment at 9AM

(Which had been rescheduled the day before from 10 with a check in at 8)

Considering where we live,  and there being only one main road out to the interstate (which is a 16 mile stretch), we had to leave pretty early to make sure we missed rush hour.

With everything else in Cooper's life,

the one thing we can count on him always doing well for us is sleep.

He sleeps a good 12-13 hours a night, plus he naps for around 2 hours a day.

So he did not like having to leave at 5 AM.

We wound up getting there an hour early for our check in, but Cooper did pretty well with that.

As soon as we were called back, Cooper had the Royal treatment because Anma (Grandma) had been pulling him around the waiting room in a wagon, and the nurse took over.

He loved it!

Then after he rushed out of the wagon to get everything he needed, he was able to choose a beanie baby to play with and snuggle while he had the procedure, and then he could keep after.

*The amount of hospital beanie babies, knitted blankets and sewn quilts this kid has at this point is ridiculous* 

He chose a black puppy.

Side note.

Cooper came down with a cold the day before the procedure.

I called as soon as I saw him showing symptoms and was put in contact with his doctor's nurse fairly quickly.

They told me as long as he didn't spike a fever, and he wasn't coughing anything up, we could proceed. 

I asked for a number to call in case it changed when he woke up in the morning, and was given that info.

Then GI Scheduler (who didn't know what she was doing planning the scope- previous post) called  and said she heard Cooper had a fever and wasn't coming in and wanted to reschedule.

Wrong. 

And wrong.

UGG.

So he was doing ok the morning of the scope.

He had the nose of a faucet, and his eyes looked so sick (partially from lack of sleep the night prior with a cold, refusing his nap the day before, and being woken up 4 hours early from bed).

The nurse who came in to check his bands to make sure everything was correct showed immediate concern.

We explained what the Doctor's nurse had said, and she said ok but did you talk to the anesthesiologist?

Clearly. 

Because we aren't given the name of the anesthesiologist until they walk in minutes before the procedure to meet you and ask you if you have any questions.

We told her we did not because we didn't have any way of knowing who it was before this exact moment.

She rushed to get him to make sure that they were ok with doing the procedure.

* When under anesthesia, your lungs don't work very hard, so if there is liquid or congestion in the lungs, it can cause permanent damage when they wake up*

Great.

He came in and wasn't worried.

WOOHOO! WE CAN FINALY GET THIS SCOPE DONE!

After we met with the anesthesiologist, Cooper's GI doctor came in.

We love him. 

He is friendly, actually listens to what you have to say, and is genuinely concerned for your child.

After this, they sent in the Hospital Life man.

He comes in to make things less scary for the little ones.

He brought the mask that the anesthesiologist uses to put them under.

and Bubbles.

*Instant best friends*

Cooper loved it after the bubbles were involved.

They caught a bunch of bubbles with the mask to make it less scary, then had Cooper try to put it to his face, which he did in a second because he wasn't scared anymore.

We played with that for a few minutes.

Then it was scope time.

I hate watching Cooper be put under, but I have done it every single time he has been (that they allowed)

It keeps him somewhat calm.

He is terrified going in there and seeing all these people in masks looking down at him, so I hold his hand and get right next to his face so I am the last thing he sees.

He has to take about 10 big breaths of it and then he relaxes and is out, and it's my cue to leave.

And wait.

It takes about 30 minutes from start to finish for the procedure.

They came out right at 30 minutes to call me back to see him.

There are two types of kids waking up from anesthesia.

The first is super relaxed and still somewhat out of it, giggly and fun.

The second is angry, confused, and constantly crying until it completely wears off.

Who wants to guess which one Little Man is?

If you guessed type 2, you would be correct.

We hear him before we see him.

And the poor nurse who is holding him as he is fighting her and crying in her face.

I grab him and have him all bundled up and eventually he calms down.

Then passes out on me.

We let him sleep a little while before we have them take out the IV and send us on our way.

It was a rough day.

*Results are posted after the pictures, so keep scrolling all the way down!*

An extremely rare occasion when I am dressed and driving before the sun is up.

Royalty

Royalty

Catching Bubbles with his mask

So sleepy

Scope pictures

passed out

SCOPE RESULTS

Guys!!

GUYS, GUYS, GUYS!

COOPER'S SCOPE CAME BACK WITH ZERO EOSINOPHILS!!

That means 

Apples,

Bananas,

Carrots,

White potato,

Whelch's Fruit Snacks

and now

Coconut

Chicken

and Avocado are safe foods!!

HE NOW HAS 8 SAFE FOODS!!!!!

So we are starting our trial of grapes 

(which he loves because he used to eat them like crazy when he was younger)

then Strawberries,

hopefully Chickpeas and whole Psyllium Husks

(Which are, based on my research, staples in Vegan, gluten free, grain free, nut free, soy free baking)

Wish us luck!

xoxo

RAGE

A little preface.
Last week we were scheduled for Cooper's 3rd scope.
Scheduling things with his doctors seems to be an issue, for so many reasons.
It's ridiculous.
That is where this post begins.

SO! MUCH! RAGE!

Cooper's scope to find out if the current foods he is trialing, are safe for him, has been in the works since May.
MAY.
I'm going to clarify again, in case you didn't get it.
MAY.

We have been trying to have both Cooper's GI (for his allergen food trial scope) and his ENT (there is thought that his residual Laryngomalacia may be having an affect on him still) coordinate and do both of their scopes together because who would want to put there 2 year old under anesthesia more than once if they can help it?
So back in May when we saw both Doctors for their followups (we routinely see all doctors every three months), we discussed doing the scope together.
Both doctors agreed that that would be the best choice.
So we set out to do it.
We contacted both schedulers and they said they were going to work with both of the doctors schedules and try to get this done soon.

We haven't done as many food trials as we normally would have, but we have been DESPERATELY trying to get Cooper to eat the foods orally.
We have been going to weekly feeding therapy since April, and introduced a few new foods that he was not interested in and I couldn't really do anything with some of the ingredients (buckwheat, coconut and pork)
So we adjusted after about a month and a half and chose different foods that were high in calories that we eat on the regular to try to get Cooper interested in them: coconut, chicken, and avocado.
He has refused to eat the chicken and avocado.
We were trying to avoid giving him an out (blended diet through his tube), because we knew, if he knew he would get it any way, there wouldn't be incentive to eat it orally.
So we spent more time with this set of foods trying to push it orally.
Then when he was still refusing it orally, we decided to finally go the blended diet route after offering it to him to eat first.
However, that brought along its own set of issues.
In order to include the amount of food needed daily for the eosinophils to show up on the scope (if allergic), there was a large volume of blended food that has to be pushed with a syringe through his tube.
It also needs to be blended fairly thin, which adds more liquid, and he already has issues tolerating the volume he already was taking.
We also were having issues with getting the correct tubing, which we wound up having to begin with.
It was a MESS.
Then as we were adding more volume to Cooper's intake,
he couldn't handle it, and was throwing up.
So we were adjusting volume of total formula for the day as well as struggling to figure out how to do a blended diet on our own.
Figuring out how to do a blended diet is scary and stressful because if its not done right, too much pressure can be added to his stomach and cause issues.
Having never had to use a 60cc syringe to actually push his formula through the tube because we had always used gravity when we needed to do a smaller amount of formula,
 we didn't know how much pressure was needed, how much resistance was normal, and how thick/thin the mixture had to be.
We also figured out that the mixture hardens slightly when left in the syringe, which causes more pressure until that part is released.
We couldn't give him all 5 oz of the blended diet at once just like we don't do an entire formula feed at once.
We did it over a 30 minute period.
So we would leave the syringe filled in the beginning because we were feeding every 5 minutes, which unknowing to us, was adding more pressure as we were giving the feeds because it slightly hardened in the top of the syringe.

All these things I wish we had been taught instead of being thrown into it on our own.
It's stressful trying to figure out if you are doing everything right.

Anyways.
The time frame for the scope normally is every 3ish months, because you need to get the results back from the previous scope so you know if it is safe to add new foods based on if it comes back clean or with a high eosinophilic count, plus you need time to introduce the new foods separately 2 weeks apart, and finally each food needs to be in the system for 6 weeks.
For example:
Previous test time frame week 11-12: Scope
Start of week 1: results
week 1: New food- Grapes
week 2: Grapes
week 3:New food- Strawberries + Grapes
week 4:  Strawberries + Grapes
week 5:New food- Chickpeas + Grapes + Strawberries
week 6: Chickpeas + Grapes +Strawberries
week 7: Chickpeas + Grapes +Strawberries
week 8: Chickpeas + Grapes +Strawberries
week 9: Chickpeas + Grapes +Strawberries
week 10: Chickpeas + Grapes +Strawberries
week 11-12: Scope

So if everything had gone right and worked out, we would have had the scope done in beginning of August.
We were waiting on the schedulers to coordinate, and the main surgeon's (GI) scheduler was in charge of this.
I called every few weeks to get an update.
They finally decided it would most likely work September 24.
I was a bit irritated because we needed to make sure we had one more scope in by the end of the year, and this was pushing his regular scope back further and in that time frame we could trial 2 more foods which would help when we go to feeding therapy having a bigger variety of foods to choose from.
But we agreed.
We were told we were still waiting on ENT to confirm.
Every time I called, GI's Scheduler said she was still waiting to hear back, would call again and put pressure on his office for an answer.
The friday before the scope (which was the following Thursday), I still hadn't heard back from GI and she said she still hadn't had an answer, so I decided to call the ENT scheduler.
I was then informed that GI had not been in contact with them in over a month, and they had already said the date was not going to work because he is not in the same hospital as GI that day and has other obligations.
I was furious and I explained the situation and asked what we were supposed to do then if that date won't work?
She asked why this wasn't taken care of when they had the last recorded conversation back in beginning of August.
I told her I had no idea, that I had been contacting GI's scheduler and I had just kept being told that they were waiting on you.
She said that she could see if one of his colleagues would take the case for the scope only (which they apparently NEVER do).
We were told we might be able to make it work a week after the original date we had set but they had to get it approved and then also check with that doctors scheduler, so we would hear back on Monday.
Monday afternoon came around and I hadn't heard back so I called again and had to leave a message.
I hear back Tuesday afternoon
(mind you our original scope is scheduled for 2 days from now at this point)
She says that the other doctor's schedule isn't open so it won't work and we will have to set up another scope date separately.
I was ticked!

At this point, I hadn't heard anything back from the GI scheduler.
She calls me Wednesday, the day before the scope, to say she finally got in contact with them and it just wasn't going to work for this scope, but if we schedule the next one now, we can have it coordinated because 10 weeks is PLENTY of time to get that taken care of.
I about flipped.
CLEARLY 10 WEEKS WILL WORK IN MY FAVOR AS OPPOSED TO THE  4.5 MONTHS THAT YOU HAVE ALREADY SPENT MESSING EVERYTHING UP!
I somewhat yelled at her, as she continued to make up excuses and repeatedly tell me in the most slow paced sentences I have ever heard, for 30 minutes while I tried to wrangle Cooper while we were standing outside of the gym waiting to go in, that it just wasn't going to work, and she will work at making the next scope happen between the two of them.
This of course I repeatedly refused because it is something that our ENT wanted done months ago but agreed to wait to scope together in the next 2 months after seeing him in May so we didn't have to put him under for the same area to be scoped twice.
I told her we would have to schedule it separately because we were not waiting 7 months to have it done, when he wanted it done in 2.
She continued repeating herself until I finally told her I was on a schedule and had to go, and she said she was going to work on making it work between both Doctors for mid December.
 (not sure if she was just not listening, or not listening, or possibly not listening when I said we were not going to do that, but who knows. Even if I had asked her if she was not listening before when I said no, she probably wouldn't have been listening.)
I told her go ahead and do what you need to do, and we will contact ENT separately.

Needless to say, that gym session was one of my best sessions yet.

Catch Up

We have had such a busy week!

I'm trying to catch up on blogging about it.

I will be working on 1-2 blog posts daily, from now through the weekend to get them up and share with you all of the new things that happened with Mr. Cooper!

So keep an eye out!

xoxo

SO MANY UPDATES

Hi there!

I'm back at it!

If you previously read my blog "Frustration", you may be wanting an update on what is going on with the Coopsters.

Oh so many updates!

First
The dietician apparently has no idea what I was talking about, because after WEEKS of contact between myself, her, and the medical supply company, it was decided that the extension tubing that I was using, was what she said I needed.
SO all that turn around for literally the same product I had 7 of in my house,
Which by the way, didn't work for us for the longest time.
So we have made adjustments and just had to give Cooper more volume because of how thinned out the blended diet has to be to pass through this tube.
so, Yay? Can we classify this as a somewhat win?

Second
We have somewhat scheduled Cooper's scope.
We have it set for September 24th, but we don't have a time because we are still waiting on ENT to commit to joining the scope.
He wants to do it, but they are worried about scheduling conflicts so we will essentially find out if he is joining us the day before when they officially give us either the 8am slot (6 am check in) or push us to 10 (8 am check in).
This scope we will be using to see if Coconut, Chicken and Avocado are safe for him.
We were testing strawberry as well, but in the mix of everything going on, I forgot to add it to his tube mixture ( since he isn't eating them orally) and he needs it for 6 weeks consistently or it won't give us a definitive scope.
We talked with the allergist and he is ok with us starting strawberries and grapes as soon as we hear from GI that the scope is clean (if it is clean).
We don't see the allergist for over a month after the scope, and we wouldn't have enough time to get enough new foods in before the next scope is needed for it to be beneficially because you need to test out foods 2-4 weeks individually, then keep them going for at least 6 weeks before a scope so adding three foods would be a minimum of 10 weeks before we could schedule another one.
If we waited until after we see the allergist in the last week of October, that would only give us 6-7 weeks before we would need another scope(because of the holidays)
So that is at least good news about him allowing us to add more foods.
So FINGERS CROSSED that this scope is clean!

Third
Cooper is still FLAT OUT refusing to eat chicken and avocado orally.
Our feeding therapist is going to have us do an appointment where she and a coworker both work with Cooper to see if there is anything else they can think of to help get him to eat.
She doesn't know what else to do with him at this point.
We have been working with her since April and she is great.
Cooper on the other hand is so incredibly stubborn and scared to try these "new" foods.
So we will see what happens with that in a few weeks.
Our normal appointment time was switched for the month of September and the other therapist doesn't work the day we go now.

Fourth
Cooper is getting so big!!!
He is 27 lbs!
And he is....
wait for it...
DAY TIME POTTY TRAINED LIKE A BOSS!
He picked it up in 3 hours!
We still use diapers at nap time and night time.
He normally has a dry diaper during nap time though.
We won't attempt night time any time soon because there is absolutely ZERO chance of us being able to push his feeds  with a smaller window of time than we are already struggling with now.
Most kids aren't allowed drinks after say, 6 pm so they don't wet the bed,
Cooper doesn't even finish his last feed until 7:45-8 on a good day.
So, yeah, NO way ;)

Fifth
Coopers appetite has been really low, like extremely low.
He barely drinks half of his daily formula and MAYBE eats 1/4 of a cup of foods through out the entire day.
He was on an appetite stimulant but it wasn't making a difference so after trying it two separate times, we decided to take him off of it.
We called the allergist and asked him if there was another brand or option and he said there wasn't one, which floored me.
How could there possibly not be any other options for him??
I was looking into other options, when our number 6 topic happened.

Six
Since we added in the additional blended diet, Cooper has thrown up quite a few times from the volume
(again, we have been making adjustments to fit it in)
The other day, he ate a handful of apple slices at 9:30 am.
That was the last solid intake he had had.
He threw up in his bed at nap time at 4:30 pm.
Sorry this next part is a little gross, but,
the apples were still in the same shape and chunks (barely chewed) sitting in the rest of the formula which he threw up.
That is concerning to still have food from 7 hours prior.
of course this happened on a Saturday, so we couldn't call until Monday.
When we called, the Doctor wants us to have another study done.
They want to do a Solids Gastric Emptying test to monitor how the food is being processed.
If food is sitting in his stomach longer than it should be, that could be the reason he isn't eating or hungry, along with his other GI issues.
So this test will let us know about that.
The problem with this test is that when they called to schedule and said, " ok so he will come in and it will be a 2 hour test where we will monitor how quickly/slowly the food moves through his stomach, he will eat the Rice Crispy Treat and we will monitor it"
I had to stop her because there are about 10 things Cooper has an allergen to in Rice Crispy Treats.
She said, "Ok, can he have oatmeal?"
Nope.
"Can he have eggs?"
Nope.
Those were his three options.
three things he has tested positive to.

So she said she would have to talk to the radiologist and find out what they could use in place of these based on the foods I told her he could have.
I mentioned all of them but said avocado and chicken are basically not going to happen, he refuses to eat them.
I also said I would call the allergist and find out what we can do if they don't have any other options.
She called back and said he could use chicken.
I told her again, he won't eat it. but the allergist said if there isn't any other options we can try the rice crispy at this point, which scares me because of how many things he is allergic to in there and after not having them for over a year, his symptoms might be different and his levels to them may also be as well.
But we will be in the safest place to try it, The hospital, so at least there is that.
We have this scheduled for September 28th.

Oh Cooper, how you keep our life interesting!

Our friend Brianna snapped this when we hung out with her and her adorable son, Hudson, and a few other friends and their kids <3

The morning I tried to make him a cute breakfast, which he barely ate, and then threw up any way :(

Refused to eat a single thing on that plate. 

But he will pretend eat all day..

STOP GROWING, NOW

Change

I'm going to take a moment to switch up from my normal posts about Cooper, and slightly change directions for a second. 

I have been sitting on this post for a few months now, and I am finally confident enough to share some of my most personal feelings I have been struggling with privately, so publicly.

I would like to preface this with saying that I have been INCREDIBLY blessed to be fortunate enough to have been a stay at home mom for Cooper's entire life, and will for as long as we deem necessary.
I am grateful beyond words to have had this opportunity, and would not change any of the last 2+ years of my life that I have been able to spend entirely with my best friend and favorite tiny human on this planet.

I in no way, want to change this aspect of my life at this point in time. 

This post is hard for me to share. 

Extremely hard, for so many reasons. 

It's hard for me to admit. 

So bare with me as I try to express myself. 

And hopefully this will help me start taking the steps to get to where I would like to be. 

I've had to be strong for so many other people for so many years, and for tonight, I'm not going to be strong. 

I'm going to be me.

I'm going to share what I feel, and where I'm going from here, and what I won't be looking back on.  

So here it goes.

There is nothing in this entire universe that I love more than being Cooper's mom. 

Nothing. 
At this very moment, he is yelling "Chicken butt!" and "chicken poo!"
I mean, where else do you get this kind of pure enjoyment in life?
He truly makes my heart happy.

I never knew the kind of love and type of bond that a mother has for and with her child, even existed, prior to having Cooper. 

It has been the biggest blessing in my life. 

I have learned so much from the 2+ years so far. 

There are struggles. 

There are moments of calm. 

There are moments when you cry looking at your beautiful creation, realizing they won't stay this small forever. 

There are trials. 

There are successes and there are failures. 

There are laughs. So so so many laughs. 

My bond with Cooper goes further than a typical mother/son relationship. **

We have been through so much together.

Being as fortunate as I have been, to be home with him, I was with him through every single medical issue. 

Through all the projectile vomit episodes. 

All the Doctor and Specialist appointments. 

All the surgeries, scopes, and ER visits.

I had to be strong, no longer just for myself, but for Cooper, and for Jeff. 

I also had 100% uninterrupted time with Cooper while Jeff was deployed.

For a lack of a better comparison, I was essentially living similar to a single mother's lifestyle, although I did not have the struggle of having to work to support us, or finding daycare or sitters, because I did (and still do) have a husband who supported us financially.

I was raising him alone. 

I made decisions on my own. 

I went to doctors and pushed for help, on my own. 

I sent as many photos and videos as I could to Jeff, but I was still the one doing everything alone. 

That is still the hardest part of my life to this day. 

I have no idea how the single moms handle it when they have to be a mom but also the sole provider for their child. 
You women are incredible. 

Just incredible. 

** I know each relationship has hardships and struggle. I'm not discounting those at all. I'm just saying, adding in what we dealt with in the beginning makes me feel as though our relationship is just slightly different. 

Now comes the hard part. 

When I had the blessing of becoming Cooper's mother, something significant also happened to me. 

I lost myself. 

I jumped so whole heartedly into motherhood that I lost my identity apart from it. 

I dropped out of college with less than a years worth of credits needed left.  

I stopped working. 

Every decision I had made previously for my life, changed. 

And I got lost in the middle.

If I tried to go back to school now, I couldn't tell you exactly what I would do. I wouldn't be going back for the same career choice, because what I wanted to do wouldn't fit with the lifestyle that I have now. My degree is also no longer available without making major changes to curriculum. 

When I chose my career aspirations in high school, kids weren't a factor. 

Especially kids with extensive needs.

My dream job when I was in college would have me whisking away to Europe to see fashion shows and be a buyer for a big company, or design and create one of a kind wedding dresses. 

Realistically, if I wanted to have a family, those weren't going to be the easiest of jobs to do while having that lifestyle. 

To this day, Jeff keeps asking me what I want to do when I eventually go back to work/ school. 

I have no idea. 

I do have a dream job, but I don't know how realistic that new job is for my life, either. 

When I talk about losing myself, there are so many stages of "me" that take me further and further from the "21 year old college Jessie" who was just starting to figure out what she wanted. 

As I explain these steps, I am extremely grateful for them, as they have shaped me into the person I am today.

I know I will never be that "21 year old Jessie" again, and I don't want to be her, because my life today is incredible.

I would however like to have some time to focus on the ambitions of that version of me. 

I grew up fast. In so many ways. 

And in that, the college Jessie who I had spent 21 years creating and adapting into the person I wanted to be, jumped so far back into my body that I forgot to even look. 

Getting married and becoming a wife didn't have any real significant effect on changing the path I was pursuing. 

Being a wife does change your life, but there is still so much "you" left. 

You make decisions together on what you will be doing for work and living, since you now have to combine two separate lives into one lifestyle and life. 

But you also have so many freedoms to be who you want, and do what you want.

When I got married, I also added another title, and another step further from my singular "me". 

I became a military wife. 

Not only was I now basing decisions on having a husband and combining our separate lives, but I now have different factors affecting my marriage and myself personally.

I was forced to spend time learning new things in order to survive on my own through deployment that I had never had to do before, instead of focus on myself. 

This next step was all happening while I also was 8 months pregnant.

Which leads me to the next title and stage of my life that took me one step further from the singular "me". 

Becoming a parent. 

Becoming a parent changes you. 

You jump unknowingly into this scary world of caring for a helpless tiny human who was created by you. 

Every decision you make, affects this child. 

This incredible responsibility is thrust upon you, before you even have a chance to breathe. 

Every situation is now thought of and decided with different priorities. 

When you become a mother, now all your choices revolve around what is best for your husband, your self and your child. 

Then you add another step when your child isn't healthy. 

You then care for that child and make decisions based on who they are and what they need. 

You become familiar with things you didn't even know existed. 

You become an advocate, all while you still try to balance yourself as your own person, a wife, a military wife, a mother, and the mother of a "sick" child. 

Then one of these "steps" seems to be letting up and makes you think that, maybe, just maybe, you can take one step back closer to focusing on yourself, because your "sick" child is "healthy".

You still balance every other version of "you" that there is, and you feel like maybe you can handle it. 

Then that "sick child" emerges again in a different aspect and you are thrown back into hours of phone calls and doctors visits and insurance calls and hospital stays. 

And you quickly start seeing the option to focus on you, rapidly moving in the other direction and further from your grasp. 

This is your new reality, and somehow, you need to learn to balance. 

My balance came from again, removing that single "me" aspect from my life. There was no place for her in my new life with all the other things I had to balance, and surely I couldn't let any other "me" slip up, so the most logical action was to remove the furthest "me" from the current "me". 

Now, on a daily basis I have become this new person who is a wife, a military wife, a stay at home mom, a feeding therapist multiple times a day to a child who refuses to eat any of the new trial foods, a nurse who cares for a g tube toddler who functions solely on drinking and being tube fed formula, a scheduler who makes weekly calls to doctors ensuring things are moving at the right pace, and a chauffeur to weekly therapy sessions an hour from your house on top of other appointments and scopes.

So where is there possibly any time for me to focus on that "21 year old Jessie" that so desperately wants to finish what she started and have a purpose separate from the other "me's" that consume my life?

That is where I need to start with my changes. 

I will be changing aspects in my life that allow for me to make time for that girl. Because she is just as important as every other "me" that I have become. 

Motherhood strengthened me in a way I will never be able to convey, as did the fact that Cooper has extensive medical needs, and going through a deployment as the wife of a soldier in Afghanistan. 

You learn things about yourself and you are pushed to limits you didn't know could go that far. 

When I lost myself, I lost more than just my ambitions.

I lost my focus for my body, which I worked really hard for pre cooper. 

I lost focus on my relationship with my husband, because I was so absorbed in this new tiny human, and he was also halfway around the world. 

I lost focus on relationships with family, and relationships I had spent time creating with people I chose as friends. 

I lost focus on having a purpose, other than to care for my child. 

So on this day, I am choosing to make changes to my life to gain some of that focus back. 

I am going to make time to pursue something selfishly for myself. 
Because it is so very important to do so. 

I am going to fully commit to a workout regimen, instead of the few days I am able to get to the gym now, because along with a new mindset, I am determined to have a similar body type to what I had before. 

I am going to stop investing time in people who truly don't have my best interest in mind or even think twice about me.

The precious free time I do have, will no longer be spent worrying about anyone other than my true friends and family. 

I have always been an overly caring and empathetic person, at this point to a fault. 

I have continually given chances to multiple people who did not deserve my time or energy because they didn't care about mine. 

Not anymore. 

I am going to choose to spend my available time more thoughtfully and with people who enrich my life and encourage me in my choices.

I will no longer do things out of pure obligation. 

I am no longer willing to waste my time on insignificant issues. There are enough real issues in my life, and in the world, for me to focus any of my time on them. 

**This next change is something I am really excited about.**
 I will be starting my own crafting business in the next few months, and I am so excited to update about that as I go! 

So, watch for that! 

I will be figuring out what I want/am able to get my degree in based on the credits I have, and I will be taking individual classes to accomplish that goal.  

I want to be a role model to Cooper of a strong woman who can be the mother who takes care of her child and is involved in every thing they do, but also have my own ambitions and life. 

I am so excited to finally take control of my life again. 
I hope you all will continue with me on this journey!