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!