Hey Wonderful Followers & Readers!
Well my pre-op visit with my NP went great! As with last time it was a long exhausting day. That had us going to appointments in almost every department of the hospital. I felt like I was the center of an medical circus. lol. 🙂 Thankfully my boyfriend was there to help keep me calm through all the testing I did that day. The only thing left is my appendix, renal system & abdominal cavity ultrasound scans, which can be done here in my hometown. This means I don’t have to go out of town headed towards my hospital til either the morning of surgery (very early) or my family has the option to room us at the hospital’s Ronald McDonald House a few nights before surgery. Whatever the case, after those scans, all tests will be in and filed just in time for surgery day. Oh, which reminds me…it isn’t the 4th y’all. The printout I have named the wrong date of my surgery. The surgery is scheduled for Wednesday, Nov. 2, 2016. Not for Friday, Nov. 4, 2016.
As me now, well meds & body preparation has begun. I cannot take any of my anti-inflammatory meds or my vitamin D compound pill til post-op. Because, all of these have blood thinners in them. Also the Mitrofanoff Procedure requires that my family aids me with what they call a “bowel prep”. I promise I won’t go into too much details. But they want a “bowel prep” to sterilize your lower intestine. If a patient doesn’t have an appendix or for some other reason the appendix cannot be used as the catheter canal then a surgeon uses the patient’s lower intestine, (the bowel). So I have to do mine 5 days before surgery. And while minor, compared to the discomfort of my recovery, this part is guaranteed to be no fun… 😦 But I know I will get through it. And the thing that pushes me forward with this venture is the knowledge that it’ll all be worth it when all’s said and done. 🙂
Now, you may be wondering why is that I have been such an open book when posting about my upcoming surgery…Well in a nutshell here’s why. Up until attending my local junior college in fall 2012, I had always had an instruction aid to assist me with my needs, so I always had someone there to go to when I needed help with bathrooming no problem. But that accommodation dropped off as soon as I graduated high school. And so my sister & her (now) husband, whole-heartedly sacrificed a lot during that time to try and make sure I had all my care needs met, while also making sure I could be successful in school. But meet my needs and helping me to succeed began to derail their own educational path. So I eventually worked it out where I dropped everything except my 1 unit of PE. So I’d use the restroom before leaving home. And be back home before I needed to pee again. This was less than ideal as well. Because wasn’t making any progress towards my educational goals. I certainly wasn’t making any progress towards my huge career dreams.
Therefore with lots of prayer, family discussions, & family support, the decision was made that I’d take medical leave from school until we were able to find a solution that was safe for me and I could be toileting independently no matter where I was. So I hit my knees praying for an answer. Pleading with Him to have me be lead right to it.
So, it’s almost a whole month since I posted. I know. But trust me the blog is still very current, alive & doing very well.:) Thank you to my newest reader(s) all the way in France! And welcome to the Conquering CP family of readers worldwide! I am thrilled you joined our group of faithful readers. To all my readers, 2 things, first thank you for all your page views! 🙂 From the bottom of my heart THANK YOU ALL! From near and & far, you all keep me wanting to continue posting and telling my stories and getting my messages of hope & encouragement out there. So thank you, it means a lot.
Second, everybody may notice that on the page there’s a new tab at the top, where the “Home” and “My Story” tabs are. The new tab reads: “What is the Mitrofanoff Procedure?” In that writing, I tell what the procedure I will soon undergo is. I do so in about 4 brief paragraphs. Then, I posted the link to a informative article on the procedure. This is just 1 article I used when researching the MP beginning 7/8 years ago. My hope in posting this new page to the blog was to give renewed hope to families similar to mine, where their loved one is desperate to be independent when needing restroom help. But the family has tried every other possible option to mitigate this challenge. Now, some things to keep in mind, we turned to the “MP” after trying everything else. My family even discovered years ago that I would not be able cath normally. Also, we didn’t reach this option easily or taking it lightly. Because I CAN use the restroom normally. I did not use a cath as a child at all. It actually wasn’t until my ability level changed years ago, that my family even began to consider the use of a catheter for me.
Anyway, as you can imagine, because I have not posted in a month there are quite a few things to catch y’all up on. First, directly after my last post, I celebrated my boyfriend’s birthday with him at a local pumpkin farm. We had a blast! And considering he’d never been, that made it extra special for me.:)
So directly after that September was over & October started. Life is going forward as of now. But, before long life as I know it now, will change forever…and more than one way. All I’m excited for. By the same token though, there is a fear of the unknown and likewise the unfamiliar. On October 19th, my new life of gaining an independent & self-sufficient life begins. It’ll be a long day of tests, scans and needle pokes…etc. Because October 19th is Clinic Pre-Op day for my Mitrofanoff surgery.. They have to do it 2 weeks before the “MP” because they send you home on a course of antibiotics that be administered before the surgery to make your bladder & urine sterile. This is most critical must do at home before surgery! Without those on board the “MP” cannot be performed. And November 4, 2016 I have to wake up very early. To get to the hospital for my 10 hr.surgery. 🙂 I couldn’t more excited for that day. Because it’s to me living my life independently.
The only thing I can ask of you all is that you pray for this surgery to go off without a hitch. Pray please that I no longer allow my nerves to get the best of me. Pray please for my parents’ nerves both for now and on surgery day itself. Pray my siblings, that their minds are at ease the day of surgery, if you would.
And lastly, Please keep me in your thoughts and prayers daily, as this leg of my journey takes flight.
Thank you all and God Bless! Before I go, I just wanna say, in the coming weeks I will face some difficult times. So, if don’t update…just remember. I will as soon as I have free moment & able to I will tell you all about it. Just hang in there with me.
I love you all. ❤ Goodnight.
So I haven’t blogged in almost 3 months, because simply put I haven’t had the time. I have been far too busy. Between doctor visits, going to summer get-togethers, redoing my room…geez! this list could go on for the whole post. Lol. The point is, this is my first moment I’d had to update the blog, and to do so without a clouded head of unnecessary worries or a “to-do” list that is 10,000 miles long. And as always, I am feeling terrible that it’s been that long…honest and truly. Thank you to everyone who has hung in tight with me. I love you all.
So here’s a little snippet of how my summer’s gone thus far…
As it always does the summer began with birthdays. My youngest brother’s is first, then mine and Savannah, and Jake’s falls within the first week of June. And my “Heartiversary” is June 26 each year.
So I celebrated with a Facebook post. This is something I try to do every year since Facebook first was a thing. Why? Well, because so little is known about the heart defect I had. In fact, it’s not usually classified as a CHD. Except in cases like mine. Cases where Double Aortic Arch or Double Arch, (DAA) is life threatening.
Anyway, June ended with the start of my latest stretch of miles on this journey. I ended June with a long-awaited visit to the Urologist. I was wanting to find a solution to needing help in the restroom. One that would allow for me my full independence that I once had when I was much younger. So upon researching for literally 1000’s of hours and many years… we were finally there at that very first “is this a possibility?” visit. That was during the last weeks of June. Now, we’re in the first weeks of July, in fact, just pasted the 4th. Happy 4th of July Everybody!
Anywho, long story very short & 3 consultations down, I’ll soon undergo a Mitrofanoff Procedure within the first week of September. But in preparing for my surgery, I’ll try to keep everyone/everything going. just hang on for this part of the ride, it’s bound to be interesting…at the very least. So, come along with me…won’t you? I’ll update more as I can. I love you all.
~Keep The Faith Y’all!~
So, this is updates part 2. And for this one I’m gonna completely rewind the entire year, the best I can. Because I know mt posts have been few and far between.
So, December and January were crazy around here. during that time we were watching a a friend’s baby a lot but because of that we even better holiday I think. During that time Jake was in is not a place for our local theatre. But I wouldn’t be expected of anything more nuts and busy. Through that time we also got to spend a lot of time with my older brother CJ, his wife Rachel and their daughter Ava. Who at that time was around 7 months old. Now she is about 15 months and such a joy to be around. 🙂
On the front of my sisters, they are definitely setting the stage I think for what I really wish a relationship would look like for me. They are always supportive of their boyfriends, Robert and Brian. And they never let obstacles or the fact that they are bored with their current classes in school, or work stop them from achieving their dreams. Around January of 2014, Paradise started an EMT course. And by March, she had completed her course and was moving towards classes in nursing assistance. She has since started looking for classes needed. And is planning on attending classes in the Fall. Savannah on the other hand, was working towards graduation in early January 2014. Her graduation would soon take place in May of 2015. While in the midst of all of the normal graduation chaos. She had nearly finished her General Ed credits, with a degree in social and behavioral sciences, by January 2014. She has since graduated with a associate’s degree in social and behavioral sciences. with a associates degree in social and behavioral sciences. She does however have plans to finish some kind of classes in the upcoming fall… But at this moment I cannot remember what those classes are for.
While my sisters and brothers siblings are staying busy with classes and work, I still aspire to be able to make my dreams come true however that happens for me. Unfortunately though I have not been able to be back on campus for a while because of medical needs. So as of yet we are looking for other options. So that I can be on to the classes that will help make my dreams come true. So everyone please please keep me in your prayers that however I finish my classes it is able to happen for me the way it is supposed to happen. Thank you to all.
Ok so, on to upcoming and exciting stuff. In the upcoming months there is 9 birthdays August- December.:-) school starts for all those of us who are in school. And another holiday season in the middle of it all. It should be fun!
Happy belated Thanksgiving everyone. I know I haven’t posted much lately, but you wouldn’t believe how crazy busy things have been around here. especially with the start of the holiday season and starts to plan our Christmas vacations. And most of all, when we were going to carry out our most favorite ”holiday giving project”. But I definitely wanted to stop and say a big happy Thanksgiving to all of you out there who read this blog. I am so grateful for all of you. You just have no idea. now, my next goal is to have more than 20 followers of the blog by Saint Patrick’s Day 2013! 🙂 So be sure to hit that ‘follow this site’ button! 🙂
being confident of this, that he who began a good work in you will carry it on to completion<sup class="crossreference" value="(A)”> until the day of Christ Jesus.~Philippians 1:6
My family has been so abundantly blessed over the last couple of weeks. We have walked a road struggle each in our own ways and together as a family unit. These struggles have forced each of us to examine our level of faith & trust in Christ. And also to truly lean and act on it. We have also had to lean quite heavily on one another in this as well. But, ultimately, we did give our family’s hard times over to His very gracious hands. And He did what only He can do… dealt with that piece of our family’s puzzle! 🙂 We are so blessed, May God have all the praise and glory for the blessings He and He alone has bestowed upon my family & I.
Sometimes God tests us to see how truly faithful we will be. And at the time, these tests can seem unbearable. But, I know this from my own experiences, if you stay faithful and spiritually strong throughout you will find great reward & be blessed in the end. It may not always be the answer you exspect. But rest assured that it will be the one that is just right for you. Always keep this in mind too, teachers are always quiet during tests.
Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.~Colossians 3:12
Hey Guys!! 🙂
I feel like it’s been ages…
Since own laptop went down it’s been really hard to blog. I have the app on my cell phone, but it’s a really hard app to use in the fact that it’s complicated. So it’s just easier to borrow a laptop. So, that in a nutshell is my issues with technoligy right now. But when I can I certainly will keep y’all updated often.
Anyways, on with the update. My siblings all started school back in August. But as for me, my family and I have decided to start me in January. At the start of 2nd semester. I will be a sophomore in college come January. 🙂 We chose to do this this on account of some pressing medical issues I have, and overlapping therapy and doctors’ visits…oh what fun… Lastly, I know it’s a couple days late, but Tuesday was WORLD CEREBRAL PALSY DAY 2012 🙂
Hey all! Sorry I haven’t been on for a few days. I’ve had a rough couple days with my pain level proving to be a challenge, with today being no exception but I’m getting through it. So there’s not much to write on today as I’m trying to get through my rough patch. But I wanna reassure everyone that there’ll be more posted as soon as I’m feeling better. 🙂