Unexpected. Unplanned. Unforeseen.

Hello to all of my followers!
All I can say is 2 (ish) months is way too long to not post! But I really honestly couldn’t, not with everything when it was happening. So let me start by backtracking all the way up to about 2 days before Halloween…
By this point we were given Halloween as my hospital admission day. Even though we’d started my bowel prep at home, the decision was made to admit me to the hospital ended up being 1 whole day early, because Dr. Kurzrock wanted my ins/outs monitored. The reason, as we would learn later, was that the goal was to induce diarrhea… Worst 24 hours of my life… or so I thought. Little did I know there was even more “worst day of my life” moments to come… And so just 12 hours before surgery I achieved my goal bowel prep torture ending. “Thank God!” I thought. I had achieved the goal with the doctor wanted given my history.
So I was happily sent to bed with complete and total renewed hope that my life would be better changed forever on at 10 o’clock a.m. November 2nd 2016. Because by this point I had no reason to believe that my outcome would be any different from my good friend who and had it done five years before me. Everybody lay down as happy as could be. Nobody got any sleep that night. Besides maybe my roommate.
Urgently at 4 am I called my sister Savannah (my twin). She an our auntie made provisions for the others and our baby brother and then began the journey to be with me that morning. They walked in just before the prep team came to get me and exactly 8:30 that morning. As I was being wheeled to surgical prep the entire floor of nurses had a grin a mile wide on their faces, because by now the rare surgery had become popular topic among the nurses on the floor….

Because normally a person my age does not know about nor goes in for this kind of surgery… And they turned the corner off the floor with me as I hear from about 10 mouths “Good luck!” Mid way to pre-op we catch up with Dr Kurzrock (aka “Red-headed Crazy Man”). His very words, “Hey sweetheart. “Are you ready?” Shaking my head, i said, “Yes. But last night was absolute torture I did not sleep.”
Finally we make it to the “Children’s Surgery” pre-op ward. And whereas the average person might think that my nerves were put at ease by the decorative walls…Wrong! All I could think was, “Game on!” And “Savannah & Auntie please don’t go Anywhere!” Even though I was transported in hospital bed that I’ve been in for at least 36 hours of this point I could not find a comfortable position to save my life. It wasn’t until my sister had asked a nurse if we could watch a DVD or play a board game or something that I was finally calming down… Because the movie Savannah picked was a child favorite to both of us. She picked “Remember the Titans”. But still my nerves were unsettled. The pre-op nurse said my surgery was to begin by 11 a.m. and that we would have to hang in there for about an hour in this little curtained off cubicle. Besides the movie that is what I remember of the entire hour we had to patiently wait for me to go back into surgery. The only other words I remember Dr. K saying before taking me back, was “If there’s a problem with her appendix I will just close her up.”
By this point my mom and dad were also by my side. The doctor said his piece, I signed papers, my mom, sister, auntie & dad prayed over me & for God to work through Dr. Kurzrock. And I was wheeled to the O.R. Finally, by the grace of God my nerves were put at ease. How I know this is true is, with my last surgery which was Orthopedic in nature, I could remember exactly how long it took me to be knocked out with the sleeping gas… but this time I have no memory of even that…
I knew I was in the more than capable hands of the best person in the state to do what I was asking him to do. But ultimately I knew that I was in the comforting Everlasting Arms of my Saviour and Father in Heaven Jesus Christ. And with that knowledge, I was much more than a little comforted laying to be operated on.
After several hours of surgery, I woke up to a team of several people transferring from the operating table back to a hospital gurney. All I remember from there is asking if my catheter had been placed and requesting to be in the immediate eyesight of my sister and my aunt. Reassured by the people transferring me that yes I had “a catheter” placed, we wheeled me from the O.R. to recovery. Unaware of what I was about here I was happy to hear that a catheter been placed. Once in recovery, my aunt and my sister were there both the smiles on their faces and on either side of the bed. I immediately saw a balloon that said “God is good all the time.” Confused by the happily relieved but concerned look on my sister’s face. I eagerly (but still groggy) I asked her,”Was surgery successful?” The million questions in my head came to a screeching halt, when she answered. “No. It didn’t work.” They tried everything but the procedure was unsuccessful. He even came out to us all surgery to get permission to try & use one of your fallopian tubes as the canal because your appendix was flipped on its head, losing blood flow and was dying.” …Not to mention he was concerned because my appendix was higher in my body then it was supposed to be. She continued, “we gave them permission to try and use your fallopian tube. He tried and tried to thread a catheter through it he even tried an infant or a preemie catheter, but it just would not go through no matter what he did. Your tube was beginning to close on one side. I’m sorry Sammers no matter what he tried… and he did try… the surgery failed. But the good news is he removed your failing appendix, and the closed ended fallopian tube.”
Hearing all this I couldn’t believe my ears. Something I had researched for over 10 years and done my research on doctors in state and out of state, all the countless amount of paperwork, and reading research I did went down the tubes. With what felt like one swift kick to the heart, my life changed, but not in the way I had hoped & dreamt it would. Beside the question of, “what do we do now?” my first, and most important question was, am I infertile?” Because as young lady in my early 20’s… the one thing I’ve always wanted besides my independence is to be a mom. For as long as I can remember, I wanted to be a mother. I was always the one playing with baby dolls & insistent on getting real baby clothes to fit 20+ inch baby dolls. I would get outfits in the real baby section at Walmart complete with little socks and hair bows that matched the outfits. I even took a doll everywhere with me from family get-togethers to the hospital for every stay I had. And the wardrobe had more baby doll clothes in it then I brought with me to wear in the hospital. Because I was obsessed with playing doll dress-up on my down time in the hospital as a kid…. so in that moment silently I was worried about my dreams of becoming a mother being squashed forever…until thankfully the words, “Oh yes honey, you will still be able to have children.” Auntie said immediately when I asked about my fertility. But still, in the next breath I was heartbroken. Because I was unsure where to go from here. I always thought, that this would be my only catheterization option. I never knew of this option I always thought that catheterization for me would be a hopeless dream of someday achieving complete and total Independence in the area of using the restroom. But when the option of mitrofanoff presented itself onto the table of options, quite honestly I think my whole family breathed a sigh of relief. Because just the option meant the door was open for a less confusing less frustrating process of learning to catheterize myself. But when the surgery failed, I know my whole family was disheartened. But staying ever positive & filled with optimism, Auntie said, “Baby this is not the end of the road. When you get better we’re going to continue this journey. ” “So we’re back to square one…” I said. “No, we just need to rethink this path & make a plan. We’re gonna start by looking to God for His guidance & we’re going to pray.”

So at around 5pm they took me back to my room in the surgical intensive care unit or ‘SICU’. Honestly, I don’t remember much more than that initial from surgery day. The next few days after my failed mitrofanoff procedure, they were filled with me trying to climb uphill from what became a very complex appendectomy. Internists and interns had gone from being very interested in my case because of its rarity, to falling away.

But slowly, I pulled myself together & about one week later on Thursday I had gotten well enough to be discharged from the hospital. And aside from being told I contracted C-DIFF a common hospital-borne virus, whose bacteria is normally occurring in in the intestine as it is, I was ecstatic to be released from the hospital. In fact we were told that I was a carrier for the virus but not to worry about it. But we would stay in the city another 2 days just to be on the safe side. Two days later and I would slowly come out of the hospital aches and pains. This meant we were finally able to make the journey home after nearly two weeks away from the family. I was only home one week until everything flipped on its head. As I sit here typing, I am really struck by the struggle it’s been to retell this part of this past leg of my journey. It was certainly far from easy. I never imagined I would go through something quite so dramatic. Something that would take me on a roller coaster ride. One that would time and time again make me wonder if I would lose my life.

Everything started to go downhill days before Thanksgiving. Two days before Thanksgiving, I began to complain frequently of pain near my incision site. We knew I’d still be quite sore from the surgery that had just been done. And so nobody was really alarmed by the ongoing complaint of pain. That was until very late Thanksgiving night.

This is where the story takes a very hard time for me. This is also where I realized very early on my story takes a turn it’s similar to a scene from the movie Miracles From Heaven. Late Thanksgiving night after being laid down for bed, my stomach pain increased and I could not get comfortable to save my life. I had a fever that begin to rise and break rise and break at will. When it would rise I would sweat until the fever would break and then i would shake. As the night went on, my skin got paler & more clammy. Around 3 a.m. my stomach pain got unbearably worse. I thought over and over I would have diarrhea but I couldn’t go. That was until about 3 hours later around 6 a.m. when I could not be removed from the toilet because I could not stop going. In the midst of this I was losing consciousness and muscle tone will still lose that I was not able to even hold my head up. By 10 a.m. things were taking an even deeper turn for the worst. 10 a.m. my mom tried once again to medicate me with normal everyday pain medication. Of which I immediately threw up all over my bed. But unlike the rest of the night prior, this throw up was dark mud black in color. By 11:30 a.m. my dad and I were well on our way to or local ER. I barely remember the trip to the ER. Because the whole ride there I was going in and out of consciousness. There are very few things I remember my initial day in the ER, but the things I do remember or very big and significant moments from that night. The first thing I remember is being so dehydrated they couldn’t find a vein to stick an IV. But that would remain true throughout both up my hospital stays from the last weeks of November through January 1st. No matter how hydrated I would become they would have difficulty finding of a no matter what. The next thing I remember from that initial ER trip, is all of my test coming back positive for a very active C-DIFF infection and a very significant sepsis infection. The C-DIFF had gotten so bad, it had engulfed my entire colon, to the point where the hospital staff wanted to immediately remove my colon. To that, we very quickly exclaimed that no one had permission to remove my colon. By this point, Savannah had made her way to the hospital to be by side & be a stronger advocate while I found myself in a place and bodly state where I couldn’t be an advocate for myself. This was another one of those places in life where I did not have to say a word and she was right there to realize how badly I needed her support. After hearing everything I had been diagnosed with since minute one of being in the emergency room, Savannah immediately called her husband Robert, my brother-in-law. Because I had been asking for him all afternoon he left from work immediately and made his way to us in the hospital. after being caught up to speed himself, Robert and Savannah both decided they would say it by my side no matter what because with every person that came to run a test or give an update my situation look even more precarious by the minute. I would throw up all over my sister one more time before the doctors and nurses who were swing by my little cubicle would tell her that I was profusely throwing up blood because of the sepsis infection. That would also explain the back to back and random over and over blood test results and multiple viles. They were consistently every hour checking my blood count results. Surprisingly, despite the sepsis infection, my blood counts were within normal limits. With our denial of the colon removal surgery, they began slamming my system right then and there in the ER with antibiotics and antifungals an antivirals. The reason for this was because the ER that night was very busy and it would take 12 hours to get a bed in the Intensive Care Unit. Just before my admittance to the Intensive Care Unit Savannah and Robert would make their journey home for the night. So it was once again just my dad and myself braving the hospital together. It would come to be known that I was one of the sickest patients on the unit that night and through the majority of my ICU stay. Not only would I be one of the sickest only unit almost the entire month of the stay, my case would become one of the most challenging and complex on the unit.. During that time my needs would run the gamut. From constant heart monitoring to nasal gastric tube feeding. I would also have to endure 7 more surgeries during my hospital ICU stay. This would bring my simple 5 surgeries total in life up to a whopping 12 surgeries total in my lifetime to date. From my day of admittance to the hospital to my day of discharge was wondering if short of a month. I would go to the hospital on November 25th 2016 and released on December 24th 2016. And then again from about December 27, 2016 through January 1st 2017…I had another hospital stay. But that one was for pain associated with surgeries that you just had. This time had nowhere near the complexity of the first or the second hospital stay.

It was definitely a wild ride. And I don’t know yet why God had me go through something so dramatic, or even why He chose this time in my life to give me such a trial of life at this age. I may never know. But I do know one thing, I will find the blessings brought on by this trial and true test of my will to live, one day in tenfold. For I know He did not set me on this journey or give me this particular life for no reason at all. I know I was given this life for a purpose. And my challenges have a purpose as well. Now I’m even stronger and my faith and trust in the Lord Jesus Christ to pull me through anything. Because I know, more than once I was questioning during that time in the ICU, whether I would live or die. Since then I wake up every morning with a smile upon my face and a grateful heart. Simply because I am grateful to be alive, doing well now, and healthy. I will never again take for granted the health that I do have, for everyday is not promised.

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It’s All Uphill From Here! :) (Recapping my Pre-op Visit)

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.

I Have a New Pre-op & Surgery Date + Updates!

Hey Guys.

     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.
     . 

And it’s a blessing in disguise : )

Hey All.
September 7th-9th 2016
     I’m sure many of you are wondering how I’m doing, as today would have been 2 days post-op. Well I am home. They haven’t operated yet. The  surgeon canceled my surgery Wednesday. Dr Kurzrock pushed it to the month of November. There was a problem with one of my test results and so they had to send me home from pre-op. So now I am home. Trying to get through the depression phase of not yet having surgery. But it is a blessing in disguise guys.
     My family and I are in the midst of trying to move. So surgery now would have been a nightmare. Well surgery will  be rescheduled until after the move that means my family can be fully focused on getting is all moved now. And then when surgery does roll around again, my family can be entirely focused on my needs and what needs to happen in it state of recovery for me to be able to recover as fast as possible but also as safe as possible.
    
     Not to mention now i will have a open procedure. The only real downside to the change to an open procedure is that it means a longer  hospital stay than anyone anticipated… and consequently a longer recovery period and bed rest period… Yes… if you haven’t figured it out already I absolutely hate any mandatory bed rest… 😦
But whatever is necessary to make my surgery successful past the 80% success rate that we were given I will do it. 🙂 Hey what can I say?… if you’re desperate for independence people….you  do anything for it.
Update: September 19th 2016.
Hey All.
      So, my hope is that the team doing all they can to help  this next go-around at surgery to be successful. But me and the family are in a holding pattern between us and the doctor’s office. As far as I know they haven’t called us in for an appointment yet. But I wanted to let you know that I’m pretty much past the whole depression phase of not having the surgery last time. I’m in a better place to have it postponed we all know that and somehow I’m coping with it. And then doing as well as I can not to just be completely consumed by it all of it. I’m much happier now than I was when I typed the post above. I I can tell you that I cannot wait until this holding pattern brakes with the doctor’s office! I’m so ready to get this ball rolling again you guys have no idea. But here is what’s been going on since the post above… My  sister Paradise & brother CJ had their birthdays last week. My boyfriend & auntie have their birthdays this weekend.

Headed Out of Town Tuesday Night

Hey All.
     So as you know from the last post, things are busy with surgery being just a few days away now. Preparing is in full force. In fact the  decision has been made to head out on Tuesday night & stay in the city. We are staying close to to the hospital for the night before, because, our home is nearly  100 miles round-trip from the hospital. And I have to be checked in at the hospital by 8 a.m. PST Wednesday morning for surgery at 10 a.m. PST. For those of you who I  will be praying for our travel, my surgery, the surgeon himself, the speedy recovery, Etc. There’s the exact date and times that we know of thus far. Thank you in advance for any prayers & positive  thoughts that may be  heading our way during this process of surgery and its recovery period. Any and all are greatly appreciated.
      It was estimated that I’ll be in the hospital for about 7 days after the operation. Then we were given the estimate of 10 weeks of  bedrest once I get home from surgery. My family and I pray that I have a lot quicker recovery than the estimate time frames given to us though. And so if you want to know what to pray for most, that is probably what I would ask you pray for most of all. Additionally, I ask that you please pray for my whole family during this newest part of my CP journey. The Mitrofanoff definitely is a God sent blessing to me and my family. With that being said, the procedure comes with a great deal of an adjustment period for everybody. It is still going to be the 5th time in 23 years that my parents have handed me over into the care of a surgeon. And I don’t imagine it gets any easier each time.
     Also everybody pray that this time is easy for my married & outta state siblings. It is hard on me knowing they are all working and cant be with me Wednesday morning before surgery. But I can only imagine it hardest on them in one way or other. Especially for Savannah, my twin sister. It’s always been very hard on her to see me in pain like the pain that arises post-op of any procedure. Especially if I am medically vulnerable or even more medically needy afterwards. I remember from  last time she said that made her so upset to see me hurt and there wasn’t anything she could do. I know when she is helpless to help my hurt stop that makes her heart hurt so bad. 
   Even though they know, as do I that, I’ll sail through. This is for my independence, it isn’t life and death. I still want all my family & friends to be at peace the day of surgery. We all know I’m in the best hands possible for the surgery. But all that said, it still is surgery. And I don’t want worry on that day, from anyone me or anyone else. I know I am God’s girl & I am in his hands Wednesday morning. 🙂 That is why I am choosing to give God the glory that is due for getting me this blessed opportunity. I am choosing to thank Him for placing with the best hands possible to do this work on me. And whatever the outcome, through it all I will praise God & thank Him. As I always do, for blessing me so abundantly, and bathing me in showers of His unfailing love, captivating grace, and last but certainly not least, I will spend time during this time in my journey, thanking Him for blessing me with so many mercies as far and wide as the oceans and seas are deep. May you all be blessed in this coming week, I pray this in Jesus’ Name. Amen!
I hope you all will hang tight in this roughest part of this journey thus far. I will update if and as I can within this week if I am able. Thank you & I love you all. Will post again as soon as I am able.

1 week away from Surgery! :-)

August  28th 2016
     Ok y’all I have a lot to catch you guys up on. A lot’s been happen with me lately.For starters, surgery day is 1 week away from tomorrow. Tomorrow is another urology doctor’s visit. It’s my pre-op visit. During this visit, they will run a slew of tests. ust make doubly positive that as healthy as I can be before this surgery. I should be in the hospital for about 1 whole week (7 days). And while I’m there I will do my best to keep y’all updated & caught up on my progress as I recover. If and as I am able.
September 1st.
    
      My pre-op visit with my NP named  Paula went well. The visit with her was short and sweet the only real major thing she had to tell us is that I couldn’t have any sort of NSAID medication before surgery. And then can the marathon of running from place to place to get the test they needed done. I went from Blood In urinalysis lab to the Cardiology Clinic to have an EKG or heart test done. No worries there for anyone not even me. In fact the nurse that did the EKG for us was very surprised that new immediately that my EKG was normal. I laughed and told her “yes Grey’s Anatomy teaches you a lot.” 🙂  on the way home we stopped in Carmichael California to meet face-to-face with a friend of mine named Danielle. Danielle has already had the procedure done and has similar needs to mine as well as having CP herself. It was a joyous meeting and very informative to meet with her. She told me some of the ups and downs that could happen but that I was strong and would make it through whatever was going to happen to me and quite honestly I believe her. As we were leaving her place I remember just hugging her goodbye and crying in her lap. I was crying because of a lot of things but especially because she along with several others opened my eyes to this option to be the next chapter in my new found  independent life’s Journey.
September 2nd 2016
   
After a wonderful meeting with Danielle, I found it very important to find my way back to my church classes and so tonight my new boyfriend Alan and I went to our church group. They were playing God’s Not Dead 2 which was an awesome movie! I recommend it to anyone who hasn’t seen it yet to watch it you won’t regret it. But anyway just before I left for the night our pastor Pastor Jim asked if he could pray over me after I made the announcement that I would not be back next week nor would I probably be back the following weeks because I was having surgery. That is about the time when he stopped and asked if he could pray over me. As he did there’s one word that stuck out in my head and still sticks out even now hours and hours later.He said “Lord my you give Sam some peace in these upcoming days leading to her surgery”. Let me tell you I am so grateful that Pastor Jim said those words because I have felt nothing but the feeling of the world is pressing down upon my shoulders for weeks now. Surgery fast approaching and my family and I have decided to move here soon. I am ecstatic for the move because it just means God has a chapter in our lives that we must write with the help of His hand through all of it. So my point is as Pastor Jim said those words: ” “Lord may you give her some in these upcoming days and weeks…” that meant the world to me because he didn’t have to know all that was going on with me, but in his prayer he prayed for peace for me in all of it. In just  hearing those words I was instantly relieved of those feelings that all of the world was on my shoulder. Who knew a prayer for your own peace in your body and mind in your soul could do that much? It can and has released all anxiety and worry that remained in me. All released in one moment as soon as he said those words. I’m grateful to Pastor Jim for praying those exact words when I needed those words and that very prayer the most. Thank you Pastor Jim and all the others who prayed over me tonight… I love you all! 
September 3rd 2016
    
      Four days till surgery! Click the join this site button and follow the the Journey as I take my 1st step toward my independent life and Beyond. 🙂 Won’t you join me on this journey? This journey is Lead entirely by the hand of God, my own courage, determination and perseverance. In this journey I can do nothing without with the support and love of my family in tow.
     So won’t you join me from here on through surgery and Beyond to see the Miracles that God makes possible in my life? If so please click the join this site button to the left of the blog page. It is a big blue button with white lettering you cannot miss it.. Lol 🙂 do that impressed though you are a follower of the  Conquering CP blog! Welcome aboard the journey!
Goodnight all I love you.

Surgery countdown continues: We are down to 1 month and 2 days! 😊

Hey guys!
I haven’t updated in a while. Because as I stated when I posted in July things are insanely busy getting ready for surgery. As I said before my surgery will be first week of September. Meaning that we have 1 month and 2 days from right now till surgery day. I had my ups and downs of emotions concerning it and the realities of everything I’m going to go through, really ever since the first Urology visit back in June. I don’t know I guess my nerves have been all over the place because I’m walking into the unknown… so to speak.
     While the resident told us that I was an ideal candidate for this procedure and so too did the surgeon himself. There’s still a very long road ahead filled with its own hurdle of ups and downs. In prepping for surgery my family and I are redoing almost everything about my daily life. From redecorating my bedroom too making sure medications and normal schedules are on target. It’s been an insane roller coaster already…
     And this all BEFORE I have even had the procedure! While I’m excited because it means a new chapter in my life and new adventures to come… My nerves just won’t leave me alone. 😕 So basically this is what I’ve had going on since I last posted. Not much actually. I am having to forgo a lot of last minute summer events to prioritize my prepping everything over fun. But let’s all face it adulthood is far from fun sometimes because priorities have to come first. That is why they’re called priorities right? Lol 🙂 but here is a few fun at home things that have happened since my last post. My brother Spencer came home to visit for like a week. And that was fun knowing he wasn’t out of state for that time being. But part of it was a bummer because we didn’t get time just the two of us to do something cool and fun. I watched Savannah’s dog well she went to one of our best friends’ wedding. That was fun because Duke is always sweet and super watchful and protective over me while my  sister is on vacation even if they’re short ones. So I got to spend time with him cuddles and play time and stuff. 🙂 I hear from my brother Jake every couple of days, and last I heard I was a little bummed. Because of work and school he is unable to be home before and even for a while after I have surgery. 😦 But oh well. He will just have to see me the next time he gets home on a break when I’m truly at my best and independent in this area. 🙂 I have almost completed the design and layout I want for my room that as I mentioned in the top of this post we are currently in the process of redecorating.:-) as for any of the rest of it I just have to go with the flow and trust that God has me in His hand. Easier said than done when you’re walking into something basically blind  as to what to expect.
     But the greatest blessing in all of this is that I will not just hopefully be able to do for myself by the end of it. But more than likely be able to do for myself by the end of it. And that is something to truly celebrate. It’s almost as if surgery date is a brand new birthday for me of sorts. It just so happens that all these celebratory days that I have accumulated, out of them all 2 fall on the 7th day of the month in which they happened. For instance I was baptized on July 7th 2009. I will go through this surgery on September 7th 2016. As for now guys I really have no more update. Hang in there with me to see how this all plays out. And I will try to keep it as updated as I can. Love you all. ❤

My summer so far, it’s been crazy

Hey Guys!
     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!~