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.
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.
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.
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!~