Different Song, Different Verse

It is difficult sometimes to walk down the long corridor to the elevator, down the hall, and into the doctors office. It is a walk that I have become so familiar with, it almost seems like second nature. Navigating through uncharted territory and shaking hands with strangers that I try to place trust in to treat and/or diagnose my daughter. After so many specialists and doctors try their very best to exhaust all of their resources, they send us along to the next theory or specialist only to go through the same thing. Same song second verse, same as the first.

Somehow, this last walk felt a little different. I'm not sure if it was because I was walking into an office that I knew had ample resources and would exhaust resources that had never been looked at before or if I had divine peace from my Creator. Either way, this appointment was so different on so many levels. Vivien's appointment was all that we had hoped it would be and more. Dr. Kendall with Virtual Medical Practice walked out to call us to the back herself. No long white coat, no nurse that would place us in a holding cell, checking stats and vitals for the doctors quick 10 minute medical gesture; she wore a cute dress and a smiling face as well as a reassuring presence. I knew right away we would like her when she handed Vivien a plush toy that she had created herself. The Hugger-Mug has a voice recorder that says, "hello Vivien, how are you today?" As Vivien sat and played with the hair on the toy, we discussed Vivien's history, symptoms, and medications in length and in detail; something that has rarely been done before by other doctors.

This time, I never felt I had to convince the doctor that although Vivien looks so well, she has gone through some of the issues that she has, Dr. Kendall understood me and listened to what Michael and myself shared with her. She pointed out a few things herself about what she saw in Vivien and then explained things to us in a clear manner. Vivien will need to have a few very simple, noninvasive tests performed before we can formally diagnose her with anything. She will be part of a clinical trial to test her enzyme levels. We are so excited for this because it is free of charge and is a procedure on the forefront of Mitochondrial Disease testing. We will also need some blood samples and a urinalysis. Vivien has a lot of the clinical findings of a child with Mitochondrial Disease, however, Dr. Kendall doesn't want to make this diagnosis without precise testing. So, we will have to wait anywhere from 1-3 months for the results. After the results are in, we may start Vivien on what is called a MitoCocktail. We will wait once again for lab results. Honestly, waiting is not my best quality. 

So, it rings true, someone out there has seen what I have for more than a year now. Someone out there feels we made the right decision in chasing this unicorn. Someone agrees that our daughter deserves the very best treatment for her symptoms and the things that plague her, so that she can live a seemingly healthy life. For this, I am incredibly grateful. Michael and I discussed on the 6 hour drive back home, why God has not answered our prayers as quickly as we had hoped for in regards to a diagnosis for Vivien. We strongly believe, God wanted to show us, that Vivien would be okay because she is His child, but most importantly He wanted to show us that we would be okay because we too are His children. Who knows, a diagnosis on this level may have devastated us beyond our limits in months past. However, God has since equipped us with His divine and infinite wisdom to consider the task at hand a blessing and not a curse. Time is often our best friend and our worst enemy all-in-one. I am learning...slowly, that all of this waiting will reveal things I never knew existed inside of me and my family. As impatient as I have been in this process, God has still granted me the desires of my heart and loves me despite my stubborn and relentless ways.  

With Great Anticipation...

In four short days we will take a journey down to Georgia to visit with a doctor that has been meticulously reviewing Vivien's extensive medical file. I wait with great anticipation about the coming days and the appointment that will be here before I know it. To say that I have been preparing for this appointment for over a month now would be slightly misleading. You see, I have been preparing for this appointment for over a year now. I have prayed, pleaded, researched, and fought for such an appointment as this for our sweet daughter. I am convinced that this appointment will lead us to answers about Vivien's prior medical history as well as symptoms that still plague her today. We will consult with a BioGeneticist that is a sub-specialist in Mitochondrial Disease. Upon doing my own research over six months ago, I ran across this disease in some online reading and was convinced this is what Vivien has. I have been called all but crazy on this long journey. Some doctors tell me there is nothing to worry about, she will outgrow her bizarre symptoms in another year (they told us that last year too) and we will all be amazed at how far she has come, others scratch their heads and will not rule out such a diagnosis as Mito.

Mmm, how far she has come, yes, to that there is no denying, God has had a hand in it all. And to Him shall be all the Glory and Honor. Sometimes, more often than I would like to admit, I have to remind myself that He is the explanation as to why Vivien has mysteriously gotten better and conquered milestones that many thought she never would. Yet, she still has a lot of unexplained symptoms that affect her daily; she is 95% g-tube dependent (should be 99%, but I confess I cheat a tad bit with her, letting her eat things doctors do not recommend), she still aspirates on a daily basis, and has difficulty walking around the house (sometimes falling 10 or more times in a 30 to 45 minute time frame), sick every month with pneumonia or strep-throat. Many of these things are undeniable. To look at Vivien, one would never speculate that she has had and continues to have the daily struggles she does.

I knew from the moment Vivien was sent to a local Children's Hospital my life, our life as a family would change forever. I can not explain the feeling that you have when you just know something. I just knew and I have always just known. One of the speech therapists that worked so closely with Vivien when she was in the hospital said to me the day we were to be discharged, "I wonder if they are missing the forest for the trees." I have relived that moment in that hospital room often; her holding my precious baby girl, trying to get her to drink from a bottle while Vivien screamed as if she wanted nothing to do with feeding and simply wanted to rest. I have always felt the doctors were overlooking all of the pieces to the puzzle. I pray that this one doctor will be the one to place each convex and concave puzzle piece together ever so intricately, so we will be able to view the picture as a whole, the way I have been seeing it from the beginning.

I feel strongly that this appointment will conclude one chapter of our journey and a new one will start. The unicorns that I have been searching for, may exist after all. I am beyond anxious, I am not sure what to expect. I can't eat, I can't sleep, I continue to pray daily that God will reveal His will in our lives. Do I want to know the answers? and what will I do once I do get the answers I have been longing for? If Mito is what Vivien has, where do we go from here? If Vivien does not have this disease, I may once again look a fool in the eyes of others. So much to think about and still so much to do. I am grateful for an Everlasting God that sees what I can't and can guide me during those times. 

The Golden Rule

As each year whisks by, I am reminded of just how much my children have grown. I see them everyday and watch them discover new things. I enjoy conversations on everything from the proper steps in cooking our favorite dinners to why tigers have stripes. I am amazed at how little I've become to know about the simplicity of life and living when I view my life through the eyes of my children.

I have always prayed that my children would not only love the Lord God with all of their heart and soul, but that they would live a life that reflected that. I pray that they instinctively put others before themselves and reach out to help others in need. My mother taught me this as a child and it has been one of the best gifts I could have ever received as a child. At seven years old, Isaiah has already started showing this quality and I am so thankful and blessed to be his Mother (not to mention honored & proud).

Isaiah's first week of school has been a successful one. He loves his teacher and enjoys his classmates. He comes home and is elated to see his sisters and tell them all about his day. He is a teacher and protector by nature. So, he's always trying to show Laura Ellen how to do things instead of doing it for her, I think he enjoys seeing the accomplishments of others and celebrating with them. The first afternoon I picked him up from school I was going through the paperwork from his folder and pulled out a sheet that read, "Wimberly Worried". Isaiah quickly described the assignment on the first day of school and he wrote down the things he was most worried about...he, was on the bottom of the list.  I like the way he makes his bed before going to school this year and how he neatly folds the pages of one of his favorite chapter books, "Diary of a Wimpy Kid." He's meticulous about certain things and likes order and organization. He is such a loving, giving, generous, caring, compassionate, selfless little boy, and I am so blessed to be his Mommy.

Saying Goodbye to Summer

This summer seemed to start slowly and move quickly. Summers here in the Southeast can be scorching and humid. The smells of grass slowly withering from the heat of the sun and lack of rain and the stagnant air that lays thick on your face and threatens to steal any fresh air you long for. I love summers here. It brings about stories from old oak trees that gather together the shade of summers past. It brings the sun at a different place in the sky, almost out of reach of the clouds. It brings long days that can only be spent with the Atlantic on the horizon and the sand in the wrinkles of the skin on the bottoms of your feet. Summer in the South, my favorite time of year;)

This summer we started with a trip to Baltimore Maryland for a few appointments for Vivien at John's Hopkins. We decided to bring Isaiah and Lara Ellen along as well. My Mom joined us to help with the older kiddos during the day when we were up at the hospital with Vivien. The kids were such great traveling buddies. There were no major meltdowns or catastrophic occurrences while we were there.

We enjoyed the Inner Harbor area every evening after doctors appointments and naps. It was much cooler at night and the lights on the water were beautiful.

My most favorite part of the trip other than the exciting news about Vivien being able to start very small amounts of oral feeds was our trip to DC. I remembered going to DC when I was 12 to see the unveiling of the Korean Memorial. My grandfather fought in that war & I was elated & honored to be able to share those memories with my kids. This Memorial attracted so many people of all different races, ethnicities, backgrounds, and religions. It was incredibly humbling for me to witness people that were brought to tears by being able to walk on American soil and feel free, maybe for the first time in their life.

Another favorite was the Lincoln Memorial, I held back tears as I explained to Isaiah what Abraham Lincoln did for our country and how he fought for equality for every man, woman & child. It quickly became his favorite Memorial as well

The most comical part of the trip other than the fact that we decided to walk DC in 6 hours on the hottest day of the year & drive 8 hours back home without having any place to shower first was when Laura Ellen caught a view of the Washington Monument...she said "Look Daddy! It's a pencil!"

She's loads of laughter

Thank you Mama for spending the week with us. We had a great time and I know memories were made along the way for the kiddos. They love their Grandma Ri-Ri.

After Baltimore, we enjoyed copious amounts of time by the water. Aunt April's pool, the waterpark, the beach, the small pool & the slip&slide in the backyard. Anything to keep us cool wherever we'd go. 

One of the many benefits of living 15 minutes from the Atlantic coast...

Coastal born and raised, the sand beckons our feet and the salty air craves our hair to mingle through. We cannot escape the joys and memories made on the coast as we welcome summer and all too quickly bid her farewell. 

Button your Button

I have never really been afraid so-to-say of having a child with a feeding tube. Vivien's g-tube was placed when she was only 2 months old and now that she is approaching 16 months it has become just as much of my daily routine as brushing my teeth. I promised that I would not let fear hinder me from caring for Vivien and all of her needs. I've always prayed that God would grant me the strength to accept and complete the task at hand. Little did I know that would include changing her button and dealing with the lovely stomas that occur every once in a while.

Sunday morning as I was just waking from slumber, still hugging my coffee cup and wishing the caffeine would kick in soon, the girls were upstairs playing in Laura Ellen's room. It was about an hour or so before we needed to leave for church. I never heard any whimper out of them when all of a sudden Michael ran into the room in a panic and telling Laura Ellen to stop (can you say he's the one that panics much quicker than I do;) As I ran upstairs we found Vivien laying on the ground looking up at her sister with a face that expressed "hey, this kinda feels pretty good, thanks sis!" Laura Ellen had pulled her button out. There was a clean hole right where her button had been. I am assuming the  conversation went a little like this...Laura Ellen to Vivien..."Vivien, lay still so I can fix yur 'buntton'" Honestly, I can see Laura Ellen playing a mini doctor with her play stethoscope and other "medical" accessories.

I am amazed that Vivien did not cry when it was pulled out. Not one whimper, not one flinch, not one vocalization about the fact that it was uncomfortable.

I loved how she just laid there as if she knew she was supposed to wait for one of us to place it back in for her. I think she was even instructing Michael what to do & how to do it. Or, maybe she was saying "Look at that thing! That totally just came out of that tiny little hole!"

The balloon was still intact and wasn't bad, so instead of using the "backup" we have in the cabinet, we felt as if it was better for us to "reinstall" the prior button. So, with clean hands and accessories in hand, Daddy did. He's my hero, always ready to tackle any job.

Now that is when she flinched a tad bit. But the cry lasted as quickly as it took for Michael to place it back into her tummy. *I should note here, we deflated the button before placing it back in the hole

Back in place and working like a charm. She also did very well considering. I almost wonder if she was crying because she didn't want it back in & she wanted to be able to eat a cheeseburger by mouth. If only she didn't aspirate, that could be a possibility for us, but for now, we will keep her well fed by her button.

The excitement was over quickly and we were all smiles again playing barbies & dress-up, legos & cars 

I am blessed with 3 children that all have unique personalities and love to explore and play make-believe. There is never a dull moment in our house and the laughter always ensues after even the most stressful moments.

Not to loose the excitement from earlier in the day or loose a dull moment, later that night while hooking Vivien up for nighttime feeds, the trusty 'ole Joey Pump gave us the *blue screen of death...* It went completely blank. Luckily, Michael has the pump down to a fine science and was able to remember what buttons to press from memory.

I was able to call our heath supply company and they were eager to swap the pump out for a new one. Thank you Kangaroo Joey Pump for one faithful and amazing year, you have truly gone above and beyond, may you find rest or either a renewed operating system and are as faithful to someone else as you have been to us.

We are glad we are able to Button our Buttons