Peaceful Tuesday Drive

Today I drove Vivien down to MUSC to have her lab work drawn. A two hour car ride with my sweet Mae Flower and God. I love driving to Charleston, crazy I know. But, after living there for two years during college I began to grow especially fond of the spirit of Charleston. I love looking to my left and over my right to see the Marsh and all of the Sweet Grass Basket Stands. There is such history and culture in Charleston. Michael and I talk quite candidly about moving to Charleston one day. I could see us rocking on our back porch overlooking the marsh enjoying a good cup of coffee and reminiscing of our youth.

During the drive I received a phone call from my future boss. I am excited to start working for a private organization as an Early Interventionist. I am honored and humbled to have been given this opportunity. After having some of the experiences we have had with Vivien and Early Intervention ourselves, when the job was presented to me, I prayed that God would help me to comfort other families that experience some of the same things we have encountered as a family and be their advocate. I have always reached out to find other families that have similar stories as ours. I feel a community is a place to connect and feel at ease with what is going on. I am excited to embark on this journey. It is only part-time and allows me to work from home 90% of the time in my home office. This will allow me to continue to spend time with my family and still go to all of the routine and maybe not so routine doctors visits with Vivien. I feel as if it is truly an opportunity in which I don't want to pass up. The fact that I get to stay home with my most favorite people and still help others gives me such peace about taking this job opportunity.

Vivien was such a trooper today. We chose to take the 2 hour trek down to Charleston because one of the best lab techs we have ever worked with was willing to draw Vivien's blood. We have had a not-so pleasurable experience with a local lab and thought it would be best if we drove a little farther for better service. Unfortunately, we had to do two sticks because the first vein blew :( I was so proud of her. The first stick she looked up at me and grunted with those beautiful brown eyes of hers and sweet pouty lips. But she held it together, kept her composure and sat through two or three vials. Then, her vein gave way. We then had to lay her down, and well that didn't go over as well. I think it is the crunch of the paper and the fact that she has all those faces looking down at her, a sense of disaccord. We then had to get a urine sample, it took a little while, but we were able to get all we needed and then some ;)

She's my hero. I truly sit and look at her and think of all of the things she has had; many shots, labs, procedures, probes, scopes, and tests and wonder how she can be such a jovial child. She is always laughing and smiling, loves to be loved and loves to give love. For all of her smiles and giggles I am blessed ten fold. I love this little girl and today was such a good day, just her and I.

Food Connoisseur...

Vivien was recently released from BabyNet. She graduated her speech therapy by starting oral feeds (I still have difficulty with this, because the goal was not to orally eat "safely," only to eat orally). Regardless, she has done amazing things recently. Her speech is still limited, she's only mastered a few words; Mama, Dadda & No. Words like; more and please, come out sounding very phonetically impaired. But I know she will get there. She even tries desperately to say things like "how are you doing today?" and "I want that." I have full faith that our sweet girl will get there, time is becoming more of a friend and less of an enemy lately. That is something I can accept :)

About three months ago we started letting her eat organic melt aways to just test the waters. The first few days were a bit rocky, but within a week, she seemed to be choking less and less and wanted them more and more. So, I then allowed her to graduate to the dissolvable puffs (we still broke them into small pieces for her). After about a month of that, I felt we may be able to try Cheerio's. She eagerly took to them and began to want nothing to do with the organic jared food I was giving. I'll take it! Anything to see my girl working those fine motor skills and wanting food. Parents that have encountered oral aversion know the sheer joy we have when our child wants food.

So, just last week I brought out the Goldfish. I would bite them in half, only giving her the other half, just to see how she responded to the texture and consistency in her mouth. Again, I couldn't get them on the tray fast enough for her. She couldn't get enough. I began having such excitement when packing her cooler to take with us out and about. Not only am I now packing a syringe for bolus feedings I am able to include a sippy cup with a stopper & a small container of Goldfish. Amazing how snacks can change my way of thinking. One morning she went to the pantry all on her own and grabbed the bulk size box of Goldfish and held it up with all of her might, signaling she wanted a snack :) I am so happy for her and her accomplishment and pray that she can continue to enjoy food and tolerate more and more textures and consistencies.

Evening before last I made chili for the big kids and thought, why don't I give her a spoon and a few beans to see how well she can coordinate a spoon to her mouth. To my surprise and fascination she did so well. She was accurate and careful in her precision of placing the bean on the spoon in just the right way. She was enjoying having the opportunity to scoop her own food and I could see the pride on her face as she sat beside her older brother and smiled up with the hope that we would commend her for her efforts. And, man-o-man did we?! She was so in-tune with what takes place at the dinner table, that she held out her dirty little palm to proclaim she needed a napkin. As she picked up the pink napkin to wipe her chili bean mustache I couldn't help but apologize to God. I apologized for underestimating all of the things that are possible through him and for ever doubting that a spoon and bowl were impossible for her to master.

She shows me everyday how strong willed she is and how much I underestimate all that she can do. I am grateful for moments when I realize I am wrong and I am the one that needs to just trust and have faith that she can move mountains.

Come And Listen...

"Come to the waters edge all you, who know and fear the Lord. Let me tell you what he, has done for me, done for you, done for us." dc*b

The day I found out I was carrying my first child I was so anxious, excited, but mostly anxious. I was humbled beyond measure that the God of the Universe, would show favor on me and my husband and bless us with the responsibility of raising a child. The moment I heard his heart beat and then held him in my arms, I knew only one prayer to pray...

"God, I promise to give him back to you. I promise to try everything in my power to show him your Love and in my faults, you will still shine bright, so that he will follow you and walk blameless in your sight all the days of his life. Thank you for this gift..."

I have continued that prayer with the birth of our daughters as well. My one and only continual prayer has always been that our children will know and fear the Lord and they will shine bright to surround themselves with people who have the same goal, and they make it their life's mission to share the Word of God with others in their own lives by being the hands and feet of Christ.

September 29, 2011

Isaiah, came downstairs to the office with this particular glow and giddiness to him. His smile was electric and I knew he had something he wanted to say. He started by saying, he was looking at someone who was wearing brown shoes, had red-hair, glasses, jeans & a blue jacket. My response was, well that sounds a lot like me, silly. To that he said, "yep and I love her so much."  I gave him one of those bear hugs that sucks the breath right out of you, as he gasped to come up for air. I gave him a smile and said, "I love you too buddy, more than I could ever show." Then he said something that made me giggle. "You know, I've been baptized?!" I questioned that, seeing as he has not. We felt he had passed the age of being Christened recently and didn't want to confuse him, so we eventually decided to wait for when he was ready. Then, he simply said, "yea, tha shower!" I continued to giggle and said, well not really. "Well, I held my head back." By this point I was on the side of hysteria. I then said, well how are people baptized? (we believe it can be a number of ways; immersion, pouring, or sprinkling). His response was, "well the preacher holds you under the water for like 5 minutes and then brings you back up..." I said, well yea, it's kind of like that. But, why do people get baptized? He said with such a boldness and assurance, "because they have Jesus in their heart and they want other people to know too." I think my heart smiled so big that the hair of my head was in a semi-circle :) I then asked if that was something that he wanted. He again said so boldly "yes ma'am! But I'm a little anxious, all giddy inside like I'm shaking." All, I could do at this point was cry tears of such joy, I had goose-bumps and could only think that the Holy Spirit had found its way into the heart and soul of my precious little boy. It all began to make sense, why he seemed so electric when he placed his elbow on the office desk and gently laid his chin in his palm, smiling with all the Glory of the Holy Spirit. He then proceeded to tell me that "it had been spinning around-&-around in his head for a while" (while holding his finger up to his head and turning it ever so quickly at the joint). So, I asked him if he would like to pray a simple prayer of repentance and acceptance of Jesus Christ. He agreed. So before bed, Michael and I joined by Laura Ellen, laid hands on Isaiah and led him in a simple prayer that held such significance.

In that moment I thanked God for all of the blessings he has so graciously given me and my family. I thanked him for the joy, proclamation, and salvation of our 7 year old. I told a close friend that I never really understood or could even comprehend the promise God had made to Abraham all those years ago until I looked into the face of my first-born. Generations of generations will know the God of the earth and praise the Son of Man and God. I am part of that lineage and my children are too. Humbled and so unworthy I am, we are. 

I continue to pray that he will walk towards a strong relationship with Christ and that he will live a life that will reflect that. I also pray the same prayer for our daughters and know that God is always faithful in his promises.

We are scheduling the baptism of Isaiah soon. He has chosen to be poured and I can't wait for that moment. I discovered what we considered his birth scripture when he was just a baby. His birthday is 6.8.04. Isaiah 6:8 in the Old Testament reads, God said,"Whom shall I send, and who will go for us?" And, I said, "here am I, send me." 

We are not much on superstition or signs, but we do believe in the divinity of God and have always felt there is such meaning in his birth scripture and who he is. 

A baby boy will grow to be big and strong and enter a world full of doubt and uncertainty with the imprint of God on his heart and in his life. This is where his story begins and I feel certain he will one day be able to say, "Come and listen, come to the waters edge all you who know and fear the Lord, let me tell you what he has done for me...for you...for us..."

 

Mitochondrial Disease Awareness Week

This past week was Mitochondrial Disease Awareness Week September 18 - 24. Mitochondrial Disease (Mito for short) is a group of disorders that affect the Mitochondria (Energy Cells) of our body. People with Mito,  are not able to convert food they eat, into viable energy and oxygen their bodies need. The disease is accompanied by a myriad of symptoms that literally do not fit a common mold. Numerous body systems are effected causing different levels of severity in those body systems. The facts of Mito are often grim and difficult to understand. Facts and Stats say:

Every 30 minutes a child is born that will develop Mitochondrial Disease by the time they are 10. Nearly 1,000 - 4,000 children are born a year with Mitochondrial Disease. 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20. Mitochondrial Disease is as common as all childhood cancers combined and just as deadly.

These are statistics that I can not escape. The thoughts of the last two sentences from the line above haunt me; 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20, Mito is as common as all childhood cancers combined and just as deadly.

I waxed and wained this week about writing about Mito Awareness and Vivien, because we are not certain this is in fact what she has, but it is a definite possibility and one that has given us a clinical diagnosis thus far. I try to think maybe all of Vivien's symptoms are just a fluke and with time, like many doctors have said, she will "out grow all of her symptoms." She is doing so well now compared to where she has been. However, there is an affirmation that resonates and lingers with me still; Vivien is and never has been like many other children her age. Her fight for life began early and she has fought very hard. As I type this, she is again sick with strep throat and an ear infection, not sleeping well at night and screaming out as if in pain a few times a day. She's restless, cranky & on edge, running around and smiling one minute and crawling in my lap the next.

Two weeks ago we walked into a doctors office to hear words like; uncertain, stable, & progressive. Difficult words to hear, even more difficult to comprehend. Although, as of right now, we are not certain of this diagnosis, I feel the tests will reveal what I have for so long thought was going on with our sweet Vivi Mae.

We stand on the fence. On that fine line of yes or no, certain & uncertain, progressive & stable, confirmed or unconfirmed. We will soon walk over that gray line to find a more black & white picture. Tests will give us answers that will give us more confirmation & more uncertainty.

Reading other blogs by Mother's that live Mito day-to-day with their children, has given me a better sense of how this horrible disease affects the lives of many families, families like; Jack's, Nathan's, Hudson's & Gavin's. More times than often, I feel as if I am reading my own words and experiences. Many families living our day to day and often times under far worse circumstances. For this reason, I knew I needed to write about bringing awareness to Mitochondrial Disease.

Less than 1% of Health Research Funds go towards the research for Mitochondrial Disease. Such a sad and stark reality. Raise awareness, Raise support, Raise your voices to let the adults, children, and families effected by this horrible disease be heard.

I firmly believe, stand for what is right, even if you are standing alone. Alone is where many of these families, ours included feel they are. But, with our support and advocacy, that small voice will rise to the surface causing a rippling effect that will carry on those voices, so that in hope more research can find better treatments and possibly a cure. Visit United Mitochondrial Disease Foundation or MitoAction to learn about ways to give.

Lean On Me...

I am a firm believer that I have some of the most amazing friends in the world. I am blessed with women that surround me with prayers and steadfast love. And I can honestly say, I too, love and pray for them as well. These women have laughed with me, cried with me, held my hand, hugged my shoulders, listened to me vent, fervently prayed for my family. Godly women, that love the Lord God with all of their hearts and represent that love by reaching out, not only to their friends and family, but to the community - to live and love like Jesus. They are whole-heartedly Proverbs 31 women. 

25 She is clothed with strength & dignity; she can laugh at the days to come. 26 She speaks with wisdom, and faithful instruction is on her tongue. 

While keeping a dear friend's little girl last week, another dear friend called. She wanted to check-in and see how things were going, catch-up with the family and chat for a few moments. But more than that, she wanted to call to set up a time to come and visit & asked what I would like for her to pray for, for our family. Humbled and honest, I laid my heart out to her, as I always do when we chat. Love, it's as simple as that, we love one another as if we were created side-by-side. 

Her requests got me contemplating how incredibly fortunate I am to have friends that desire more than just a shallow surface friendship. Friends that call to pray with me and for me and my family. That sort of friendship doesn't come easy in today's cold and self-centered world. I am blessed to be able to call SO many Godly Women my friends, we all have a common goal...Love Jesus with all of our heart and soul and share that love with the world. We all have the same desires in life and that is something that makes our friendships easy.  

30 Charm is deceptive and beauty is fleeting; But a Woman who fears the LORD is worthy to be praised.

I learned how to love ambitiously from my Grandmother, Mother & Sister, as well as the women on my husbands side of the family. Family will never be replaced, the things they have taught me about life have helped me to fair-well in this difficult world. They gave me roots & helped me find my wings. My friends have been the ones to help me soar, being the wind beneath those wings.

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 

Strep Throat Dragon

When Vivien woke this morning she was just as happy and giggly as she normally is. With hair that wakes itself up in the morning *full bodied hair on a child her size should be a crime* Her half-gum half-teeth grin and giggles in the early a.m. can turn anyone into a morning person. She woke with a very dry diaper (after a full night of continuous pump feeds, one would think her diaper would be soaked, another quirk to her medical issues) and no fever at all. However, her eyes told a different story. Underneath those big brown eyes of hers and eyelashes that are as thick as wool, were puffy sickly rings that danced from one corner of her eyelid to the other. After her breakfast and my coffee we headed off to the doctor, smiles, dark rings and all.

                                                         We ALWAYS bring our own toys

The parrot flashlight that sings "LA-LA-LA-LA   LA-LA" & whistles is her favorite:) *It is secretly mine too, it gets the best reactions when in the grocery store or Target...people turn to look and see who is whistling "at them"...

                                                       

She LOVES the cubby at the doctors office. It is the perfect size for her to scoot her small bottom up to and park her car. Blowing bubbles is also a fun pass-time as we wait to see the doctor

And so it rings true...the Strep Throat Dragon won this battle again. It takes 6 minutes for the test to process. It took Vivien's all of 2 minutes. I am still so amazed at how she gets the Strep Dragon so often. We stay at home 95% of the time, she is never exposed to the sick, and no one else in the house gets sick  from her. Just par for the course I guess. We have fun and Slay Dragons big or small wherever we go :) With a little antibiotic & LOTS of TLC, she will be back to her old, new, normal, Vivien-self.