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Archive for the ‘Kiddos’ Category

Brief update: Other than a brief 24-hour fever (up to 103.5) this past Thursday, I have been fever-free for nearly two full weeks. Further, there have been no fevers since stopping the antibiotics last night (Saturday)! If I can make it through the next 12 hours sans fever, I will be released Monday afternoon. Monday marks 30 days since I was admitted and brings my total time spent inpatient since mid-August up to 95 days. There have been no real strides made and the doctors have reiterated that I will be back. But we’re trying to make the most of the good days I have and want to celebrate them out of the hospital as much as possible.  Thank you for your continued support, prayers, and love.  

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Like most across this country, I spent my time this past long weekend focused on the multitude of blessings in my life. These marathon hospital stays are survived only through the kindness of the people in my life. It is difficult to know how to appropriately thank you all for what you have done for us. You have inspired and humbled me.

I am incredibly thankful that my body has protected my mind against the effects of the recent medical hell and prevented me from remembering a large portion of the worst. I am thankful that the parts that I remember are mostly filled with good and love and family and friends. And I am thankful that my family and friends fill me in on all the life that I miss while incoherent. Thank you to the family members who leave messages and send numerous texts of love. Just pure love. Thank you so much for all the cards we have received. Your words fill us with warmth and remind us how much we’re loved.

Thank you to all my younger friends who work endlessly on the artwork that adorns my hospital walls. Thank you for the e-mailed iPad drawings and the goodnight videos. Thank you for my school pictures and the drawings which constitute my wallpaper. I get questions and admiration all day. And each little glance from the corner of my eye brings a smile to my face.

Thank you to all our visitors. Despite the fact that I sleep through roughly 2/3 of all visits, you keep coming back. You bring your joy, your stories of the outside world, your smiles, and your laughter. All those good things that help to ensure that the medicine used inside the hospital will actually be effective. Thank you for playing the latest strategy games with us for hours on end. Until security reminds us that we are, in fact, in a hospital. Thank you for spending your lunch hour with me. For stopping in after your own appointments in the area. For bringing me fuzzy socks and solitaire games. Thank you for talking about the latest movies and the book you read last month. Thank you for reminding me that life goes on.

Thank you to the family and friends that help to remind us that time is still passing while we’re still impatiently inpatient. Seasons change and holidays still happen. But thank you for making sure we’re still a part of the passage of time. Thank you to my mom who helped us decorate pumpkins and my room for Halloween. Just days after I had pulled a Halloween stunt that nearly took my life. Thank you to my mito sisters for spreading out the Thanksgiving love and for being thankful with us for three consecutive days.

Thank you to the Bush/Dalton/Mahoney household (aka our “Massachusetts family”) for allowing me and Keith to stay for the four days between major hospitalizations. Thank you for sharing the giggles and smiles of my dear little munchkins. Thank you for the love and the tears. Thank you for being our family when our family is so far away. Thank you Sarah for braiding my hair while I was in the MICU and bringing some beauty to White 9 with your Physics equations all over the white boards. Thank you Liz for crossing multiple state lines to bring some holiday cheer and sending me balloons to keep me company when you are unable. Thank you Stef for holding my hand through it all – even while I hated you deeply as the 108.6 fever made me the most obstinate human being in existence.

We are so moved by the actions of our loved ones. But some of the most moving blessings have come from people I hardly know – or don’t even know at all. From people I have only met in passing. Or from people who know of me solely through common friends or family members.

Over the summer, Keith and I travelled 5 hours to upstate New York to attend the Mighty Matthew Benefit. Matthew and I gathered quite an audience of his school friends and we fielded questions about mitochondrial disease and life with our “tubies.” Matthew told one of these friends that I was very sick and in the hospital for a long time. When Matthew came to visit again, he brought with him a get well letter from his friend included with a school photo. It brings tears to my eyes to know that Matthew is so well connected with so many kind and genuine children in his youth. And to know that those 45 minutes resonated with this child and his life was changed by learning more about mitochondrial disease. Thank you to this young man for your kindness and concern. And a huge thank you to his parents for raising such a proper and considerate young gentleman. It’s so reassuring and touching to that see children like Nate are in this world, making it a better place.

About ten years ago, a young girl named Brittany contacted me. She was a good friend of my very close cousin and had recently been diagnosed with chronic fatigue syndrome. As I was dealing with my own chronic medical issues, my cousin passed on my contact information, and Brittany and I helped each other through a particularly difficult time in both of our respective lives. It helped both of us to have another young girl dealing with health issues. Although we lost contact over the next few years, my cousin contacted me to let me know that Brittany had lost her life in a car accident. Her death radiated throughout her community. I am reminded yearly of the love she left in this world as my cousin’s family participates in an annual run in her honor. This year, I felt her love even closer as her uncle, Geb B., completed his first Iron Man competition with my name written next to Brittany’s on his sleeve. I feel so honored and loved to have a place next to Brittany’s. Thank you.

My mom has made the 3000-mile trek from her home in California to our Boston-based hospital twice since September. The second time she came she noticed that I bring my own pillowcases from home during each stay. A combination of allergies and homesickness inspired this tradition. In order to keep my sanity, I make sure that my pillowcases are the most vibrant and happy ones that I can find. Shortly after that visit, my mom put a call out to the long list of family and friends who have been following our story and this Thanksgiving, we celebrated with the blessings of nearly two dozen different families who sent the most vibrant and unique pillowcases that they could find. In addition, my aunt sent a beautiful ribbon quilt and a family friend crocheted a bright and happy blanket.

I just don’t know if I can say it enough. Thank you. Thank you to everyone. You are all so amazing. Thank you, thank you, thank you. To those who have called. To those who have visited. To those who have sent letters, e-mails, and care-packages. To those who have sent their prayers and positive thoughts. To those who have placed us on prayer lists. To those who have spread my story and the need for awareness about mitochondrial disease. To all those who have shown such compassion and care. Thank YOU.

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In the depth of winter, I finally learned that within me there lay an invincible summer. ~Albert Camus

Sometimes those of us with chronic illness get so caught up in the can’ts. The shouldn’ts. The mustn’ts. I decided to focus this summer on the things I can do. From embracing the lives of loved ones lost to adventures in lands (not-so-)faraway. So we celebrated, joined, conquered, ventured, traveled, laughed, cried, and smiled. And we experienced life. It didn’t matter that I did most of it hooked up to at least 3-4 tubes at a time. It mattered that I did it.

Now that the summer comes to a close (thank you, labor day), I thought I’d go through the tradition of writing the back-to-school essay “What I did this summer.” Then I rethought. And decided I’d show you.

What I did this summer:

{And wished her Happy Birthday}

{At the 2011 UMDF Symposium in Chicago}

{With my Great Aunt Arden at the Sears Willis Tower}

{Lab safety is a must while tutoring}

{Sisters Day Out – Southwick Zoo}

{First time at Niagara Falls – Maid of the Mist}

{Seneca Falls, NY – With two of my most influential people – On the bridge from one of my favorite movies, It’s a Wonderful Life}

{For the first time since my license was revoked for seizure activity}

{TPN bag, enteral tubes, and all!}

{White Mountains in NH with my favorite in-laws}

{Haven’t attempted this since I was a gymnast – take that mito!}

{At the 2011 Mighty Matthew Benefit in Plattsburgh, NY}

{We love you, Princess Eithene!}

{So blessed to live in Boston, the Medical Mecca of the World!}

{With 4 adults, 2 kiddos, 2 dogs, and a partridge in a pear tree}

{Disappointing from the weather standpoint, but fun nonetheless}

{With a grand closing to a grand summer!}

And no one can say I didn’t do. Because I did. I really did.

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One year ago, I posted on Digestive Tract Paralysis (DTP) for the G-PACT-sponsored DTP Awareness Week. As a treat, I’m reposting with the permission of my featured guest stars.

Unfortunately for me, a lot has changed in the last twelve months. Due to my worsening DTP, I became severely malnourished and the damage done to my GI system appears irreversible.  I had a GJ-tube inserted in December 2012 which has proven unsuccessful in treating my DTP.  The medications (that you’ll read about below) that once worked to “control” my dysmotility have since failed.  My motility specialist says I am likely to be TPN-dependent for the remainder of my life.  Furthermore, most of my medication has been transferred to intravenous (IV) form as I have severe malabsorption to anything given enterally (through the GI tract).  But yet, this has given me such an improved quality of life. I have more energy and less pain. My days aren’t spent worrying about getting in enough calories to sustain life.  And I can still do almost everything I could do before our various interventions. Actually, I can probably do more.

So, without further ado, I would open a window into life with Digestive Tract Paralysis. Thanks for reading!

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August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I live with DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning paralysis). I also have intestinal dysmotility which has resulted in chronic intestinal psuedo-obstruction (CIP or CIPO). And that’s chronic (meaning long-term), intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

 

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12 days ago our world lost a princess. 10 days ago we bid her farewell. 5 days ago she was laid to rest. And today? We still struggle to comprehend what has transpired.

Eithene was just short of her 5th birthday when she passed. We take solace in the knowledge that she is no longer in pain. No longer struggling to breathe. No longer hooked up to the myriad of tubies and machines that kept her with us. Eithene is free.

Ultimately, the pain comes not from the loss of Eithene – we are happy for her newfound peace – but from the chasm left in the hearts of those who loved her. Although it may offer little alleviation, we offer our hearts and love to mom Jessica, dad Sean, brother Gabriel, aunt Jill, and the entire Shriver-Hilliard clan. We further keep her best friend 6 ½-year-old Matthew in our hearts as he struggles with the loss of his nearly-lifetime companion.

In order to lessen their current ache, friends of the Hilliard family have taken up a collection of Visa giftcards in order to support the family during this difficult time. If you are interested in contributing, contact me at cnhertzog@gmail.com and I’ll direct you to the proper outlet. You can also make a direct PayPal donation here.

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One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

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Today you are You, that is truer than true. There is no one alive who is Youer than You.
-Dr. Seuss

Sometimes it surprises me how happy I am. How comfortable I am in my own skin. A year ago, I’m not sure if I could’ve seen myself this happy despite all that has changed (my zip code, my health, my occupation, my income, my aspirations, etc.). But I’m honestly, truly happy.

Keith and I deal with a ton of stressors with our daily life that shock many people. For instance, every day this week, I’ve had at least one medical appointment, over half of which were in Boston. (This is not out of the ordinary.) In addition, we’re watching my niece and nephew while my sister recovers from surgery. (This is something that Keith likes to call “birth control.”) We also deal with daily medical regiments including IV nutrition, stoma care, catheterizations, sterile procedures, and medical interventions. (This is in addition to Keith’s full-time student status and my work tutoring, researching, and volunteering.)

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April is Autism Awareness Month. Although Autism has been getting good press, many still don’t realize it’s a spectrum. Language skills, social skills, and development can vary. And autism can strike anywhere, regardless of ethnicity, gender, and socio-economic status.

So I have a treat for you. One of my favorite mommies and bloggers agreed to write a “guest blog” about her experience with her daughter. You can follow her story more closely at Living Life with a Side of Autism. Thank you, Jen!

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She sat in the hallway. Alone. In a blue, plastic chair. She was told she wasn’t welcome. She couldn’t behave like that.

She was 3. Non-verbal. At school.

This was life for my daughter before we got her Autism diagnosis. She was treated like the bad kid in class, and every day I received what amounted to a verbal lashing from her teacher. There were exasperated sighs and advice on how to better discipline. I felt like a failure. I had messed up my kid. I was reminded of that each day at 11:30am, when I trudged into the school to drag out my screaming first born. Or maybe at 11:45 after she had stopped having a tantrum in the classroom because she couldn’t put on her jacket, yet had no words to ask for help. Not that it mattered. She was still the bad kid, words or not.

A lot of children are diagnosed with Autism around 2 1/2 or 3. Katie, however, wasn’t diagnosed until the month she turned 6. We went through years of evaluations and diagnosis after diagnosis, none of which really fit. First, we were told Katie had low self esteem. Then we were told it was ADHD. Then, that she was probably bi-polar. None of this explained her extreme language delay or social deficits, however. We were told everything from she just was choosing not to speak, to she just had a strong personality. No one took all of her symptoms and put them together. We were just given a different explanation for each concern we had.

Over the years, I have moved from being the mother who just sat there and nodded her head in agreement, to the mother who does her own research and fights for her child. When Katie went from preschool to Kindergarten, things really went downhill. Fast. She was having a lot of meltdowns at school, and eventually began hitting other students. I was tired of being told my child was just a discipline problem with a speech delay. I lived with her and knew there was more to it than that. I saw her rigid behavior. I saw her inability to transition and inflexibility when it came to change. I saw her not making any friends, not knowing how to play with her toys, and becoming more and more physically aggressive at home. I saw her unable to participate in childhood activities, such as dance, and soccer, and gymnastics. She would either meltdown or be off on her own. I saw how overwhelmed she became around large groups. How going to the busy store guaranteed us a meltdown. How she had severe anxiety over the smallest thing. How she had irrational fears. No, my daughter wasn’t spinning in circle or flapping her arms, but were those the only things that defined Autism?

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