Tag Archives: Kaci Kennedy

A Glimpse into the Journal of a TSC Mom

Day 23 of Blogging for TSC Awareness

by guest blogger Kaci Kennedy  (Woodward, Iowa)

A glimpse of my last two days thanks to TSC.

May 17th, 2015. In to do mode. Pack the van. Must hydrate Porter. Push Pedialyte. He will gladly drink the sugary drink all day long. Drive four hours to our nearest TSC clinic. Try to check into hotel. Realize your ID is not in your wallet. Hold back tears but minorly freak out you may need to drive all the way back home. Go back out in the rain and search the van. It’s found! Check into hotel. Try to sleep with a 22 month old and his little 5 month old sister.

May 18th
6:15am Wake up all, get dressed, drive to yearly MRI.

image1-37:30am check in. Porter is historically a hard poke to get in his IV. The MRI team is ready for that. Nitrous Oxide. A special team to put his IV in. They get it the first time. Praise the Lord! (Last time it took over two hours with many many different interventions.)

8:30am He goes back as they put the medicine in his IV, his IV slips. Must put in another one. Porter screams and screams and screams. Finally he’s asleep.

8:30-10:30am I wait. Little sister sleeps. I’m typically as far from an anxious person as possible. Easy going, go with the flow. People with anxiety are a puzzle to me. Except during these two hours, anxiety makes sense. Will he have a SEGA? What will his kidneys look like? Did the fluid around the brain increase? I have a fear they will find something major and we will have to stay at the hospital. Again crazy thoughts. So highly unlikely but with tsc you never know. My thoughts are attacked.

Continue to wait…

10:35am  My guy is back. Sleeping still.

11:00am slowly he awakes in my arms. He’s ready to walk and wants to run away, but his body says not quite yet.

11:30am We get the okay to go get lunch. (Let me tell you the talent of a mom to feed herself, a 22 month old and breastfeed a five month old simultaneously)

1:00pm We go to the TSC clinic to meet with his neurologist. He shows off his recent tricks. He walks, he throws balls, he kicks balls. He says his one word often with much enthusiasm…GO! The dr asks where is the ball and he delightfully shows him he knows where that is. Porter plays and we all sit in amazement of the huge strides of development he has made since our last visit.

I get out my list of questions. The doctor and nurse are wonderful in answering each. Are those facial angiofibromas? Is this forehead plaque? What treatment do they recommend? His next status seizure what should we do? Recommendations on how we should minimize risk? What about eye exams and Sabril (my nemesis)?

We get to the MRI…no segas…my heart can breathe again. (Exactly it’s pretty spectacular that my heart can do that because it should beat but in cloud nine it breathes life.) No major growth and kidneys look overall good.

2:30pm Start the four hour drive home. Contemplate a stop at IKEA
but the two crying babes dissuade me quickly. Pray that we won’t be back for a year. Pray that the seizures stay at bay. Pray that no strange behaviors bring us back in Porter’s case extreme sleepiness. Thank God for the joy he has placed in Porter.

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You will not let TSC define you.

Second Annual “Blogging for TSC Awareness Month” Day 10

by guest blogger Kaci Kennedy  (Woodward, Iowa)

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I tell myself TSC will not define my child. It will not define who he will become. Who he can become.

Yet fear lingers. It tries to overtake.

It attempts to invade my mind. My husband’s mind.

the moments. Moments when fear overtakes…

was that a seizure. that eye movement. that arm twitch. that look.

It wants to crush all of our hopes and dreams for our little one. It wants to tell us he can not, he will not.

I want to fight. I want to have the strength to fight. To fight for my precious one. To show TSC you have no power.

You, my little one, give me that strength.

You do not know what TSC is. You will not let it define you. You smile. You roll over. You reach out for me to hold you.

You triumph daily. Every moment.

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Please check out Kaci’s blog at http://kaci-jo.blogspot.com