Most days are good days

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We celebrated our 10 year anniversary of our diagnosis day on May 16, 2018. It’s crazy how time flies. Parker just finished 3rd grade, and we are enjoying our summer. When she began the year, her reading was assessed at a 1st grade, 4 month level. We know she’s delayed in every academic area. And, we were thrilled that she had begun to read. Over the year, her teacher, Sped, Para Pro and our family noticed that she began to flourish. At the end of the year, she wound up testing at a 3rd grade, 4 month level! Her reading improved two complete grade levels! It does take a village, and I’m so grateful for the precious souls that help in Parkers’ progress.

Most of our days are good. Parker is my quirky, funny, happy girl. During Sunday School, her teacher was asking the kids what they do when they are sad. Parker emphatically stated she never gets sad. Not ever. Of course, that’s not true. But, I love that she feels so optimistic about her life. She recently asked me if she could live her live all over again because it’s been so awesome. Her spirit is infectious, and I adore her.

Like our other snowflake brethren, Parker is unique. She list of diagnosis is long and would make anyone gasp once they started plugging them into Dr Google. However, she pushes along and is my sunshine.

At this point, the bad days center around seizures. She has had them since 10/26/2009. Over the years, they have been well controlled with one here or there. In the past year or so, we have seen them increase to 2-3 a month. Her postictal migraine is actually worse than the seizure most of the time. It’s so difficult to not be able to take pain away from a loved one. We have friends whose kiddos have many seizures a day. Epilepsy is so unpredictable.

We are headed to Seattle to spend time with family – by blood and some my favorite hydro families. Parker had a seizure going through security and had a migraine during our first leg. Some times suck. But, my girls resilience and smile pushes us through.

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My little star

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    About a year ago, I was contacted by a British production company. They found me on several sites including this blog. The Producer told me they were going to do a documentary about hydrocephalus and wondered if I would share our journey. I was thrilled to be able to  bring awareness to such an underfunded and unrecognized condition that affects so many people. Little did I know at that time, the show would air on TLC! The exposure would be beyond anything I’ve ever seen. 

    We filmed for 4 days in January. The Producer and Director were superb. They were very invested in the piece and had a wealth of knowledge about the condition. 

    I’m pleased with the result. You can view it online here for $1.99 in the US. https://youtu.be/Ns6au-0Gulo

    And, here is a press release from The Hydrocephalus Association:

     http://www.hydroassoc.org/hydrocephalus-receives-national-attention/

    They included a Parkerism, which made everyone smile. 

    “If I took a hot lava bath, would that be a problem?”

    I’m proud we have been able to help bring this condition into national media. 

Perspective

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Our days are now filled with mundane things. Parker is in 1st grade at a public elementary. Her school days are packed with reading, math, science, art and other essential curriculum. When I ask her what was her favorite part of the day, invariably, she says recess.
Life is good

It is easy to forget things would be completely different depending on where we live. I take for granted that in the Western World, a fetal diagnosis means you are watched by a High Risk OB, and your child will have a Neurosurgery consult at birth or before.
Parker received her shunt the day after she was born. It can be scary for some to think that their infant will have brain surgery. I believe it is a blessing. It is truly a life saver.

What would our lives look like 8,500 miles across the world?

Meet two year old Roona Begum from Tripura, India. Like Parker, she was born with congenital Hydrocephalus which caused spinal fluid to accumulate to such a degree that in by the time she was a year old her skull had swelled to 94 cm when the average size is 46 cm. The compression on her brain was immense and heartbreaking.
Roona 1
Roona 2

Her parents Fatima and Abdul were desperate for help however coming from a very poor rural part of India, they didn’t know what could be done.
Through the help of two Norwegian students who started an online campaign to raise awareness and funds for Roona, a charity stepped in and raised significant the money for Roona to travel to Delhi to be seen by a leading Fortis Hospital Neurosurgeon Dr Sandeep Vaishya and for surgery.

On the first meeting Dr Vaishya didn’t know if Roona would survive as her Hydrocephalus was so severe. However he decided that emergency treatment was necessary.

Roona subsequently underwent five surgeries over the course of a few months to drain excess fluid from her head and reduce the size of her skull. She spent 105 days at the Fortis Hospital before being discharged.

Meet Roona AFTER SURGERY

Roona is now three and she is doing well. She is now smiling and even starting to laugh. She can hold her head straight and she can move her head from side to side on her own.
Roona 3
Roona 4

Her Neurosurgeon who has recently assessed Roona again has been surprised by the extent of her recovery. He says he sees a lot of improvement which he didn’t expect. She has gained weight and her activities have improved a lot.

Her parents are delighted and say they never expected their daughter to survive but now they have hope and are thankful to the doctors and all the people who raised funds to support them.

Roona is miraculous. She is a beautiful snowflake in our Hydrocephalus family.

Snowflakes

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The question of prognosis invariably is one of the first things a newly diagnosed family considers. It is difficult to hear there is a complication with a fetal brain. The unknowns are intense and agonizing. Getting caught up in the what-ifs can be all-consuming.

Somewhere around the 27th week of gestation, we were unable to accurately measure the ventricles in Parker’s brain. Ultrasound after ultrasound, we watched the ventricles increase exponentially.  With each Perinatology visit, we would sit white knuckled in the waiting area praying for a ventricle stabilization or a decrease. With each visit, we watched Parker’s fluid increase, and her brain compressed until it was a fine sliver.

It was at that time that I felt peace. I know it sounds completely absurd. But, it is a fact. I realized there was very little I could control. I was unable to stop the increasing head circumference. I was unable to stop the fluid. But, I could control how I reacted to the terrible situation. I could relish in the fact I was pregnant. Many families struggle with infertility. However, the miracle of a child was growing inside me. That fact should translate into joy and celebration. The worry and fear lifted.

This brings me back to prognosis. Hindsight is a wonderful thing. While I had abandoned the anguish, I wanted to prepare. The ultimate outcome of a person diagnosed with congenital hydrocephalus varies wildly. I have likened our children to snowflakes. Each are very beautiful. And, every “snowflake” is unique and precious. I have yet to find two children who have matching conditions with a matching outcome. Hydrocephalus comes with its own complicated web of intricacies. There is no way to predict what may become a challenge with one child and not with another.

Appreciating our snowflakes for their exceptional gifts is of the utmost importance. My goal is to strive to never let a moment pass that I’m not thankful for the wonderful child I have been given. She is truly my blessing.

 

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A birthday girl

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It’s hard to articulate how much one little girl can change your world. I wonder what would have happened if Parker had not been diagnosed with Hydrocephalus? The diagnosis doesn’t define her, but it has definitely made our path a different one. I’m fiercely passionate about Parker and all of her Hydro buddies. We have met a lot of awesome people along this journey. While I would take her pain away in a heartbeat, I have to think Hydro was brought into our lives for a reason.

Yesterday was Parker’s 5th Birthday. It brings tears to my eyes to think of how much love I have for that little girl. You are my sunshine, Parker Elizabeth, when skies are grey.

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Mat Man

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The Summer has been rolling along way too fast. I can’t believe it’s already August and Parker will soon be back in school. We decided it was best for her to take another year in Pre-K to fine tune her fine motor skills and gain some maturity. Last year was a good year for her to gain new skills but she was literally the youngest child in the entire school of 200 Pre-K children. I know this is something even parents of typical children who have August birthdays struggle with. And, my due date was actually Oct 15th, so she really wasn’t supposed to be here just yet.
Early in the semester 2012, we started Parker on an IEP for Occupational Therapy for assistance with fine motor skills. This has been the first time since she was one that she wasn’t developmentally with her peers. Her fine motor skills are delayed. Over the school year, we had seen minimal progress with her writing/drawing specifically. She did improve with cutting with scissors. But, I’m so eager for her to learn how to write her name, which is a skill that should be mastered by the end of Pre-K.
Parker has little interest in drawing. I’m not sure if its because she isn’t very good at it or why. But, this summer she has had one on one OT at Special Care and I love the results! In just several weeks, she drew this

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I’ve never seen her draw a figure that actually looks like a person.

I’m hopeful this momentum continues into the school year.