Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Saturday, October 5, 2013

American Heart-American Stroke Association Article

This summer, I was contacted by the American Heart- American Stroke Association and they asked if a writer could contact me for a piece about Mairead and her stroke.  I am always eager to share her story and her accomplishments, as well as to raise awareness about pediatric stroke, so I was happy to do so.  The article was featured on their website and featured in Stroke Connection magazine.  How cool is that?

Mairead Hickok: Infant Stroke Survivor and Mom's 'Hero'

Mairead Hickok: Infant Stroke Survivor and Mom's 'Hero'
  • Updated:Jul 16,2013

Girl who’s overcome stroke on her 3rd day is her mom’s ‘hero … the most amazing person I know’
Following a healthy pregnancy and delivery, Maghan and Dave Hickok brought home their newborn daughter, Mairead. The next morning, Maghan remembers feeling that everything was perfect, and that her life was complete.Maghan
Later that day, they took baby for a check-up at the pediatrician. The doctor was going through a routine exam when, all of a sudden, Mairead’s knees jerked up toward her chest. Her head turned sharply to the right, her tiny eyes seemed to roll back and her skin began to turn blue. Mairead was having a seizure.
The doctor shouted at Maghan to hold the 3-day-old baby and ran out of the room to get help.
Maghan heard a nurse call 9-1-1 while another doctor and a couple of nurses burst into the room and performed CPR on Mairead. Once the baby was breathing, they started an IV line in preparation for the ambulance crew.

Dave followed in the car while she rode with Mairead in the ambulance. En route, Mairead had a second seizure. Once at the hospital, the medical team jumped into action, preparing the largest emergency room for Mairead.

“I knew it was bad because there were probably 30 people in the room,” Maghan said.

Mairead had a third seizure and was stabilized before being taken for a CT scan, which came back inconclusive. Doctors still didn’t know what had happened and moved the baby to the neonatal intensive care unit.

It took two more days for an accurate diagnosis.
A clot in a blood vessel had caused an ischemic stroke. While doctors were unable to determine where the clot originated, they believed the seizures were how the stroke presented itself.

The diagnosis stunned Maghan.

“I just wasn’t processing it,” she said. “I thought, `Wait, babies don’t have strokes.’”

Mairead was released from the hospital after five days. She was treated with anti-seizure medication for four months and never had another incident.

In the months that followed, Maghan and Dave underwent extensive testing as doctors searched for genetic clues to what may have caused Mairead’s stroke. Neither had any risk factors themselves, and they are unaware of any family history that posed an increased risk.

Maghan later became pregnant with identical twin boys. As a precaution, doctors conducted additional monitoring for brain and heart development. The boys were born premature, but healthy otherwise.
Mairead turns 6 on July 29. The stroke caused some permanent damage, making her upbringing more challenging.

As her brain developed, new nerve connections were made to  work around the injured area. The result is that “her brain just works differently,” Maghan said.

Mairead has worked with a full spectrum of therapists to help her develop speech, social skills and life-skills, such as getting dressed.

The process has come with plenty of challenges as the family navigated through social services, therapy and other resources.

“Managing all the doctors’ appointments and therapy is really a full-time job,” Maghan said.

After the twins were born four years ago, the Hickoks sold their house and moved in with Maghan’s parents in Lowell, Mass., so she could stay at home with the kids.

“It was clear that Mairead’s deficits (problems that were caused by the stroke) were bigger than we thought,” Maghan said. “We changed everything so that we could do the best we could for our family.”
All the therapy seems to be paying off. In June, Mairead graduated from kindergarten on time with her friends.

Mairead can learn concepts, but has trouble applying them. She continues to be very uncoordinated, struggling with things such as climbing or navigating a flight of stairs. And her depth perception is limited, making activities such as going down a slide scary for her.

“Her brain will always be recovering from and compensating for the injury,” Maghan said.

Maghan marvels at how far Mairead has come and how positively her daughter approaches each day.

“She’s just happy,” Maghan said.
Maghan is happy, too, and is dedicated to helping others through Mairead’s story.

She used her Facebook page to share information, and she keeps a blog detailing Mairead’s experiences. She recently learned more about the American Heart Association/American Stroke Association, and is eager to be an advocate for other kids like Mairead.

“Now that she is older and we are learning more about the support she will need throughout school, I see that there is a need for much more education and support,” Maghan said.

“I would love to see parents and teachers be able to find more information about supporting kids with strokes in the classroom, and I would like to be a part of making that happen.”
Mairead’s struggles and successes prompted Maghan to nominate her daughter as her “stroke hero.” In fact, Maghan described her daughter as “the most amazing person I know.”

Here is more from Maghan’s note to the American Stroke Association:

“She has defied the odds and has blown us away with how much she has accomplished. … She is strong, beautiful, smart, loving, funny, determined, talented and kind. Most of all, she is happy. It's hard to see her meet with frustration, but 'happy' is definitely the word that best describes her. I hear it from her teachers and from other parents. No one would know that she is working so hard all the time; she is always smiling and is just so sweet. ... Her future still holds much uncertainty, but there is no doubt that it will be happy and inspiring.”

Mairead is Six!

On July 29, Mairead celebrated her sixth birthday!  She requested a turtle theme for her party, so turtles we had!  A group of her friends came to celebrate with her and for the first time ever, it did not rain on the day of her birthday party.  She was finally able to have a pool party.  One of the guests was her friend, Zack, who she just adores.  There happened to be a birthday party on that same day for a boy in the class, and Zack had been invited to that party as well.  I explained to Zack's mom that he would be the only boy at Mairead's party, and we totally understood if he wanted to go to the boy's party.  He told his mom that he still wanted to come to Mairead's party and he didn't mind at all.  How sweet is he?

On her actual birthday, we started with breakfast at the Owl, which she loves.  We had to bring our newest friend, Rainbow Dash.  Someone let Jen and Mairead loose in the Build-a- Bear store, and they came home with the sparkliest, most colorful, most, um, beautiful pony.  I don't think Mairead let it out of her hands for two weeks.  That thing went everywhere and still sleeps with Mairead at night.  Everywhere we went with it, we attracted a lot of attention, which Mairead loved!

Obviously, Rainbow Dash needed to have roller skates, so Mairead is able to pull it around by the leash it also needed to have.  This was very handy when we visited Brian in the hospital.  We stopped by the ER first to see my mom, and everyone there came to check out the pony.  Then, we traveled to a whole other part of the building to see Brian, and we led it down the halls in ICU.  Patients and nurses were peeking out of doors to see us pass by.  Brian was pretty surprised to see this creation, and Mairead was very proud to show it off!  Thanks, Jen and Mike!

As it happened, Mairead's Girl Scout troop had a trip to a stable planned for July 29.  Well, it was actually supposed to be earlier in the month but it ended up being over 100 degrees that day, so the trip was rescheduled!  So, we visited Flying Change Stables to see the horses.  The girls had a chance to feed, groom, and even ride the little ones.  Mairead chose not to ride that day, but she still had a lot of fun with her friends.  And, the girls sang Happy Birthday to her at the end!

Six years happened all too quickly.  One minute, she was this tiny little thing and now she is turning into a beautiful little lady.  She is 49 inches tall and looks even older than she is.  She is learning new things every day and can read pretty much any word she sees.  She loves singing and making up little songs, and she has the sweetest voice.  She is a miracle and we are so thankful to have her in our lives.  Happy birthday, Sunshine!

Miscellaneous July 2013

Since July was so hot, we were happy to welcome friends and family to the pool often.  So often, in fact, that the kids would wake up in the morning and ask, "Who is coming over today?"  We love having people here and the kids love having extra people to play with!  Our friends, Liam and Owen, brought these super cool water cannons.  The kids had a great time spraying each other with those. 

When you need a place to store your beers, a baby's stroller always works.

It's necessary, though, when the forecast looks like this.  Note that it was 8:27 am and already 82 degrees.
Our friends, Kacey and Maeve, stopped by one morning and Mairead gave Maeve rides around the pool.

                                                 Kacey enjoyed lounging on the float.

As many of you know, my brother was very sick at the end of July.  He contracted Legionella Pneumonia and was dangerously ill.  He was hospitalized for 11 days and it was hard on everyone in the family, particularly his wife and newborn baby.  We are incredibly grateful that he pulled through everything.  We saw Mairin a lot that week and were happy that we could do something to help.  We loved having her- we just wish the circumstances were better!  But we love seeing the kids with their cousins, and they love playing with them!

We found lots of new playgrounds to explore this summer, including 'Castle in the Clouds' in Littleton where the kids had a lot of fun.  We also spent extra time in local libraries to try to beat the heat.