20
Aug
15

Back to School

It’s back to school week! So far no new seizures. My little man moved up, literally to the upstairs, to the Preschool 2 class. The big goal for this year is to write his name before moving to pre-K (!) next year.

The first homework assignment this week was to fill out an about me sheet. The first few questions were the typical what is your name, what are your parent’s name. According to Drake, he wants to be a librarian and his favorite foods (that he doesn’t eat) are chicken, hamburgers and bread. I was tasked with filling out the “something special about me” section. For the first two years, I always put something about his prematurity or clubfoot and what he has overcome. This time, I wrote about his love of travel and “cations.” He is so excited to use his passport to go “to PIRATE island” in 8 weeks.

In a way, it feels like a betrayal to how awesome he is to not share that part of his story. Prematurity will always be an important part of his story, and his new teacher has been made aware of his current challenges. However, prematurity is becoming more my story and his dad’s story than his, and I am so relieved.

According to my Facebook “on this day,” 3 years ago we went back into hibernation. Drake had been out of the NICU since late March and we were on RSV isolation from March to late June because it was a bad year with numerous RSV cases. Despite his need for surgery in November, Drake still didn’t qualify for Synagis even with his doctor and us filing a formal appeal. I was lucky. My job agreed to let me work part time and mostly from home, so my husband and I were able to make it work without the loss of my entire income.

RSV isolation, especially over multiple years, is HARD. Hugs to all the families prepping to spend the winter saying “no,” using copious amounts of hand sanitizer, and praying that their child makes it through healthy and at home.

   
    
 

06
Jul
15

The Not Quite Camp-out

$100 for a new tent.

$50 for sleeping bags.

$40 in hot dogs, marshmallows, drinks, and food supplies.

Not getting to go on our 4th of July (very first ever) camp out due to an ER visit?

My relief we were at home and weren’t in the woods when it happened.

Priceless.

The life of the NICU parent.

Every time, we start to think we’re getting “over it.” We spent most of the 4th at Cincinnati Children’s ER on Saturday.

They are pretty sure it was a febrile seizure. He had a suspected one once before, but it didn’t last nearly as long. We didn’t get him back to fully responsive and aware for about 3 hours.

I didn’t take pictures. I sat and I watched a blood pressure monitor and his father and I talked to him in soothing voices and we willed him to wake up. It was familiar. It was panic inducing. I was sick to my stomach the whole time.

We were in the same room they put us in when he was admitted 2 months after coming home from the NICU.

We have some new protocols to follow. The team thinks a “wait and see” approach is best for now. If it really is febrile, there is no need to put him through the neuro work up. If he has another, then we will make a new plan.

Stupid virus. Doesn’t it know summer is for fun?

03
Jun
15

World Clubfoot Day

Thanks to the Ponseti method Drake can run with both soles firmly on the ground.

“Night night shoes” and doctors well trained in the method need to be more prevalent throughout the world so all CF children can run and play! 

 

27
May
15

Beautiful, Glorious Summer

Swimming, parks, and Kings Island are in our summer forecast!

   
     

03
May
15

Parents of Preemies Day 2015

This isn’t where you expected to be. You may have dreamed of celebrating Mother’s Day, Father’s Day, Grandparent’s Day. Here you are and it’s Parents of Preemies Day.

What’s this about? Am I celebrating the fact that my child came early and needed weeks or months of hospital care or possibly didn’t get to come home with me?

Nope, Mama or Daddy. It’s about celebrating you. You had to experience every fear of every parent from the first moment of your child’s birth. You are strong and you did what you had to do. You may not feel perfect, but that doesn’t matter.

You can find out more about Parents of Preemies day here:
http://parentsofpreemiesday.org

Happy Parents of Preemies Day. You are awesome.

cuddle PICC dad picking up

Today, I’m not celebrating with my guys because my new school term just started, and I was supposed to take a test on Friday that I have to finish today. But I hope everyone else can enjoy a beautiful Spring day!

24
Apr
15

Spring School Pics

I love that his school does pictures in the spring and fall. He changes so much every week!

  
We are having a beautiful spring although this weekend is a bit cold and rainy for me.

   
               

This is the new family team quilt for the Greater Cincinnati March of Dimes chapter. It made me catch my breath. Our walk is Sunday.

05
Apr
15

Happy Easter!!

      

 We are having a lovely Easter weekend!

Drake’s 1st Easter was on April 8th. He’d been home about two weeks.

It’s always been a favorite holiday of mine, and the memory of being home for his first one just makes it sweeter.




Drake’s 3rd Birthday

February 20th, 2015

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