Thursday, February 27, 2014

How I Do It

I am often asked, "How do you do it?"

This question is asked in several different contexts:
-How do you work with children with delays and disabilities and come home to a child with special needs?
-How do you work part time, keep up with the household duties, and take care of Jaycee's needs?
-How do you handle all of Jaycee's frequent illnesses and hospital admissions?
-How do you work when Jaycee needs breathing treatments around the clock every four hours during illnesses?
-How do you deal with the stress of having a child who is frequently ill?
-How do you make time for yourself?

Sometimes, I can handle illnesses and situations that come up really well. I make adjustments. I find time to sneak in a nap while Jaycee watches a movie next to me. I make sure the laundry gets done by getting up really early and starting it. I make super easy meals or just bake frozen entrees. When times are crazy, I try to simplify my life and accomplish the high priority items first.

There are other times, when I don't handle things well. I might snap at a family member because I'm stressed and tired. I might cry over something that doesn't deem that strong of an emotional response. I do the laundry, but it stays in a pile in the living room. Yes, there are times I don't handle "it" well.

Throughout my easy or difficult days, I pray, ask God for help, read scripture, and listen to Christian music. Most of the time, it helps me stay calm and keep a better perspective. Sometimes, despite my best intentions I fall down into a negative spiral. I think, "If only those people who believe I'm so great & wonderful at handling everything could see me now! They'd know the truth."

So, how do I do it? 

The answer is simple.

I take it one day at a time. There is no magical method or strategy I use. Life is sometimes full of challenges that you have to just simply live through. I can't give up, quit my job, or not do Jaycee's medicines or doctor's appointments. Tasks have to be accomplished, medicine has to be given even if it's at 2 am, and duties need to be taken care of. I simply do things because they demand to be done. Yes, there are times I have breakdowns but I am not broken down. It is all temporary emotions and trials. I have been through challenging times before. I survived. I made it before. I'll make it again.

And, that is how I do it!
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Wednesday, February 12, 2014

A Birthday Celebration

 A few months ago back in September, our daughter spent 3 weeks in ICU on a ventilator looking like this. We didn't know if she would make. In fact, there were moments when it looked like she wasn't. We were offered the chaplain and given offers to call our family in to see her.
We prayed. We hoped. And things finally got better. 
And here is Jaycee now. Celebrating her 8th birthday on February 17th. This has been a birthday with many reasons to celebrate. We are so thankful to be celebrating her birth, her life, and her future!  Happy Birthday, sweetie!

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When Jaycee's Tonsils Came Out

Whenever someone tells me their child is getting their tonsils taken out, I cringe. If they ask, I tell them our story.

Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"

She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.

Sure enough, she had obstructive sleep apnea.

Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.

Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.

The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication. 

About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.

We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.

We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.

And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.

When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.

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Wednesday, February 5, 2014

The Real Jaycee

Get to know my amazing daughter, Jaycee!

Favorite foods: Pizza, spaghetti, cake, mashed potatoes (no gravy), chips & salsa

Favorite time of day when we are home: 1-3 pm "nap time" which consists of her laying on my bed watching movies

Least favorite time of day: mornings, especially if it's before 8 am

Favorite things to do outside: swinging, swimming, and wandering around

Thing she gets in trouble for the most: not listening to instructions (i.e. Go to the bathroom for your shower.)

Favorite color: green

Favorite television shows and movies: Barney, Winnie the Pooh, Peppa Pig, Olivia, and Madagascar

Places she likes to go: 1. School 2. Any restaurant 3. Grandma's House 4. Church

Least favorite school subject: Phonics!!

Items Jaycee has to sleep with: her 2 Olivia the pig dolls. She meticulously places them on her pillow before sliding between them when going to sleep.

Item Jaycee can't live without: a television

Things Jaycee is obsessive-compulsive about: 1. the placement of her Olivia dolls at night 2. her post-dinner night routine 3. Where she stands in the morning to get dressed (in the hallway right in front of the steps)

3 Chores Jaycee does at home: 1. Setting the table for meals 2. Putting her dirty clothes in the hamper 3. Putting her dishes in the dishwasher

Things that scare Jaycee: Animals that get too close to her, walking into the emergency room at the Children's hospital, darkness in a public place (like a movie theater), Generally people dressed up in costumes

The best things about Jaycee: She's loving. She has a tender heart. She's happy even when she's really sick. She almost never has a "bad" day. She gives great hugs.

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