Friday, September 27, 2013

From the Toy Store to ICU

Saturday afternoon, I took my kids shopping at Toys R Us. Jaycee had a great time picking up toys, playing with them awhile, and throwing them down. It was hilarious. We had such a great time going up and down the aisle. I loved seeing what toys she was drawn to.

Then came Sunday. What started out as a little sickness turned into a huge ordeal. We got her to the emergency room. She was feverish, tired, having difficulty breathing, and vomiting. In a short time, she was in the intensive care unit (ICU). In a few more hours, her monitors started going off. Her blood pressure went critically low. Before I knew it, I was sent out of the room so Jaycee could be intubated. This was a first for us.

And so this nightmare that started on Sunday has continued on until today (Friday). She's been diagnosed with pneumonia, rhinovirus, septic shock, and acute respiratory distress syndrome. Jaycee is the sickest she's ever been. She still has the breathing tube and has been sedated this entire time.

I haven't heard my little girl's sweet "mama", seen her smile, felt her kisses, or watched Barney with her. I miss her. I have cried, prayed, given her pep talks, and tried to keep it together.

Life is so precious. Every moment is a gift. You never know when life will change in an instant.
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Wednesday, September 18, 2013

"Talking" with Jaycee

When I talk to my daughter, our conversations are a little different. She's 7 years old but only speaks about 12 words or so. She signs, gestures, and makes noises to communicate a variety of things. For the past couple of years, Jaycee has also used a speech generating communication device. Her device is the Vantage Lite made by PRC. Here's are two short videos of conversations with Jaycee: 




video


video



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Wednesday, September 11, 2013

Skype & the Nonverbal Child

What do you do when your basically nonverbal child wants to use the phone?

Well, first you call up grandma and let Jaycee grunt noises into the phone. Grandma asks yes/no questions which Jaycee responds with "uh." Grandma asks questions using the couple of words she can say. "Are you with mama, Jaycee?" 

Jaycee says, "mama," if she's in the right mood to respond with a word.

As grandma talks, Jaycee listens and smiles. Grandma can't see Jaycee's expressions. She hears silence. Finally, grandma says, "Is she still there?"

So, that is how the past few years of phone calls have went for Jaycee.

And this year, I discovered Skype and video calls have changed our life.

Jaycee lights up when she can hear and see her grandma. Jaycee can talk to grandma in sign, using her communication device, or words. Grandma can ask a variety of questions now that other options are available with the video. Grandma can see her facial expressions. Grandma can see if Jaycee leaves and doesn't have to ask if she's still in the conversation. The conversation isn't so one sided now.

I initially got Skype because my husband and I took a trip earlier this year. I couldn't go 5 days without seeing my kids, so Skype seemed like a great idea. But since then, I've used Skype when Jaycee says she misses her grandma. We used Skype when she was in the hospital for a week this summer. She was able to see her cousins, grandma, and brother. It was nice because her brother could see us in the hospital too through Skype. She was able to Skype with her teacher while in the hospital too!

At first, I got Skype for me, so I could see my kids. But, Skype has opened up so many doors for Jaycee. I think Skype is essential for a child who doesn't have words for the primary communication mode.
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Thursday, September 5, 2013

Overcoming

Sometimes you see something at the right moment and you feel as if many things in the world have lined up just for you.

I had a restless night as I was wrongly worrying about Jaycee. She'll been battling illnesses for weeks, and this mama is tired of seeing her little girl sick, unable to play outside, and unable to attend school. I was upset and anxious.

Then I saw the Overcomer video on GMA this morning. It was as if God was speaking to me on a morning when I was ready to quit and let fear and anxiety take over. I'm not going to quit. Watch it for yourself!

Mandisa's 'Overcomer' Music Video World Premiere: ABCNEWS.COM - The gospel star features Robin Roberts' recovery in her new video.
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