Wednesday, May 27, 2015

Jaycee: No Longer A Scaredy Cat

I knew Jaycee was scared of dogs. Anytime we arrive at some one's house with a dog, Jaycee will climb to the back of my van and refuse to come out.

But then I discovered through a stray cat that Jaycee also has a deep fear of cats.

Need proof?

This is a picture of Jaycee last fall running for her life because the cat is near her. The black cat is a blur on the wood right behind her.

When the cat would innocently approach Jaycee, she would yell "Mama!!" and quickly move. I was shocked to learn that anyone could be so afraid of a small cat.

My son, who always wanted a pet, was glad the cat showed up at our house and was eager to take care of her. He even picked out a name, Rocket.

When I saw Jaycee's fear, it seemed it would be best to keep the cat around and desensitize her. It also worked to keep Jaycee inside the house as she tries to escape sometimes. One time when I was doing laundry in the basement, Jaycee managed to leave the house without me knowing. But, as I was climbing the steps back upstairs I saw Jaycee running through the door because the cat was outside. It was my security kitty for Jaycee. It was working out well for me.

Eventually, Jaycee got brave enough to occasionally pet Rocket. She also started to help feed the cat. This was a good chore for Jaycee.

A few months after Rocket arrived, a couple of male cats suddenly showed up at the house and you can guess the rest. As soon as the kittens were born, we involved Jaycee, talking about them and showing them to her. As soon as their eyes were open, we had Jaycee pet them. We wanted her to be totally comfortable with them. And, it seemed to work. She was cautious but interested.

The kittens are now 9 weeks old, and they have a good friend in Jaycee.

Jaycee has made a huge transformation. I'm so glad she's no longer scared of cats. Maybe one day she will learn to love dogs. But I hope a stray dog doesn't show up at my house!

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Tuesday, May 19, 2015

Why Jaycee Can Finally Do Karaoke

I admit it. I sing in the car. When the kids are with me or when I'm alone, I sing. I can't help it. I sing Jamie Grace, Jesus Culture, Toby Mac, and even Frozen. Elijah has joined in now making my performances a duo.

And then there's poor Jaycee. She loves music. She always has. Jaycee's role in our group is the dancer. She sways and rocks and claps along to the music. Because of her limited verbal speech, she couldn't sing along.

Sometimes, I felt bad. I wished she could sing. I know she knows all the words of songs we listen to over and over. I know she loves God and dances when we listen to worship music. How nice would it be to hear her sing?

Then it happened. At the beginning of the year, I made a playlist of about 10 songs on the house IPOD for Jaycee. There were some songs from Frozen, the Little Mermaid, and Sofia the First. I originally made the playlist for Jaycee's princess party but it became a daily dance party in the kitchen for us. Jaycee listened to these songs over and over and over.

I started to notice that Jaycee was vocalizing a few sounds to the song. Over time, she started to make more sounds and then a few more. Then, it became obvious--She was singing!!

For the last several months, she is vocalizing more and more to songs. It makes sense that the small selection of songs I started with coupled with lots of repetition resulted in her being able to sing. Repetition is extremely important with childhood apraxia of speech.

Let me be clear, Jaycee is not clearly saying all or any words in the songs. She mainly makes vowel sounds and some consonant sounds. For example, these are words followed by her pronunciation: blue (--ue), rabbit (it), princess ("ss"), go (oh), bye (-ye).

Some of her best songs that she sings are: Let it Go from Frozen, Do You Want to Build A Snowman also from Frozen, I'm Not Ready to Be a Princess from Sofia, and Blue Ribbon Bunny from Sofia.

My solo career is over and my duo is now a trio! And I love it! Bring on the karaoke!!

The princesses who inspired Jaycee's birthday party, which launched her singing career.

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Wednesday, May 13, 2015

Life After a Near Miss

About 1.5 years ago, Jaycee was fighting for her life.

It started in September 2013. (I blogged during that time, so if you want to know what I was thinking and experiencing, look up those dates on here.) I took Jaycee to the emergency room for breathing difficulties. She had already been admitted in June, July, and August that year already for breathing issues. So, Jaycee was on a bad streak. The emergency room led to the Pediatric Intensive Care Unit (PICU).

First, she was diagnosed with rhinovirus, which is basically a cold virus, and pneumonia requiring oxygen support. Then without warning, her blood pressure dropped. That was beginning of a 4 week nightmare for us. Over time, we learned that septic shock, acute respiratory distress syndrome (ARDS), and a cyst in her lung all contributed to her critical condition.

Jaycee spent three weeks on a ventilator which also meant she was sedated during that time. There were brief moments when Jaycee came to, but for weeks we watched her sleep. She was fed through a NG tube. Therapists came to move her arms and legs to help keep some muscle tone while she slept.

Things were touchy for weeks. Her blood pressure would be too low; other times it would be too high. Her oxygen saturations and amount of ventilator support was changing often.

There were many scary moments. Moments that caused me cry uncontrollably in front of other parents in  hospital hallways or in the family lounges, which is something I can normally hold inside until I'm alone in a hotel room or bathroom. The moment the doctors gave me the "we are doing our best but she may not make it" speech, offering a clergy and to call family in for us will stay with me forever.

Have I made the point that it was a bad situation?

But Jaycee miraculously recovered, and it was so amazing. We felt our prayers were answered because we did pray and pray for her to recover.

Jaycee left the hospital without any oxygen support but on a lot of medications and with extremely weakened muscles. Jaycee came home wheelchair bound unable to sit up unsupported let alone walk. My husband and a few friends built a temporary wheelchair ramp on to the house. Due to her weakness, Jaycee slept with her mattress on the floor since she couldn't get into her bed, had to have sponge baths, couldn't attend school full time for a few months, and did a couple of months of outpatient rehabilitation. The recovery was a family effort, and it did take almost 10 months for Jaycee to fully recover and get every little skill back.

Having a child nearly die changes your life and attitude as a mother. It is a wake up call as you realize that there is no guarantee for the future. As a result, I have changed. How can you go through something like that and not be changed?

Here's some things about myself that have changed since Jaycee's near miss:

  • Saturdays are more relaxing. I always felt bad about allowing Jaycee watch movies all day (her favorite activity), so I made sure Jaycee painted or played with play-doh instead. I ruined her poor Saturday by making her do kid activities that she liked but didn't love. Now, I ask her if she wants to do it. If she says no, then I don't make her do it. I let her do what she wants which usually involves hours of movies.
  • I like to make strong memories. It's not that I didn't try before but I'm more conscious of some things. If an opportunity comes up, my husband and I consider how quickly it will come up again and how enjoyable it will be for Jaycee. Like, we made sure Jaycee saw the ocean when we were on her Make-A-Wish trip. We purchased a camper last year in hopes that we can start to make new family memories too.
  • There's just some things I don't care about anymore. I don't care how many sight words Jaycee knows or how far she can count. Don't get me wrong, I totally celebrate when she learns something new in school. But I don't sweat it anymore if she can't learn something. Jaycee's health and happiness are way more of a concern of mine than her educational status. (Sorry teachers!)
  • I have to take more time out for myself. Since Jaycee's illness, twice daily airway clearance was added. Then more daily breathing treatments were added. Shoe orthotics were needed due to her muscle tone change affecting her feet. Then weekly bleach baths were necessary to combat a staph infection that will most likely never go away. The number of specialists Jaycee sees has increased by three, which means more trips to doctors. You get the idea; her care needs have always been high but the list has grown longer since that major illness. This means I really have to help myself. If I'm tired, I try to find a way to get extra rest. If Jaycee is at school, I try to carve out a few minutes of time at home with no chores for me to relax. Honestly, relaxing is hard for me when I have so many responsibilities but it's necessary for me to stay on top of everything.   

There are other things have happened as a result of her near miss. We felt strongly about getting Jaycee baptized, which happened last fall. We took in a stray cat to allow the kids to have their first pet. That cat had kittens allowing us to see Jaycee experience that too.

Each day with Jaycee feels like a gift. We feel so fortunate that God helped her pull through that illness and that she is still here being a part of our family!

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Tuesday, May 5, 2015

When Jaycee Became Like Me

My first conversation with Jaycee's NICU doctor damaged me for years. When he told me he suspected Down syndrome, he pointed out everything "different" on her body. He bluntly said while pointing to my husband and I, "She won't look like your baby pictures or your baby pictures. She has Down syndrome; she won't look like you."

That is when I made my first mistake as a parent. I listened to the doctor and believed his words. After that conversation, I believed she didn't look like me. I believed we were very, very different. When people commented on how she looked like me, I thought they were just trying to be nice. It upset me because my mind flashed back to the doctor who made me feel so disconnected to my own daughter. It probably seems silly to most people but I was convinced that the extra chromosome made Jaycee more unlike me than like me based upon that very first conversation about her genetic condition.

Then it happened one day....When Jaycee was a toddler, I was fixing her hair when I noticed she had a mole in her hair line in the exact place as me. Wow! That mole changed my entire view of Jaycee. She was like me! I realized that Jaycee does have extra genetic information but my husband and I contributed it. I let go of those tainted words of the doctor and looked at Jaycee as someone who could be a lot like me.

As proof, here are the some ways Jaycee and I are alike:
  • We both hate dogs. Really, we aren't into animals at all but occasionally we will pet one if it's cute enough.
  • We would rather be inside with air conditioning than outside in fresh air.
  • We both love to watch Netflix laying in bed with the fan on. (She likes the fan on high but I like it on low.)
  • We both love to dance and sing in the car.
  • We are not morning people! We are both borderline grumpy in the morning. We'd be much, much perkier if our day could start at 8 am, which rarely ever happens.
  • We can eat dessert anytime of day if needed.
  • We both get very excited when we see a Disney princess in person.
  • We are both very scheduled, routine people. We don't like spontaneous activities!
  • We both sweat with minimal physical exertion.
  • And I guess we both look a little bit alike too!
The morale of this story?
Don't believe everything you are told about your child.
Even if your child has a genetic condition, they will still be like you.
Sometimes a small thing (like a mole) can make all the difference!


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