Posts Tagged family

A Miracle Every Day

February 18th, 2011 | Author: Katelyn Turner

For most 5-year-olds, celebrating a birthday is just one in a long line of happy, celebratory days. For Justin Truett, celebrating his fifth birthday in November 2010 was really nothing short of a miracle.

Justin has congenital CMV, which comes with the following challenges: cerebral palsy, profound brain damage and SUID (Sudden Unexplained Seizure Death), to name a few.

His mother Desiree, an Alpha, and husband Timothy adopted Justin in 2007. When they adopted him, Justin weighed only 14 pounds.

“Justin was 1, almost 2, and he couldn’t hold his head up. We were told he was blind and deaf and didn’t understand anything that was going on,” Desiree says. “So we focused on taking care of his basic needs. Long story short, he became a permanent placement [in our family].”

Desiree and Timothy married in 2006, each with a child from a previous marriage. They both knew they wanted a lot of kids, and while Desiree was expecting her first child, they began looking into foster care and adoption and found out about children, like Justin, who were considered “un-adoptable” because of their increased needs, and because they weren’t expected to live long lives.

“We focused on a girl named Jamie that was on this list. She was blind, and had 15 failed placements by the age of five. We really wanted to adopt her, and it took two years from the time we found her to the time she actually moved in,” Desiree says. “While working on Jamie, we got a call about two little boys that needed placement for a week or two, one was special needs and one wasn’t.”

One of these boys was Justin.

Although previously told Justin was deaf and blind, Desiree says after six weeks of regular food and a lot of stimulation, Justin started to make eye contact.

“[When we got him] he was in such a chronic state of starvation, that everything had shut down. But because he was so disabled, doctors told us he would only live to be three. At that time he was almost two. His third birthday was a huge celebration for us, and right after that, his adoption went through,” Desiree says. “He is doing great. All of his organs are doing perfect and right now his risks are pneumonia and seizures.”

Justin’s seizures are a major concern for the Truett’s. They can range from 1-2 a week up to 100 a day.

Desiree and Timothy with children (in back) Dakota, 9 Jamie, 8, (in front) Kaylee, 7, Justin, 5 and Abigail, 4.

“One day, out of the blue I walked past his room when he was about four-and-a-half, and he was completely unconscious, with one of his legs kicked to the right. It wasn’t anything like a normal seizure, and it wasn’t stopping, either,” Desiree says.

They took Justin to the ICU, and he was comatose for three days.

“He did wake up, and I was afraid he wouldn’t be Justin anymore. He has an amazing personality and the funniest sense of humor, so the first thing I did was tell him inside jokes we have, and he smiled, and I knew he was there,” Desiree says. “But he was paralyzed on his entire right side. That took over six weeks to come back through a lot of physical therapy.”

What concerned Desiree and Timothy about this episode was they were told even machines wouldn’t be able to detect the seizure Justin had. That’s when they were told about seizure alert dogs.

An assistance dog would make sure Justin got the help he needed at night and if Desiree and Timothy weren’t in sight. The Truetts are partnering with 4 Paws for Ability to acquire a dog that would allow Justin the security he needs to enjoy his life to the fullest.

The Truetts have raised the money needed to acquire this dog for Justin, and are now helping another family raise money for their son, Alex.

Desiree, who in addition to Jamie and Justin has three children with her husband, is a ZZ Alpha and has to take time to take care of herself and her condition. She was diagnosed in 2008, around the time she and husband Timothy were adopting a sixth child. They decided to stop the adoption and Desiree became very involved in the Alpha-1 community in her town of Maricopa, Arizona.

Desiree says it’s a true team effort with Timothy, who is a Police Sergeant.

“We get to witness a miracle every day. Every single day, Jamie or Justin do something medically impossible. And it’s so fulfilling and I feel so honored that I’ve been chosen for this challenge,” Desiree says. “It helps with my Alpha status because it gives me no time to dwell on it. Nobody in the community looks at me as somebody who’s struggling with an illness, more, they come to talk to me about how to get into adoption.”

COPD and Stubbornness

February 11th, 2011 | Author: Katelyn Turner

This blog post was written by Joanna Murray, who lost her mother to COPD last year.

When you talk about my mom and COPD, the first thing that comes to mind for me is her stubbornness.  Sometimes we forget how much control we have in our own lives.  All those little things tend to be a huge component of who we are.  As the years went by and my mom had been diagnosed with COPD – and although our family knew – my Mom only told us what she wanted us to know. I think as a child we don’t want to think about a parent being sick and we only ask what we really want to know.  My mom took such good care of me, I thought, “Why would I second-guess that she would not take good care of herself?”

Growing up, my Mom was always in control and always made the decisions.  Like most kids, I never questioned her.  She was strong-willed, controlling, and the older she got the more control she sought- sometimes to the point of annoyance.  My brother and sisters and I learned to tolerate it.  My mom was her own person and she did not have a problem letting everyone know that.

The last few years of her life were the years that stood out for me the most.  I had grown up and I came to accept her and all her quirks.  I realized for the first time she was her own person and she had always lived her life by her own specific desires.  Sometimes I sat shaking my head in disbelief. She would look right at me and say, “Because I can and do not question me.”

Joanna and her mother

The last years of her life – I remember as if it was yesterday – it became very difficult.  She would clean my house or take care of my kids to be helpful.  I started noticing her slowing down and the difficulties in her breathing started to happen more frequently.   Every time I started to question her, she would brush my concerns aside.  As time passed, it became more of a challenge for her to climb up my stairs.  Whenever we went shopping, she would need to push the shopping cart and stop periodically to catch her breath.  She needed to be leaning on something so she could she gasp for her breath.

I always saw my mom as this tough, old woman who at times could be such a bear to be around.  When she was with my kids I saw her for who she truly was.  She had such a way with my children she touched their hearts.  In those last years, I had gained such a respect for her.

When she moved in with me that last month of her life I didn’t know what to expect, and didn’t want to lose what I had recently built with her.  It took so long for both us to have this new relationship.  She saw me in a different light and I saw her differently as well.  That last month was so hard at times.  The first few weeks she fought me on everything.

It’s hard to know what exactly was going through her mind during this time, but I know that we became very close and I cherished the new friendship that we had forged. All I can do is speak for myself, and I can say as a grandmother goes, she was amazing.  My children and I miss that special time they shared with her.

COPDer Penny Hart Thankful For Family, Donor

August 27th, 2010 | Author: Katelyn Turner

This blog post was written by Penny Hart, a COPDer living in Oxfordshire in the UK. Read more…

Sandra Cook, a brave and admirable COPDer

June 23rd, 2010 | Author: COPD

COPDer Sandra Cook has been through many storms but that hasn’t stopped her from being the rock of her family. Read more…

The Boston Health Expo is finally here!

June 9th, 2010 | Author: COPD

The 7News and Partners Healthcare Health and Fitness Expo is coming up soon. Read more…

Honoring her Mother

April 30th, 2010 | Author: Katelyn Turner

This was written by Emma Laffey, 37, of Yorkshire, England. Her mother Angela passed away Read more…