The Tale of Two Preemies: Research

Tuesday, February 4, 2014

Research

Oops, so it's been almost 5 months since my last post. I may update you before the next 5 months, but today is something I need to blog about. I know I've mentioned before that my mom has FTD, frontal temporal dementia. My Dad has been taking her to research appointments at Large Hospital and has even consented to donate her brain when she is gone. The problem is that they can do all the research they want after a person has been diagnosed, but it does them little good if they don't know what causes it or how it starts. Large Hospital has been hoping to start a study on those with a family history, but haven't had the funding. Enter my sister and me. Today the call came in. They have funding.

I am scared to death.

Of course, I consented and have appointments set. It's nothing difficult on my part. Memory tests, scans, blood draw. The scary part is that I don't want to know. Being in research means they will run tests every year and if we have it, it could lead to an earlier diagnosis. I don't want to know. I do not want to know which road I will travel down until I am traveling it. It's scary seeing my mom and wondering if that will become me. I'm not sure I can handle actually knowing.

So I do this for my kids and my grandkids. If they can learn something from me. If they can find a way to stop it, stall it, or treat it because of this research, then it is worth knowing. I pray the data they collect from me and my sister will be worthless, because I pray this disease ends with my mom. If it doesn't, then I pray this research gives my kids a better future.

But, I'm still scared to death.

2 comments:

Kristi said...: OH, wow! What an opportunity. Scary and hopeful for your family's future.; 2/05/2014 4:18 PM
jessica said...: Wow that is tough Beck. I commend you for doing it and I hope it is all "worthless".; 2/05/2014 4:43 PM

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Cole's Story

Cole was born at 30 weeks 3 days, much to our surprise, in 2006. I went in to the hospital because I wasn't feeling well and was afraid I'd get dehydrated. I ended up being air lifted to a larger hospital where Cole was born 24 hours later. He weighed in at 4 lbs. 2 oz. and was 17" long. He had some developmental delays, mostly due to acid reflux. He also had positional plagiocephaly and was in a remolding helmet for 6 weeks. At 14 months he underwent a cardiac catheter procedure to close his PDA. At 25 months he tripped getting out of his kiddie pool and broke his femur. He was in a cast from his hips to his toes for 4 long weeks. He also broke his shoulder at age 5 1/2. His latest medical drama has been a cyst in his left ear. He's had his adenoids removed and another surgery to remove the cyst. He'll have a second surgery in August. He's been through the ringer, but you'd never know it. He just rolls with the punches. He's 100% farm boy. He wants to know how everything works and why. He loves the farm. Farming is definitely in his blood.

Tate's Story

Tate was born at 34 weeks 2 days in 2008. Since I had a previous premature delivery, I was on high alert for another one. It didn't help. We had ultrasound after ultrasound and everything looked great. Tate, however, was not patient. I was admitted to the hospital with preterm labor. He held off for a couple of days, but was still born early. He weighed 5 and a half pounds and was 19" long. Fortunately he had no problems and was released from the hospital 3 days after he was born. He was born the middle child. He desperately wants to do what his big brother does, but has his own interests and wants Cole do to those with him. He's my trouble-maker, fit-thrower, and snuggle bug.