Tuesday, August 23, 2011

My Baby's Diagnosis - A Mother's Journey

I met Meredith a few years back. I loved her instantly. She's one of those women that truly radiates and doesn't even realize it. Our kids are the same age and we would laughingly commiserate over potty training, nap schedules, nutrition...while we fed our vices on our girl's night out evenings, giggly over juicy girl talk. To be honest, I found the toddler years to be overwhelming. But mine was a minor adjustment compared to a lifetime's adjustment. Meredith's entry in motherhood makes me realize the strength of a mother.

Meet Meredith. Like many of you, she's definitely a She-ro. Here's her story.

Please share with us how Callen was diagnosed:
Callen was born at Skyridge Hospital, which was participating in the TEDDY (The Environmental Determinants of Diabetes in Youth) study. I gave the study permission to take some of the newborn heel stick blood sample to determine if Cal had some of the genetic markers. At ten weeks, they called to tell me that he did have the gene/series of genes that made him high risk, but that meant only a 3 - 4% chance of developing diabetes in his lifetime. We decided to participate in the study further, going into the Barbara Davis Center (at Children's Hospital) every 3 months. I was 9 months pregnant with Johnny when they called to tell me that Callen's blood sample showed the presence of two antibodies, an indicator that diabetes was present. Since it's an auto-immune disease, these antibodies attack the islet cells, which produce insulin. The study was around only a few years, so they could not tell me if the diagnosis would come in a matter of month or years. About six weeks later, with a newborn in tow, we went to the BDC for the study's regular 3 month check-up. They tested his A1C (a three month blood sugar average) and it was already in the diabetic range. The doctors came in and told us to begin testing blood glucose level twice each day (before eating in the morning and two hours after breakfast) and to call if it was above 250. They said "It won't happen over night", but sure enough, that night his bg was a 300 after dinner. We took him back in for the "Diabetes Boot Camp" the next day and he has been on insulin ever since. That was July 14, 2008.

What was your initial reaction?
Well initially, you're going through training and kick into mom mode, like "I've got this." But then we took our training home and learned quickly that it's not as formulaic as you think. Managing the highs and lows, the honeymoon period and activity, etc. is different from child to child and it's a lot of trial and error. I began to
go through a grieving period, mourning the loss of what I thought our lives would be, if that makes sense. I was angry when people asked me if he would outgrow it, or asked if I gave him too much sugar as a baby. I was saddened that my son would have to go through life being poked, dosed, not feeling well, and constantly monitored. And selfishly, I was sad for my husband and me. It was stress on our relationship and there was a point where I thought we would never again leave the house together. After about six months came the acceptance.

What were some of the challenges you faced?
At diagnosis, Callen was tested for and ultimately came up positive for Celiac disease. This is pretty common in diabetics, as the two auto-immune diseases share some genetic components. When he was still eating gluten, he frequently went low and we didn't understand why. When we changed his diet, he began absorbing food and truly showing those high numbers. The highs were very difficult for us, and there were weeks where we called the doctor 2 - 3 times to adjust dosage. I'm the type of person that would like everything to be black and white, but we had to learn to go with the flow.

When did you realize that you were going to be able to handle this?
During the first few months, Matt and I would often get upset or cry when having to finger poke Cal, or give him shots. We would get so frustrated when we couldn't get the blood on the stick to test him, and apologize profusely that we had to test him again. He would look at us like - "What's wrong with you guys?" and go on about his business. He would never give us a hard time with testing, and soon, would see us coming with the meter and just point out his finger. We knew that having him diagnosed so early was a blessing - he would never know a life without diabetes. Kids are so incredibly resilient and when he didn't make it a big deal, we started to relax and adopt the "new normal." Even today, when kids ask why Cal gets tested, or what his pump is for, he says matter-of-factly, "I have diabetes."

Callen's Wolf Pack

And this year you started your own non-profit?
Yes! This year, we started our own non-profit - Callen's Wolfpack. The first fundraiser was held in July and was a Cocktail Bowling event at Lucky Strike. We had about 85 people and raised $6,000 through tickets and a silent auction, all of which will go directly to our JDRF walk team. I am currently meeting with some other organizations to determine where else Callen's Wolfpack, Inc can help. I'm focusing on providing supplies to those parents/kiddos that have no or inadequate insurance coverage.

This year, the JDRF (Juvenile Diabetes Research Foundation) has a goal to raise $89M through its annual walk, $953K of which will come from Denver (where we live), and hopefully $8 - $10k of which will come from Callen's Wolfpack.
If you'd like to get involved, donate, join a team, or find out more, you can reach Meredith and Callen's Wolf Pack at: http://www2.jdrf.org/site/TR/Walk-CO/Chapter-RockyMountain4072?px=1325230&pg=personal&fr_id=1400.

Callen's Wolf Pack will be participating in the annual JDRF Walk in Denver on September 11th.  The walk begins at 9 a.m. at the Pepsi Center and both breakfast treats and lunch are provided.  If you aren't in Denver, the JDRF hosts many fundraisers/walks, to learn more go to http://www.jdrf.org/ to see if they're coming to a city near you.

One more question! What do you feel are the biggest misconceptions about Type 1 diabetes?

I think there are a lot of misconceptions about Type 1 diabetes because so many people live with Type 2.
* There is no cure for T1 diabetes - there is no diet change, or supplement that will make it go away. The only way to live with T1 diabetes is dependence on insulin.
* No one with T1 diabetes has or ever will "outgrow" it.

* They have yet
 to determine what environmental factors make some kids develop it while others don't.

Thanks Meredith. Good luck to Callen's Wolf Pack! We'll be cheering you on!

If you have any questions, concerns, tips...please feel free to share.


1 comment:

  1. Silvia, it was really nice of you to write about Callen and his family. I am their neighbor and Callen, Meredith, Matt and Johnny are a loving, caring family. We could not imagine not having them as neighbors. I think Callen will be a inspiration for my daughters as he is a strong kid. I am sure he gets it from Meredith, she is a great Mom. There is no question that Callen will be able to do anything in his life as I think Meredith will be a role model with all her wonderful efforts to make Callens Wolf pack a huge success and help so many others in similar situations. If you can, please tell others to support Callens Wolf Pack, it will make such a difference for so many.

    The Woody's