A Season of Thankful Awareness

In a recent post on A Sweet Life, “Neonatal Monogenic Diabetes: Cameron Lundfelt’s Story,” Cameron’s mom describes the overwhelming standard of care given to young children with garden variety T1D, “I was always concerned about when did he last eatWhat are his sugar levels?  When is the next time he has to have a shot?  Did I give him too much insulin at the last meal? Did I not give him enough insulin? I lay awake at night wondering how I could have done better at keeping his sugars ‘within range.'” Through Cameron’s mom’s diligence, it was later discovered that Cameron has a rare form of diabetes caused by a genetic mutation that can be controlled with oral medication, but all parents of children with diabetes know the fears and worries she describes.

November is almost over, so Diabetes Awareness Month is coming to a close, but the end of the year holidays are starting. Diabetes Awareness Month juxtaposed to the holiday season means awareness morphs back into silent difficulties for so many families living with T1D.

Here we are, at the end of November, taking a deep breath and sharing the life we live in two hour increments during each day and night of all twelve months.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

As we enter the holiday season, we’re glad for:

  1. insulin
  2. Fredrick Banting and Charles Best, discoverers of insulin
  3. Dexcom, a continuous glucose monitor
  4. batteries that power insulin pumps
  5. insulin pumps
  6. the Diabetes Online Community
  7. Children with Diabetes, Friends for Life Conference
  8. Henry’s dedicated and caring preschool teachers
  9. Ed Damiano, Denise Faustman, JDRF
  10. Henry’s sense of humor

And after all the chaos, illness, and destruction, the last thing to fly out of Pandora’s box:

The last thing to fly out of Pandora's box. #handsofhope #projectbluenovember

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Caretaking for Two

It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its second guest blog, an interview with a parent caregiver, Angie Ashe, mother to Elliot and Fiona. Elliot has Arthrogryposis and Fiona has Amniotic Band Syndrome.

Elliot & Fiona

Elliot & Fiona

How would you describe your children’s conditions? 

When my first daughter Elliot was born, her physical disability was a delivery room surprise. When we adopted our younger daughter Fiona two years later, her physical disability was completely planned. Because of our experience with Elliot, my husband and I deliberately set out to find a daughter who could benefit from all the great specialists we met along the way. Elliot has Arthrogryposis, which means that her limbs did not develop properly in utero. She has very limited muscle and range of motion in her limbs. She also happens to be non-verbal. Fiona has Amniotic Band Syndrome, which resulted in an underdeveloped foot that had to be amputated and missing digits. She also happens to talk non-stop. Neither girls require any medication or special diets. Their needs are mostly physical.

What care for your children is required, and how do you and your partner divide this care?

As their caretaker, I do a lot of heavy lifting. I don’t mean that metaphorically. I lift a 45 pound 5-year-old (who often fights being carried if it means she’s going to bed or the bath), a 35 pound four-year-old, and a wheelchair in and out of my trunk all the time. It took some getting used to, but I have a pretty strong back and no need for a gym membership. Most parents get the privilege of fighting with their kids, telling them they’re too old to be carried. I get the privilege of helping my five-year-old walk around in her leg braces, a feat we were never sure she’d accomplish. I’ll take all the work involved in helping her up and down the structure at the playground just to hear her giggle when she goes down the slide.

slide

My husband Rob and I both work in our family. He works full-time as a Television Editor. I work as a Children’s Librarian, but I only work part-time for the kids. Because of my schedule, I am the parent who takes the girls to every doctor and hospital appointment. When your children are as complicated as my children, that equals a lot of appointments. There’s the lower orthopedic surgeon, the upper orthopedic surgeon, the cardiologist, the neurologist, the neurosurgeon, the urologist, the ophthalmologist, the developmental pediatrician, and the orthotist. Let’s not forget the offices we’ve visited just for fun, like the audiologist and the optometrist. Plus, the offices all kids have to go to, like the pediatrician and dentist. In between all this, there have been many visits to the hospital’s hand clinic for nighttime splints to be made and adjusted and the casting clinic for serial casting of the legs. Plus, there are the many, many hours spent in OT, PT, speech, social skills therapy, and behavioral therapy.

Having listed all these, don’t think for a second that I dread any of this. I actually like taking my girls to their appointments. I show up early with snacks and games for everyone. I’m that mom. If this is going to be their life, it’s my duty as their caregiver to make it fun. My kids know everyone wherever we go. The staff at all the offices are their buddies. My girls may be scared of the blood pressure cuff, but they are not scared of the nurse holding it. My job is to make sure that they know they are surrounded by friends at all these appointments. I like to think that I am surrounded by friends too. Since I have no time to just hang out with friends, I have made many of the people who work with my daughters my friends over the years.

Just because my husband misses most of their appointments does not at all mean that he is hands-off. My luxury in our family is that I do not have to deal with insurance and bills. I have never called our insurance, ever. I’m quite proud of that. It’s freeing to show up at all these appointments and never worry about how they are going to be dealt with through insurance. I’ve had times where an employee at the front desk has asked me an insurance question, and I just smile and declare that I haven’t a clue. I have to reserve so much of my brain power for all their medical info that I rather enjoy saving no space for insurance mumbo jumbo. I believe my husband likes having an important role in our medical journeys as well. I completely trust him to do all this, and he does a spectacular job. I pride myself on being an intelligent woman, but there is a beauty in being blissfully ignorant when it comes to all the back and forth between insurance. For the sake of honesty, I’ll admit that I’ve written a few letters of appeal, but it’s more fun to believe that I am free of all insurance worry.

road

Describe a caregiver technique you and your partner do differently.

One major way that my husband differs from me is that he is a homebody, and I don’t sit still well. I like to take the girls to the gym or park, if we are bored at home. He, on the other hand, never gets bored at home. I think both qualities are good to have in a family. While I can get anxious that Elliot is not getting enough exercise, I can see that bumming around the house is something that she needs sometimes. She works a lot in therapy and school, and he helps remind me that it is not going to hurt her to do nothing for a little while.

There is one area in Elliot’s life that I have never trusted my husband: her splints. Elliot got her first pair of wrist splints in the NICU. They are meant to hold her wrists in an ideal position when she slept. When she was smaller, the splints were actually putting a little pressure on her wrists, trying to help them move into a better spot. Now, they just maintain. She’s achieved a lot with splinting. If they are strapped on too tight, they can create pressure sores. If they are too loose, they will offer little benefit. For five years, I have tiptoed into Elliot’s room after she’s gone to sleep and quietly strapped each splint on. I acknowledge this is my own form of craziness, and, therefore, do not resent my husband for knowing nothing about her splints.

One big thing that I don’t think a lot of people realize about my life as my daughters’ caretaker is that it involves a lot of medical decision-making. You see, there is not one pattern to follow for any of this. There are tons of surgeries out there and tons of opinions on all of them. Every single choice I have made on my daughter’s behalf I have heard someone talk negatively about it in an online support group. The boots with the bar that helped my daughter’s club feet, those are awful, don’t work at all, should never be used on a child with my daughter’s condition. I thank goodness all the time that I have excellent research skills as a librarian and know better than to believe everything I read online. Out of the plethora of treatments, we have to pick some (or none, as some choose to do), and we have to do our best to be happy with our decisions. Luckily, my husband and I make a great team when it comes to these decisions. We’ve talked about these procedures endlessly, and we meet in the same place when it comes to our daughters’ care.

Elliot started kindergarten this fall, and I can happily say that I handed off some of my caretaker duties to her teacher and aides at school. She is part of an amazing special ed program in our city, and her transition to longer school days could not have happened at a better time. Five years of early interventions is a lot. Five years of working my butt off. Adding Fiona to the mix almost two years ago sped our household up even more. I was honestly exhausted. Right now, I am grateful that I can lay off Elliot a bit and let her just relax when she comes home from school. I still have a hard time leaving her be, but I’m getting better at it. I stretched her 6 times a day for years. I bribed her with Goldfish to take tiny steps through the aisles of Target for years. Now, I let her sit and play iPad. Nothing else. It’s nice. She’s learning to communicate with us through that iPad now too, so don’t knock the iPad time.

I’m going to be my daughters’ caretaker for life. Fiona will leave our nest one day, but Elliot likely never will. My vision of my future has changed over the years, but it’s not a bad thing. Elliot loves the ocean. She might be my key to getting that little retirement house at the beach that I always dreamed of. My job as her caretaker now is to make sure that she grows up to be someone I will love spending every day with. Elliot, Rob, and I will rock in our rocking chairs, watching the ocean, waiting for Fiona to visit and tell us of all her adventures. That doesn’t sound bad at all.

family

The Ashe Family

2015 Type 1 Diabetes Index

November 14th is World Diabetes Day. November 14th marks the 618th day our family has been living with type 1 diabetes. To be sure, it’s difficult to measure or assess the emotional toll of living with diabetes, but there are ways we can measure the impact of living with type 1 diabetes. Here’s a look at Henry’s 2015 type 1 diabetes index. At the end of the blog, there’s a video where some of these numbers are juxtaposed to our everyday life, creating just a glimpse into the emotional side of living with type 1 diabetes.

Number of days Henry’s been living with type 1 diabetes: 618

Number of vials of insulin Henry’s used since diagnosis: 26

Estimated cost of 100 units of recombinant insulin without insurance coverage: $215

Range of a normal blood glucose: 80-120

Number of people living in the U.S. with type 1: 1,250,000

Estimated number of finger pokes Henry has had to check his blood glucose: 7,400

Number of insulin pump site changes Henry has had: 280

Estimated cost of an insulin pump without insurance: $7,000

Estimated yearly cost of pump supplies: $1,500

Chance of developing T1D if no relatives have the disease: .4%

Chance of developing T1D if a first degree relative has T1D: 10-20%

Average number of years T1D takes off of a male and female life (respectively): 11, 13

Number of site changes Henry’s had for his CGM (continuos glucose monitor): 83

Estimated yearly costs of a CGM without insurance: $2,800

Number diabetes related check-ups Henry’s had: 9

Number of miles on the road to Henry’s diabetes appointments: 1,786

Range of non-diabetic hemoglobin A1C: 4-5.6

Range of Henry’s hemoglobin A1C’s since diagnosis: 7.5, 8.1, 7.2, 7.3, 7.0, 7.5, 7.1

Chance someone will die of T1D within 25 years of diagnosis: 7%

Number of Henry’s hospitalizations and emergency room visits related to T1D: 5

Number of nights of uninterrupted sleep in Henry’s house since diagnosis: 0

Parent Caregivers: Kevin & Rebecca

It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its first guest blog, an interview with parent caregivers, Kevin and Rebecca who are parents to Everett. Everett was born at 33 weeks, and a few hours after his birth, Kevin and Rebecca learned Everett has Down syndrome. Infants and children with Down syndrome will experience delayed milestones, like rolling over, talking, standing up, and walking.

Here’s a Facebook status that Rebecca posted last week: I was multitasking during Everett’s PT visit, and while the physical therapist was here, I was attempting to cook dinner, but Everett was using his walker, and I got so excited. Kevin and the girls got home right in time to see the firetrucks pull up. Good to know that the fire alarm works. No fire, lots of smoke, but Everett stood up on his own. We ate leftovers to celebrate.

What’s a tame little kitchen fire when your child stands up for the first time?

Everett standing up for the first time in physical therapy.

Everett standing up with the help of his walker.

How would you describe your child’s condition? 

Rebecca: My child has Down syndrome. Down syndrome doesn’t have him. It is just part of him and doesn’t define him. It is part of his person. Because of the additional 3rd copy of the 21st chromosome there are certain (daily) things that we need to be mindful of as far as health, learning, or daily living. Everett is smiling, has red hair, has DS, and loves to play with cars.

What care for your child is required, and how do you and your partner divide this care?

Rebecca: Because I was off work for almost two years the scheduling primarily falls on my shoulders. When I returned to work, I kept that responsibility since my husband works a second job to supplement our income. I make his weekly therapy appointments (averaging around 4 appointments a week). Friday is therapy free, so Friday is fun day. About once a month I try to accomplish a bigger long term goal involving support groups, advocacy, funding issues, or later life care.

What impact has being a caregiver had on your relationship? 

Kevin: It has not made it harder. It is the mindset we have chosen. It is just giving extra opportunities to Everett. In no way has it weakened our marriage.

How has being a caregiver changed your relationship?  

Rebecca: It reinforces the fact that we are a team.

Describe a caregiver technique you and your partner do differently.  

Rebecca: Kevin will carve out time and work on a skill that a therapist is asking us to do. It is direct instruction. I will normally have the kids around me and we all do it together and I just try to integrate it into our play.

In twenty words or less, describe your partner’s caregiving superpower.

Rebecca: Kevin’s superpower is his love for his children, from our first baby to our fourth baby.

Kevin: Rebecca’s superpower is the ability to keep everything going.

Tom Hanks Sausage Links! a.k.a.: Co-Parenting Children with T1D

Presenting, in comic strip form, texts with my husband and fellow co-caregiver, wherein I just text letters to get his attention about a rapidly dropping low blood sugar, and autocorrect adds title inspiration: hanks link.

Tom Hanks

Parenting a young child with diabetes is a mixture of all-the-time-low-level-anxiety and anger/worry/warrior/defeated super vigilance, so it’s better to have two capable people on the front lines. My husband and I have a complementary approach to care; I’m the letter of the law and he’s the spirit of the law, and for our son to balance the burden of T1D across his lifetime, he’ll have to be both.

One random morning in March almost two years ago, my husband and I were learning to test each other’s glucose, but now we’ve tested Henry’s glucose over 6,000 times (20 months X 10 or more times a day). Every two days we change a site for his insulin pump and every seven days we insert a CGM (constant glucose monitor). About every 45 minutes, one of us looks at our phones to see where his blood glucose is, and every time we ever give him anything to eat or drink for.the.rest.of.his.life, we calculate the carbs and apply insulin or sugar.

I’d do this for Henry for the rest of his life if I could, but I know that living a life of independence, freedom, and self-sufficiently means I’ll teach Henry to care for his diabetes little by little, and that crushes me, because right now my husband and I are working really hard to replicate a pancreas, and it takes sleep,

my nightly alarms

my nightly alarms

brain-space, sacrifice, hauling gear, literal hours from our day, money, and focus. Type 1 diabetes is a heavy burden to share, but it seems insurmountable to carry alone.

November is both Diabetes Awareness Month and National Family Caregivers Month. Before my son was diagnosed with diabetes, I thought caregiving was typically something the younger did for the old. In it’s more raw version, caregiving reverses its normal evolution and becomes something the older does for the younger, either for a lifetime or a portion of a lifetime. Now that we’re parents who are also caregivers, I see how many other parents share this joint occupation, so this November, Semisweet will be highlighting stories of parents who are caregivers.

To kick off the discussion, please check out this great video, “I Am the Pancreas,” by Rick Suvalle, dad of two T1D kids. He followed his son and daughter around for a few days with his iPhone to show what caring for T1D kids is like. To the parents of young T1D kids: we are the pancreas!

Diabetes Awareness Month Begins!

About two years ago, I was celebrating a lack-luster birthday. My son had been lethargic for a couple of weeks. He was peeing through diapers, drinking a lot, and he was very cranky. After bedtime, a friend stopped by our house for a birthday toast. What should have been a pleasant conversation devolved into me telling her how I’d scheduled an appointment for my son the next morning because I thought he had diabetes. Earlier in the day, my mother-in-law called to wish me happy birthday, and I quickly switched the topic to Henry’s strange symptoms and my suspicions of type1 diabetes. I look back at these moments and am thankful I acted so quickly; however, now I realize how little we knew about living with type 1 diabetes. Twelve hours after my friend left, my husband and I were in the car with our three-year-old son on the way to the major children’s hospital in our state.

Now, I’m really aware about diabetes, but here’s the paradox about awareness: you can see outlines of what you don’t know. I don’t know how Henry is going to handle T1D in school. I don’t know how his teachers will handle managing diabetes in a classroom as we change grades from year to year. I know Henry can and will rebel against T1D in his teen years, and I don’t know how to walk that with him yet. I wonder how T1D will affect his major friendships and relationships, and potential children, who would have about a 10-20% chance of developing T1D.

November is Diabetes Awareness Month, and November 14 is World Diabetes Day, which is celebrated on the 14th because it’s William Banting’s birthday. Banting and Best co-discovered insulin in 1921. Diabetes Mine lists the many social media campaigns planned for this November. Semisweet is planning some guest blogs and will be participating in Project Blue November’s Instagram campaign this November. We’ll see you here and in pictures.

Now that we’re recovering from Halloween, we’re kissing diabetes goodbye.

#kissdgoodbye & Halloween via Dexcom

#kissdgoodbye & Halloween via Dexcom