Tag Archives: T1D

Diabetes Month Photo a Day – Day 26

Day 26: Healthcare

Healthcare is important. It’s important to be involved in your healthcare decisions as well. It’s important to be honest with your physician and endocrinologist (if you have one).

Part of my daughter's amazing healthcare team.

Part of my daughter’s amazing healthcare team.

My daughter’s healthcare team is amazing. They listen to what we are actually saying and are there for us when we need them. We are blessed to have them on our healthcare team!

Diabetes Month Photo a Day – Day 25

Day 25: Wishlist

What does your wishlist for Christmas or your birthday look like?

For my daughter, it’s simple yet so complicated. Every year she wishes for the same thing as her #1 wish. A Cure for Diabetes. This year is no different, she doesn’t wish for much. And even though she knows that a cure isn’t something I can give her, she still wishes for it.

 

Cure, the #1 wish on my daughter's list every year.

Cure, the #1 wish on my daughter’s list every year.

It’s the one thing I wish I could give to her.

Diabetes Month Photo a Day – Day 24

Day 24: Cure

There is currently no cure for Type 1 Diabetes.  Although there are a LOT of ‘miracle (READ this as WACKY) cures’ out there, none of them will cure Type 1 Diabetes.

Until there is a cure, we will walk and make every step count!

Until there is a cure, we will walk and make every step count!

Some believe insulin is a cure, it’s not but it does keep my daughter and many others alive.

Each year we walk at the JDRF Walk to Cure Diabetes. This will be our 6th year walking, but our 5th year having a family team. We love the walk. It’s a great gathering of our family and friends. For my daughter it’s about being among others who know what it’s like, a feeling of belonging. It’s a huge celebration and one day we hope that we will still meet and celebrate having a cure! Until there is a cure we will raise money, walk, and educate others. We will make every step count!

Diabetes Month Photo a Day – Day 23

Day 23: Diagnosis

Ironically, today’s ‘category’ is diagnosis and today is my daughter’s diagnosis anniversary. Today we celebrate 5 years of living with Type-1 Diabetes.

Signs and symptoms of sudden onset of type 1 diabetes:

  1. weight loss
  2. increased appetite
  3. increased thirst
  4. increased urination
  5. blurry vision
  6. fatigue

From the time my daughter was born she would eat and pee constantly. When she was 3 and we were potty training, she was always going to the bathroom. She was always drinking a LOT of water. She would drink water all day and all night, she was always wanting water. She was always getting up in the middle of the night to go potty. Since these signs/symptoms were already there, nothing was ever thought of it.

My daughter was six years old, she had been sick most of November 2008. She had gone to a friends house after school one day and had been playing around with exercise equipment and somehow cut her finger, no big deal. But the small cut kept getting worse, despite the fact that she was on antibiotics for strep throat.

I remember November 3 vividly, we had dinner at our church like we always do on the first Monday of the month. One of the public health nurses, a member of the congregation and a friend, was at dinner that night. My daughter only had a few bites of dinner she just wanted milk, which had always been normal for her since she was a baby. She drank 3 small glasses of milk (approx 12 oz) and went to play with the other kids. She threw up after the dinner was done and we were helping to get things cleaned up. The public health nurse was still there, I remember her helping me with my daughter during this time. We talked about how my daughter wasn’t ‘growing’ like other kids and how sometimes she just wanted to drink water or milk instead of eat. That I’d had her in to see the family doctor about it and we just brushed it off saying when she is hungry she will eat. That we can’t force them to eat, it will start bad habits.

A few days later, my daughter was complaining her ear hurt and her stomach hurt. The stomach ache went away but the ear ache remained. The sore on her finger getting worse. Back to the doctor we went on November 18th. They checked over her finger, they checked her ears, they checked her throat. Her ear was infected and her tonsils were huge and red, and the sore on the finger infected. We went home with another antibiotic and instructions to soak the finger in warm water with epsom salt.

A few days later, November 21st, the sore on the finger oozing pus and very inflamed. The accompanied complains of severe aches of ears, throat, tummy led us back to the doctor. They looked her over again, said that the other prescription should have helped already. Told me to discontinue previous antibiotic and they started her on a new one, to continue with the warm water soaks on the finger. I took her to school, she cried. She looked so tired, she said she was tired. She just wanted to go home with her mommy, to cuddle and sleep. I bribed her with ice cream to go to school for the last 4 hours that day. I went home and went on with my day. After school we went for ice cream. She ate a few bites, but she really wanted water. We played some games, we went home and went to bed.

The next few days are a blur of my daughter vomiting, running a high fever, crying, drinking water or whatever liquid we could get in her, and her sleeping a lot. By Sunday night, November 23rd, I knew something was really wrong with her. She looked ashen, her eyes looked sunken into her head, she looked so small and fragile. She tried to eat dinner and threw up all over the floor when she couldn’t swallow her first bite. I cleaned her and the mess up, then I started putting the leftovers away while my other two children ate their dinner. As soon as they were done eating their dinner, we got into the car and drove to the ER. She was so weak she had to be carried to the car and then into the ER.

When we arrived I told the triage nurse that I wasn’t going to leave until they figured out what was going on with my daughter. They told me multiple times that she’s probably just having a reaction to the antibiotic and that the doctor will probably just change it and send us home. I argued and fought with the nurse to do a urinalysis, since my daughter had to go to the bathroom anyways. They said that there was no point, that it’s a waste of time. I remember telling the nurse that it’s my daughter, my insurance, my money and I wanted it done NOW! The nurse finally said she would go talk with the on call doctor. I heard her out in the hallway telling the doctor that I was insisting on having a urinalysis done on my daughter. The doctor told her that it’s not necessary but that since the mother is insisting on it to go ahead and do it. So I carried my daughter to the bathroom to help her, after we were done in the bathroom the nurse put us in a room. My daughter looked so small on that hospital bed, she weighed 30 lbs. She had lost quite a bit of weight, she was skin and bones.

About thirty minutes later, the doctor came in and asked me if there was a history of diabetes in the family (yes I have two brothers and an uncle, I said) and said that he would like to have some blood drawn, that the urinalysis showed very large ketones and very large glucose. The nurse came in and did a finger poke, my daughter cried but had no energy to move. I remember holding her closely to me and sending out a text message to my mom and a brother about the diagnosis. Her blood sugar was higher than the machine could read. A lab technician then came into the room to take some blood, she poked a few times before she could finally get something because her veins kept collapsing. They sent the labs off, and we waited.

When lab results finally came in, the doctor told me that her Hemoglobin A1c (shows the average level of blood sugar (glucose) over the previous 3 months) was 13.1%. It should be 5.6% or lower. Her electrolytes were extremely out of whack.  Her blood glucose was over 800. It should be lower than 120. They said she would need to be admitted to the hospital, but that they couldn’t admit her because they don’t have a pediatric endocrinologist and she would need to be transported to Children’s Hospital. I said ok, I’ll take her there. They told me that she was too sick and needed to be transported by ambulance and that they were on the way there.

My other two children would go home with their uncle for the night. He would take care of them, while I took care of their younger sister. They too were scared about what was going on with their sister.

Once we got into the ambulance the paramedic gave my daughter a cute red teddy bear to hold as they started an IV on her, it took 3 tries before they finally got the IV in her arm. She was scared, I was scared. We rode in the ambulance for over an hour to the hospital. They started an insulin drip in the emergency room there, then transferred us upstairs to her room for the next few days. And so our journey with diabetes had begun. I overheard the doctor telling the nurse to keep a close eye on my daughter that she might not make it through the night. I remember being scared and not showing it, because I didn’t want my daughter to know how sick she really was.

My daughter slept all night and the next morning, only moaning when they did blood draws and finger pokes for hourly lab work and blood glucose checks. In the morning I explained to her that she had diabetes like her two uncles and would need insulin for the rest of her life to keep her healthy. She didn’t want the shots of insulin, she didn’t want her blood glucose checked but she did it. By Tuesday she was finally starting to feel better, she was getting color to her face again. She was getting up out of bed and playing games and watching tv, but she was still very tired and sleeping a lot. She said something that has stuck with me since that day, “Mommy I don’t like shots, but they make me feel better.” Each day at the hospital she got stronger. She got a teddy bear to learn to give a shot to, and some large syringes (without needles) to play with.

I met with the CDE and dietitian where I learned to count carbohydrates, how to draw up insulin, how to give insulin shots, what the symptoms are for high blood sugars or low blood sugars, everything I needed to keep her alive. They sent us home with insulin to carbohydrate ratios, a correction scale,  2 vials of insulin (one Novolog and one Lantus), a glucose meter and a bottle of strips, a huge 3-ring binder of information, a fridge magnet with sick day management, emergency contact numbers, and fear of doing this alone. I was not ready for real life, for being on my own. What if I did something wrong? I had to do it, I had to jump in head first and do it. There was no other option, no other choice. I was responsible for keeping my daughter not only alive but LIVING! They didn’t teach us how to live, this is something we had to figure out as we went on with this journey. They didn’t tell us how much things would change, it’s something we had to figure out each day with each new adventure. She was able to go home on Thanksgiving Day.

Thanksgiving means more to me now, than it did before. Thanksgiving is a reminder of how close I came to losing my daughter and how thankful I am for the discovery of insulin, without it my daughter wouldn’t be alive.

Celebrating 5 years (and 24,000 test strips) of living with type 1 diabetes.

Celebrating 5 years (and 24,000 test strips) of living with type 1 diabetes.

This has been a long journey. Five years. Almost half of her life. Five years of living with this chronic disease. Five years of educating others about this chronic disease. Five years of living with Type 1 Diabetes. Five years of wishing for a cure. Five years of hoping and staying strong. Five years of learning more. Five years of pokes.

FIVE YEARS STRONG!

Diabetes is like a Newborn

Having a child with type one diabetes is much like having a newborn baby. The time, the devotion, the energy, the lack of sleep, their accomplishments. We hold our breath and cheer them on.

We parents devote so much time and energy to caring for our newborns. The sleepless nights, the 2 am feedings and diaper changes, the midday naps or cleaning sprees. We have constant feedings and diaper changes. We have a baby monitor in their room so we can hear if they wake and cry during the night. During the day you spend your time checking on them constantly, not leaving them alone for long for fear of something dreadful happening. If you have ever had a newborn baby you know what I’m talking about.

When my daughter was diagnosed with type one diabetes, I felt like I was instantly transported back to a time of sleepless nights, 2 am feedings, midday naps and late nights. After almost 5 years since her diagnosis, I still find myself stuck in this stage. There is once again a baby monitor in her room, not to hear her crying in the middle of the night rather to hear if her CGM alerts of rising or high blood sugars, and falling or low blood sugars. I find much of my day and night are spent caring for her and her diabetes. Checking blood sugars, correcting high blood sugars, giving quick carbohydrates to bring up low blood sugars, counting carbohydrates, calculating insulin doses, changing insulin sites, checking for ketones, always worrying that something might go wrong.

When we leave the house with a newborn we take our purse and keys,and take an extra bag with baby supplies: diapers, wipes, changing pad, bottle of breast milk (or formula), a pacifier, an extra change of clothes, blanket and a few toys to occupy our baby. When we go on a trip with a baby we pack EVERYTHING! Diapers, wipes, bottles, pacifiers, playpen, loads and loads of clothing and pajamas, strollers, thermometer, baby tylenol/advil, toys, blankets upon blankets. We pack more than we need, but we still pack it just in case. They grow and we as parents learn to pack less for them and give them more independence as they get older.

When leaving the house with a child who has diabetes we take our purse and keys, and grab an extra bag containing: a glucose meter, test strips, extra pump site/tubing, glucose, snacks for low blood sugars, lancets, extra batteries for glucose meter and pump. If we will be gone for a longer period of time we also pack insulin, extra pump supplies (including sites, tubing, cartridges), adhesive for over the pump site, skin prep (we use hibiclens), alcohol swabs, adhesive remover, syringes in case something happens to the pump, ketone meter and test strips, extra CGM sites, along with the usual items!

Having your baby sleep through the night is something all parents look forward to. It’s a big accomplishment. We will always worry about our children, as they grow and become more independent. Every step they take from that very first one that we cheer on and mark down to always remember, they gain independence from us. That first step they take is scary and exciting, we hold our breath as we encourage them to take another. I find myself holding my breath as I encourage my older two children to take steps on their own to gain further independence. It is scary to watch them move forward with their lives knowing that one day they will graduate high school and move onto college and lives of their own. I will be here to cheer them on every step of the way.

Having my daughter counting her own carbohydrates for a meal or a snack that very first time was a big accomplishment. The day she stopped crying at having to have her blood sugar checked or insulin given, that was a huge accomplishment. Watching her give herself insulin for the very first time, took my breath away. One day she will be more independent in caring for her diabetes, but I will never stop worrying. Each small step she takes in gaining independence is scary and exciting. She’s taking some of those small steps but she’s not ready (and neither am I for that matter) to take on full, solo responsibility. Until then, I will continue to teach her and do it for her. One day she will take it on and we will celebrate!

Progress, it’s done in baby steps!

Please take some time to read this blog by Diabetes Dad This could be it…

I got teary eyed when I read this blog, my hopes for the dream of a cure soared! Will it be? Can it really be? Is it really progressing this quickly? Is this really what we are all waiting for, what will it be? I was filled with hope, hope for freedom. To be free of this disease. To be free of needles, the smell of insulin, the d-trash that seems to accumulate so quickly. Just to be FREE!

Then the announcement came – Biological Cure. A mini organ. A BioHub. BioHUB It would sense blood sugar and release insulin in REAL TIME?!?! Please, yes continue working on this scientific breakthrough!

An apology of sorts…

I don’t think Diabetes Dad has any reason to apologize. He never directly stated that a cure was within direct reach, but he did give hope. Hope that so many people are now angry over.

Hope is such a powerful thing. I hope for so many things as a sister of 2 t1’s and as the mother of a t1. I hope for days and nights of number in good ranges – not so high or so low that it can cause complications in the future. I hope for sleep. I hope that the supplies we use on a daily basis will work properly – that the meter reads correctly, that the pump works and delivers insulin correctly, the the cgm works properly. And I hope for a day when I can say “my brothers and my daughter are FREE from Type 1 Diabetes1” I won’t lose my sense of wonder or hope.

I don’t feel that Diabetes Dad was misleading, but that he, like so many of us, was full of excitement of the way that things are moving. And I’m so thankful and hopeful of the progress that has been made to this date.

Yesterday when I read Diabetes Dad’s article I posted on my Facebook page “Please let it be true! Not false hope”.
I was asked by a fellow D-Mom “What would “True” Mean to you. and what would “False hope” be? Like when you read it, what did you THINK it might be?”
My reply: “True that there would be a cure. That my two brothers and my daughter would be able to live their lives like the rest of us – no more needles, no vials of insulin, no more late nights of checking blood sugars and not wondering if my daughter will make it through the night.
No more fights with my daughter when it comes to site changes, or blood sugar checks. No more counting and weighing of carbs and food before getting to eat.
False hope – getting your hopes up, that a cure is just around the corner, only to find out that their idea of a cure isn’t what my idea of a cure its, and their around the corner and my around the corner are really a difference of 100 years.”

So now, I think of this conversation and ask myself – Is it true? Was it false hope? I believe it is true, that we are moving forward. That we are progressing in the right direction. Progress, is done in baby steps. Remember when we learned to walk. Baby steps!

It is hope-inspiring! False hope – NO! I don’t feel that the ‘teaser article’ “This could be it…” from March 4th gave me any false hope, in fact it inspires more hope. More hope for more small baby steps. More hope for moving forward.

I asked my 10 yr old daughter – what does CURE mean to you – her answer:
1. NO more needles
2. NO more pokes
3. Being able to go to friends’ houses all day.
4. Being able to spend the night at friends’ houses for birthdays.
5. Able to play non-stop
6. JUST TO BE FREE!!!

Free – just to be free! Free of tubing, free of needles, free of constant fear, free of constant supervision. FREE! Can you just imagine that feeling? To just BE FREE! What an amazing concept!

And I agree. The BioHub would do all of that! So would it be a cure? I think, that just maybe it would be!

Thank you! I look forward to reading more of the great things that DRI and Diabetes Dad write in the future!

I’m excited and hopeful as the scientists around the world continue to work towards being FREE of this disease.