New Blog

I am now a blogger over at OnTrack Diabetes so please come follow my blogging over there! :)

Where did you come from?

Ok seriously where in the world did this test strips come from? Aly has been gone at diabetes camp since Sunday ... we have not used a blood glucose machine or test strips in umm .... 4 days .... I vacuumed this afternoon and somehow there is a test strip at my feet on the living room floor. Geez diabetes never really goes away even when the diabetic is not home :/

Diabetes Camp Drop Off

Yesterday afternoon we dropped Aly off about 45 minutes from our home for a week long diabetes camp that is put on by our local American Diabetes Association

We will miss her but I know just great this camp experience will be for her in regards to her diabetes care management and meeting new friends who are "just like her"

I will stay strong and try not to feel too anxious with her not being here with me. I hope diabetes plays nicely so she doesn't miss any fun activities

Diabetes Camp

My 9 year old daughter Aly leaves for a week long diabetes camp in a mere 5 days. This is only the 2nd time that she has gone to a camp without a family member going with her. This summer we braved sending her to church camp that was 2 hours away .. no nursing staff .. only a college age staffer and the knowledge that I taught her. I will say this that it truly was one of the hardest times since diagnosis for me, I generally am not an emotional person but when she left my care on that Sunday night I was an emotional wreck. I just wanted to cry, I was going through all the what if scenarios in my head, and thinking the worst! They did AMAZING, did a site change, had some lows but all were resolved, and Aly had a FABULOUS time and is ready to go again next year.

Now I know with diabetes camp she is going to be under great care ... endo's ... nurses ... other kids with t1d ... she will be in great medical hands, now I have to say that I am still freaking inside. She will not be around me, her mom, who takes care of her T1D 99% of the time and rarely asks for help. I am sure that I will try to go check her sugar when I go to bed only to find her bed empty, I will go check on her in the morning only to find her bed still empty, but I will remember that my daughter is having an amazing time. I hope that with this experience she becomes even better with changing her own infusion sites and carb counting. She will be able to have the experience again this year like she did at diabetes day camp last year where EVERYONE is checking their sugars for breakfast, lunch, dinner, snack, and before exercise ... They will check ketones if needed ... They will ALL be counting the carbohydrates that they will be consuming with each meal and snack ... and they will ALL know what it feels like when their blood sugars are out of whack either high or low.

For this week I will keep my feelings to myself and let my child have an amazing life experience and feel like the "norm" instead of different.

Time to start packing my princess for diabetes camp.

Face the Facts

As the parent of a child type 1 diabetic and the creator if the Facebook page Type 1 (Juvenile) Diabetes Facts and Information; I reach out daily online to at least 3,500 people that may or may not be affected directly with Type 1 Diabetes.

As the parent I get that we do not want to hear the down right bad things about Type 1 Diabetes and we want it to be all rainbows and candy canes but seriously people, DIABETES SUCKS!! None of us asked for it, NONE of us want to deal with, and WE ALL want it to go away and a CURE to be found .... BUT until then the cold hard facts are there and we need to look at them and face them head on even though they are ugly monsters that we would rather turn our heads to.

It is a FACT that:
 

- Type 1 diabetes is a devastating autoimmune disease caused by the immune system mistakenly turning on itself, destroying beta cells within the pancreas and removing the body’s ability to produce insulin. Insulin allows the body to process blood glucose to create energy. Without insulin, the body literally starves as it has no fuel.
 

- People with type 1 diabetes cannot survive without insulin that has to be injected up to six times a day or continuously infused through a pump, as well as check their blood sugar levels up to eight times every day just to stay alive.
 
- People do not outgrow diabetes.
 
- Each year, more than 15,000 children and 15,000 adults—approximately 80 people per day—are diagnosed with Type 1 Diabetes in the U.S
 
- As many as three million Americans may have Type 1 Diabetes
 
- The rate of Type 1 Diabetes incidence among children under age 14 is estimated to increase by 3% annually worldwide
 
- Type 1 Diabetes accounts for $14.9 billion in healthcare costs in the U.S. each year
 
- There is NO break from Type 1 Diabetes

 

Now I get that we need to think positively to keep going forward day to day but there are times that we just need to face the facts and not get so pissed off when posts are made that make us stop and think a little bit about the disease from a medical perspective and not from an emotional perspective. 

 

I know this is a debbie downer post but I just had to put it out there and let my feelings out plain and simple 

 

 

 

I have a dream

As most of you are aware I am really big on Type 1 Diabetes Education and Support. Well this momma recently got a new set of wheels and I have a dream

I have a dream to have my 2012 Mazda 5 wrapped in Diabetes logo's and awareness so that every where I go people look at my vehicle and ask questions .. Even if they ask me why ... oh ya will they get an ear full!! I want to be a rolling diabetes awareness momma :)

THAT is my dream!!

:)

It is a nice blank slate :)

If you or your company is interested in sponsoring this dream you can contact me at hopeforaly@gmail.com

Most Happy Without You

Dear Diabetes,

I don’t know why I’m writing you. Its like you’re the ex- that never goes away, the one that you have to see and awkwardly say “hey” to in the street but are secretly screaming “run, run away!” inside.

Life was great without you. Heck, aside from being tired, I can’t complain. You’ve made me rethink my daughters diet, her life, you made me who was a C math student into a A math wiz (counting carbs, insulin ratios, blood sugar levels, fractions, addition, subtraction, multiplication yup I can do it all), I have become an unintentional unregistered nurse and have lost more sleep than I care to even know.
Just so you know, I’m telling all my friends about your dirty tricks. You won\'t be able to sneak up on anyone anymore like you did to us! They will know you are there. Unwantedly there

Just leave. No one cares about you anymore.

No wants wants you, no one needs you, and we just want you GONE FOREVER!

Katrina

8 great things about diabetes

1. There 

2. is 

3. absolutely 

4. nothing 

5. great 

6. about 

7. Type 1

8. Diabetes

Working while raising a child with T1D

When a child is diagnosed with type 1 diabetes the world that the child and their family once knew seems as though it will never exist again. Parents of a T1D tend to miss work more often because the main focus for the parents now is to make sure that their children are happy, healthy, and safe. The Family Medical Leave Act (FMLA) becomes a crucial part of the parents work routine as they have an increased need for time off work to become educated on this new lifestyle which includes daily blood sugar checks and insulin injections, recurring education classes, quarterly endocrine appointments, staying home with their child during sick days, and extra meetings with school staff to make sure their child's diabetes is managed well.

My daughter, Alyse, was two and a half years old when she was diagnosed with T1D. That was six years ago and at that time I was working outside the home as a Prescription Benefit Manager. I was very thankful for FMLA because I had become the primary caretaker of my child when it came to her diabetes. After her diagnosis, I had to take time off from work in order to teach other family members how to manage Aly’s blood sugars and insulin doses. I continued to work outside the home while using the FMLA benefit for three years until I made the decision that it would be better for her care and my sanity to stay at home. At home, I could be more readily available to go to her school when needed, take phone calls from the school nurse, make appointments at her school with the staff to discuss diabetes care, attend her endocrine appointments without feeling like I was letting my employer down. I could now explore my newfound passion of diabetes education and advocacy.

A year after my decision to stay home, I decided to open up an in-home childcare that would specialize in children diagnosed with T1D. At that time, I also began my second career as a diabetes advocate. When I started "Hope for Aly" (our diabetes education effort), I never expected to learn as much about T1D as I have to date and continue to learn daily. I now have my “9-5” job providing in-home childcare but also get to have my passion/hobby of diabetes education as a second career on the weekends. I am currently working as a Glu Ambassador to helping to spread the word about this diabetes support community which also helps to support research all from the comfort of your own home. I’m also looking into starting a non-profit in the Kansas City community that will focus on T1D support, education, and advocacy.

I know that parents who have a child diagnosed with T1D will be able to juggle everything from family, career, to sanity. I do, thousands of other parents do it, and newly diagnosed parents will too.

Article written for Glu

Fear

Try not to let fear keep your from letting T1D child act like a normal kid. They will be ok, they can still eat that ice cream and have their cake too, still sleep over at friends houses, still drive a car, date, go to parties, play sports, and everything else a "normal" child does. Yes I understand it takes extra planning ... Yes I understand we as parents will still worry ... Yes I understand you probably still won\'t get a full nights sleep ... BUT it is ALL worth it for your child be a "normal" child and just have fun.

Another Diagnosis

My daughter Aly was diagnosed with Type 1 Diabetes 1/20/2007.

In may of last year we received ANOTHER diagnosis ... ADHD.

Ever since Aly was little she has had a problem staying on task, getting distracted, very emotional, always "on the go" with body and mind while also never being able to focus well in school. For several years we tried to shrug it off as Aly being Aly and attributing it to her age .... Well last year at the schools push we finally had Aly seen and tested for ADHD, it was not easy to walk into another Dr's office for another visit that may yield ANOTHER diagnosis for my little princess but like we as parents do I knew I had to do it for her. Upon our 2nd meeting with this Dr. Aly had the testing done and what we learned from the results was quite helpful. We learned that Aly was only able to translate 1/2 of what she was learning into actual product of work .. She was able to grasp the beginning and end of conversations but would forget the whole middle portion that was discussed or taught.

Once we received the diagnosis of Combined ADHD we started trying to assist her without using pills .. we tried many different avenues in the classroom and at home but sadly none of these options were working after almost a year from diagnosis.

A few weeks ago we went and spoke with Aly's pediatrician about the diagnosis and what our options were now ... we knew ADHD meds would be prescribed but we did not know about the different kinds or anything. When we left that appointment with her pediatrician we left with a prescription for Vyvanse the lowest dose with instructions to start it promptly the next day.

I must say that this has been one of the best moves that we as parents have made because just like insulin keeps her alive ... her ADHD meds help her perform at the quality that we knew she was capable of. She focuses better, better handwriting, very confident in herself, able to get work done in a timely manner, remembers schedules and directions, and rocking in the classroom.

I am very proud of my amazing princess who is dealing with T1D and ADHD but NEVER let's anything stop her or get in her way!

CHECK DON'T GUESS!

We need to get all pediatricians, ER Doctors, and Urgent Care staff to ALWAYS CHECK BLOOD SUGAR when a child is showing the classic signs of T1D. DKA can come on suddenly and have deadly results when T1d is not diagnosed properly. A blood sugar check that would take less than 1 minute and cost under $2 could SAVE a child's life. We aren't talking scrapes and bruises here ... We are talking LIFE and Death! Please help educate and make sure that your pediatrician knows to always CHECK .. DON'T GUESS!!

Thankless, endless, and exhausting

Thankless, endless, overwhelming, and exhausting. When you hear these words, what comes to mind? Anyone think: Being the parent of a Type 1 Diabetic? If so, you are not alone. You are being genuine and real. I think so many parents are afraid to be honest, afraid that if they go down that road, it signals that they are horrible and unworthy-- somehow broken, unloving and undeserving. Believe me, you are none of those things. You are tired. Everyone knows that amidst those moments of frustration, you celebrate amazingly tender, loving, joyful and rewarding moments. Wrap it all up and that's parenthood. Don't let those dark moments define you. Smile and know that around the corner there will be joy and that joy is unmatched. You are living the dream!

St. Patty's Day Parade

Hope for Aly participated in our 1st Lee's Summit Emerald Isle Parade on Saturday 3/16. We had about 10 people out at the parade and we handed out flyers with T1D symptoms, candy, shirts, and necklaces. We reached over 400 people with T1D information and many more with our other goodies.

We look forward to participating again in the 2014 Parade and making our float even bigger and better.

If you would like to sponsor our float for 2014 please contact me at hopeforaly@gmail.com

I have a dream

Some people dream for lots of money, expensive cars, vacation homes, ..... I dream about educating more people about T1D and finding a cure. My goal .... Someday have a large amount of people affected by T1D converge at the NYC Thanksgiving day parade, have a float and hit the masses with T1D info ... And someday have walks when everyone is CURED. 

One can dream right :)

So it begins

Aly and I were talking the other day after watching Mike Lawson and Ginger Vieira on their YouTube Vlogs and Aly came to me and asked if she could start a Vlog, I said sure why not ... Well today she taped her 1st episode of "The Aly Show". You can watch it online at https://www.youtube.com/watch?v=EGq2ZYlxVsE

We will have more episodes soon and will cover all things T1D related. If you would like to submit questions you can email them to hopefpraly@gmail.com

We will see you soon :)

D-I-A-B-E-T-E-S

D-I-A-B-E-T-E-S

D..oing all that I can humanly do to give my child a normal happy life.

I..nspiring others in the same situation to stay positive and move forward.

A..ccepting the fact that d is part of our life and we have to make the best of it.

B..eing a supportive role model to all my other d-moms and special friends.

E..ntertaining ideas of hope and cure always.

T..olerating the negative effects that d brings along with it

E..nticing others to help us raise funding for research

S..upporting my daughter in all current/future decisions

Advice for Parents

When you learned that your child has diabetes, you may have experienced disbelief, grief, and guilt. Maybe you asked, "Why did this happen to my child?" Maybe you cried out, "It's not fair! " You must come to grips with these feelings so that you can learn the tasks and techniques of diabetes control. Your whole family needs to make adjustments to your child's condition. How you deal with and accept diabetes affects the way your child deals with and accept diabetes. The more you know about diabetes, the better equipped you are to help your child.

As a parent, you are naturally anxious, but it's up to you to help your child accept his or her diabetes with a minimum of stress. The American Diabetes Association, Diabetes Hands Foundation, Hope for Aly, and JDRF can be of great help. Other parents who have faced the same problem and learned to cope with it are more than willing to share ideas and advice. You must learn to protect without dominating, to supervise while encouraging self-care. Work with your child for the best control, but remember that "ideal" control isn't always possible.

Your role as the parent of a child with diabetes will change as your child grows. Every child is different, of course, but there are some general guidelines you can follow at each stage. And there are some things you can keep in mind no matter what your child's age: Accept your child. Love, teach, guide, and discipline just as you would if diabetes were not a factor. Do not overprotect or overindulge. Accept your child's diabetes without guilt. Learning all you can about diabetes will help you overcome your fears and anxieties. And remember, you cannot control your child's diabetes by over controlling your child.

Your child's self image and self esteem are threatened by diabetes. Be understanding and supportive. Try to avoid unnecessary anxiety about "cheating." You don't want to cause guilt feelings, or make your child think he or she is "bad." Children who think are bad may act accordingly. Help your child plan ahead. No child can should be expected to assume complete responsibility for diabetes control at too early an age. But, ultimately, responsibility for eating properly, injecting insulin, testing blood sugar, and planning exercise will be the child's. Maturity, independence, self control, and self esteem will grow as your child learns self-care.

A child with diabetes is a child first, and a person with diabetes second. Like all children, yours needs to grow physically, socially, and emotionally. Alert parents who are relaxed, knowledgeable, tolerant, and accepting help in the growing process. Feelings of guilt and resentment lead to problems between spouses and between parents and children. Your child's diabetes is a challenge your whole family must face together. It is not a punishment for anything any of you did  

We as parents have our own pitfalls that we need to work on, some of those may be but are not limited to:

An overanxious parent creates an overanxious child who is overdependent. By doing everything for your child, you deny him or her the self-control and self-confidence necessary for an independent life.

An overindulgent parent feels dietary restrictions and daily injections are too much for a child to handle. He or she offers special treats while providing little discipline. Children of overindulgent parents may grow up under the impression that they are incompetent -- incapable of coping with their own problems -- which reinforces feelings of inadequacy.

A perfectionist parent may achieve good diabetes management in early childhood through discipline, but there are risks. The child may feel guilty about poor blood sugar test results, and may even alter a result to obtain parental approval. During adolescence, children of perfectionist parents may rebel -- against both their parents and their diabetes care programs.

An indifferent parent may force his or her child to seek attention through rebellion, by "cheating" on the diet, or by skipping insulin injections. Children of indifferent parents may become depressed because of the lack of discipline, support, and supervision in their lives. They also have a higher frequency of hospitalization.

 If you ever feel overwhelmed or need people to talk to the Diabetes Online Community is amazing and they are there to help you with what I mentioned above and so much more.

Tour de Cure

My name is Alyse, I am 8 years old, and on Jan 20, 2007 my young life was changed forever! I was diagnosed with Type 1 Diabetes.

Type 1 Diabetes means that I am dependent on self injected insulin, carb counting, blood sugar checks, dr visits every 3 months, high and low blood sugars, and so much more for the rest of my life.

I come to you today to ask for help. Please help me raise money for the American Diabetes Association. Help me fund an organization that keeps me safe and fights for my right while I am at school ... Help me fund an organization that has summer camps staffed with endocrinologists, nurses, and physicians so I can have fun like all my other peers without having to think about my diabetes care because everyone there is just like me ... Help me find a CURE for Diabetes.

I will be riding my bike 10 miles in the Kansas City Tour de Cure so please help me help all diabetics

Donation of ANY amount can be made online at http://main.diabetes.org/goto/AlyHuckabay

Thank you

Aly Huckabay

Rebound

So as you all saw last night we had a dangerous low ... Yes I hate nights like this and lately they are becoming more frequent :( .... Well needless to say we are now fighting horrible stubborn highs because of that dangerous low. It has been like pulling teeth to get her below 300 :(.

This disease is so annoying and unpredictable. We truly, HOPE .... WISH .... AND WANT A CURE