The journey ahead and a salute to those that came before us............

November 30, 2011

The long road on our families journey is just beginning for us – we have only had diabetes in our family for 7 months.  Honestly now after seven short months I don’t even remember our lives before diabetes – I know it was easier and not that long ago, but it is hard to fathom it was ever different than this now.

When were diagnosed everyone kept saying you will start to feel normal again, a different normal but normal. They were right – we do feel normal – we are normal – a normal family with type 1 diabetes as a part of it, but it is a different normal than before – I think – again, I don’t remember it before.

Our lives drastically changed instantly – and I suppose that is why I don’t remember it - there is no reason to – it will never be that way again, so why fill my head with thoughts of the past. I don’t really remember life without kids either though – after one it is all a haze, after three it is really fuzzy so why would we care that we have to adjust our normal again – we don’t – we can’t – we have to move forward not wish for the past – but HOPE for a brighter future!

This is the hand that life has dealt our family and we are learning so much from it – it might not be the royal flush some get but we are definitely holding some aces! Because of diabetes in our family I have become a more outspoken outgoing person. I am less afraid to ask 1000 questions and less afraid to talk about my families medical issues and always willing to educate someone – even when they don’t ask! I have made some really great new friends and I re-evaluated my life and what was really important right now at this time. I made that really important step back from work to be closer to home and at home more often. These things have made me a better person and all because of my daughters diagnosis.

I don’t believe that is why God put this on us for ME to become a better person – I believe he gave our whole family this challenge because we could all become better people and we could all help make a difference in our lives and others. God knows that we will rise to this challenge and deal with the difficult days and blessed us with the resources necessary to get what we need. God gave this to us and to Allison because we were worthy of the challenge just like all the others with this disease in their lives – we have something to offer - that is why we were chosen to have this challenge.

Not everyone with it may realize it but they have a unique gift to give – and each gift is different – some are good at talking, some are good at writing, some are good at motivating, some are good at earning money and some are good at teaching – and probably a 1000 other things out there. Everyone with type 1 diabetes as part of their lives gets to show the world that life isn’t always perfect but it can still be fun and rewarding.

So to all those out there that share our world of diabetes I salute you.  I salute all that you have done for us before we arrived – the challenges you faced, the fights you fought, the medicine you honed for us. I thank you for the books you have written, the blogs you have posted and the time you have taken to raise the money and make awareness of this disease come to the forefront. We may not be ecstatic that we have to deal with this day in and day out but we are so proud to be a part of a community that takes it all in stride and marches forward together hand in hand.

Thank you for taking us in and helping us on the path – please keep posted – I will keep blogging and reading and raising money and awareness and look forward to doing it alongside all the rest that are willing to take on our challenge!!

Until there is a cure,

Jennifer

Supporting each other through the fog............

November 29, 2011

Tonight was the second meeting of a type 1 diabetic support group for the Eastern Shore of Maryland that we started last month –the best part of my month!

Before Allison’s diagnosis I thought support groups were for people with “issues” – those people that needed help dealing with something they couldn’t deal with – they needed sponsors to keep them on track and safe from themselves – I don’t have any issues or problems that need people to make sure I am not doing bad things to myself!

I have been through some tough times in my life but the support of my family and close friends was always enough to get me through – and I thought, honestly thought, 7 months ago that there was no reason for me to go to a support group. I knew a couple of other parents with kids with diabetes so I had resources and my family and friends are awesome so I will be all good.

Oh, I was VERY wrong. Diabetes is a world unto its own (if you haven’t read any of my other blogs – do and you will understand that statement.) It was helpful knowing people that were going through what I was going through – but I only saw them in passing at school – and I never knew what to ask or say that moment to help me mentally – then summer hit – and everyone went different directions.

I felt lost in a heavy fog – people kept offering me names and phone numbers of people with kids with diabetes – which is wonderful and appreciated – but most of them were not local – and I enjoy a good phone conversation and am fine with electronic communication at times - so I tried that with some – it just wasn’t filling the void I needed.

I heard of a support group in Annapolis, MD – across the Bay Bridge – about 45 minutes or so away, and it was just for parents. I really wanted to go, but I could not find someone to watch my diabetic child that understood how to deal with her needs for me to go except for my husband and he wanted to also attend – what were we to do. I got on the list for the group in hopes one day we could attend and I learned of a meeting that the ADA was holding in Easton - much closer and the date and time worked for us – I could have taken Allison but I didn’t because I wasn’t sure.  I met some great people and talked to them about my need for support – and we agreed they would help if I would spearhead – and I was on board.

A month later we were holding our first meeting – and it was fabulous. I couldn’t tell you how awesome I felt after that meeting. Neither I  nor Allison needed support because we were going to do something to  ourselves but we were the same as these people – our family was the same.  We had the same emotions, the same problems, the same feelings, the same questions. It was like I found the kindred spirit in the fog – there they were – the other parents of diabetic kids in my community and Allison got to play and bond with others like her without dealing with the questions or issues. I had such an adrelinie rush after hearing their stories and hearing my concerns were normal and that we were not alone in this. That first meeting was one of the best days of my life since Allison was diagnosed.

Tonight I got that same feeling – we sat around a table together – had a nice simple meal – the kids played and did some Holiday crafts with Allison’s grandma. I learned all about pumps, and lows, and highs and A1C and 504 plans and how others deal with them – and they heard our stories. We didn’t teach each other research or plan out our conversation we just went where we went with questions  and issues and topics ranged from my research night with the ADA, about Awareness Month to bake sales for diabetes. I, like after the first meeting, feel like there are people that day in and day out feel just like me and I have people that understand (because they are living it) what I am dealing with.

I appreciate all my friends and family – more than words can express – but their knowledge and attempt of understanding is only that knowledge they cannot truly understand what it is like to be a parent of a child with this disease. These parents and these kids that Allison gets to “hang” with during the meetings – they get me – they get my highs and lows – and they said I will probably cry three times or so a week or a day when Allie starts the pump – the first weeks are hard – they were honest with me – they know – they felt it to – but it relieved me to hear it.

I am now fully supportive of all the support groups that exist – if you have something in your life that few others around you experience start a support group – having one, two, five or ten people around you at least once a month sharing your stories and concerns will give you a high that will last you the whole rest of the month.  It will help you stand up and move forward when you think you can’t and they will laugh at things because it is so true and not be concerned you aren't handling it well just because you break down in tears!

Thank you to my support group friends - my lighthouse in the fog - you have become the ones I will carry through my life because our bond will be there forever – I vow to support you as much as you support me – or more if you need it – we will keep up the good fight together!!

Until there is a cure,

Jennifer

My small journey is winding down...............

November 28, 2011

Today I am telling you about my experience with writing a blog every day (minus one) for the whole month of November - I realize today is not the last day of November or Diabetes Awareness month – I have a blog in mind for tomorrow that I feel will mean something to me and one for the last day based on things our family is doing – so thought I would write my what I learned by writing this blog today:

As we begin to wrap up the month of November and Diabetes Awareness month I started to think back to how excited I was to take the opportunity to write a blog each day about diabetes and our families life.  At first I was worried no one would read it, that it would sit out in the abyss of the internet without making a difference.  The number one thing I learned during this month long venture – that telling your story makes a difference, that voicing your concerns and explaining things to people can make an impact.  I am glad I no longer have to think of an idea each and every day – but the journey was worth it!

I honestly can say that I have probably learned as much, if not more, than most people that have been following my blog. It has been daunting, fun, emotional and educational for me every day that I have posted something onto the site.

Through the month I have enjoyed hearing from my son, my husband, my daughter and her grandparents on how they feel this new life has affected them. There were some things they expressed that surprised me a lot – and some I was glad I already knew.  For instance I didn’t know that my daughter thought she tested a lot at school, but she wrote that over and over in her blog. Apparently that is one concern of hers I can take with me and work on with her now at school. I got to hear the passion of my son for his family and how he is really going to be one of those really nice guys (just like his dad) when he grows up. I learned where my husband sees challenges and finds his solace to maintain the control of this situation in his life. And I got to glimpse through Allison’s grandparents eyes and saw how our lives look from the perspective of those that deal with us regularly but aren’t in it day in and day out.

I got educated. I posted a few blogs about specific terms, and issues and upcoming research. I didn’t know a lot of those things before I sat down and researched them or before I went to the research night with my son. I knew that there was a possible artificial pancreas – I had no idea what it did or anything or how realistic it was to be completed and available – but it is not a cure – just a better way of management. I learned that an actual cure for Type 1 diabetes isn’t really any closer now than it was 10 years ago – however researchers would have you think otherwise – but I did a lot of research and it all sounds the same as it did 10 years ago. But the artificial pancreas could be a promising new device to sustain Allison’s health much better and longer – so that is good news!  

I also learned a great deal about myself. I know, that like everyone I will do whatever needs to be done to make sure my child is healthy and happy – but I have learned that that sometimes comes with a mental downside. I learned I can be strong even when I don’t feel like I can be and that I can be weak and there will be someone there to pick me up along the way. I learned who my friends were – the ones that took the time to read this – to care enough to share this blog to teach others in their worlds (no words express my gratitude for those around me at this time in my life).  

I also found out that I can express my inner most thoughts and put it out there for the world to see and no one will think less of me – they might actually identify with me. I learned the world is bigger than my little community around me and people in Russia, Canada and India were reading about our little life here in Maryland.

I have experienced highs and lows (just like my daughter’s blood sugars) this month but I learned that life is going to go on – that diabetes, for the time being, is a part of that life for us – but life will still go on for us. We will not sit still and we will not lay down and say okay – we will fight and we will cry and we will support each other and we will find a cure and better management – and my daughter and all those like her will have a better brighter future because her family and friends took the time to simply care about her and stand up next to her!

I am glad I took this long journey this month – and that you took it with me – stay tuned – two more blogs for this month – and then I will return less often, but will still here telling our story because as I said at the beginning that has made the biggest difference of all!

Until there is a cure,

Jennifer

Eating out is a little harder now (but so is eating in!!)............

November 27, 2011

Restaurants. I wonderful treat for the family to take the time and go out to eat. I will be honest our family loves to go out to eat. Our schedules sometimes require it other times, well after long days working or doing the million other things we have on our to do list we just can’t bring ourselves to actually cooking something. So when Allison was diagnosed with Type 1 diabetes on May 1 we really had a wake-up call about where and how we were going to deal with the aspect of restaurants. We didn’t really think about it at first – then it hit us on the way home from the hospital – she was hungry and wanted some McNuggets – what to do!!??

We were given a handy book that had some of the more popular restaurants with carb options listed out in it – we use that ALL the time. The other resource I find so important is my smart phone. When we decide to go out to eat I just open up the web search for the restaurant, search for the kids menu and hope they have it all listed.

We have found some restaurants really easy to access the information we need and then we have struggled to find others that our family really wants to go to. We had a special birthday celebration at the Cheesecake Factory – try to find that information anywhere and you will be shocked how hard it is to actually find! So we went there and asked them – they were very polite about it but didn’t have it – they did go above and beyond and called the restaurants on New York and Washington State (where they are required to have this information) and had them fax it to us at the restaurant – and we now keep that with us – I am surprised a restaurant isn’t required to have it but I was very pleased with their response and assistance to us in our need so we could have our celebration!

We had attitude at another restaurant when we asked – they looked at us like we were from outer space – how dare we ask for such a thing. We found the information online and dealt with it – as we were travelling and didn’t have any other options.  We have frequented one in Easton since and they have only been awesome and helpful so I hate to say a negative about that specific Chili’s.

However, we have found the easiest places to get this information is fast food places – we always go to McDonald’s on our way to church every Sunday – we didn’t want our tradition to change so we still go and get our pancakes – boy does syrup have a ton of CARBS!! J But, McDonalds has all the information you could possible need right there in the store at easy access, as does pretty much any fast food place.

We have even had a great waitress at the Red Robin in the Annapolis Mall that is also a Type 1 diabetic – she was our waitress – and Red Robin has an APP for their nutritional information – we go there often when we are in Annapolis – pretty much the place for the Holdgreve’s!!

At first I was so stressed about going out to eat – it has, like everything else, gotten easier. Sometimes I find it easier than eating at home when I do actually cook – I am still uncertain how to figure out how many carbs are in my mom’s recipe for penny potatoes that Allison loves – or if I make anything else from scratch – seems like I should I be better at that by now – but roll into McDonald’s and I got that down!!

I suppose like everything you slowly adapt to the necessary and as we continue to learn and figure it all out it will get better and easier as we move along. We are blessed to live in a day and age where we can whip out our smart phones and figure it all out right there, pull out the meter and the needle and still enjoy our family dinners at our local restaurants and our Sunday mornings at McDonald’s.

Until there is a cure,

Jennifer

Traditions remain with a few changes as needed...........

November 26, 2011

Like everyone our family has some wonderful traditions that add fun and interest to our lives. My favorite daily tradition is that we sit down to dinner together as a family (as often as we can) and we go around the table and do our “best and worst” parts of our day. We find it a great way to find out about our kids day when they aren’t in the mood to talk otherwise and our kids learn a little about us. Some of my other favorites are just now beginning  as the holiday season starts. We did our first official Christmas one today – the Saturday after Thanksgiving we sit and write our letters to Santa.

This year was no different – the kids were so excited – they all ran to their rooms and started writing: Dear Santa…… (with a number 1 item listed for him – so he knows the importance level of their items.) Then they bring them down for me to review and we put them in the magic box by the fireplace – Santa will magically take them tonight from the magic box as they sleep so he knows in time to get them SOME of what they have on their list.

Ryan wants his Legos (Star Wars and any other kind possible), Wii games, a new family dog and Nerf guns – a few other small items. His list is pretty much the same every year. The interesting new item this year is the family dog. I remember the day we had to put Bailey down, a little over 6 months ago, it was two days before Allison was diagnosed with Type 1. Had she not already been getting sick that Saturday I might have thought the stress of losing her dog might have been the cause, however since Bailey had been sick for a few weeks it very well could have been the trigger for her. I think of that often as I wish Bailey was still around. She was such a great wonderful dog and loved us all so much.  As a note we will be getting a dog – for the family (but not as a Christmas present.)

Samantha wants an American Doll girl, some Legos, a Justin Beiber Barbie (not sure about this one!), a blow up pool (like we have in the summer) and a few other small things – number one on her list was the American Doll girl – one that looks like her. Her list is very different this year than the past - except that it doesn’t have much original to it – she tends to want the same things as her older brother and sister. Legos like her brother and dolls like her sister – the blow up pool – that is all HER – and not sure where to get one of those this time of year!! J

Allison wants an American Doll girl, a Justin Beiber Barbie,  and a camera. That is all she had on her list.  Well written and of the three kids she was the only one that remembered to say Love, Allison at the end. I thought that was all until she said turn it over, I did a picture of the American Doll girl and a P.S. That was a very new item - a P.S.? I will quote it for you:

                “P.S. Santa I also still want candy in my stocking please.”

I asked her why she said that – “because Santa knows I am now diabetic so I don’t want him to not give me candy – I will eat it like I should with insulin.”

Until that moment our tradition was moving along exactly the same and then like everything else in our lives since May 1 I got a slap in the face of how it is different.  It will never be as easy as it once was – here was my beautiful seven year old girl thinking Santa was going to bring her something other than candy now for her stocking but her brother and sister didn’t have to give it a second thought (why would they?)  Allison was so worried she made a special note of it for Santa - she was thinking about being diabetic – she probably always does but I just don’t realize it.

Traditions are important and as much as diabetes is a part of our lives we will just wrap it up into our traditions slowly and it will become a part of them – this first year is just us learning how to manage that aspect of it. During our dinner “best and worst” Allison never says her worst part of any day is anything to do with being diabetic – she didn’t seem sad to have to ask Santa to bring her candy – it was just a matter of fact that she wanted him to know she could still eat it – with assistance of her insulin.

We are excited about this season and all the fun traditions we have to come – and will manage them one at a time as they are adjusted for our new world – we will follow Allison’s led and make the necessary adjustments and not change the tradition – because keeping things the same as much as possible is what matters the most to us now!

Until there is a cure,

Jennifer

Thankfulness abounds..........

November 24, 2011

Today everyone is telling each other why they are thankful for the past year and what in their lives make them happy. We of course are thankful for our family and friends, but we are also thankful for our health. Yes, our daughter’s health this year has been a roller coaster ride but she has a disease that is manageable and we are very thankful for that. As much as a cure and being able to sleep through the night would add to our thankfulness, we will be gracious enough to accept our lives as they are – because we are happy, healthy, safe and secure and have great medical insurance. There are many others in this world that cannot say those things.

So on this wonderful holiday of thankfulness we send out our cosmic thanks to the world and heaven and say how thankful we are to have each other to walk through this life together –  with or without diabetes – either way we are blessed to be a who we are and where we are!

Happy Thanksgiving to all – and now let the Christmas season begin!!

Until there is cure,

Jennifer

Keeping the faith, marching on and knowing what is really important...........

November 23, 2011

Because I have a "Thankful" blog all ready in my head for tomorrow, November 24, I am going to use today's blog for what I would normally be thinking about on November 24, and try to remember the spirit of tomorrow's day (not date.)

Three years ago on November 24 my world was turned upside down and shaken - much like I felt on May 1, 2011 when Allison was diagnosed, but this was something I could not find a way to control. My mother suddenly passed away. We had no warning and she was feeling fine, she just did not wake up on November 24. There is a solace with a loved one passing in their sleep - I think we all hope that our passing into heaven will be that peaceful, however three years ago solace was something I was not able to find in my world, much like this past May.

I bring this up, even though it has been three years, because on May 1, 2011 the one person besides my husband I wanted most next to me was my mommy. I am a grown, well adjusted, highly educated, self sustained woman in my mid-thirties and I wanted my mommy. Much like Allison wanted hers, I wanted mine - to be there to comfort me, to hold my hand and tell me everything was going to be fine, to give me a hug, to help me understand, to pray with me. She was a nurse by practice so that just added to my need for her that week in my mind. Why did God wait until she was gone from my life to have this event occur in our lives? Her wisdom, kindness and skills would have probably made my life so much easier at that moment, but He has a plan.

I start to think about both of my parents this time of year - I lost my father when I was 18 - that was 18 years ago - a whole other lifetime for me has passed since I have had him in my life. The three years without my mom seem like a drop in the hat in comparison. Being only 18 when my dad passed I still hadn't become anything to anyone, including myself and still had to grow to truly miss him, my mom's passing as an adult, was at the time, the most dreadful thing for me to experience.

My mom grew up in southern Missouri and lived her entire life there, until one day I told her I was having my first child and we were discussing childcare options - she mentioned her retirement was coming up at the same time as the expected birth - what a great coincidence. So we offered to have her move in with us and she picked up and moved to the East Coast and started her whole life over with us - how perfect and wonderful for us - and great new experience for her. So when she passed not only did we lose our mother we lost our rock and security in our home.

All of the sudden we had to figure out a whole new life for ourselves, we had to figure out childcare the hard way - the way the rest of the world did it. After juggling missing work for me, and missing work for Chris and Chris' parents coming to help when they could we finally accomplished the task of finding the most wonderful Au Pair to take the hand of our children on a daily basis. She is the most wonderful person, but she was not my mom. She was there on May 1, 2011 and was beyond helpful to our needs and worked many long hours that week for us which helped ease my mind of my other burdens at home. She took charge of learning Allison's disease and how to handle it at home and we were blessed to have such flexible care that week and the months that followed.

But on that day in May when I felt again like I was turned upside down and shaken so hard that on the inside I couldn't stand up I just wanted my mom. Some days I miss her more than words can say but I know that every single day since May 1 it has been her spirit inside me that helps me keep going, to keep prayer a focus in my life, to keep peace a central part of who I am. It is her spirit that holds our family high and keeps us focused on what is truly important in life - each other.

I dedicate this blog today to my wonderful mother Jessica who raised me to be strong for my kids and to push through adversity and not look back. I know that she is sitting next to my dad, holding his hand, looking over a beautiful lake in heaven smiling down on us. I know she is keeping a watchful eye over her precious Allison during her struggles. I can feel her every now and then reach down and give me a hug when I am at my weakest and take my hand and pull me up and sometimes I would swear I can hear her say to me "it will all work out in then end, just keep the faith."

Here is to keeping the faith and marching on and keeping an eye on what is really important in life - a lesson I hope to teach my kids from their Grandma Jessica.

Until there is a cure,

Jennifer

Research and what is next for Type 1 diabetics............

November 22, 2011

Last week I attended, with Ryan, a great research session sponsored by the Maryland chapter of the ADA where we learned about the advances in research and a cure for type 1 diabetes. I learned a lot and then did some more research after on the notes that Ryan and I took – mostly because he is going to do a science fair project on diabetes and research. Here is the education we have learned about the possible cures and better management that is HOPEFULLY going to be available within Allison’s lifetime. (Some of this language is technical – I am not a medical professional so kept them as I found them because I don’t really know how to explain in laymen’s terms yet!)

To "cure" type 1 diabetes, a therapy would either have to replace the beta cells that have been destroyed and prevent further beta cell loss, or closely mimic the normal insulin producing function of beta cells in a way that does not require constant management. Another way to think of a "cure" is that it would either prevent diabetes from ever happening, halt it in its very early stages, replace lost beta cells, or make up for lost beta cell function without placing additional burdens on the person with diabetes.

Four approaches known as immune therapeutics, islet transplantation, regeneration of beta cells, and the artificial pancreas could potentially achieve these goals. Here are those potentials:

1. Immune Therapeutics

The goal of immune therapeutics is to modify or modulate the immune system in a way that prevents the destruction of beta cells. This type of approach address diabetes at a cellular level, attempting to "cure" the root cause of the disease: the immune system's components are not functioning the way they should. Several approaches to immune therapy are being developed. These include diabetes vaccines, as well as drugs that target specific components on the immune system response in an attempt to shut down ongoing beta cell destruction, and reinitiate the normal mechanisms that prevent the immune system from destroying healthy parts of the body.

Unfortunately, recent developments in immune therapy have not been encouraging as several recent trials have failed to show adequate efficacy, both for vaccines and for immune modulating drugs. Nevertheless, research in this field continues and several clinical trials are still ongoing.

2. Islet Transplantation

Islets, found in the pancreas, contain a number of different cells, which produce hormones involved in controlling blood glucose levels, most notably beta cells. Islet transplantation replenishes lost beta cells through an infusion of islets from another source, which using today’s technology involves using islets from a deceased donor. Deceased donor islets are not available in large numbers, substantially restricting the number of transplants that can be performed each year.

Islet transplantation is a potential cure in that the transplanted "new" islets will work in place of destroyed ones. In fact, estimates suggest that over two-thirds of people who receive islet transplantations no longer require insulin injections one-year after the procedure. The procedure works well and lowers insulin dose requirements or removes the need for injectable insulin entirely. Unfortunately, this treatment is not long lasting, and five years after transplant, only 10 percent of people are able to remain independent of injectable insulin.

The biggest risk of islet transplantation is the accompanying immune suppressive therapy, which is necessary to prevent rejection of the transplanted islets just as it is necessary after transplantation of any other organ from an unrelated donor. Immune suppressive drugs have many side effects, including damage to the kidneys, and an increased risk of infection.

Many companies and academic researchers are trying to develop new methods to generate beta cells for transplant (in order to circumvent the limitations of small numbers of deceased donor organs).

3. Beta Cell Regeneration and Survival Therapies

In light of the challenges of islet transplantation, the discovery of ways to stimulate new beta cells to grow within the pancreas of people with diabetes, and protect their health and survival would represent a major leap forward.

If successfully developed, drugs that stimulated beta cell regeneration could be used for any person with type 1 diabetes as a means to restore beta cells and regain independence from insulin therapy. They may also halt the progression of type 1 diabetes in people in the early stages of disease, by (ideally) stimulating an increase in beta cell numbers beyond that necessary to compensate for loss due to immune destruction.

Animal research has provided scientists with useful targets for development of regeneration therapies. In addition, considerable attention has been turned to the use of incretins (a group of drugs that includes two classes approved for the treatment of type 2 diabetes). Basic research in animals indicates that incretins can help beta cells survive longer and regenerate more readily, giving them the potential to ameliorate type 1 diabetes.

4. The Artificial Pancreas

The artificial pancreas (AP), though not a cure for diabetes in the traditional sense, is an extraordinarily promising technology. The AP is an automated device that tries to reproduce the function of a normal pancreas by delivering the right amount of insulin (and maybe other hormones) to maintain normal glucose control. In the AP, a continuous glucose monitor (CGM), and insulin pump, and a control algorithm work together to do the pancreas's job. A truly "closed loop" AP would require no intervention from the patient, while an "open loop" would require some intervention. We see the AP as a bridge to the cure for diabetes but, using technology similar to that currently developed, not a true cure by itself.

One of the biggest problems facing the development and use of an AP is that varied sleep patterns, exercise, diet, and stress can all influence blood glucose, and can be very difficult for current technology to handle, often leading to under or over pumping of insulin. Increasingly sophisticated algorithms, more accurate CGMs, and faster insulins are all being developed to address these problems. In addition to technological hurdles, regulatory caution has slowed the implementation of some new technologies in the U.S., and may prove to be a significant stumbling block in the path to developing a workable AP.

Although the technical and regulatory issues have yet to be solved, an AP system operating in even a very broad target range while presenting a low risk of hypoglycemia could yield enormous A1c benefits.

While movement is slower than anyone would like to see, the progress toward finding a cure for type 1 diabetes is exciting and ultimately HOPEFUL. Though development may take many years, several may one day be an option for curing those like Allison with type 1 diabetes. Keeping your eye towards legislation and helping funding are key to progressing these things and ensuring those that will benefit from these options are given them in a timely manner.

Until there is cure,

Jennifer

HOPE - a four letter word with so many meanings............

November 21, 2011

Another exhausting long day – oh yeah it is a Monday that is what they are for! My day started early with me rushing out the door at 5:30am with a quick stop for my cup of coffee and a donut (not realizing this is all I would put into my body until now I should have opted for a bagel!) I did get to refill my coffee upon arrival at work and then I started running, literally, from one meeting to the next until I rushed out of the last one to get to my son’s Cub Scout Pack meeting where I had to wrangle my scouts and work one of the rotation stations – luckily I got the “easy” one where each scout did a card for themselves to read on Thanksgiving – “I am thankful for…..”

It was during my exhausted state of being at the Pack meeting that I realized today’s theme for my blog – no not what I am thankful for (saving that one for Thursday!) - tonight turned out to be about HOPE! 

Not the HOPE for a cure or better medical/insurance coverage for everyone – I HOPE for those things all the time - tonight was about the reason I am writing a blog a HOPE for awareness and understanding. While I was walking about chatting with parents I had A LOT of them say to me – “I have been reading your blog.”

Wow there is HOPE – hope that I am making a difference – so many people tonight gave me that HOPE with those simple words. They approached me and talked to me about things – diabetic things and issues in my life. They talked to me about their favorite blogs, what they learned, the people they know with diabetes – it was amazing. My pure exhaustion and lack of food intake didn’t matter anymore – there was HOPE. People are realizing what type 1 diabetes is and how it affects our family and others around the world. Maybe I am only impacting those in my little part of the world but HOPEFULLY they will spread it to their little worlds and those people will spread it to their worlds and so on and so on. The purpose of my blog after 21 days was really showcasing itself tonight and so was HOPE!

While writing the blog I have been emailed by a few people and today was one of those days where I received an email from a friend of my in-laws that is also a type 1 diabetic. She gave me a great deal of HOPE – for all things diabetic but also that she was also reading my blog. She was taking her time to see another’s struggles with this disease and took the time to write me the most lovely email today – a day of HOPE for another to share their story.

So there is HOPE that people are taking the time to learn about my family and talk about it to me and to others. There is HOPE for funds - a handful of people asked how they donate directly to Allison’s team for her ride already or said they would help with the next fundraiser. There is HOPE that the kids at that meeting are going to learn from their parents that you are never too old to learn something new. There is HOPE that my friends and support system work!

The word HOPE dangles from my daughter’s emergency bracelet – why - because we are continuing to HOPE for a cure and continuing to HOPE for a better and greater understanding of this disease. Tonight I feel like maybe we are succeeding in securing the HOPE for that better and greater understanding.

Now let’s get to work on the HOPE for a cure!!

Until there is a cure,

Jennifer

From Our Special Guest Bloggers - Allison's Grandparents........

November 20, 2011

Today a special blog pinned by Allie's grandparents:

As Allison’s grandparents, we are very proud and impressed by the courageous way she is handling her diabetes.   She has become so adept at testing, counting carbs, and giving herself her own shots – we are amazed.  Allison also displays an uncanny sense about the seriousness of her diabetes.  She’s well aware of the food she eats, when she eats and that she must eat all that she says she will eat.  No small feat for a child!   We think she displays a maturity way beyond her tender 7 years.  We’re not sure very many adults would be able to handle her situation as well as she does.

When first learning of her diagnosis, we were alarmed, scared and definitely uneducated.  In six short months we are learning a lot, trying not to be quite so alarmed and scared.    Can’t help it but we do worry about her a lot and think of her daily.   Chris and Jennifer have been super parents in our eyes ever since Ryan was born, so it came as no surprise to us to see their blogs display their powerful commitment to being loving and caring parents.   We are pleased also to see how Ryan and Sammie are always there for their sister.  We have seen first-hand how they show their concern and how much they admire Allie’s skill at testing and shot taking.  There’s no display of annoyance or jealousy – just a sincere caring for their sister.  These positive attitudes of course, are the influence of Chris and Jennifer.  They are to be admired for having the whole family comfortably on board to learn about and deal with diabetes. 

As parents you never cease to worry about your children.  We worry about our son, Chris and worry just as much about our daughter-in-law, Jennifer.  We worry that they aren’t getting enough sleep, that their emotional state of mind is holding up, that they are staying healthy for their kids.  We are comforted with the fact they are truly and always there for each other.    Since we’ve not been in their shoes, we can only imagine the internal angst of sugar highs, lows, pump, no pump, how many carbs here, how many there, too active, not active enough, etc…….

It is also heartwarming to see the support of their community.  We have met nurses and teachers at Allie’s school and are so pleased to see how concerned and watchful they are for our little Allie.  She is so precious to us and we are happy to see she is to others as well.   She is lucky to have so many wonderful friends who will be ever watchful.  Grandpa tells a story of riding in the car to a soccer game with Jennifer, Allison and one of Allie’s soccer friends.  The friend told Allie she had a piece of candy in her pocket for Allie if she felt low!   It’s also awesome to see Allie’s wide variety of interests – she loves sports and we love to watch her play.  She’s an artist – loves to draw and create.  She also is a dancer. Wow!  All these things wrapped up into one little beautiful 7 year old granddaughter.  She’s not letting diabetes dictate what she can and can’t do!  Good for you Allison!

We are hoping for a cure for Allison and everyone else who has been stricken with diabetes.  We love her to bits and we think her future will be bright.  It would be even brighter if there was a cure.  We are looking forward to our next visit and seeing Allie run out to our car with her big blue eyes and million dollar smile ready with big hugs for Grandma and Grandpa!

Her grandparents,

Kate and Dan Holdgreve

A Conversation With Ryan About Diabetes........

November 19, 2011

All day I have been thinking about what to write today – a whole month of thinking and talking about diabetes and how to express our lives now has been daunting. In an effort to continue hearing from the rest of our family we posed these questions to our 8 year old son Ryan – he was born 13 months before Allie and when they were toddlers looked like twins!

Ryan and Allie have the usual brother / sister issues but generally get along really well and seem to enjoy each others’ company most of the time! One of my first blogs was about Ryan and his support of Allie and diabetes research so I thought now might be a good time to hear a little more from him. Get him going about Star Wars and he might talk your ear off – he was a little more hesitant to get into too much about his sister’s diabetes but here is what his Dad got out of him during a father / son drive to get some ice cream tonight…

The first time I heard that my sister had diabetes I thought  -- what is diabetes? Will she be ok? Will I get it? I really did not understand so I was not too worried – but as I learned more I got more and more concerned about my sister. Mom sent me a picture from the hospital with all of these tubes in Allie’s arms and they joked that she was being turned into a Clone Trooper – I thought that was funny…and that it would be cool if true!

The hardest thing to have a sister with diabetes is – keeping an eye on her to make sure she is ok – I did not realize until later that people can die of type 1 diabetes which made me very scared, but that helps me to remember to keep a close eye on her when I am around and get to mom and dad or another adult right away if she starts acting weird or falls down (unless I accidently tripped her – then I see if she is ok and beg her not to tell on me!)  

How has my sister’s diabetes has inspired me…when I think of Allie and how she handles the diabetes I think one word…Wow…she is my goofy kid sister but, and don’t tell her I said this, she is pretty amazing. I enjoy thinking up ways to support diabetes research because I really want to find a cure soon for Allie. I am doing a bake sale, have participated in a walk, will do a bike ride next year and have worn a diabetes support shirt with my diabetes awareness ribbon every day this month (diabetes awareness month). Thanks to the folks at ADA for giving me a bunch of shirts so I didn’t have to wear dirty ones or have mom do laundry every day! I want to keep doing things to raise money – the research is cool – I went to hear a researcher talk about the “artificial pancreas” which would be great in helping Allie manage her diabetes. I want to do my science fair project this year on it!

What do you think of the shots she has to take…YIKES! I hate shots and can’t believe she has to do this 4 times a day – more if she wants a high carb snack we didn’t account for! The blood sugar testing is weird too – odd to see my sister have to make herself bleed.

Our life is different now in these ways – I have to always keep an eye on Allie no matter where we are – eating out can be frustrating for mom and dad as they use their phones to try and find the carb counts for pizza, mac and cheese, corn dogs, and any number of other things she eats – I feel bad that she can’t just eat a piece a candy whenever she wants.

Dad relayed that after Ryan’s concern for his sister he is really worried about also getting diabetes – he sees how Allie has handled it but is not confident he would be able to handle it as well (especially the shots and the eating challenges) – of course Allie would have said the same thing prior to diagnosis but as we have learned you accept your challenges and adapt.

To say we are very proud of Ryan is an understatement - he has taken on this family challenge head on and we hope his unwavering caring for his sister continues as well as his dedication and support for diabetes research.

Until there is a cure,

Jennifer

We Are Not Alone In This.........

November 18, 2011

I not only write a blog about being a parent of a type 1 diabetic I read a lot of other blogs about and by other diabetic families – I found this one back on World Diabetes Day (Nov. 14) and I has stuck with me. I think of my daughter one day on her own being a diabetic in the world and what can happen and pray that she is able to handle herself in these situations.

I suggest you also read some other blogs by other diabetic families and persons – you will, like me, learn a great deal and start to get a better understanding. This month has been eye opening for me in the world of diabetes – I hope some of what I have put out there has had an effect on those that are reading my blog for a better understanding of the disease and our family dynamic.

Here is the blog that has stuck with me that I read from the Six Until Me blog on November 14 for a glimpse into a type 1 diabetic that is on her own: (http://sixuntilme.com/).

BEEEEEEEEEEEEP!

I reach over to turn off my alarm, only to realize that the noise is coming from the Dexcom receiver, buzzing away in the glass on my bedside table.  The alarm clock doesn't look familiar.  The blinds covering the window are swaying from the heat being pumped into the room.

And then I remember that I'm in South Carolina.  And I'm in a guest room.  And I'm alone.

I know I need to do something.  I'm just not sure what.  I click my thumb against the Dexcom receiver button and see "LOW."  No numbers; just words.  And then I fall back asleep.

Minutes pass like months, and the Dexcom beeps again.  I reach for my glucose meter and load a test strip into it.  It gives a little beep of acknowledgement.  And I fall back asleep again.

Am I sleeping?  Am I drifting in and out of consciousness?  I can't tell.  I just know that the pillows are damp from my low-induced sweat, but they feel so comfortable. Closing my eyes is the only thing I want to do, despite the tiny voice in the back of my mind, screaming at the top of its lungs:  "Drink the juice." 

Another lifetime passes by, and I remember licking the blood off my finger after testing, but I don't recall the number on my meter.  My brain isn't thinking rationally.  I can only think in short bursts of sentences, most of them imperative, regressing my internal monologue to that of a Neanderthal. 

"Get juice.  Drink juice.  No sleep.  Stay awake.  Hold bottle to face.  Drink." 

I drink it.  The room starts to come into focus.  I remember that I'm at a friend's house.  I remember that I am meeting with people that morning.  I remember my name, and that I have diabetes.  These memories come back to me in lightning bolts of realization.  The juice bottle in my hand is empty, and my shirt is damp from sweat. 

"Ew," I say to myself, running my fingers through my hair and shaking loose the ropes of ponytail that have slicked themselves to the back of my neck.  But I'm still not back, still not sure.  What happened?  What almost happened?  I think about Chris.  I think about Birdy.  I think about how far away I am, and how far away I just was.

Today is World Diabetes Day.  As many as a million people are living with type 1 diabetes in this country.  While so much progress has been made in research and advocacy, community and technology, this disease still lives with us every day.  And every day, we work tirelessly to keep it from gaining the upper hand. Some days are easy.  Some days are hard.  But no days are off.

Diabetes never rests.  And neither can we.  We must act on diabetes now.

The alarm clock goes off.  It's time to wake up.  Only I'm awake.  I'm wide awake.  

Until there is a cure,

Jennifer

The History of Insulin (a life line for all Type 1 Diabetics).......

November 17, 2011

In an effort to maintain my sanity today but maintain my promise to post every day in November something for Diabetes Awareness Month – I am reproducing a great article for my blog on an essential item in our lives now – INSULIN.  Allison’s new life line – without it she would not have one. While insulin is a great invention and wonderful tool to keep Allison healthy it is not a cure – it is a management tool. Enjoy this well written article by Timothy Gower a medical freelance writer about the history of Insulin and how it came to be a part of our lives!

The modern age has been full of amazing technological advances -- high-speed travel, the Internet, blue M&M's... However, if you have type 1 diabetes, you are no doubt a big fan of one particular 20th century innovation: insulin therapy. Before there was insulin therapy, people whose bodies stopped producing the hormone didn't hang around for long; there wasn't much doctors could do for them.

In the 19th century, after researchers figured out that the body needs this critical hormone to burn glucose as energy, doctors tried different ways to restart production of insulin in people with type 1 diabetes. Some physicians even tried feeding fresh pancreas to patients. The experiment failed (and probably left more than a few patients begging for a palate-cleansing sorbet), as did the other attempts to replace missing insulin.

Finally, in 1922 a former divinity student named Dr. Frederick Banting figured out how to extract insulin from a dog's pancreas. Skeptical colleagues said the stuff looked like "thick brown muck." Banting injected the insulin into the keister of a 14-year-old boy named Leonard Thompson, whose body was so ravaged by diabetes that he weighed only 65 pounds. Little Leonard developed abscesses on his bottom and still felt lousy, though his blood sugar improved slightly. Encouraged, Banting refined the formula for insulin and tried again six weeks later. This time Leonard's condition improved rapidly. His blood sugar dropped from 520 mg/dl to a more manageable 120 mg/dl. He gained weight, and his strength returned. (Poor Lenny -- although his diabetes remained in control for years, he died of pneumonia when he was just 27.)

Banting and a colleague, Dr. John Macleod, won the Nobel Prize for their work. Commercial production of insulin for treating diabetes began soon after. For many years, drug companies derived the hormone using pancreases that came primarily from stockyards, taken from slaughtered cows and pigs, which didn't need the organs anymore.

Animal insulin has saved millions of lives, but it has a problem: It causes allergic reactions in some users. In 1978, a fledgling biotechnology company named Genentech produced the first synthetically manufactured insulin that could be made in large amounts. Using bacteria or yeast as miniature "factories," the gene for human insulin was inserted into bacterial DNA. The result was human insulin, called recombinant DNA insulin, which did not cause the problems that animal insulin sometimes did.

When it became widely available in the early 1980s, this new insulin changed the treatment of diabetes forever. Today, every Type 1 diabetic relies on this drug to keep them alive and maintain a healthy life and almost all those use a form of recombinant human insulin rather than animal insulin.

Until there is a cure,

Jennifer

Today We Celebrate Our Families Strength.........

November 16, 2011

Today is my favorite person in the whole world's birthday - my wonderful husband Chris. As much as this blog is about diabetes awareness and our families struggles and thoughts - we cannot, and will not, forget to also celebrate those people and days that mean so much to us!

As any family with any type of medical issue knows support from your family and friends is essential and I am so grateful to have that, but I have found that my sanity has remained during all our struggles and sleepless nights because of the strength I get directly from my husband.

When his daughter was diagnosed in May he had a world of issues on his plate with work, volunteer issues (which are numerous) and a scheduled trip to Chicago - he altered his plans and with no sleep for those days accomplished everything he had promised to others as well being with us as much as possible. He took on the car rides back and forth from our home to the hospital that week and we live an hour and a half away, not the easiest trips on no sleep. He never complained, he helped wipe away tears and confusion and had a smile and hug for everyone every time you needed it. Chris' constant grounded approach to what was going on around us that week and since has made it work for our family. His ability to calm any situation, make you laugh even when you want to cry and just know when to hold your hand or give you a hug has been indispensable.

For those of you that you are lucky enough to know him you already know that it is his strength of character our kids and I are clinging to during our new challenges. Our kids see firsthand how he just chugs along - shoulder's all the responsibility, let's things roll off of him and pushes forward. He is always looking at what is ahead knowing what is behind is just that - in the past - let it go and look at the bright future ahead of us.

If you haven't read either of the blogs I posted during this awareness month that he pinned (What Do You Want To Be When You Grow Up and Diabetes Through Allie's Dads Eyes) - take the time today and get a glimpse into this amazing person's strength.

Allison is the one carrying diabetes inside her, her brother, sister and I will carry that on our shoulders for her as much as we can - but her dad, my husband, definitely takes the largest load for her and our family in relieving everyone's stress and making it all better for us in anyway possible. I hope that one day I can be half the person that he is and that my kids know that being just like their dad when they grow up would be an asset to the entire world and to them!

So join me in celebrating this day and wishing a big happy birthday to the best Daddy, Husband and Person in the World!

Happy Birthday Chris!!

Until there is a cure,

Jennifer

Diabetes will not define us...........

November 15, 2011

Last week we went for our all important three month check of our A1C numbers and a heavy dose of looking at our daily numbers and our nutrition. As a diabetic your A1C number is this grand number that tells you really what is going on with your body – and you can only get an idea of how things are going every three months. Your daily numbers, while important to ensure that you are getting the right amount of insulin and not dropping into scary lows or really high highs, don’t tell you the whole story – that is what your A1C is for. These appointments are a necessary but not a favorite part of my life.

I would have guessed last week going into our appointment that Allison was headed out of her “honeymoon” period – but I was really WRONG. Her A1C showed that she was still right there in it. I guess either 1 – I am too new to diabetes to really understand what is really happening to her or 2 – I just don’t get it! Oh those are the same things – and after the appointment I realized how much I don’t get a lot of things yet – I am still no expert at this and I questioned a great deal if I will ever get it.

The night before our medical appointments makes me really crazy. I find myself running around making sure my long chart of numbers (an excel sheet all worked up with her numbers for each time she pricks her finger, organized by time, carbs and insulin amounts in rows so you can compare similar times of day) is all organized and filled in. However I missed some numbers, forgot to right them down when we are out and about – nope I am not perfect after all (yes that bothers me a great deal)! I will sit there and stare at the empty date and time for dinner or lunch and try really hard to remember what she ate and did that night. I realized that remembering anything is too much for my brain right now – the space is gone it is all taken up with how many carbs are in what servings of everything we eat! I finally give in and get it all organized and printed out (with some empty slots) and put our big binder together that I carry around to our appointments like my bible.

I am always so nervous about these appointments. Allison never seems nervous. We spend about an hour with our nutritionist – learning what we are eating isn’t exactly what we should be and coming up with ideas for snacks and alternatives when she is high. We know and hear that she needs more proteins and that if we could squeeze in some more vegetables that would be great. But, our nutritionist never forgets to say that we are doing a great job and Allison is a 7 year old kid and should act like one – so keep reinforcing good habits and eventually they will kick in and get better. The scary thing about this is that Allison is by far our best kid with her eating habits (I start to feel bad about my other two kids - at least I don’t have to tell her what they eat!)

We then spend over an hour with our diabetic educator – the person that keeps us on track – that is always there via email or phone – pretty much any time of day no matter what – our life line to sanity. We go over Allison’s A1C and what a surprise - she is still in her honeymoon – after 6 months a little surprising but that is a great thing apparently. We go over my exhausting list of numbers (just the past two weeks) she asks if we are getting any sleep (which is funny!) and then move into any alterations that we might need to make to her insulin regimen. Only her long term insulin gets changed and VERY little. Her numbers - while I see HIGHS - they see an A1C that is low and more daily numbers within the target range than out of it so we are apparently right on track.

At that moment I realize I really don’t understand any of this – I have been worried out of my mind about everything and now a feeling of being overwhelmed encompasses me. I think because I had something in my head that wasn’t there – I worry so much every day, all day, about numbers and insulin and carbs and now I am being told that it all looks great. It didn’t look great to me - just reinforcing in my head that apparently I still have no clue what should be happening daily with Allison’s numbers.

We then start talking about a PUMP. A PUMP – my mind is still in a state of being overwhelmed and we are now talking about a pump. Are we ready for one – a big yes comes out of my mouth (not sure why) and Allison perks up and really starts to listen. No more night time shot in the butt with a pump – her very least favorite part of having diabetes would be taken away from her – YES she wants a pump. We are then handed a test and told we will have to take about 5-6 classes, depending on how we do on the test.  We will have a trial on a saline and have to make decisions on the type of pump (depending on insurance), etc, etc, etc, etc, etc, etc, etc – at this point listening is out the question for me. I was thinking about the test – really – no one gave us a test before they let us take her home as a baby. So you can have a baby and expect to be able to do it all but you can’t get medical treatment without taking a test? Luckily the test is easy for us – it is used to gauge your knowledge on the subject of insulin and carb counting – apparently I know more about those things than I thought – maybe I do get it? By this time though my mind is even more filled with pressures and questions (that is what the classes will be for?)

I left the appointment feeling overwhelmed and like crying all the way home – but like all parents I pretended like it was all good. My outside persona -- Just do it! We will tackle this and move forward like we always do – that is the Holdgreve way of doing things. (Maybe we should be a Nike ad!) I put on my face and outside that we are stronger than this disease. As I walked out of that appointment I felt like diabetes was beating me. I don’t understand it – I felt I never would – I felt defeated.  That was probably not the intention of any of medical team – because everything was great – but that is how I felt. I talked to Allison – she was great and excited and realized that SHE IS stronger than this disease – so I hold back my tears and move forward.

The ride home is one of my other blogs – you should read it – my feelings of being overwhelmed made me write that blog – there is something better and it will get better and we will get through this and we ARE stronger than this silly disease – it will not conquer us. (The Beauty Around the Next Corner......)

When I feel like I did then I am going to try to hold tight and try to see this through my daughter’s eyes. I am not the one carrying this disease inside me – she is - and she does not let it stop her or slow her down.  She is human and like all of us – she has her moments - but they are so far and few between. I take solace that I am raising strong children that support each other so fully as a family. The Holdgreve’s we will fight and fight and even if we get knocked down and feel out we will pick each other up, dust ourselves off and start again.

I still feel overwhelmed frequently and like crying at times - like now – but I am going to pick myself up, dust myself off and go pick my kids up from school and get on with our lives. We will not let this disease define who we are as a family – our strength and character will do that for us!

Until there is a cure,

Jennifer