Ok - I have other children too . . .

I realize that I post mostly about Willow - as her Diabetes sometimes really seems to consume my life . . .

But today was such a special and big girl day for my middle daughter - Ava!!! She started Kindergarten and was just super excited. She is one of those fortunate kids who had to wait an extra year for school bc the cut off was Sept 1. Well her birthday is Sept 29th so she will likely be one of the oldest kids in her class.

Although there were times last year I wished she had gone to kindergarten, knowing what I know now with a 3rd grader too . . .I am so glad she got an extra year to be young, playful and carefree. She does not realize it as of yet - but kindergarten is not like that of when we were young. I remember kindergarten as this carefree environment of play . . . In Ava's class - there is only a small corner of "play" items. I remember this from Willow's kindergarten year. It was very little play, barely enough time to go outside. But lots of reading, learning letters, phonics, early math and a stringent curriculum that keeps them busy for the 6 hours a day.

Willow has fond memories and I think the teachers do the best they can to make lemonade out of a curriculum of lemons . . .her teacher is warm, and caring and our school is small so like a little family.

All I know is that when Ava went to bed tonight- she was glowing with anticipation for tomorrow. She asked what the lunch menu would consist of and would be up in time to catch the bus. She is so excited, so ready and so full of wonder . . .I hope it lasts!

I'll post some pictures when I get a chance . . . I am so excited for her! And a little sad too . . .my babies are growing up! :(

Willow's first D camp and 1 yr reflections

It's been quite a while since my last blog. Willow was dx 1 year (July 22, 2008) and is now 8 and wearing an Animas Ping Insulin Pump. Over this past year I have learned so much about Type 1 Diabetes. One year ago I was agonizing over getting enough food in this little body but not too much to spike her blood sugar. Daily I was balancing between mom, nurse and student . . .learning how to care for my child who was now going to live the rest of her life with a manageable yet frustrating condition. I read everything I could get my hands on, I joined every online community seeking support from other parents, I called her endo's office almost daily, faxing numbers and always trying to stay a step ahead but feeling like I was 5 steps behind. In the beginning I felt so frustrated with food, exercise, shots and the unpredictablity of her bg numbers. I was constantly worried that another minute with a high blood sugar was going to damage her little body. I lived daily to keep my baby safe in whatever way I could and with D - well sometimes all your efforts are discounted.

I thought when people asked how Willow was - that they wanted to know about D . . .I learned quickly that most people were just fine knowing what they have learned from TV commercials branded by Liberty Mutual and Wilford Brumly. I soon realized that it did not matter if most parents thought I was doing it wrong - I knew that I was doing everything in my power to keep her healthy and strong. I learned that most people , regardless of what I might educate them with, still believed that Willow has the same condition as their ailing uncle or aunt or grandmother. And at some point between then and now I conceeded to just let them think and believe what they wanted. It can be daunting to constantly educate people who really do not want to be educated.

I am amazed at the strength that Willow possesses daily. As frustrating as it is to reminder her daily to check, bolus, check . . .it is also really amazing that this little 8 year old is able to work a pretty complicated machine and literally take care of herself. This pump is truly an amazing machine. and it really has made such a difference in her care and in our lives. She wears is 24/7/365 but she would not go back to shots if given the choice. I know I have asked her. But the pump was not wonderful from the beginning. There was learning curve and all that being said - there were some glitches. We still have high numbers and we still have low numbers - the pump is not a pancreas that can think on its own - it still needs us to help it help her - but man it makes our life so much easier. Its funny too - I have had comments from well meaning bystanders like - " how does she hear it connected to her belly or arm? " I assume they think it is some sort of ipod. She is so proud of it and will quickly correct anyone who mistakes it for some random device.
This summer she also had the misfortune of coming across the beginning of discrimination . . .It was heartbreaking as a mother. There was a little boy at our pool who actually tried to yank out her pump site and ran around yelling that she was faking. Where was his mom??? Really??? And for weeks whenever we ran into him - he would tell her " you don't need that" " That is fake" " I;ve never heard of such nonsense" (yes he said that - and he was 7) She would run to me in tears telling me that he threatened to yank it out, he is calling her names . . .I finally found the mom and explained . . but that helped . . . a little - ignorance is all I can blame it on.

Up until this summer we had lived in a nice sheltered world where everyone loved Willow and never saw her as different. Her classmates last year embraced her, her teacher would have never allowed intolerance. As hard as it was to see her bullied - I know this is only the beginning. There is so little u

nderstanding of Type 1 in our society, let alone in WV. When we step out of our bubble - we find that the majority of people will stare, make comments behind our back and a few will make comments or suggestions right to our faces. So we perservere, we educate, we live . . . and she knows she is loved!

Her latest appointment to her Endo revealed a great A1c - 6.9 - that is truly a wonderful number. It proves our hard work is paying off. And some days it really feels like hard work . . .but most days it is just our life . . .it's our normal . . .

This past spring we participated in our first JDRF walk. Thanks to our wonderful friends and family- we raised over $500.00 for research toward finding a cure. It was a really empowering experience. In our small area - there were 150 kids with Type 1 represented. Overall our chapter raised the most $$ nationwide for a fully volunteer based chapter. I guess that means that some areas raised more $$ but they also have full-time and part-time paid staff who advertise . . .so . . .

This summer Willow participated in her first Diabetes Camp. The pictures in this post were of her at camp. For the most part it is like any other sleep away camp - but all the kids there have Type 1. So for a week - she was not the odd one - she was "normal" All her friends had to check their bs at meals and throughout the day, many of them had pumps just like her, and for a week she was with people who understood! I think this will be part of her summers for a while now . . .
It was hard for me -she was gone for a week and as much as I should have relished in the break from D management - I missed her and hated that I could not talk with her everyday. But I also knew that it was a great thing for her and was so glad that we were able to give her the opportunity. Her cabin was filled with 14 girls from around the state who were all ages 7-8. 14! If there were 14 there -there are even that many and more who did not come to camp. It amazes me everyday that this condition affects this many young kids. There were also cabins for boys and girls 9-11, and 11-15. Then all the counselors also had D. and most of them had been to camp at least one year in the past - depending on when they were dx. Think about a camp of 200 kids and about 50 staff all with Type 1 Diabetes. And this only represents a small % of the population of Type 1.

Willow also began swim team this year. We belong to a local neighborhood pool and for 8 weeks in the summer they practice and meet every Wed at the other surrounding neighborhood pools. Willow was not a really strong swimmer at the beginning of the summer. In fact she could barely swim a length of the pool without stopping and holding on the wall. By the end - she was diving from the starting block and had imporved her time in freestyle by over 10 seconds. Wow in 8 weeks I was so surprised in how she improved her skills and strength. And it is such great exercise! She loved it and we hope to continue swimming throughout the year.

Reflecting back a year before dx - she could barely jump in a pool without getting worn out, she hated the beach, her energy was down, she was constantly thirsty, irritable and always had dark circles under her eyes. What a difference dx and a year of insulin can make . . . If you look closely, you can see her pump attached to the side of her swimsuit.

So I have not blogged for quite a while. Since the last update - we have ventured into pumping!! Big stuff here! Willow is very excited about it. But it does not come without some trial and error! As you can read in my previous posts - diabetes in itself is a 24/7ordeal. We check, dose, eat, check, eat, dose, measure, dose, eat, eat eat - bc the last dose was too much . . .Its like having a scale and no matter what you put on each side - you never get it to equal out - so you just keep moving items from side to side, adding some more, taking some away and are constantly trying to find some equilibrium . . .but it never stops . . .



Here are some of the latest sewing projects that I have made to make this pump thing more do-able and kid friendly. As you can see from the one picture - I have made a belly band of sorts that keeps the pump and tubing close to her and concealed under her clothing. She really seems to like this even better than the pouch thing in the bottom picture.

So to fully understand . . .the pump in theory is supposed to act more like an actual pancreas . Giving insulin 24 hours a day in small doses (called basal) which mimics what a healthy pancreas does. Then at any meal, snack, or grazing (as children do!)we program the number of carbs and it calculates an amount of insulin called a bolus that will cover the food. Additionally, we can lower her basal when she is more active, or increase it when she is less active . . .because the body acts in different ways throughout the day - the pump allows for a much more personalized insulin regimen. This all sounds wonderful - in theory.

Well we area having issues figureing out her basal schedule and her sensitivity to insulin. It seems that in the morning she needs more insulin for meals than she does at noon or afternoon. It is quite a learning curve and we have already snagged the tubing on her jacket which pulled out her site . . . Hence the making of the belly band . . . Oh the site - well every 3 days we should change the site. After that amt of time, there is an increase in the possibility of infection at the site, occlusions are more prevelant and scarring under the skin can happen. But what if the site comes out sooner?? Well then you have to change it then too. Or if the site is painful or you notice that her blood sugar numbers are higher than normal for too long - an indication that the site is just bad. The insertion device or infusion set can be quite scary. the needle is longer than a syringe needle and it makes a sort of popping sound when you insert. I had to wear one myself for a few days to prove to Willow that it was not so bad. She was not quite as convinced still. Yesterdays site change was the first that she did not squirm. If you look to the picture on the left you can see the site on her abdomen. She likes the tummy - but we need to rotate. She tried the bum this weekend - but it hurt and did not absorb the insulin so her numbers were too high. We had to change!

Overall it is going really well and she is liking the ability to eat when she wants and not eat when she does not want to and no more shots! We are lucky to live in a day and age when this condition does not lead to immediate death or serious complications and that although we have daily lots to manage - she has a bright future!

So here we are . . .

more than 3 months into a caring for a child with Diabetes.

The picture to the right is Willow a few days before diagnosis! She looks happy and relatively healthy. It's hard to believe that a child can be so sick and you just don't see it!

You could say that we are doing really well . . .We had our 3 month visit to Duke for Willow's first real check up on how we are managing her diabetes. In the past 3 months we have mostly been in a full on honeymoon. Meaning that most days are pretty stable with the occasional swing to a really high BG or a really low BG. I have learned a whole new language. BG (blood glucose), BS (blood sugar - essentially the same as BG), ISF(Insulin Sensitivity Factor - how much your BG comes down from 1 unit of insulin), I:C ratio or ICR (Insulin:Carb Ratio - How many units of insulin you should take per how many carbs you eat). We speak these things daily. We have taught Willow to look at her cereal box, count the carbs on the side and figure out how much carb she is eating at a particular meal. We have gone from complete carb counting for insulin delivery to a sliding scale (not to confuse some of you) but now we just give insulin regardless of what her carb intake is . . .this will be somewhat short lived - as her body comes out of honeymoon and depletes it's own insulin stores and the beta cells finally stop all together we will have to go back to carb counting.Understand however, that carb counting is not the same as eliminating sugar! In the days past Diabetics were told that sugar was a NO NO!! Why - well the pancreas no longer was able to produce insulin to open the blood cells to take in the sugar they ate. So to eliminate all those high blood sugars - they just stayed away from them. We are in a new world of technology . . .Diabetes management is complicated - but has come so far and as chronic diseases go - this is probably the most hopeful one to have. Diabetics today can usually live as long as most individual with little to no complications if managed well. And management for us is getting easier by the day.

Here is what we do 8-10 times daily. This little machine helps up to know if she can eat, what she should eat and if she needs insulin.

Willow still gets candy, cookies and fun stuff like all kids! Sometimes it is a bit tricky - and we have to wait until a meal time so that we can give insulin to cover it - but we TRY hard to let her be a NORMAL kid. We've gotten comments - belive me - " Wow - I cannot believe she is diabetic - she'd not fat!" "Don't worry - she'll probably grow out of it!" "Well we wanted to invite her over but my kids get to eat sugary stuff - I didn't want her to be left out - what can she eat??" From the older generation and those who are more accustomed to Type 2 diabetes - we often are told to NEVER give her candy or sugar. We should feel lucky they make so many sugar free foods now and more such damaging comments - but we just move on through and care for her in the best way we know how - with knowledge, understanding, trial and error and mostly LOVE.

Willow can also play any and all sports, sing in the choir, dance and cheer lead just like any other kid. And right now her idol is Nick Jonas - who also has Type 1 and uses the same BG meter that Willow does. The internet serves us with pen pals from all over the world who Willow can "chat" with since we do not know anyone locally her own age with D. So really and truly I feel like we are blessed with such support and opportunity. Yet still I long for the day that there is a cure and neither she nor her dad and aunt will have to rely on synthetic insulin to live. It's coming . . .we just don't know when.

We have MANY supplies - our hall closet which used to have our family games - now has 3 sterilite containers wtih supplies . . .test strips (the little white thing in the picture above), syringes, alcohol swabs, back up meters and in the fridge we keep several vials of insulin - Humalog and Lantus. Back to the language thing - Humalog is a short acting insulin that works when she eats - Lantus is a long acting insulin or a Basal Insulin which holds her BG at a steady rate over a 24 hour period - this is hopefully what will keep her from spiking too high on most days . . .

Soon we hope to be moving toward new technologies for Willow - and maybe Mark too . . . At our visit to the endocrinologist this week we met with the doctor, and educator and several Insulin Pump reps. When we met with the doctor we were so pleased to find that her A1c (an average BG over a 3 month period) It was initially explained that the A1c shows the sugar coating on the blood cells - sort of like the candy coating on an M&M. We want the lowest possible coating - so for non-D's we would see anything under 6%. At diagnosis Willow was almost 14% - NOT GOOD!! - And this week her A1c was 6.7. This is an AWSOME number. Even the doctor said that normally he target the A1c in children for about 7.5. He was pleased - but let us know not to be disappointed if future visits showed higher A1c's as she is still probalby honeymooning and her needs will likely change. The other dissapointing part - well many times insurance companies will not approve Insulin Pumps or CGMS if the A1c is within normal range! That is not good for us. The ins. companies look at numbers - not daily life of managing a child with diabetes.

So after our visit with the doc, we had an education session on using the pump and using a CGMS. (COntinuous Glucose Monitoring System) Basically this is a sensor that Willow would wear on her body and it would test her BG around the clock. It helps with middle of the night lows (which we frequently have), seeing trends on how different foods affect her blood sugars, and is hopefully will catch a low BS before it gets too low - like our 43 yesterday that she did not feel at all - but a few minutes longer and she could have passed out . . . or catch when she is going too high - and we can adjust her insulin right then. Unfortunately - many ins. companies don't think this is a valuable piece of equipment at all!! They probably are not caring for a child with D!

So then we met with the sales reps and Willow got to play with the pumps and pretend to wear one. She really liked the Medtronic Paradigm with a CGMS attached. I liked the Deltec Cozmore with the separate CGMS. We will be having 2 reps come to our home this week too to give us more detail about insurance coverage and all that good stuff and to really "Sell" us on their pump. The thing is there are many really good pumps some have the CGMS attaches - others separate - each with different pros and con's depending on the kid, or person using it. So here we are with many choices and lots of decisions to make in the next few weeks! Tonight the rep from Omnipod comes to talk to us. We will see . . .

Here is Willow about 2 weeks ago with Ava and Haleigh at the park!
Happy and Healthy thanks to Insulin!

Fall 2008

So it's been while since my last post and I have to say that this school year is going so smooth and wonderful. Willow just got her first report card and has straight A's. She has such a wonderful and supportive team of teachers and staff at her school. I have been learning as much as I can about Diabetes and how to manage her condition the best I can. Luckily there I have a "family of cyberfriends" at childrenwithdiabetes who are super knowledgeable and have helped me really understand some of the nuances of this disease.

Other than the diabetes side of my life - I have been busy with teaching preschool 2 days a week, and carting kids around for Dance and Brownies! Ava turned 5 on Sept 29th. She got a new bike (among other things) - since we ran over her other one last fall. It was lying down in the garage and well . . .Mark backs in when he comes home . . the bike never had a chance! We celebrated by going down to my in-laws and the girls got to ride the horses. Ava is not quite as confident on the horses as Willow - but she did enjoy herself. Willow finished up her first season of cheering. She says next year she wants to do competition . . .we'll see. Haleigh started preschool this year - she loves it! She loves that I am next door with the 2 year olds and I love that she is not with me for a few hours! The girls went shopping with grandma and picked out their costumes for Halloween. Willow is an American Idol/Hannah Montana rock star, Ava is Wonder Woman, and Haleigh latched onto this Beaver costume - it is really cute! We trick-or treated last night (for some reason Charleston, will not to T or T on Fridays. I guess because of the all the craziness of teenagers! Our home is now officially overflowing with chocolate and candy! This is by far my favorite time of year as the weather gets chilly and the colors start to change. We are in full color here and I am loving the crisp cool mornings where I can sit outside with a cup of coffee and watch my breath! (well for a moment until I have to wake up kiddos and get them ready for school!)

I am gearing up for election day next week . . .and then on to the holidays!

Two Months Yesterday!

Wow! Its been a crazy 2 months! And 1 month has been back to school! I have to say - it has been an easier transition than I thought. That is not to say that we have not had some rough patches - but then who doesn't? Willow was blessed with a fabulous teacher and a really great school nurse. I was a bit . . . ok REALLY anxious about her starting school and how they would be able to manage her blood checks and her food and her insulin. Well I have to say they completely stepped up to the plate and dove right in! The school nurse comes daily and will call if there are questions. We email daily any changes or concerns to each other. The teacher is completely willing to have Willow test her blood sugar in class and the rest of the staff have been as or more accomodating. I get weekly BS logs, and daily written notes from the teacher or an email . . . the school cook has special snacks and drinks just for Willow. (Usually the parent has to provide this stuff!) So that has been great. Willow is still cheering for another few weeks and the girls all started dance a couple weeks ago. We still struggle with activity making her blood sugars drop and occasionally we will have what is called an" adrenaline high" - where her adrenaline will kick in and actually make her blood sugar go WAY up when it should be dropping. ( at least that is how I understand it) It is really spooky - I usually do not give insulin before activity - unless her BS is over 250. But a few times it has been like in the low 200s at the start of cheering and by an hour later it is over 300 . . . I never know whether to give more insulin at that time - bc sometimes the body will kick in and other times it wont . . . Diabetes is still unpredictable and complicated - but the last month has been much less stressful than I anticipated! And we are getting along taking it one blood sugar at a time!

Who said manageable was easy?

To all my well-meaning friends and family - this is not intended to be hurtful - I just really need to vent! Since Willow was dx with T1 - I hear - thank goodness it is manageable. And yes - I am thankful for that . . . but . . .
Do you all really understand what it means to be "manageable"? When I met Mark many years ago, and fell in love and decided to spend the rest of my life with him, I had no idea that a few months later he would get really sick, lose 40 pounds and be diagnosed with Type 1 diabetes. I knew very little about the condition at the time. Over the next 14 years I have learned to recognize his low blood sugars, I have managed to make sure he does not forget to bring or leave his insulin any place we go. I have been his back up . . . but he is an adult and mostly can manage on his own. Now with a newly diagnosed daughter who is age 7, I feel like I am almost as diabetic as they are. I have seen the term Type 3 - regarding parents. Diabetes does not sleep, does not take vacations and does not go away. This is her life . . . not the one I would have chosen for her, but the one given to her. Willow is seven and her idea of life consists of cheerleading, dance, taking care of her virtual pets, and watching as much TV as her mom will allow . . . and sometimes sneaking in more. She loves popsicles on hot summer days, she loves to fly kites at the beach, she loves to see her hair done up like a princess and would prefer to live like one! She knows that before she can have ANY snack now she has to check to make sure she is low enough and if all her friends are snacking on the latest cool color of fruit roll up, she must sit back and watch. While her friends can have as much or as little at breakfast, lunch and dinner, Willow has carefully calculated meals and is expected to eat it all or at least most. While her sisters and friends get to stay asleep all night, she is woken up at least once just to have her blood sugar checked to make sure she does not fall into a coma while sleeping. When her friends get irritable, they might be tired or have had a long day, when Willow gets irritable, flighty, airy, hungry (not around meals or snacks), or just does not seem herself, someone needs to know to check her blood sugar. She is learning the feelings and the signs . . . but she is also sometimes really confused. Yes - it is manageable, but manageable is complicated.

Who would have thought that before a meal you need to check your blood sugar, count your carbs and then pull insulin to a sliding scale to match your eating and your blood sugar. Then if your BS was high before the meal you will need to correct it will additional insulin following a scale. The first few days I carried a calculator with me everywhere . . .today I am beginning to know . . . that a med. apple is 15 carbs, a carton of milk is 12, a chicken sandwhich is aprox 45 carbs (one of her favorites), and a hot dog is virtually none - but wait the bun is 20. SUgar, Honey, brown sugar, maple syrup, Karo, Agave, all about 15 carbs for 1 tbs. If she has 3 waffles for breakfast each with a 1/2 tbs of syrup - she will have consumed almost 70 carbs, and that is w/o a drink. We have come to LOVE cottage cheese, cheese sticks, pepperoni, deli ham as snacks for when she is hungry - but not in the BS range for a carb snack.

Next week Willow starts school for the 2008/2009 school year. I found out today that her principal just quit, the nurse will only be there 1 day a week and we will not have a meeting about her situation until Friday - school starts Tuesday. There is this document called a 504 plan which is supposed to hold some legal implications so that Willow can get a fair education. So that she can test he blood sugar in class and have snacks - when other kids might not be able to. So that she can have additional time taking tests. Who knew that a high or a low blood sugar affects your ability to reason, and make decisions? We also found out that when she is under stress (test for example) it can raise her blood sugar? Ugghhh . . . how do we keep this all under control? I have heard that in some schools children are told to go see the nurse when they think they are low. Who knew that leaving a child to walk unattended to the office when having a low blood sugar puts them at risk of hurting themselves? I have to have all this written out . . . I'm working on that . What if no other responsible adult will take on the role of giving Willow her Lunch insulin? What if they miscalculate? What if they treat her unfairly because they see her as a burden? What if imitrex did not just take away my migraine - but it prevented my head from exploding? It would be my life line . . . Insulin, food, and exercise are my baby's lifeline. What if someone forgets?

Yes Diabetes is Manageable . . . but its complicated!