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!