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!