Kailyn wants to walk to find a cure for Diabetes!

And so we will!
Here is her page.
http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=87725312

Kailyn Robie is walking with Team Kailyn on September 19, 2010 in Portland , ME.

Hi!! This year, I'll be walking with my family to try and raise money to find a Cure for Diabetes. I will be riding my bike with my brother Sam and my Mom and Dad will walk and push Keira. We have been practicing and I can ride even farther than 3.5 miles. I am faster than Sam.
Please help me by donating money, even if it is just a dollar, so that we can find a cure. I don't want to prick my fingers anymore all day and night or take shots and wear a pump. I do it because it keeps me healthy, but it would be really cool if I did not have to.If you want to come and walk with us you can. You don't have to donate money to walk with my family. Just come and have fun!!!
Thank you,
Kailyn

"Every hour of every day, someone is diagnosed with type 1 diabetes, the most severe form of a disease that annually accounts for more than $100 billion in health care costs in the U.S. alone. Usually striking before the age of 30, type 1 diabetes takes a harsh toll on people. Not only will they be insulin-dependent for life, but devastating life-limiting and life-shortening complications such as blindness, amputation, heart disease and stroke, and kidney failure are an ever-present threat. Insulin is not a cure for the disease it is merely life support."
"Type 1 diabetes is destructive both to children and to childhood. Controlling the disease requires 24/7/365 vigilance and imposes a grueling regimen. It includes eating a carefully calculated diet, checking blood glucose levels several times each day (by lancing a finger) and insulin injections as many as six per day or delivery of insulin through a pump just to stay alive. It means children and families living by the clock, day and night, for the rest of their lives lives that turn out to average about 15 years less than normal.

You can't outgrow type 1 diabetes. As JDRF International Chairman Mary Tyler Moore has said, "Diabetes is an all too personal time bomb which can go off today, tomorrow, next year, or ten years from now a time bomb affecting millions...one which must be defused." The only solution is a cure. That's why JDRF has a singular mission: to find a cure for diabetes and its complications through the support of research as soon as possible."

Today is Kailyn's 2 year Dx Anniversary

Type 1 Diabetes.  Things were already a tad crazy around here back in August of 2008, my health problems and Sam being diagnosed with Autism less than a year before. But, I remember that day like it was yesterday. It was much like this one. Hot and humid, but a little more sunny.  Kailyn just wanted to be held all day before we went to the MD because she felt so crummy. 

Here is the story of her Diagnosis.

http://lifeistwosweet.blogspot.com/2008/08/type-i-diabetes.html

The feelings of hopelessness and despair are not there anymore. I no longer grieve for children that are "normal" because this IS our normal.  And, honestly, (like my mother says) What kid DOES NOT have something these days?  From the outside looking in we look like the perfect family. Would I like to get more sleep instead of checking blood sugars at night or worrying about highs and lows? Yeah. However, we are at a much calmer place in our lives.  Even though we are going through some challenges now with our youngest I consider myself blessed and happy.  I have three beautiful children, a loving husband and a great extended family.

Kailyn is healthy, happy, thriving in school both socially and academically and turning into a quite remarkable little girl.

I really hope the State of Maine does not cut these services.

Maybe I should send Sam up there to have a chat with them? Something he could not do 2.5 years ago before his developmental preschool taught him how to play and speak. If it were not for that school,(Woodfords Family Services Preschool, Westbrook) he would not be entering mainstream Kindergarten without supports in a few weeks. So, the State is really just going to be passing the buck to the public school and then to Adult Services (another DHHS program) for the kids (who will eventually become adults) that can't function in society because they did not get the early intervention. OK.. off my pedestal.
PS: Look into cutting Maincare and cut off the people who move here from other states (who previously were from other countries) because the services are so good here compared to everywhere else in the country.

I would like to personally thank the person who invented Easy Set Intex Pools?

Anyone know the girl or guy? Because really, they have saved summer for us the past few years. My kids LOVE their pool. Even Keira. She puts her little feet in there and kicks away, while squealing at her brother and sisters antics. They could not care less if people call the pools Redneck or Hick.(nor do I) It is just plain fun for them and easy for Seth and I to keep up with.  They love to do tricks and to show them off. Here they are doing quite a few of them for me last Friday. (yes, I know the side says no jumping, but we like to live on the edge) lol They also do handstands, flips and cartwheels. All hard to catch on camera. BTW our lawn is getting a tad crispy because of the lack of rain.

Like the green swim cap on Sam?

Keira Watching the Fun with delight

Low Blood Sugars and Seizures.

are making for not quite sleepless nights, but almost.  Keira's seizures seem to be getting better. We don't see any spontaneous ones lately, they are all brought on by stimuli or stress. For example, I gave her a bath this am and she had four seizures because she was scared of the running water and of getting her hair rinsed out.  After a while she was fine, but we want to minimize these for her so we are laying low. If she gets scared she has a seizure, if she is touched a certain way when tired she has a seizure and if she drinks a bottle she has major seizures. Major seizures don't seem to come anymore unless drinking her bottle, which is not optional.  She also always has more the more tired she is, but like I said, they are reduced. Anywhere from 50-70% on a given day. This is a GOOD thing. It means the meds are working.  We start taking a full dose tonight so we will be watching her like a hawk this pm-am. We try to make sure Keira gets her naps and does not get over tired, which means she does not go places very much, nor do we.(as a family)  It is making for a low key summer, but the kids don't seem to mind. Thank God for the person who invented Intex Easy Set Pools.

Saying Momma after her tubby

Naturally curly baby Mohawk

SO tired

Kailyn had REALLY low blood sugars the last two nights in a row. Last night was the worst at a 38. We get scared when she is in the thirties during sleep. Our worst fear would be a diabetic coma. She was really good at waking up during lows, but is not anymore. This means Seth or I will be getting up at one hour and two hour intervals throughout the night until she is completely back on track. I adjusted her carb ratios for night time and hopefully tonight she will be back within her blood glucose range 80-150. Thankfully, Seth can wake up multiple times a night and go to work and still function. I am also thankful for my Mommy Radar. I always seem to feel deep down in my bones that she is low.  Of course, Kailyn woke up late this am acting like a bear because she was in the 300's. Over correction.  It's quite unbelievable how blood glucose levels can effect ones mood.  Can you imagine this pretty face grumpy?