Monday, January 31, 2011

HiHo, HiHo, It's Off To The Endo We Go!

Today was the BIG day for Kayleigh. I haven't updated much on what's been going on with her. She's still been having some weird blood sugar readings. She's been sure to eat every couple hours in fear she's going to pass out or go low. Today we finally got to see the female Endo in our practice. Kayleigh threw a fit because she didn't want a male doctor. Dr. S-S wasn't taking any new patients but due to Kayleigh's age and her request for a female doctor, they made an exception and let us see her. We've always seen Dr. R so I wasn't sure what to expect. Can I say...WOWWWWWW! I was so impressed with how in depth she went with Kayleigh's exam and past history. She had gotten Kay's records from the QUACK Doc we saw in December so she was able to review them prior to seeing us.

So now...I'm sure you're asking if we have a diagnosis yet? Nope! Not yet! She said an A1c isn't a simple answer to what is going on. Unfortunately it's a little more in depth that just that. First of all, Kayleigh is scheduled for the 5 hour glucose test...yes FIVE hours, not the 3 hour one. She said she wanted to see what Kayleigh's blood sugar did once it stabled out because sometimes a pancreas can spit some more insulin after it spitted out the first time to cover what she ate or drank. So we have to go down to CHKD for all of that. While they're doing that, they will do an A1c and an antibodies test. Dr. S-S actually went and pulled Kacey's chart to see if they ever did an antibody test on her. I didn't know if they had or not? THEY HAD! Kacey tested positive for those antibodies. So what does that mean? Dr. S-S tried explaining it to me and I felt like I was sitting in a foreign language class. I shook my head like I understood but then I came home and looked it up some more because I wasn't totally sure what that meant?

What Do The Test Results Mean?

A positive result for the pancreas antibody blood test for type 1 diabetes means that there is confirmation that a child or adult has circulating islet cell antibodies such as the ICA, IA2, GAD25, and IAA antibodies. Yet these antibodies are not used solely to confirm type 1 diabetes. They are used along with HB1Ac levels (level of red blood cells that have had glucose added to their cell membranes because of a high level of glucose in the blood). The pancreas antibody blood test for type 1 diabetes is also used in combination with urine and blood glucose levels, and in a small number of cases, by measuring the amount of actual antibodies to insulin.
So now, if we do this test and we rule it out...then theres the next step....Migraines. She went on to explain that migraines and headaches affect the body more than we know. It can give us some of the same symptoms that Kayleigh was experiencing. But we will cross that bridge when we get to it. Dr. S-S seems to think that Kayleigh is having reactive hypoglycemia.

What is Reactive Hypogylcemia?
Reactive hypoglycemia is a type of hypoglycemia that affects people who do not have diabetes. Although the cause of the hypoglycemia is different, the symptoms and treatment are the same. In reactive hypoglycemia, blood glucose levels fall below the norm of 70 mg/dl, just like in diabetic hypoglycemia. Eating a fast sugar source, such as orange juice, regular soda, 5-6 hard candies, or sugar cubes brings relief and raises blood sugar back up to normal.

What is the cause of reactive hypoglycemia?

The exact cause of reactive hypoglycemia is still unknown, but there are several hypothesis that might explain why it can happen.
Sensitivity to epinephrine, a hormone that is released in the body during times of stress.
Insufficient glucagon production. Glucagon is also a hormone which has the opposite effect of insulin. It raises blood glucose levels.
Gastric surgeries can also cause reactive hypoglycemia because food may pass too quickly through the digestive system.
Enzyme deficiencies can also cause reactive hypoglycemia, but these are rare and occur during infancy.

How to manage reactive hypoglycemia?

Limit foods with a high sugar content, especially on an empty stomach. For example, eating a doughnut first thing in the morning can trigger a hypoglycemic episode.
Eat small, frequent meals and snacks.
Eat a varied, high fiber diet, with adequate servings of protein, whole grain carbs and vegetables, fruits, and dairy foods
Carry pieces of hard candy with you, for those times when you feel your blood sugar dropping.
Although she's being tested for hypoglycemia, this still doesn't explain some of the higher meter readings. So we'll see what happens when they run the other tests.

I was so impressed with Dr. S-S that I wanted to see about getting Kacey switched over and unfortunately right now we can't because she is seeing over half of the patients between 4 doctors. She's overloaded right now but maybe once Kacey gets a little bit older then we can switch her too! I will keep you all updated as I get results from the tests.

I also want to send a HUGE Thank you to Bayer A1c Now customer service. This morning, I did the 2nd A1c test on Kayleigh and we got an error code that told us to call customer service. The nice lady on the other line explained that something went wrong when the blood mixed with the solution. She said that she would be sending us a coupon for another FREE kit! Wowwww! She has NO idea how much that means to a Mom like me. I thanked her over and over again. So I can't tell you what Kayleigh's A1c is with the kit from this morning but I'm glad because I wanted it to be a comparison to what she'd be tested with at the doctor's office so we could see how accuate it is. I will test her the morning we go for all of the other testing.
I'd also like to send another HUGE Thank you to Alexis for sending us some blood ketone strips for Kacey. Our insurance doesn't cover them so it's nice to know that we have a little back-up so Kacey doesn't have to pee on that stick! When we got the strips, we went to Walmart and the meter was $15.97 and when I opened the box, there was a rebate form for up to $40 OFF. This means the meter was FREE!!! ***does a happy Mommy dance*** All of you D-Moms know how much we like getting something for FREE when we have to pay out the you-know-what for everything else. Thank you Precision Extra for the nice little discount. 

As for Kacey's rash...well its almost gone. She only has it on her hands and feet but she still goes through phases of it being itchy. She is still on her antibiotic and antihistimine. She'll go back to school tomorrow but she's NOT ready! I can't tell you how many times over the last week she asked me to home school her. It breaks my heart because I know she loves school but sometimes diabetes just kicks her butt. She's not looking forward to walking back in to all the missed learning after a week at home. I'm hoping things go smooth for her!

So please keep the girls in your prayers for different reasons.
Lotsa Love,

Saturday, January 29, 2011

Overwhelming Grief

Last night, the DOC (Diabetes Online Community) was hit pretty hard with some very sad news. It feels like a punch in the gut. News that hit me like a ton of bricks.

A 24 year old girl...a 16 year old boy...a 27 mother of 18 month old baby boy misdiagnosed...and a 9 year old little girl....TAKEN. All five of them lost their lives to Type 1 diabetes. It's scary. It's heart wrenching. It's every mothers worst fear.

This news came to me just after I'd gotten some other sad news. I had already been in prayer before coming to the computer to find my Facebook being bombarded with blue candles. A dear friend of mine texted me to let me know that another friend's daughter had her baby early. He's a small little thing... 5lbs 15oz...and her baby shower is this coming Sunday. Can we freeze her cake? WHY? Well, they're not out of the hospital yet. WHY? I got some pictures of this beautiful baby laying in an incubator under a blue light. I immediately asked if he was jaundice? I wasn't prepared for the next text. Ummm...well actually believe it or not he's having some blood sugar issues. I broke down. Completely lost it! A brand new baby...only 24 hours old...PLEASE say it isn't so! I immediately went into prayer asking God to please spare this infant of this horrible disease. Maybe it's a fluke. Maybe his pancreas will finally kick in. But PLEASE let it be something other than Type 1 diabetes!

So once I finally started reading about all the people that had lost their battle with this horrible disease, I had to get up from here. I had to walk away. My thoughts were a mess. I looked at my baby laying on the couch and I had to go in the other room. I didn't want Kacey to ask me why I was so upset. Frankie came in the kitchen and I was in tears. I told him what I'd read and it hit him pretty hard too.

WE NEED THIS CURE! This just weighs on everyone that is affected daily by this horrible diease. May these families find peace knowing their loved ones are no longer suffering with this disease. May they find comfort in the arms of the Lord in the coming days as they lay them to rest. May the Diabetes Online Community draw closer together and bond stronger than ever as they lift these families up in prayer.

Our  most Faithful God,
Please hear our prayers.
Look on with love as I pray for these families that have lost a daughter, a son, a sister, a brother, a mother. God, may we find some peace in John 11:25-26 ...I am the resurrection and the life. He who believes in me will live, even though he dies, and whoever lives and believes in me will never die. Lord, as we mourn the sudden death of these Type 1 diabetics, show us the immense power of Your goodness and strengthen our belief that he/she has entered into Your Presence. Give us the peace to know they are no longer suffering with such a horrible disease. Please comfort these families in the days ahead. Surround them with others who know You and your greatness. Matthew 5:4 tells us ...Blessed are those who mourn, for they will be comforted. God, I just ask once again to hold these families so close. I also pray for peace within the Diabetes Online Community. When something like this happens it shows us the reality of this disease and the fear of knowing that this could happen to any of us. God, I also pray for these families that struggle with this disease on a daily basis. There are mothers struggling with the energy to simply function. There are fathers that are trying to stay strong as head of household and keep peace within his family. There are children and adults that struggle to cope with this disease on a daily basis. There are families in turmoil and I pray You lay Your hand on them. Show them Your presence. Look compassionately on their children, their families, their parents, my children, my husband, my family, my faithful friends and me, as now we turn to Your mercy and love. Strengthen our faith and lighten our loss. I ask this through Your Son, Our Lord, Jesus Christ. Amen.


Thursday, January 27, 2011

Sticky J Coupon Code

For those of you that are looking for a simple alert bracelet. I highly recommend Sticky J bracelets. These were Kacey's first alert bracelets and we loved them! They're offering a coupon and I thought I'd share it for you all to use!

Dear Sticky Jewelry Customer,

It's almost Valentines day, and we're offering past customers a 20% discount on any jewelry or gift item sold by Sticky Jewelry. Nothing has been excluded from this sale, not even our already-discounted Clearance Items, and there's no limit to the number of times you can use your discount between now and February 15th.
Since Valentines Day orders need to ship no later than February 11th to arrive on Valentines Day, we're offering expedited shipping options as well. Plus, we invite you to share this discount code with friends and family members so that everyone can receive a gift that's been personalized just for them.
There is even a special page devoted to heart shaped gifts so you can easily find the one best suited to your Valentine.

The discount code to use for our 2011 Valentines Day sale is: REDHEART

It's good until February 15th, but if you shop soon, you'll have the best selection from our already-discounted Clearance section, and you'll avoid the expedited shipping charges often incurred by last-minute shoppers.
Visit us at and save during our special Valentines Day sale.
Lori Torman, President
Sticky Jewelry
(727) 823-9500
Discount code may not be used to purchase a gift certificate, and may not be used in combination with a gift certificate or any other discount offer. Offer is good only for purchases made online at between January 25th and February 15, 2011

I hope someone gets some use out of it! We no longer use Sticky J alert bracelets but it wasn't because we didn't like them. We ended up finding Road ID last year and we've used them ever since. I like having all of Kacey's info on the front of her bracelet. I encourage you to look into both bracelets. We think they're GREAT!

Wednesday, January 26, 2011

Itchy Update

My head finally hit the pillow somewhere around 10pm last night. I was emotionally, mentally and physically exhausted. I felt like every bit of life had been sucked out of me. Kacey was on the couch again last night. I could hear her wiggling trying to get comfortable. The couch is right outside our bedroom door so I was within talking distance. I asked if she was ok and she replied, "Yeah *sigh* I'm just a little itchy again". The Hydroxyzine that the doc had given her was working some. I could hear the exhaustion in her voice. She was tired...tired of itching....tired of the blood sugars over 400...just tired. She got quiet and after a few minutes I heard, "Goodnight Mommy"....ahhhh she was settled. She was getting some relief from the itchies that have stole her sleep the last two nights.

I spoke with the NP from her Endo's office yesterday evening. She got my email with the pictures and the drama that had unfolded the last 2 days at Urgent Care. She couldn't believe the diahrrea of the mouth that the doctor had. She said sometimes it's ok to think out loud but then there are times when you can scare a mother to death when you tell her "Well, I don't know what this rash is now." and "Do you think she could be allergic to her insulin?" (yes he asked me that!) She looked over the pictures and she said it was kind of hard to tell without being about to feel her skin but if she had to make a best guess then she would say that it was a bad case of Fifth's Disease or some other virus. To make sure she was making the right call, she was going to consult with our Endo this morning and show him the pics. She said she would call me back today and let me know what he says but she thinks he is going to agree that it is either a virus, Fifth's Disease or Strep. In the meantime, she told me to take her off that Prednisone immediately because that will continue to wreak havoc on her blood sugars and as long as her sugars stayed up then she couldn't get well. She wanted me to keep her on the Amoxicillan because if it is Strep then at least she's getting it in her system. She went on to explain that you CAN have Strep and not have a sore throat. You CAN also have a negative rapid strep test and then after it grows a few days then it turns up positive. Sadly, with it being Urgent Care, most of them don't grow things. They do the rapid stuff and send you on your way. ( thats how those kids at school are walking around sick and the strep is negative...blech!) She also went on to explain that the Hydroxyzine is a great antihistimine. She said they use it for their patients with severe exema and it was safe for Kacey to use. I was scared to give it to her after the drama we had with that doc yesterday. I had to make sure she was able to take it and once the NP validated that then I gave her a dose.

Once I was finally able to relax, the headache kicked in. STRESS! I closed my eyes and felt a million things swirling around in my head. I was just worn right out! I got out of bed around 12am to check and see how Kacey was doing. She was sleeping so sound. So angelic. So peaceful. The check of her blood sugar revealed a 467...thats better than the last 2 tests that read "over 500". I knew she was coming down. I corrected her...AGAIN. It seems like all we've been doing is correcting! I layed back down...2am...stumbled out of the bed and tested her...354...ok we're coming down! I stumbled back to my bed and got back up at 6am...she was still resting so sound...test...307. She woke up and said she felt a little itchy but now she's got a stuffy nose and head congestion. She's still covered from neck to ankles in this hive-like rash. I gave her the meds and she crashed back on the couch with the TV remote.

The NP called me back just a little bit ago. She sat down with Kacey's Endo and they reviewed the pics together. He said it looked like it was just a virus and it had to run it's course. Sometimes viruses affect people different ways and since she's diabetic, those symptoms are not going to be "classic" or "normal"...haha...yeah we know that NOTHING with diabetes is ever NORMAL! So he said to continue on the antibiotic in case it's something else going on and keep on the antihistimine until the itching is gone. The rash could last from a few days to a week or more. She also said that from now on, since we're having a problem getting in with our family doctor and we're not comfortable with the urgent care doctor, we can just bring her right down to CHKD ER and since they're right in the hospital then we can request they be called in to help with diagnosis and treatment. She said they don't like to encourage people going to the ER with simple things but since this was something that we'd seen Urgent Care for and it was worse but then you throw diabetes in the's just safer for Kacey down there. I agree! :)

So I feel a little better knowing this is NOT a food allergy! This is one time when I can be happy about a misdiagnosis! Kacey is relieved to know it's just a virus and not anything more serious. And so we're going to take advantage of that doctor's note and she's going to relax the rest of the week! I think she's been through enough this week and school is the furthest thing from my mind. I have kept her teacher in the loop and I'm going to pick up her work this afternoon. Thankfully they are off on Friday and next Monday so we've got a nice long weekend for her to get better.

Tuesday, January 25, 2011

Rash- Day 2

I'm frustrated. I'm scared. I'm tired.

We're on day 2 of this rash that is sopposedly from a food allergy. Last night was insane! I listened to my baby scream out and cry hysterically because she was itching so bad and nothing we did would take the itch away. She kept saying she felt like her skin was "crawling". Miserable! Completely miserable!

She took 60mg of Prednisone and 4 doses of Benedryl (2 tablets) and NOTHING was settling the itch. I put cold compresses on her. I had her get a cool shower since a warm one seemed to irritate the hives even more. I tried powder. I tried anti-itch cream. Nothing worked! She finally cried so much that she fell asleep from exhaustion.

Her blood sugars are CRAP! Last week she was in range 4% of the time....FOUR! Yuck! So of course the Prednisone sent them further in the crapper and she didn't come out of the 400's all afternoon. Which in turn led to her screaming mad. She screamed things that made my heart wrench with pain.

"I hate diabetes!"
"Diabetes sucks!"
"I wish I didn't have diabetes!"
"High AGAIN? Why ME?"
and finally....
"I feel like someone hit me with a car and then threw me in a dump"

Ughhhhhh! I got in the shower and cried so hard last night. I know something is going on in her body. Theres a rash to prove it. Her sugars were crap before the rash and she had the freaking fever! But this is the hardest part about diabetes....NO CONTROL! There is nothing I can do. There is no magic pill to make her better. There is no amount of consoling that can make her feel better. I can't take this away. It's frustrating! :(

I trust a doctor to make a diagnosis. I get a diagnosis and think things will get better and her body is still throwing this curve ball that doesn't seem to end. Now the doctor can't even tell me WHAT this rash is.

The did a CBC and a titer....all came back normal. Strep is still negative. It looks like hives. It itches like hives. Yet, she was running a 99.4* fever when we got there. He said if it was 5ths disease, she wouldnt itch and she'd have slapped cheeks. If it was strep, she wouldn't itch like this and her strep would be positive. If it was Roseola, she would have ran 103*-104* fever and then the rash but she wouldn't be itchy. So the only other thing is an allergy. An allergy to WHAT though? It's not something from skin to surface contact. It's got to be something she ate. She hasn't eaten anything different than she normally does. Was it a medication? The only thing she took was Motrin for the fever last week. No other medications other than....her insulin. Nothing else she could have possibly eaten or gotten hold of? WHAT?!? Ok...I felt like I wanted to smack this elf eared so called doctor that wanted to know what he was talking about! I looked at him and said...."Ok so if you don't know what this is then what do we do next? Who do we take her to?" He went on to say that we needed to wait a few days and see where this went with the new meds. UGH! if shes got a rash and shes got a fever now...thats NOT something to "WAIT and see". Grrrrr! See the frustration here!

I'm in the process of contacting her Endo to find out what they want us to do. I took pics and attached them to show them. This is INSANE! I will keep you all updated as we find out what this mystery rash is!

Monday, January 24, 2011

Dear Starbucks

***I'm writing this here and linking it to the comments section because the Starbuck's website won't allow for long detailed comments and this one is a little long winded but I think it should be read***

Dear Starbucks,
I've been a regular customer at the Gloucester store for over a year now. I usually pop in there 2-3 times a week and enjoy a cup of coffee and the free Wifi. I like to call it "Mommy Time". I somehow feel a sense of peace at this location or maybe it's just the friendly atmosphere. Speaking of being friendly, that is the reason for my email. During my regular visits to this same location, I've been blessed to witness some of the most fantastic customer service that I've ever been a part of.  One certain worker sticks out above all the rest. His name is Bradley. This man makes being at Starbuck's so uplifting. When you actually sit in Starbuck's, you get to see another side of the staff there. You're not just a number. You're not just another paying customer. I've watched Bradley ask people things like, "How's your day going?", "Where are you off to today?", "How's work going?", "Do you have a busy day planned?" and he actually takes the time to make conversation with the customers. Whether I've gone through the drive thru or gone to sit down, he's always so pleasent and it just makes being there a nice time. My intent for this email is to tell you exactly how this location is practicing some of the most wonderful customer service that could ever be shown. There is an old saying that says, "A little kindness goes a long way." and Bradley shows this EVERY single time we are in there.

I wanted to share our experience this morning just to show you how kind this man is. My youngest daughter is 10 years old and a Type 1 diabetic. Bradley doesn't know my daughter is diabetic. He doesn't even know our names but he does know our faces. My youngest daughter thinks he's the best thing since sliced bread and whenever she goes into Starbuck's with me, I get her the same thing every time...a TALL Vanilla Bean Frappuccino. Being diabetic, getting a drink like this is often a "treat" and 65g of heavenly carbohydrate goodness. So this morning when we walked in, we had just come from the doctor. She was covered in hives from an allergy to something and we were waiting for some medication to be filled at the pharmacy across the street. She immediately lit up with excitement because Bradley was working. It wasn't a shock when he asked us what we were up to and why she was out of school today? So we went on to explain the morning we'd had and you could see he genuinely cared about what we were saying. The other worker behind the counter told him that she would make the drink and he turned to her and said, "Nope! I've got this! She's one of my favorites." This statement alone caused my child to beam and smile from ear to ear. So the other worker made my drink and we went to find a table while Bradley made my daughter's drink. We sat down expecting to be called when it was done and he walked out from behind the counter with a GRANDE Frappuccino and he handed it to her and said, "Hey there! I made you a grande instead of a tall since you're feeling so bad. I hope you feel better!" Now THAT, dear Starbucks, is amazing service! He had no clue of the daily struggles she has being a type 1 diabetic. He had no clue of how rotten her night had been with the itchyness from all the hives. All he knew was that he could make her smile by making her a grande instead of a tall. This is just one story and I'm sure that many others could tell you that their days were a little brighter from one simple caring smile from Bradley. We don't know what others go through on a daily basis but I have witnessed first hand how someone can change someone's day in an instant! As I sat at the table with my daughter, she was almost in tears because he'd done something so nice for her. It didn't matter that her blood sugar was a 440, it didn't matter that she was covered in hives and scratching wildly while her Benedryl kicked in, what mattered was that he went out of his way to brighten her day with just the simplest upgrade from a TALL to a GRANDE. I'm almost positive that working at Starbuck's doesn't pay much but this man certainly derves a raise! You can't put a price on kindness, thats priceless, but he's definately worth keeping for this location. I sure hope you're able to pop in and witness first hand how wonderful the service is there.

A Faithful Regular Customer,

Thank You Creative Memories

Thanks to Creative Memories because that is what I used to make my new blog header!

I got my Creative Memories digital software last year and ever since then I've been totally in love with it. I've found myself moving further and further away from paper scrapbooking. For those of you that are not familiar with it yet, I encourage you to take a peek at what they have to offer. I must say that I didn't want to wrap much money up in buying it for myself but it was a gift from my hubby since he knew how much I loved scrapbooking and being on the computer. The nicest part is once I finish the pages then it gives me the option to upload them right to Facebook! I've done several pages and I'm actually looking forward to taking a class with someone that can show me all the really cool features because I know I haven't even made a dent in what all it can do!

Oh yeah...and the best part....I OWN the header! I made the whole thing all by myself! The pic of the cupcake is from Creative Memories weekly freebies for the software. So just in case anyone out there wants to tell me they own that's mine...all mine....hahahaha! :)

I also used this same software to make Alexis a button for her blog too! So not only is it a digital scrapbooking's come in handy for quite a few things now! :)


Yesterday afternoon, Kacey developed a rash. At first it was on her back...kinda itchy...but she didn't say anymore. We went to church and after church we went to my Mom's for lunch. She took her sweater off and she was peppered in the rash. All over her arms. All down her back and belly. My first thought was...great...she's got Fifth's Disease now because she already had the fever and crap. As the evening progressed, so did the rash! It was AWFUL....and she was itching so bad that she was screaming out at me. I gave her Benedryl and rubbbed her down in Benedryl cream. She was STILL itching! Then I got a call to work at the school for 3 days straight and I told the secretary that I couldn't take it because of Kacey's rash. She went on to tell me that one of the other sub's just took her child to the doctor because they had the same rash thingy and it was STREP! Ughhhhhhhh! So I had no choice but to take her into Urgent Care this morning.

It's hard to really see the rash in this pic but thats what covered her whole upper body this morning. She was still itching and crying. They did a rapid strep test and that was negative (thank goodness) and the doc said that Fifths Disease is most common in children under 2 and she'd have a slapped cheek look. I knew that because Kayleigh had it as a toddler. He also said that once they get it then it's like Chicken Pox...they don't get it again. Well...WHAT is it then? It's hives! FROM WHAT?!?! He said because of the severity and how long it's lasted, he's almost certain it's something she ate. A food allergy?!?! SERIOUSLY?!?! How much more can we really take? UGH! So he went on to explain there is a 6-8 hour window after eating for her to break out and whatever she ate in that time needs to be logged and then if it happens again we have to do the same thing and find the common denominator. Great! Do you know how hard this is gonna be to narrow down? Yeah she's diabetic and we count the carbs in everything but he went on to explain that this could be something she eats regularly and then her body all of a sudden says, "Nope! I don't like this food now!" and breaks out in hives. It could also be stuff within the food...not the food what the food is made from. OMG!!! I felt my brain swelling! So he said what I need to do now is write down what she had to eat and the date. He's giving her a prescription for Prednisone and he wants her taking 2 Benedryl for now. Once we get the hives under control then we can focus on what it is. As she eats, he said if she develops the hives again then we need to journal it. What a pain in the rear end!

So now...I'm sitting in Starbucks with Kacey while we wait for her prescription to be filled. This is my favorite hangout :) and I have a favorite worker in here. Everytime we come in, the girls always watch for Bradley. He's such a neat guy and very friendly. He takes the time to ask how customers are feeling and you can tell he genuinly cares about the customers. Its nice to see this...not just with my family...but with every single person who orders here. So it wasn't unusual when he asked how we were doing and what we were up to today. Kacey told him she wasn't feeling well and we were waiting for her meds to be filled. So to "treat" her for all her itchyness, I ordered her what she loves most....a tall Vanilla Bean Frap :) She loves when Bradley makes it because it tastes "perfect". We ordered and we went to sit down. He personally made her drink and walked it out to her..... "Hey there! I made you a grande instead of a tall since you're not feeling good today." Ummmm....if you could have seen her eyeballs. She was SOOOOO excited!!! So today...we're gonna ignore that 440 blood sugar and she's drinking her Starbucks in heavenly bliss :) TAKE THAT diabetes! THANK YOU Bradley!!! YOU make Starbuck's a better place to be and you've made my baby girl's day :)

Saturday, January 22, 2011

New Pump Pack

As many of you know, my Mom is always making Kacey those really cute pump packs and most of the time she LOVES to wear them but there are times when she wants to wear a cute outfit and the shirt is a little snug and it's hard to "conceal" her pump. Well....worry no more!

My Mom bought some swimsuit material and basically made her something like a tummytote! OMG! You would of thought we just gave her a million dollars! She put it on and immediately slipped Goober inside. PERFECT FIT! The real test was when she pulled her shirt down. This is one of her tighter shirts and it's still hard to tell she's got her pump on unless you're looking for it! She was so excited that she got tears in her eyes! But it was soooooo neat to see her beaming!'s the simple things :)


Thursday, January 20, 2011

Adding a Signature

OHHHHHH.....if any of you are interested in having a signature at the end of your posts....YOU CAN DO IT!!!! :) Go to http://www.mylivesignature/ and they tell you how to do it! This is soooo cool! You can pick and choose one to look like the way you sign your name! You make ther code and then go under settings in your blog...then formatting....then scroll down and post the code in "post template" and it will come up each time you post! LOL can ya tell we're still home sick? I've got too much time on my hands!


A Friend Forever

Rufus...need I say anymore? Most of the Moms of diabetic children out there know who Rufus is! For those of you that don't....Rufus is a diabetic teddy bear that is given by JDRF to children recently diagnosed with Type 1 diabetes. He came in a nice little backpack with a book about going to school with diabetes. He's been there for Kacey from the very beginning! It seems like every time she gets sick, he's right there with her! There is not a night that goes by that she won't make sure she has him with her. When I look back through the last 2.5 years of pictures, it's funny to see him pop up in different pics. Here are just a few.....

 Rufus joined Kacey at the JDRF awards banquet where she won an award for 1st place in the tshirt contest.

 Rufus was there when she got her very first diabetic alert bracelet

 Rufus always goes to Endo appointments with us but he makes sure to cover his face so he doesn't get any germs!

He waits with Kacey while the Endo gets her A1c results.

 Rufus takes a trip to the hospital where diagnosis began.

Rufus always seem to be around on diabetes sick days.

 Rufus was there when Kacey attended her very first JDRF awards banquet and won several awards.

Rufus was there to promote sneaker sales!

 Rufus was there for our very first JDRF Walk in 2008.

 Rufus in his younger days when his hair was still "fluffy".

Rufus at a year old!

 Rufus was there when Kacey did her first radio interview to promote JDRF and the walk.

Rufus is always there!

Even on the crappy horrible sicky high days.

Rufus when he was only about a month old. Kacey was practicing injections on him with water.

He was even there when Kacey got her glasses!

He still manages to make her feel better....even when those blood sugars are pinging like ping pong balls!

And....the next two pictures...Rufus is 2.5 years old now and you can see...his fur isn't fluffy anymore. His eyes can hardly be seen. His clothes have been replaced. He looks so worn out....but you know what....Kacey says, "He's not worn, he's just WELL LOVED!" Yep, that he is!  

And there you have no particular order (cuz I was too lazy to drag them in order...LOL)

Do you have a Rufus? Does your child have a Rufus? If not, is there something you're attached to? Does your child have something they clutch tight to when they are sick or their blood sugars are wreaking havoc on their bodies?

WE LOVE RUFUS!!!! (***special Thank You to Lori from JDRF for giving him to us when we needed him most!)

Blog Makeover

I've been tossing around the idea of a blog makeover for quite some time! I just didn't know what I wanted....UNTIL I ran across Dotty Dot Dot's cupcake background! It seemed to fit PERFECT...since Kacey is so "sweet" and Kayleigh is my "baker". I contacted Ashlie about doing the makeover but right now I just can't do any paid makeovers right now so I took advantage of her freebie background and she is working on a header for me for later when I can do it. THANK YOU Ashlie!!! Another friend of mine heard that I was wanting these things so she taught me how to make my own button. THANK YOU to Tracy for helping me get it right! I know that all my D-Moms will agree when I say...there is hardly any "extra" money to spend on things like this so it's nice when we can create it and still have a pretty stinking cute blog :) Now go grab my button! LOL!

Tuesday, January 18, 2011


Do you know what it feels like to have the wind knocked out of you? Have you ever been so upset that you feel like a rug was snatched out from beneath your feet and you hit the ground knocking the wind out of you? You sorta lay there for a second to try and catch your breath and then you start to cry because it hurt.

Thats EXACTLY how I'm feeling right now!

I'm trying desperately to type this post through the tears that won't stop flowing! I type and I dab my eyes but the faucet of tears just won't stop. WHY? I know you're asking yourself what in the world could make me so upset?

I just hung up the phone with an Animas rep. They got our prescription and they're going to process the pump request with our new insurance but he wanted to give me a heads up on a few things. A heads up? Well...we're only 2 years into our Cozmo warranty. Ok...and? Well that means that insurance will probably not approve an upgrade. Ummm...wait! We don't have the same insurance! Well we still have to subit whether it is a new pump or pump upgrade and since her pump is still under warranty for another year then he said they will probably reject it BUT we could take advantage of the upgrade through them. They will give us $700 for Goober (Kacey's pump) and then that will leave us with an out of pocket expense of $200 or we could pay the $900 up front....UP get the new pump. Ummm...excuse me while I puke and bust into tears! For some of you, a pump is just a pump. Your pump might be like a cell phone. You can toss it to the side and part with it pretty easy. For Kacey, her pump is like some imaginary friend that is with her 24/7. She talks to this pump. She hugs her pump when she has good blood sugars and she yells at it when she has crappy ones. It's like a part of our family! When she had to send Herbie (her first pump) back, it was like a death in the family! I had told her that she would get to keep Goober but she'd be using a new pump. You know what this kid wanted to do with Goober? PUT HIM IN A FREAKING GLASS BOX! Yes, a glass box! A box to protect him for the rest of her life! A casket for an insulin pump. A glass box like Snow White was put into. ***wiping tears*** And....Now I had to break the news to her that she couldn't keep him because the difference in $900 and $200 up front is tremendous!!'s all about freaking MONEY! The root of most evil! I honestly feel like I could vomit right now. I once again explained to the guy that we didn't have the same insurance. He once again explained to me that unless the pump was out of warranty or malfunctioning then they couldn't do anything about it. MALFUNCTIONING?!?! Ummm...does an Endo not being able to download settings classify as a malfunction? Can we say he's not working right? Can we tell them the CozMonitor works when it feels like it? (which it does by the way...damn those new Freestyle strips) Can we make up some story about the pump being run over by a train and not being saved? :( I'm at a loss here! So he said he would try to submit it and see what my insurance says.

Meanwhile, I keep my composure and walk into Kacey's room where she's laying and watching a movie. I sit on the edge of her bed and tell her I have a bit of bad news. She looks at me with sad eyes....she knows....she really knows what I'm about to tell her. I swallow that nasty lump in my throat and tell her that we have to make a choice. It's not for certain yet but if we decide to keep her pump then we have to pay $900 for an Animas pump but if we send it back then we only have to pay $200. She immediately clutches her pump pack and starts bawling. I felt like my heart was being squeezed right out of my chest! So I went on to tell her that her other option would be to try and stick it out for another year with Goober and we could definately go forward with getting Dexcom. That wouldn't be a bit of trouble and she'd have it in no time! She layed there just looking at me with these huge tears rolling down her face. I told her that we wouldn't make any kind of decision until we found out for sure from the insurance company and then we'd go from there but I just wanted her aware of what we were about to go through. I hugged her and left out of her room.

So now here I sit....and my biggest dilemma is this....
When we first got our Cozmo, it was March 2009. Two weeks after we got Herbie, we got a letter in the mail telling us that Smith's Medical was no longer carrying the Cozmo pump and for those that just got pumps, they would still continue to honor the warranty until the 3 years was up and then after that we would have to get a new pump. thats all fine well and good...BUT here's my gripe....when we went to the Endo last month, she came back in with Goober and said they could no longer download the pump settings. They couldn't access the Cozmo website to download what they needed to so they could make changes to her pump and see her logs over the last few weeks. I don't understand? WHY would Cozmo shut down the site for the doctors to be able to access the pump information. This means that from now on I have to use the cable that talks to her pump and upload the program settings and logs to pdf files and email them to her Endo before every visit. If something happens to that cable that we have then we have NO way of uploading these Cozmo settings anymore. that a malfunction? DUH! This is not OUR fault! This is Cozmo's fault! So why should we be held responsible for it? I knew in my gut that it would come to this. And I know in another year we could get another new pump with no problems but having to deal with an almost 11 year old that is attached to this pump like a stuffed animal is emotionally draining. Now....don't get me wrong....I'm in love with our Cozmo. I love the features. It still works and Cozmo will replace the pump for the remainder of the warranty. The reason we were being pushed to switch is because the Endo couldn't upload settings anymore. So, we HAVE to switch right now? Should we wait out the next year with Cozmo and just move on with the Dexcom ...which is what *I* really want...*wink* It just seems like the easiest thing to do right now :(  My heart just breaks for Kacey. I guess for her it's like giving a body part back. Even though I've tried to explain it is like cell phone upgrades...she doesn't look at this pump as a piece of electronic it makes things MUCH more difficult!

I'll update as I hear back from insurance to see what they say!

Oh yeah...and to add fuel to the fire....our insurance DOES NOT cover blood ketone meters or the strips. THANK YOU insurance! You just ROCK! NOTTTTTTTTTTTTTTT! Maybe all of us D-Moms need to rally and tell them how important these are. Just like tonight....try getting a sick kid to pee on a stupid little strip while you add in being modest. almost 11 years old you really dont want your Mom holding a pee strip between your thighs and watching her peek down there to make sure your pee is making it on the strip. UGH!

Monday, January 17, 2011

Ornapods & Lows

I think we're finally out of the "low funk" that Kacey's body decided to take us through.

We had a VERY long night on Saturday night. When Kacey went to bed she was a 125 with no IOB so she had a snack, milk and a graham cracker, and bolused for it. Off to bed she went! It was already almost 11pm since we visited with some friends so I knew the 2am check wasn't very far off. Frankie said he would set his clock so I could have some rest since I had done the 2am checks all week. It didn't take long for me to doze! I never heard his alarm go off at 2am but I was jolted out of the bed by a shout from the other room..."Mumma! She's a 62!" C-R-A-P! I jumped out of bed and totally bypassed Kacey's doorway and went right to the kitchen for the juice. C-R-A-P! Omg! You mean I FORGOT to get another gallon of Hawaiian Punch?!?! (insert forehead smack here) I poured the last of the juice into a cup and hurried to her room. She was still in a daze but we managed to get her to suck from the straw. ***15 minutes later*** Retest...56! Are you freakin kidding me?!?! Give her 4 glucose tabs while I rummage through the frig to find something to give her. UGHHHH! I can't believe I forgot juice! I managed to find 2 Kool-aid koolers in the bottom drawer. YES! I ran back to her room with one in my hand. ***15 minutes later*** Retest...62! SERIOUSLY?!?! Well...Daddy knows what that means...LOL...he gets kicked out of our bed and moved to Kacey's bed and she gets moved into bed with me so I can keep an eye on her until she comes up over 150. By now it's nearing 2:45am and I struggle to keep my eyes open. Thank goodness there was something on TV! I didn't get her above 150 until after 4am. I set the clock to retest her at 5am. I dozed for that hand on her chest so I could feel it rise and fall....***5am test***...305! REALLY?!?! Ugh! So I corrected her and I knew I could grab at least 2 hours of sleep. So 7am rolled around and she had come back into range and I snuggled back in the covers and at 10am, I was awaken by "Mumma! Breakfast is ready!" I rolled over to see my hubby standing there with 2 plates, one for me and one for Kacey. I could smell coffee already and I stumbled to the kitchen where I saw Kayleigh washing up the rest of the dishes that were in the sink and she had made a whole pot of coffee. Ahhhhhhhh! That was soooo needed! As much as I wanted to be in church, there was no way I could even function to drive myself. Sunday...a day of rest! And that is exactly what I made it. I spent the whole day in bed...watching movies and scrapbooking. It was actually pretty nice. The one thing I'm so greatful for...Kacey was able to rest the entire night. Even though she was low, I was the one taking care of her so she was able to sleep and she didn't budge during all those checks. But she couldn't understand WHY I was so tired? LOL! If she only knew! :)

We also received a very special surprise in the mail. The Houston Family from Houston We Have A Problem blessed us with 2 Ornapods for our tree next year.

Kacey was soooo excited to get such a special present! These ornaments are not just ornaments! They were attached to Super Nate for 3 days to keep him alive! For us, that has such special meaning. Kacey sat there with the pods in her hands and she smiled and then she looked at me with tears in her eyes and said, "Mommy, these are so special." and she clutched them to her chest and hugged them. So from the bottom of my heart (and hers)....THANK YOU HOUSTON FAMILY! We will hang them with pride each year and say a silent prayer for a cure. We love you bunches!

Friday, January 14, 2011

Youth Group = Happy Teen

Kayleigh. My Oldest Daughter. My Shy Baby.

I've blogged some about her shyness before. When Kayleigh was little, she was glued to my hip. When we would walk into any room with people she didn't know, she would hug tight to my leg or cry for me to pick her up. She's always been very shy. I think it stems back to being poked and prodded when she was little by so many doctors that she didn't know. She was my sick baby. She got RSV and her first ear infection within the first 3 months of her life. She kept an ear infection for 8 straight months and we were at the doctor every 2 weeks getting a new antibiotic. Unfortunately we were in a group of doctors and every time she was seen, it was always a different doctor. By the time she was 10 months old, she got her first set of tubes but she also had her first asthma attack. We almost lost her that night! It was then that I became a very overprotective mother. I was a young mom...only 19 years old...but I was scared of her unconrolled asthma. She was on a nebulizer for breathing treatments every 4 hours for months. By the time she was 2, she'd seen so many different doctors because she'd been so sick and she was now facing a 2nd set of tubes and her adenoids out. Once she made it through that, we only had her asthma to control. But during that time, she wasn't crazy about men and she definately wouldn't go to anyone that she didn't know. I think she was scared they were going to poke at her. So that being said, she's always been VERY shy. She's not quick to make friends but she holds her friends that she does have very close. She's not quick to talk to boys but she has gotten better about it (I'm not complaining though...haha!) She's always gotten good grades and she excels with whatever she puts her mind to. After all, not many can say they've had their own cake decorating business since they were 13! (If you haven't seen her cakes yet, check her out on Facebook at Cakes By Kayleigh) With every cake, I've watched her grow and push her limits. But once again, that is her comfort zone.

Soooooo....the reason for my post.....
As you all already know, we started attending a new church in October of last year. One of the main things I was looking for in a church was a Youth Group. My girls are at the ages where they really need to have that and I just feel it's very important. The Youth Group at our church starts when they are 6th grade so Kacey can't start yet but Kayleigh can. This meant she had to step out of her comfort zone and take this journey on her own. When I attended the ornament exchange, I had the chance to speak with the pastor's wife about getting the girls involved in the Youth Group and Girl's Group. They have a girls group that meets on Sunday mornings. It's divided into middle school girls and high school girls. Then on Thursday night is Youth Group and thats when all the kids are together. A few Sundays after I spoke with the pastor's wife, Kayleigh and I finally had the chance to meet the girl that lead's the girls group. Well...she happens to be the youth pastor's wife!!! I can't even begin to tell you how welcomed Kayleigh and I both felt. We were welcomed with hugs and she spoke with us like she'd known us forever. For Kayleigh, THAT made a huge difference! Last Sunday was a perfect time for her to start Girls Group because it's a new year and a new session. She was very nervous about leaving out in the middle of church and walking into that room with those other girls....ALONE! I couldn't hold her hand and walk her to the classroom. This was something she had to do on her own. And...SHE DID IT! This past Sunday was her first meeting with them. As nervous as she was, she came out all smiles. So then, she wanted to find out what Thursdays were like but she was still very nervous about walking into that big room of kids. Youth group starts at 6:30pm so we arrived at the church at 6:15pm in hope that she would see some of the girls that she met on Sunday. By 6:25pm, she hadn't seen anyone that she knew go into the building so I made her get out and walk in. I walked in with her because we weren't sure where she needed to go. As soon as we got to where she needed to be, she layed eyes on the youth pastor who yelled to her across the room. She made a beeline for him! Not even turning around to say bye to me. As I walked back out to the van, I smiled to myself. She took another BIG step! There she was, in a room full of people that she really didn't know....BUT she was there! She had taken another step out of that box and it was just the step she needed. I walked back in to pick her up at 8pm and she was nothing but smiles. We had a 30 minute ride home and she didn't stop talking the entire way. She had a wonderful time. She thanked me for pushing her to go. She made several friends while she was there. And most of all....she wants to go EVERY Thursday! She was even a little upset because several of the youth are going to a conference tonight and 2 weeks ago she wasn't ready to go but when they were talking about it last night, she wished she had signed up. I was in the kitchen cooking dinner a little while ago and she came in and leaned against the counter and let out a big sigh. I turned and saw her staring off into space and I asked her what was wrong? She said, "I wonder how much fun the youth are having tonight? I really wish I would have gone to YEC." I had to smile! It makes me feel so good that she actually wanted to be there and that she was thinking about it. As she gets more involved with the youth there, I know some great opportunities will arise and she will make some wonderful memories with them. I just have to say, I'm thrilled that my shy girl is taking those steps on her own to move out of her comfort zone. It's also exciting to see her so happy!

As a parent, our job is to instill morals and values into our children and then hope and pray they take the right path. We can't choose the path for them but we can direct them in the right direction. It's nice to see them headed in the right direction!

Thursday, January 13, 2011

Blog Button


I've tried for weeks to create a blog button and I haven't been able to figure out how to do it. Can someone tell me how to make one or direct me to the page that tells me how to do it?

I want to have one of those cool lookin buttons that you all have but I just can't figure it out!


Wednesday, January 12, 2011

Pump, Pump And Awayyyyy!'s official!

I faxed in Kacey's paperwork for an Animas Ping yesterday. I was emailing with her CDE and the Endo about submitting the paperwork for Animas and Dexcom. Unfortunately we have to wait for Dexcom because they want her to get the hang of the new pump first before overwhelming her with another piece of equipment. Understandable! I explained everything to Kacey and she was fine with it but she told me it wouldn't be long before she understood her pump so they should just on and order Dexcom...LOL! She's a mess!

I'm about to bust because she has already picked out names for everything. Pump. Remote. Dexcom. They all 3 have girl names! I can't tell you all the names yet because she wants me to wait until she gets them so we can post a picture. However....I will tell you...she's calling them "The Power Pump Girls" (remember the Power Puff Girls?) Hahahaha! She loved that show when she was little! Anyway, she's got pumponthebrain syndrome and it's all she's talked about lately. I'm so thankful that the transition is going to be MUCH easier than I thought it would be. I think it would have been much more difficult if it was "Herbie" that she was giving up but since she's already had that experience then I think we're good to go!

Also...MORE basal changes this week! She was only in range 15% of the time last week...YUK! We also changed her I:C ratio from 1:8 to 1:7. I'm hoping that maybe this will help as well!
I had a long conversation with her about infusion sets yesterday. She wants the colored infusion sets now. She's always been so scared of the automatic inserter sets. I explained to her that she couldn't have the cute colored sets without having them in the auto sets. We talked long about her growing up and how she does all of her care except change a set. I know she *wants* to do it on her own but without the automatic one, she just can't right now. I explained that she doesn't *have * to be ready to do a set on her own but eventually she is going to want to do one and if we're already doing them, then she won't be so scared when it comes time to do them. Soooooo....I think when we go for pump training she is going to be ready to try the automatic one. It all goes back to the noise. She relates that click noise to being in the hospital and having her fingers torn to shreds by those HUGE lancets they use. When we came home from the hospital, I was doing her finger sticks and it took a long time to convince her that I was not going to hurt her like those HUGE lancets did. Once she gained some confidence with one certain pricker then that is all she would use. It wasn't long before she was doing them on her own but that is because she knew the sound, she knew the pain level and she was ok with it. That fear of the unknown is a scary thing for anyone so I can only imagine how scary it is for a child. We get into a diabetes comfort zone and we've been in that zone for almost 2 years now. Same pump. Same infusion sets. Same insulin. Same pricker. Same lancets. Same, same, same! Now we're about to step out of that comfort zone but I think I know Kacey well enough to soon as she gets over that fear of the unknown then we will be back into a new comfort zone with some really new and cool technology!'s the waiting game for insurance approval :)

Tuesday, January 11, 2011

Workout & Worship

Yesterday was my first day of what I call...Workout & Worship.

I hate New Year's resolutions. I always have! Every year I would make a list of things I would follow through with and by April, just about every one of them were thrown out the window. Then came discouragement. I've done this for years now. So this year I decided it was time to do something a little bit different. My best friend and I have started a program that I call Workout & Worship. On Monday, Wednesday and Friday, we will walk several miles and then on Tuesday and Thursday, I am going to get on my elliptical at home. We both bought new sweatshirts that have headphones built into them and I made us a playlist for our iPods of nothing but fast feel good worship music. Yesterday we walked 2 miles! It was soooo cold... 28*....but we walked! It felt so good to get out into the brisk air. The faster I walked, the warmer I got. My goal for all of this is to drop weight but it's nice to have a partner that shares a similar life to be able to share this journey with. I'm not setting any high expectations of myself right now...small goals, right? So every time we drop 10 pounds then we're treating ourself to something special...manicure, pedicure, shopping...something fun!

When I came home yesterday, I was tired but I also felt refreshed. I feel like I'm giving myself a new start! I deserve it! So....c'mon Chris Tomlin, Jeremy Camp, Lincoln Brewster and more because we're on this journey together to get this weight off my rear end! LOL!

Here's to my new start!

Ohhh and if you haven't registered yet...Check out the SUGAR BOLUS on Cara's Blog!

Monday, January 10, 2011

Tough To Hear

Today I heard something come out of Kacey's mouth that I never thought I'd ever hear!

I woke her up at 6:45am like I normally do and she grumbled. Yep, she'd been high all night...AGAIN! It seems like we just can't get these basals right. So she gets up and she comes out where I am and shes crying. And then....those words came out of her mouth like diarrhea.....

"Mom I hate school and I don't want to go"

I gasped and looked up at her. There she sat...tears rolling down her face telling me she hated school. WHAT IS GOING ON?!?!?! I asked her why she would say something like that? Was it the teachers? No. Was it the kids? No. Was it the school work? No. Then WHY? She said, "I don't like getting up when I feel bad and I want to do the work when I feel good." My heart broke into a million pieces!

Dear Diabetes,
Today Kacey woke up like any other normal day but today was a bit different. She has finally reached her breaking point with you. You are causing her to not like school now because she has to get up after you've reaked havoc on her body all night. I know she's growing and I know her hormones are a mess but PLEASE give my poor kid a break! She used to love school and she was happy there and now you make her miserable. Most days she can't even make it til 2pm before calling me to tell me that you're spiking her over 400. How do you expect her to learn like that? She can't focus, her head hurts, her stomach hurts, she can't see the board because it hurts too bad to try and look at the white board. Stop this now! I can't tell you how many times homeschooling has crossed my mind. It seems like the answer to everything but it's not fair that she has to be taken away from the friends she has had for the last 6 years and be with me all day. I'm asking you to just settle down for a bit so she can catch a break.
Thank you so much!
A very worn out Mommy

BTW....morning blood sugar...330. BLECH!

Sunday, January 9, 2011

Alert, Really?

I've had some time to gather my thoughts and try and sort them. The following post is in NO way meant to discourage anyone from persuing an alert dog, it's just MY experience with one certain facility.

Yesterday we drove to the K-9 facility that was over 1.5 hours away from us. I went into the whole situation with an open mind. I wasn't sure what to expect, other than I knew we'd see a demo of how alerting worked. When we got there, I was a little disappointed to see that the "training facility" was in fact a small room (about 12x20) with non-skid rugs. We took a seat on folding chairs lined up and we were told how they teach the dogs to alert with samples. One of the dogs that is a "demo dog" was brought in and we were shown how she alerts. We were told that she was a little hyper because she'd been in a kennel all day. (first grumble) It took her about 5 minutes to sense the "low scent" and it was pretty neat to see her paw at the trainer. She was awarded with food. We got to pet her and she was very excited to see us. We were told that the breed they like to use is Goldendoodles or Labrodoodles since they are hypoallergenic and don't shed. After we visited with her for a few minutes, she was led back to the kennel. My new navy blue sweatshirt was covered in dog hair. They don't shed? (second grumble) The next dog was brought in and he was nearly the size of a Great Dane and VERY hyper! Kacey was instantly turned off by this one because he was so big. He is a "started" dog so he hasn't gotten all of his training yet. He was a nice dog but WAYYYYY too much dog for us. When we were shown how he alerts, he seemed to just be excited to get some food and it didn't look like much alerting to me. (third grumble) He was taken back to his kennel and the third dog was brought in. She was much smaller and came in jumping around like a frog. Another one that was high strung. She appeared to be alerting but again, it seemed like she knew he had food in a cup connected to his belt. She kept trying to jump on him and he turned to us and told us that was her way of alerting. (fourth grumble) All the dogs had basic obedience training but none of them had been public certified yet and that was something we'd have to take classes to do. We'd have to travel down there 1-2 times a week to work with more obedience and scent training and then work on getting public certification. I'd pretty much made up my mind by this point because you know how you get a gut feeling that something just isn't right and it sounds "too good to be true". I didn't get the impression that they'd been doing this very long and wrapping up $10,000-$20,000 in a dog is HUGE! I looked down the row of chairs at Frankie and he sat there quietly and I could tell that he wasn't showing approval. We told the trainer that we'd like time to think about this since it was a huge step for us. It was such chaos that I didn't even get any pictures. The trainer explained to us that a fully trained dog will cost $20,000. He doesn't push for that because they like the families to be involved in the training so they like to place what they call "Started" dogs. These dogs cost $10,000 and they help you corporate funraise to absorb the costs. These started dogs have basic obedience class and have started scent training with low scents. It is then the families job to pick up where they leave off and travel back and forth for training and then start going out into public with the dog to work on public certification. The trainer told us they like to place started dogs because it's cheaper for the families and we can "customize" the scent training, etc. (insert red flags waving wildly)

As we walked out, Frankie looked at me and said, "Well?" I kinda shook my head and he said, "You tell me what you're thinking and then I will tell you how I feel about it." So I turned to Kacey and asked her what she thought? She went on to tell us that she thought the dogs were too big (they were a little bigger than a Lab) and it was hard to tell if they were alerting or if they just knew the trainer had food and were giving them their paw. She was right! She was having the same feelings that we were.

Right now, it's not the right time. It's not the right facility for us. I'm scared to raise $20,000 for a fully trained dog and then not get what we pay for. It's a tough situation! I just wasn't impressed enough and it makes me sad but it's really not for us right now. I'm just not totally convinced these dogs were alerting. It just felt like they were finishing obedience training and sitting to give a paw to shake. I was really worried that Kacey would be in tears if we said no right now. She wasn't all that disappointed. She actually smiled and said, "I'm getting a new pump and a CGM so I will be just fine Mom!" Ahhhhhh! :) Thats my girl!

So for now, thats what we're going to do. We're heading down the road with Animas and Dexcom!

Friday, January 7, 2011

Pump Class

Oh boy! Where do I even begin?

I felt like we were back at square one again because I really didn't know much about MiniMed vs. Animas. All I really knew was what I read and the reviews that you all gave me. I went into the class with a very open mind and I had no clue which pump we'd end up really looking at.

As we got off the elevator, the MiniMed pump rep snagged us and began his "spill" about the pump and all it's perks. I sorta felt like we were shopping for a new car and he was the salesman! There was another family there with us and he went on and on about how the pump works. About half way through, he asked if we had any questions. Ummm....wrong question! LOL! I gave him a run for his money and blasted him with all the questions I had. Kacey had a MiniMed pump in her hand but she didn't have a smile on her face. My first question to the MiniMed rep was....Is it true, since it's what I hear, the MiniMed CGM sites are MUCH more painful than the Dexcom sites? He gave me a bit of a puzzled look and I explained that we were already pumpers and we were choosing our next pump but the CGM was something we really wanted with as little pain as possible. He then went on to tell us how it worked. Thats NOT what I asked! I asked if it was painful? So then he explained how it was inserted. NO! Thats NOT what I asked! He finally said, "What have your Mom bloggers said about it?" (Yep, told him I'd talked to all of you about it!) Again I said, "I heard it was painful and uncomfortable." He then replied, "Well it's a larger needle than your infusion set." Kacey handed the pump back and looked at me with the "Mom Im ready to go" look. We breezed right by the OmniPod rep since she wasn't interested at all. (I will come back to this later on) Around the corner stood...Animas! I've been tossing back and forth over this and it didn't take long to settle myself when I saw the smile come across Kacey's face. It was the smile I saw when she first held a Cozmo pump. We were tickled to see Kacey's very first CDE, Nurse A. She was there the night Kacey was diagnosed, she was there the horrible morning after, she was there when we chose "Herbie" and now here she was again...only this time she was not there as a CDE. She is now a rep for Animas! This settled my nerves as well. She was helping another family so we started talking with the other rep, who happened to have one fantastic personality! I stood there watching Kacey press the buttons as she showed her how to bolus and my heart was swelling. I listened as Kacey asked questions. She told the rep about her favorite features and of course, I voiced mine. Kacey was fascinated with the remote and the color, VERY easy to read and navigate screen on the pump. After we talked to the reps, we went into another room for the class. Since we're pump upgrades, we didn't have to sit through the class with all the other new pumpers. We were in a class with another family that were also Cozmo users and having the same issues that we are. Their daughter has been on a Cozmo for 6 years and they were looking at Animas and Omnipod. After a very informal question and answer session, we were given the chance to try on a pod if we wanted or we could try a new infusion set. The other little girl was interested in the Omnipod so she went first and we all watched as the pod was filled and applied. The girl did not realize that she was going to actually get stuck so it was quite a shock when the CDE said, "Here it comes" and we all heard a "shunk" sound. The girls eyes got as big as quarters as she realized she got stuck and she immediately tried to hold back tears as she walked back to her chair in front of Kacey. It was only a few minutes before she began to cry...and then I looked over to see Kacey in full blown tears!!! I hugged her and asked her why in the world she was crying? She continued to cry harder as she said, "Cuz I know her pain". Well then the little girls Mom and I both welled up with tears because we all felt it! I then went on to ask more questions about the Omnipod because I really wasn't that familiar with it but I didn't want to completely rule it out, even though Kacey already had. Over a 3 day period, Kacey takes in about 240-250 units so this would mean we'd be changing the pod every 2 days instead of every 3. thing that I didn't realize was...once the insulin is in the pod, there is no extracting it. So if you bump the pod and it comes loose and you have to take it off, then you lose that insulin! Ummm...for us....we're using just about 3 vials a month and if we're making those sorts of boo-boo's then we're going to run short on insulin and that completely scares the crap out of me! Then, the thought of the PDA being something she has to carry around unattached and the thought of it being left somewhere and no way to give a bolus other than the PDA. We just didn't think the Omnipod was something that was right for us right now. Yep, Kacey already knew that but I wanted to give it a chance! I know the Omnipod has been wonderful for many of you and it's so nice to love your pump :) (please dont send over any hate comments...LOL!) So then, my other questions were directed for CGM's. I wanted to hear about all the differences in the MM vs. Dex....and I got them! I got to see that freakin HUGE needle/cannula from the MiniMed CGM (yowserssss! bless those of you that can wear it comfortably!) but then I got what I asked for...pros and cons of each one. The CDE had to be neutral since it was ultimately our decision as to which one was being chosen and she didn't want to sway us in any way. So that was nice but there are times when you do want some validation that you're making the right choice...even though there really isn't a right or wrong choice with these pumps. It's all about preference and what works for you or your child. So.......what did I do? I went back to Nurse A, of course! I knew she could give me the feedback I was looking for :) and she did! Kacey pressed more buttons and played with the Ping remote while I asked more questions about Dexcom. While we were in the other room, I did learn something that I did NOT know about CGM's. For those of you using the Dexcom, did you know that it's not pediatric approved and it's not accurate when taking acetaphetamine? This was new for me! So the CDE was telling us that our Endo office does not have a Dexcom rep because they are a pediatric Endo office and it is not something approved for pediatrics....BUT it is something we can choose if we want it but she wanted us to understand that if we needed help with it then they could only give us the 1-800 number to refer to since they wouldn't have anyone there to help. WOW! OK...the CDE had told us she had worn both sensors before and she did find the MM sensor to be a bit uncomfortable but then we also had to realize that the Dex sensor is wire thin and we had to ask ourselves what would we do if that thin wire sensor broke off in her skin? Yikes! Talk about not wanting a CGM...haha! So then I talked with Nurse A some more about the whole issue with medication and she asked me, "Would you check Kacey's sugar more when shes sick and has a fever?" Ummmm, yep! "OK, then you don't need that Dex sensor to be accurate, right?" Ahhhh, right! I also found out....50% of MM users that used the MM CGM ended up switching to a Dex :) So again, it's all in what you want. I felt like I learned so much and I asked so many more questions than I did the first time we went to class. It felt great!

Sooooo....what did Kacey choose?

Kacey chose the pink Animas ping with a pink & purple camo case and a Dexcom CGM.

I have to fill out all of the paperwork and fax it in on Monday. I'm not sure what our out of pocket expense is going to be yet but we were told that Animas would give us a trade in allowance if we traded her Cozmo. As soon as she heard that, she broke down! "Mommy, PLEASE don't make me give my Cozmo to them!" Ughhhhhhh! We went through enough trauma when we had to send "Herbie" back so I don't think we are going to trade in "Goober". I will just let her keep it as a spare since she will still be able to use the Comfort Short sites with the Animas pump (another reason we liked it!) Kacey is dead set against using any of the automatic inserter things. We use the manual insert ones and thats what she is comfortable with....and thats fine...but I'm glad we will have the option of the automatic ones because I'm guessing within the next year she will want to do a site on her own. But for now, we're sticking with what works for us! :)

So to all of you that gave me all the wonderful info on both pumps....THANK YOU! I went into the class with the knowledge that you all had given me and I was able to say, "Well my D-Mom friends said....." and that was some nice back up! :)

Tomorrow is another BIG day for us! We go to meet the diabetic alert dogs and see how they work. We're very excited! I promise to get some pics :) I took my camera to pump class with the intentions of getting pics and I ended up so involved with questions and pushing buttons that I forgot to get a few pics. So I will be sure to capture some pics and hopefully some video :) It's going to be a neat experience and I'm thrilled to get the ball rolling on this!