Queen Alopecia Loves Her Buff!!

Today happened to be picture day at school.  Normally, an elementary student would be excited about getting ready for the big picture day at school.  Wearing new clothes, applying lip gloss, picking out earrings, doing their HAIR, but Queen Alopecia was stuggling this morning.  Today would be the first school picture with no hair.  Yes, she has a wig, but she absolutely hates wearing it.  She said that she doesn't feel like herself; like she is trying to be someone  else, and it's not that comfortable.  I think she looks adorable wearing her wig, but she is the one that has to deal with this situation.....this autoimmune disease.  If she doesn't want to wear her wig, I'm not going to make her.

She said this morning, "Mom, I'm just not going to look the same.......I'm never going to be like I was!" My heart broke for her.  Ofcourse, I try my best to comfort her.  She is beautiful with or without hair, but she is now beginning to recognize the snickers, the laughter, the staring, the pointing......

It makes her smile when her father and I say "You are beautiful", but she longs to hear it from someone else other than her family.  We speak the truth, family or not, but she needs and wants more.

She wore her new pink dress (Is there really any other color??), her hoop earrings, her lip gloss.....  We painted her nails pink and then it was time to pick out some type of headcovering.  She has worn all of them here and there and today it was like trying to create a new hair style.  I could see the frustration on her face.....  The headcovings she had were not working with her dress.  Little did she know that I bought her a few new Buffs for Christmas and it was time for an early Christmas present.   You should have seen her face when I reveled her new Buff from KitShack - this website has the best Junior Buff collection that I have seen online up to this date.  I showed her the Butterfly Buff that matched her dress perfectly and Queen Alopecia's smile was priceless.  She looked into the mirror and had such a big smile on her face.  I think inside she knows that what I say is true - she is beautiful inside and out.....and that I'm not just saying that because I'm her mother.

Hope to post the school picture soon.  Until then.....here is Queen Alopecia displaying some of her buffs!!

Mail Exchange.....Building Friendships!

 A big shout out to Cindy from Eaten Alive who organized a mail exchange for our kids.  The best part is that not only kids with Type 1 were included; Their non-D siblings were included too.  Both my girls were really excited about getting involved and communicating with another child their age who might live in a different state or even a different country.  Very exciting!!  Queen Alopecia was matched up with Bridget, Reyna's daughter from Beta Buddies!!  How cool was this?....I read Reyna's blog all the time and now our daughters are penpals and are in the process of building a great friendship.  Very Cool!!  Queen Alopecia was so excited about her package and couldn't wait to open it.  Below are pictures of Queen Alopecia the day Bridget's package arrived...



Queen Alopecia thought that the box was very pretty and she refuses to get rid of it because it's just too pretty to throw away!



Queen Alopecia thought it was too funny that the gift was wrapped inside!



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Queen Alopecia reading every word that Bridget had to say and thought it was cool that Bridget just moved into a new house.  We also will be moving into a new house soon. Bridget told us that her brother Joe has Diabetes and that if she wanted to learn more about it, she could look it up online....lol!  Queen Alopecia said, "I know all about Diabetes!"  Another thing they have in common! Then the question of all questions....Hey mom, can we get a 55 inch TV like Bridget's family?  Daddy thinks that it's a great idea!



Queen Alopecia...."How did Bridget know that I love this stuff"?

Thank you Bridget! I hope you get my letter soon and I hope you like your gift!

Write me back soon!

Once You Go Tallygear....you won't go anywhere else!

Head on over to Tallygear and try to win (in my opinion) the best insulin pump belt out there for very active children.  The Sugar Princess has many insulin pump packs/pouches/belts and she continues to wear all of them.  Some because they match her outfit.....some because they glitter or sparkle, but the one that she absolutely loves are her Tallygear Tummietote Belts!!  The Sugar Princess is a very active little girl and when she is playing, running, and tumbling around these belts keep her insulin pump in place!  They are also so comfortable that the Sugar Princess forgets that she is wearing her pump and she sleeps with it one too.  You cannot tell that she is wearing it under her shirt.  You know have an opportunity to win one of these great belts and the best part is that they come in different sizes and can be used for other things besides insulin pumps....cell phones, ipods, etc.  I can't say enough good things about them.  Below is The Sugar Princess displaying her tummietote belt!

Wearing her tummietote belt while swimming!!

Wearing her favorite tummietote belt under her shirt!

P.I.T.A.....Not what you think!

We have a member of our family named ...."Pita".  Pita is our 13 year old cat!  When Queen Alopecia was little she often asked, "How did Pita get her name?"  We told her that it was because Pita loved to eat sandwiches,  but the true meaning is because this cat is a Pain In The Ass!  Did I mention that Pita is actually a "boy", but he is fixed so we still call Pita a girl...lol! This cat constantly follows you around, meows constantly, would sleep on your face in the middle of the night if you would let her (instead settles for your chest), and now that she is old....she can't seem to poop in her kitty litter box!  My basement contains five kitty litter boxes for 1 cat!  Five boxes that each contain a piece of linoleum under it....Hey, it makes for quick clean up, right?  My husband wishes that Pita would find her way outside one night and the coyotes would get her, but she has been with us basically from the beginning.  We (my husband and I...not the cat!) will celebrate our 14th anniversary this November.  Pita again is 13 years old.  We can't get rid of her....the kids adore her....they dress her up in baby clothes, try to hand feed her, etc. 

Well, Pita redeemed herself the night before last.....she caught herself a MOUSE! (Husband left basement door open by mistake....GRRR!) There I was chasing the cat around the house yelling....drop it, drop it (ofcourse I wouldn't say it if the mouse was still alive!).  Finally, Pita dropped the mouse and I got rid of it, but not before the kids got a real good look at it (they were following me around while I was yelling like a mad women..lol). 

There it was....a mouse missing it's head....GROSS!....
Queen Alopecia...."Mom, I guess I know what Pita likes to eat."
Me...."Mice"?
Queen Alopecia..."Mouse Brains!"
Me and The Sugar Princess....."EEWWWWWW"!

Afterwards we noticed that that little mouse must of put up a little fight...

Pita with her "War Wound" on her nose....a scratch from the mouse!

Don't worry.....Queen Alopecia was there to "mend" poor Pita...

Queen Alopecia tried to mend Pita's wound and wrapped her up in a blanket!
I think Pita saw the camera coming and stuck out her tongue!
Poor Pita....you little Pain in the ass!

Candy Hearts Give-A-Way!

Listen up people....if you want an insulin pump pack/pouch for your child to use when they are really active you need to look into TALLYGEAR (Tummietote Belts) for your son or daughter.  The Sugar Princess really loves wearing hers and it doesn't move around and bounce around like other pump pouches.  Here are some photos of The Sugar Princess wearing her tummietote...

Front View - You wouldn't even know that she is wearing a pump under her shirt.

(Her favorite color is yellow)

Back View!

The Sugar Princess loves to wear them swimming too because they stay in place and do not move around...the tubing from her pump stays in place too! (Note...she has an Animas Ping Insulin Pump which is waterproof)

My little water bug displaying her tummietote belt and showing off her "Pink" Ping!
She looks so tired, but I think it's because she wore her goggles all day!  She loves to swim!

I can't say enough good things and I'm looking forward to new designs.  I highly recommend them, but if you are unable to buy one right now you are in LUCK!  Head on over to CANDY HEARTS right now and enter to win your child or yourself your own Tummietote.  You don't have to have type 1 diabetes to love these belts!

We Survived The First Week!

The summer months just went way to fast for me.  I guess because I knew I was going to have to send The Sugar Princess to school.  When she was diagnosed over three years ago at the age of two, my husband and I learned so much about this horrible disease...this beast of Type 1 Diabetes.  Truthfully, it scared the shit out of us.  Everything changed! 

We knew the day would come that we would have to send her to school.  More like....My husband and I dreaded the day that we would have to send her to school.  We were scared!  We knew that we had to make a goal of having The Sugar Princess on an insulin pump before sending her to Kindergarten.  It would be better for her and we also thought that it would be better for the school too.  I had numerous nightmares about the school giving her the wrong dose of insulin in a syringe.  That the "unspeakable" would happen.

So when she was two we knew that we had to take the journey of getting her ready to enter the world of elementary school.  We had our fair share of the evil NPH, then we were on just a sliding scale Humalog and Lantus, then we switched to Novolog and Levemir, and now she is pumping only Novolog.  Throughout, we continued to (and still do) check her blood sugar approx. 8-10 times a day, and we learned how to carb count, bought a food scale and learned to give corrections. 

Let me tell you when we started using math formulas to carb count and give corrections for highs/lows....I was thinking to myself....I remember sitting in algreba class in high school saying to my friends - "When am I ever going to use this stuff??"  Now I use it daily!! 

When this huge box arrived this past summer, I knew what it was and I just wanted it all to go away.  I was angry and I spent the beginning of the summer feeling jealous of other families whose lives are so carefree.

The Sugar Princess opening the box that contains her insulin pump....with a little help from Queen Alopecia.

The Sugar Princess with her Pink Animas "Ping" insulin pump....Older sister, Queen Alopecia is there for support.  The look on The Sugar Princess's face screams fear....if she only knew that I was feeling the same way.

This past July....The Sugar Princess transitioned from insulin injections (up to six times a day) to an insulin pump (one shot every two to three days).  A few weeks before our pump start, I have to admit, "Were we doing the right thing?"...."Will she be okay being hooked up to something 24/7?"....the questions, doubt, nerousness, fear, excitement, etc. just kept building until July 12th, 2010.  The day The Sugar Princess started wearing an insulin pump.  We couldn't believe that we finally made it to this day.

The Sugar Princess displaying her pump proudly....We are so proud of her!

 After our first week with The Sugar Princess on a pump we were wondering why we didn't start this sooner.  Fear played a big part I guess.  We still check her blood sugar approx. 8-10 times a day and there are still highs and lows, but we are still in  the process of "Tweaking", but we love the "Ping" and all of it's cool features...like being waterproof, being able to use a remote, and lets not forget about the "insulin on board" feature. 

The Sugar Princess wearing her insulin pump in the swimming pool with help from her tummietote belt!
We love TallyGear!!

We then felt better prepared sending her to school, but we were still worried.  The only other people who have cared for the Sugar Princess besides me and my husband were my husband's parents.  No other family was willing to be "alone" with her.  At first I was upset, but again fear played a part.  I understand their fear....they are afraid that they will do something wrong.  If our family feels this way, would the faculty and staff at her elementary school be feeling the same way?

We had our 504 Plan meeting at school and it went very well.  They (the Principal, the school nurse, and the teacher) were very understanding, but we could tell that they were nervous.  They have never had a child this young with Type 1 diabetes enter their school.  There are two or three other students who have Type 1, but  they are older and can manage alot of their diabetes on their own.  Our Sugar Princess would need help with everything and we were also worried because at times she doesn't feel a "low" coming on. 

August 31st was the first day of school...

Queen Alopecia and The Sugar Princess on the first day of school.  Notice that Queen Alopeica is rock'in her Buff and The Sugar Princess is very stylish wearing her Gold Glitter Pump Pouch!

The Sugar Princess (and Queen Alopecia) made it through the first week of school.  I have to say that The Sugar Princess has the best teacher and school nurse (Queen Alopecia thinks that her teacher Rocks too!).  We also feel very grateful for having a school nurse at her school everyday. I know some families who do not have a school nurse.  I can't even imagine what they have to go through. 

The Sugar Princess's school have followed our 504/DMMP Plans to a "T" and the best thing is that they communicate with us very well (we have a health journal that comes home every night) are truly concerned about her well-being(is treating The Sugar Princess like their own son/daughter), are cautious (not afraid to check her anytime/anywhere), and very caring!  You have no idea how relieved we are.  It hasn't taken the worry away from me, but boy is my mind a little more at ease.

Yesterday, I woke The Sugar Princess up and this what happened...

Me:  "Sugar Princess it's time to wake up!"

Sugar Princess: "Do I have school today?"

Me: "Yes, you have school today."

Sugar Princess: "I  love school!"

We hope that things contine to go well at school and that both our girls have a fantastic school year!

The Diabetes Dude!

Meet Noah - The Diabetes Dude!  Please contact the The Ellen DeGeneres Show and help The Diabetes Dude spread awareness for Type 1 Diabetes and help raise money for a cure!



Thank you "Diabetes Dude" for helping kids like you and my "Sugar Princess"!

Lauren's Hope

First let me say "Thank-You" to Wendy for letting the D community know about a website called  Lauren's Hope.  They have a huge variety of medical bracelets.  Just today, I was thinking how close the school year is and how much we need a new medical bracelet for our Sugar Princess.  August can slow down anytime now!! Her old medical bracelet is so worn that you can't even read the wording "Type 1 Diabetes" on it anymore.  Right now Lauren's Hope is having a contest where you can try and win one of their bracelet's listed on their blog.  Everyone should go check it out!  You never know....you just might win!

True Beauty

Too Carb or Not to Carb

Okay, I'm a day late with this one, but I'm a new blogger!!  It's tough blogging everyday...how do you find the time to do it?  Anyways....technically day five, but we are going to call it day four...Lol!  Today is supposed to be about whether or not we eat carbohydrates (or whether or not we allow our daughter, The Sugar Princess, to eat carbs or not).  Some people believe a low carb diet is important in diabetes management, while others believe carbs are fine as long as they are counted and bolused for.  Which side of the fence do we fall on?...

http://www.cafepress.com/carbguys

Yes, we eat carbs!!  Our Sugar Princess is only five years old so eating carbohydrates is important for her growing body.   It's not everyone's way, but we believe that it is a personal preference.  Of course we don't let her eat alot of junk.  Sometimes we even have to remind her that she can't have something because it's not a healthy choice, not because she has type 1 diabetes.  Don't get me wrong, we try to be as healthy as possible, but every now and again we allow her to endolge in the "special treats" of every meal.  See below...
 
Her normal breakfast items - waffles, pancakes, toast, berry muffins, 1/2 bagel, eggs, or oatmeal with milk, no sugar added choc. milk, or cystal light (**special breakfast treats...cereal (coca puffs are her favorite), pop tart, or toaster strudel**).  If we have a very long night or we are in a hurry - we keep a box of no sugar added instant carnation breakfast on hand for emergencies.  She is still on multiple daily insulin injections so she has to eat at certain times....we try to keep her on a strict eating schedule.  This lets us keep track of certain trends that might be happening.
 
Her normal lunch items - she loves sandwiches (egg salad and tuna salad being her favorite), fruit (loves them all), macoroni and cheese, grilled cheese, plain noodles, crackers and cheese, 100 calorie snack packs, sugar free jello or pudding, baked chips, hot dogs, baked french fries, with usually crystal light or milk.  (**special lunch treats...we will add a piece of candy (we love mini size) to her meal or we will count in a dessert...cookies, cupcake, etc.**)
 
Her normal dinner items - meat, fish, chicken, mashed potatoes w/ gravey, she loves broccoli, pineapple with cottage cheese, corn, beans, pizza, noodles, sandwiches - also loves tuna subs at Subway, with crystal light, water, milk, or diet soda.  (**special dinner treats...fried foods, eating out - , and again we will incorporate a counted carb dessert with dinner...ice cream, etc.**)
 
Her normal snack items - we live for 100 calorie snack packs, crackers with cheese, 1/2 PBJ sandwich, with 1/2 cup milk or crystal light.
 
 
WE COUNT EVERY SINGLE CARB and WE WEIGH ALL OF HER FOOD on an electric scale!!  The calorie king book? We take that book everywhere we go and if it's something that can't be looked up, we ESTIMATE and hope we get it right.  We keep track of different foods and how much insulin we give her.  Some food items, we know to give her a little more insulin than what her insulin to carb says to do or give her a little less, etc.  When she has a perfect number after an estimation, my husband and I give ourselves a high 5....it's like we just won a competiton...LOL!  We bascially allow her to eat anything in moderation.  We are not the cupcake police!!  If a classmate brings in a snack, she is allowed to have  it, but since she is still on multiple daily injections, she has to wait and eat it at lunch (if my husband and I are working).  We are going to be pumping soon, so we hope that this gives us a little more flexibility and hopefully it makes her feel a little more "like everyone else".