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".

Our Biggest Supporter

Today is day three of "Diabetes Blogging Week": Your biggest supporter. Via Karen ...."Sure, our diabetes care is ultimately up to us and us alone. But it’s important to have someone around to encourage you, cheer you, and even help you when you need it. Today it’s time to gush and brag about your biggest supporter". 

There have been supporters throughout our journey with The Sugar Princess's type 1 diabetes.....

• My husband supports me and and I support him a great deal (he is amazing)!!
•  TuDiabetes, Kerri from Six Until Me, Children with Diabetes, Robert from dLife,and Type 1 Parents opened the online diabetes community door....I love all my D-moms (and dads) - what would I ever do without all of you!!  The encouraging words, the friendship, the insight, the love, the knowledge, the "tricks", allowing me to vent, cry, and be me, the laughter (when I need it the most to keep sane!), the understanding....the support.   I love you all.
• My in-laws...A.K.A: "Papa" and "Beeka" - the only family members who stepped up to the plate and help us take care of our Sugar Princess.  They don't feel comfortable taking complete control yet, but what they have been able to do so far, we are very thankful for.  They call us with every blood sugar check and we determine how much insulin to give, what food to give her (how many carbohydrates, etc).  They took a giant step a couple of months ago and had The Sugar Princess spend the night.  They called us with every meal time, snack time, blood check, insulin injection, etc., but it was still great for my husband and I to finally (in three years) have an overnight "date" together.  I think they would be very capable of making decisions and corrections/calculations on their own, but they are very afraid that they will do something wrong...I (and my husband) don't mind that they check in!! I would probably call them anyways lol, because I'm such a worrier!  It makes me sad that my mother and sisters haven't made any step in helping and sometimes, I admit, it makes me angry, but I'm hoping someday we are lucky enough to have a Meri's Lisa!

Making The Low GO! (ABC STYLE)

Day two of Diabetes Blogging Week....today's topic is lows.  A low occurs because the body doesn't have enough sugar to burn for energy.  The level of sugar in the blood falls too low.   Causes of a low could be

• Meals or Snacks are late or missed
• Exercise
• Insulin dose is too high (sometimes we have to estimate how much to give to The Sugar Princess...very frustrating)
• Taking a bath or shower soon after taking a shot of insulin
• Insulin dose peaking at a different time than usual (this happened sometimes when The Sugar Princess was on NPH insulin...NPH is evil!)

Symptoms of a low blood sugar are...

• Hunger -- The Sugar Princess usually says, "My tummy hurts!"
• Shakiness
• Sweatiness
• Headache
• Confusion
• Drowiness -- The Sugar Princess sometimes gets really tired and wants to go to sleep.  Is she tired or low?
• Behavior Change -- Sometimes The Sugar Princess gets alittle mean.
• Vision Problems
• Loss of Consciousness
• Seizures
• Coma and even Death

Sometimes The Sugar Princess can feel a low coming on, but there are other times we check her like normal and a 29 will show up on her meter!!  A 29 and she doesn't feel or she didn't show any symptoms...that is SCARY!  You wouldn't believe how fast I move!  What do we use for lows...a variety of things.  Here are some examples that we use.....ABC style! Lol! (I think I'm procrastinating with my school work again!)

A is for Air Head Taffy (mini size)
B is for Bananas
C is for Cake frosting
D is for Dum Dum pops
E is for EL Fudge Cookies
F is for Fruit roll ups
G is for Glucose Tabs
H is for Honey
I is for Iced Animal Cookies
J is for Jelly Beans
K is for Kudos Bar
L is for Lemonheads
M is for Marshmallows
N is for Necco (wafer candy)
O is for Orange Slices
P is for Pudding
Q is for Quaker Granola Bars
R is for Reese's
S is for Skittles
T is for Tootsie Rolls
U is for Uh-Oh! Cookies
V is for Velveeta cheese with Crackers
W is for Wonka Runts
X is for "Xtra" Creamy Breyers Ice Cream
Y is for Yogurt
Z is for Zucchini cupcakes  (okay, okay...maybe not, but Z was a hard one! Lol!)

A day in the life....with diabetes and added alopecia!

So Karen over at "Bittersweet" has challeged the online diabetes community with a week's worth of blog posts.  I'm pretty new to the blogging community, but thought this would be a great challenge and in the process maybe meet some new friends and also learn more about my D-moms and dads who may be up to this week's challenge.  Seeing what they go through in a typical day and having some piece of mind that my husband and I are not alone!  Today's post is "A day in the life...with diabetes".  Since we have two daughters each living with their own autoimmune disease, I thought I would also throw in some of the things that we have to deal with in a typical day that not only includes diabetes, but also alopecia universalis.

THE CHALLENGE BEGINS....

5:20am...I hear my husband's alarm go off for work and I can't believe that another day is here.  I try to get another half hour of sleep in.

6:00am...My husband gets our oldest daughter, Queen Alopecia, up and moving.  She eats breakfast.  When I hear her entering the bathroom, I get up and give our youngest daughter, The Sugar Princess, a kiss on the check and I get up to pick out their clothes for the day.  It's a school day so I pick out their clothes (believe me....if I let them pick out their clothes, it would be a disaster!).  The Sugar Princess was diagnosed with type 1 diabetes on June 12th, 2007.  Since that day she has not slept in her own bed more than a few times.  I guess it's the fear inside of me that I will not hear her cry for help....that I will miss a low...that the unspeakable will happen.  Worry seems to engulf every inch of me and I do sleep better when she is near.  I know the time has come for her to sleep in her own bed, but it's hard to take this next step.  Maybe I should invest in a baby monitor?? 

6:10am...both dogs go outside to do their morning duties.  Queen Alopecia gets dressed and gets her backpack ready.  We usually forget to sign her daily folder the night before so it's at this time that we sign it and add any lunch money or school notes to her folder.

6:30am...It's my job to apply Queen Alopecia's wig.  She has an autoimmune disease called Alopecia Universalis...she is completely bald - complete scalp and body hairloss including eyebrows and eyelashes.  It usually takes more than a couple of tries to make sure it in on right.  She complains about the discomfort alot lately...it's our first spring/summer wearing a wig and the hot weather/sweating/etc. is taking it's toll.  It's a good wig day today and I'm amazed how "real" it looks.  I insert the double sided tape and hope that it keeps the wig in place.  My husband or I get The Sugar Princess up and get her dressed... she is usually a bear in the morning, but you really can't blame her with all the blood checks in the middle of the night!  After she gets dressed, we check her finger and correct if needed.

6:45am...Queen Alopecia gets on the bus for her one hour ride to school!!  The bad thing is that we live five minutes away from the school.

6:46am...Worry about Queen Alopecia and hope her classmates treat her with  kindness.  Upset with myself because I'm not really good at styling her wig....sometimes I wish it was 1980 something because she would fit in quite well.  Seriously....need more practice, but it is getting better.

7:00am...My  husband takes The Sugar Princess to his parents house.  They are the only family members who have stepped up to the plate  to help us with The Sugar Princess's care.  I'm truely greatful for them.  If it wasn't for them, I would have to quit my job!  It's now time for me to get ready to go to work.

7:10am...My husband arrives at his parent's house and The Sugar Princess's blood sugar is checked again and we give her insulin before she eats and then she eats breakfast about 15 minutes later.  She receives two insulins at this time.  Novolog is her fast acting and Levemir is her long acting insulin.  She gets 1 and 1/2 units of Levemir and her Novolog is based on what her blood sugar is and how many carbs she will be eating.  On a typical day she gets 2 units of Novolog.  My husband leaves for work after giving The Sugar Princess her insulin injections.   


7:35am...I leave for work and I always listen to the "Nascar" sirius radio station.  Go Biffle #16.

8:00am...Both my husband and I should be arriving to work.  I wonder how Queen Alopecia and The Sugar Princess's mornings are going.

8:30am...My mother in law drops The Sugar Princess off to preschool and at this time I hope  that they keep a close eye on her.  Did we estimate her insulin to carb ratio right? Will they be able to catch a symptom of a low?  She is only at Preschool for three hours, but type 1 is so unpredictable.  It's a balancing act between insulin, the amount of carbs that she eats, exercise, etc.  

10:30am....I teach third grade PE at this time - the same grade that my daughter, Queen Alopecia, is in.  I wonder how she is doing.  How are the kids at school treating her?  Queen Alopecia told us about the boy who calls her "baldy girl" and I wonder if he is being nice today.  Queen Alopecia has pretty good self-esteem and having someone trying to break her down just gets me upset.  She is strong and I just continue to believe that she will continue to stick up for herself.

11:30am...It's snack time at The Sugar Princess's preschool.  She doesn't get to eat the snack that students bring, but she is allowed to have it....she just cannot eat it until lunch time.  The Sugar Princess is  okay with this, but I know that at times it's hard.  The school is pretty good in informing us on party days and we try our best to be there (at times my mother in law will try to be there too) so she can participate "fully" in the party. 

11:45am...The Sugar Princess is picked up from preschool by my mother in law.  Today, my mother in law told me that as soon as she walked in the door, the preschool teacher said "I noticed that The Sugar Princess was acting kind of funny and complained about how tired she was".  She checked her blood sugar and it was 61.  She was happy that she saw the sign and corrected her with a glucose tablet, but she was scared/worried at the same time.  Welcome to our World.

12:00pm...The Sugar Princess's blood sugar is checked and my in-laws will call us with her number and we will calculate how many carbs to give her and how much insulin she will receive. A Novolog insulin shot is given 15 minutes before lunch and it is based on what her blood sugar number is and how many carbohydrates she is going to eat.  My mother in law gives her the insulin shot when my husband and I are working.  Sometimes my father in law will give the shot too. 

12:01pm....Wondering if we calculated right.

1:30-2:00pm...Sometimes The Sugar Princess will fall asleep and take a nap.  Watching her sleep your mind starts to go wild...Is she sleeping because she is actually tired or is she sleeping because she is low.  Another blood sugar check.

3:00pm...Queen Alopecia gets out of school and The Sugar Princess gets her blood sugar checked.  Correction is given if needed. We give an insulin shot if she is high and we give her some type of sugar if she is low.

3:30pm...I get out of work.....one more day closer to summer vacation...Yippy! Dogs are let outside to run and play.

4:00pm...I get home and Queen Alopecia gets home shortly after me.  My mother in law is already there at my house just to make sure someone is there to get Queen Alopecia off of the bus (just incase I'm running late) she brings The Sugar Princess home and we chat for alittle bit.  The girls go off and play, but first Queen Alopecia takes off her wig...freedom.  She doesn't feel comfortable going to school without some type of headcoving so when she gets home she can't wait to take it off.

5:00pm...Time  for Queen Alopecia to do her homework and when she is finished we practice her multiplication and divison flash cards and also practice her spelling words.  The Sugar Princess...we practice her letter flash cards.

6:00pm...Time for another blood sugar check.  It's dinner time and she will receive not only her fast acting Novolog insulin but also longer acting insulin, Levemir, 15 minutes before she eats.  It's been almost three years since The Sugar Princess was diagnosed yet everytime I give her her insulin shots - I hold my breath.  I pray that it doesn't hurt too much.  I pray that it doesn't bleed - she gets so many little bruises on her body.  I pray that all the insulin goes in and none seeps out when I pull the needle out of her.  I pray that I weighed her food properly and gave her enough insulin...and I pray that I didn't give her too much.  When she is eating, I pray that she eats everything.

6:30pm....Time to let the dogs outside again, feed them, feed the cat, feed the hamster, feed the fish...yikes!
7:00pm...Me time - time to stay connected with my online families.  My D-moms are the greatest women I've "never" met....in person anyway. Lol!  They have been there for me....for friendship, for support, for venting, for letting out all my frustrations, to listen to my worries..............to let me know that we are in this together - that we are not alone.  They "get it"!

8:00pm...I usually have a moment where I think I should go to the basement and get on the treadmill, but then something comes up and I never get that far.......some day!

8:30pm....Daddy gets home from work and the girls are so excited to see him.  He also asks about their day.

9:00pm....Bedtime is here!  Time for another blood sugar test and both girls get a bedtime snack.  The Sugar Princess receives yet another Novolog insulin injection 15 minutes before her snack. 

10:00-11:00pm....Trying to catch up with my school work, but I'm a big procrastinator!!! Find myself getting sucked into some reality tv show.  Dogs are let outside for the last time tonight.

12:00am...I'm still awake...time to check The Sugar Princess's blood sugar.  Correction if needed.

1:00am...Checking The Sugar Princess again if her midnight check was kind of iffy.  Seeing whether or not she is starting to go up or starting to go down. 

1:15am...Finally going to bed unless she is low and then I will be up another hour...ugh!

3:00am....My husband or I get up again to check The Sugar Princess's  blood sugar.  Correction if needed.  Right now we believe that The Sugar Princess is going through the Dawn Phenomenon which means sometimes she starts to go high.   This usually happens, I think, when she is going through a growing spurt.  Time for 1/2 unit of Novolog....another insulin injection.  This disease is really unpreditable.  If she was really active through the day, then sometimes we have to worry about lows in  the middle of the night.  We then have to wake her up so she can drink a juice box to avoid a low.  Time to worry again.

5:20am....it starts all over again.

Happy Mother's Day

Happy Mother's Day to all my online mommy friends.  I woke up today to my husband and daughters making me breakfast in bed....with a tray!! Whoo Hoo...I feel like rock star!  Lol.  Seriously it has been a great day so far minus the snow that we got this morning in the northeast...can you believe it... snow in May!!  Anyway, I also received two hanging plants...one from Queen Alopecia with pink flowers and one from The Sugar Princess with yellow flowers....their favorite colors.  They also picked me out some new perfume - "Pleasures" from Estee  Lauder.  It smells so good, but the best gift  I got were homemade Mother's Day Cards....

This card (above) was from Queen Alopeica - my oldest (9 years old).  It was so sweet and the

"adventures" part of her card was just too cute!

This card (above) is from my youngest daughter The Sugar Princess - just as special and it says:

"Mommy, I love you very much!"

I hope all my friends who have children have a great Mother's Day.  To all my D-moms out there, here is a poem for you....I'm sure that all of you have heard about it before, but I find myself reading it alot.

HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES

by Erma Bombeck

     Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew."
"Forrest, Marjorie, daughter, Patron Saint Cecilia."
"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give child with diabetes to a mother who does not know laughter? That would be cruel".

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

Happy Mother's Day

Approved!

Since January 31st, we have been trying to get our insurance to cover the cost of a prosthetic hair device (aka "wig") for our nine year old daughter who was diagnosed with Alopeica Universalis in June 2009.  For those who don't know, a customized wig made out of real hair can cost over $1,200.00 dollars. Insurance or no insurance, we bought a wig in January for our daughter and turned the receipt into our insurances.Our daughter had pretty good self-confidence before this happened to her and we as her parents wanted it to stay that way....sooo we borrowed from our savings hoping that my husband's insurance would cover some of it.  My insurance flat out states that they do not cover wigs for any reason.  My husband's insurance stated that it did cover wigs (how much?...it was very unclear), but we kept getting denied with the reason....it is not a medical necessity.  How could they say that?  You stand in front of my daughter and tell her that.  It has been numerous phone calls back and forth, letters from our dermatologist, etc.  Yes, my daughter is healthy otherwise (knock on wood), but her condition, at times, causes significant emotional distress and embarrassment to her and can have an adverse impact in her socialization.  It's her mental/emotional health that we worry about. 

Today,  I came home to find an insurance letter which I thought was going to be another denial, but I found these words instead....

"Based on a review of the faxed clinical information provided, the above request for services has been approved.....Based on the information provided to us, this approval certifies the medical necessity and appropriateness of the proposed care and services....Excellus BlueCross/BlueShield has approved this request for services and will pay for these services according to the terms of your contract."

A BIG SIGH OF RELIEF!

Now on to the next insurance issue....getting coverage for our youngest daughter's insulin pump.....hoping to be pumping soon!

What Do You Worry About?

My oldest daughter, Queen Alopecia, who is in the 3rd Grade, is reading the chapter book "Charlotte's Web".  She reads three chapters of this book for homework each night and then has to answer questions about what she just read. Everyone is in bed (except for me ofcourse...I do the midnight blood sugar checks) and I wanted to read over Queen Alopecia's answer's just to make sure she was answering them correctly.  I then found myself in tears.....See below!

Queen Alopecia lives with Alopecia Universalis (an autoimmune disease where her own body attacks her hair follicles) read more here....

http://autoimmuneisland.blogspot.com/2010/03/alopecia-arewhata.html

Her answers really make me think about how her days at school go.  Are the students understanding, do they shy away from her like she is contagious or something?  Is she bullied?  Questions that I have asked her before, and she says that school is okay, but is she just saying these things so I don't worry about her?  Queen Alopecia is handling her situation well, but will her self-esteem continue to be strong?  This is what I worry about...
 
Then to also read that she worries about her sister's "numbers" (Type 1 Diabetes) just breaks my heart all over again.  This is what I worry about too.....
 
Worries....I seem to be consumed by them :(

Endo Appointment - One "Yawning" Time

This past week was The Sugar Princess's endocrinologist appointment.  She visits Pittsburgh Children's Hospital every three months.  Her doctor looks over her blood sugar log and discusses with us any changes to her insulin to carb ratios at meal times and/or any changes with her correction factor (how much insulin to add or subtract based on what her blood sugar number is at the time).  Our goal for The Sugar Princess is 120, but it seems now a days that her blood sugars are above this (sometimes way above)....growth spurt???  We do our best and hope for the best....but I continue to worry.  It is so frustrating!!  We also get the results of a blood test called an A1C.....for my non-D friends - this is a blood test that basically tells us how we have been managing her diabetes.  All of us D-Moms and D-Dads like to call it, "The mommy and daddy report card"!  Our Sugar Princess's A1C goal is below 8.  For the past year, The Sugar Princess has been 7.5 - 7.8, but this trip...7.4!  I know it doesn't seem like alot, but to us....it felt like we just won a big competition or state title or something.  Take that Diabetes!!!

Anyway, the appointment went great.  We discussed insulin pumping and made the decision to take the next step and turn in all the paperwork to our insurance company, etc.  We hope to begin The Sugar Princess on an insulin pump this summer.  Our choice...A pink "Ping" pump!  Really?...is there any other color??  Ofcourse if they made a yellow "Ping", The Sugar Princess would be all over that.  Yellow is her favorite color.  I'm nervous, scared, and excited about this step.  It's going to feel like we are starting over from day one, but all the positives out weigh the negatives and we hope that we can control/manage this disease even better.

The worst part about the whole trip is when The Sugar Princess gets her blood drawn....as soon as we walk in "that room" and she sees "that chair"....instant tears.  The look on her face just breaks my heart.  It's the same look I seen on the day that she was diagnosed....it takes alot not to just break down and cry, but I save that for behind closed doors.

The best part about the whole trip was when The Sugar Princess began to understand when she would yawn, it would make Daddy yawn.  The Sugar Princess was hooked.  She would fake yawn and fake yawn over and over and each time my husband couldn't fight off the yawning.  It was so funny and we all were laughing so hard while we waited for the doctor to meet with us!  I wonder what they thought hearing all that laughter??

Okay....so did you yawn??? LOL!

So until our next endo. appointment we will continue to fight this beast of a disease!  It's a constant balancing act between insulin, food (counting carbs), exercise, etc.  We will continue to fight and hope for a cure!!

Alopecia Are...whata???

Most of my blogging so far has been about Type 1 Diabetes, but there is another autoimmune disease that has decided to show it's face in our family....

In June of 2009, my oldest daughter - "Queen Alopecia", was diagnosed with Alopecia Areata.  Most people have no idea what those words mean until we inform them.  Alopecia Areata is an autoimmune disease.  My daughter's own immune system, which is supposed to fight off virus and bacteria, is mistakenly attacking her hair follicles.  The hair follicles are the structures that produce hair growth.  When these follicles are attacked, it leads to hair loss.  Hair can be lost not only on the scalp, but on other parts of the body too.  The stem cells that provide the follicles with new cells are not affected, so there is always the potential for new hair growth.  If hair regrows...it could all fall out again.  Alopecia is different for all people.  Some people have hair regrowth while other people may not...that is what makes this disease so unpredicatable.  There are three main types of Alopecia.

• Alopecia Areata: described as having patches of hair loss anywhere.  At first, Queen Alopecia was diagnosed with Alopecia Areata when we noticed two quarter size bald patches on each side of her head.  We could easily cover these spots with her own hair.  If you look at the picture above...you can't see the bald patches...we were able to hide it very well.
• Alopecia Totalis: described as total hair loss of the scalp.
• Alopecia Universalis: decribed as total hair loss of scalp and body; including the eyebrows, eyelashes, underarm, etc.  Queen Alopecia eventually developed this rarest form of Alopecia.

At first, there were only two spots on each side of Queen Alopecia's head, but slowly....these spots began to grow bigger and then there were more spots that started to develop and these spots gradually got bigger, and bigger, and bigger until they all just started to connect with one another.  The photos below will show the progress of Alopecia Universalis...

At these first  two stages of Queen Alopecia's alopecia shown in the pictures above...it mainly affected her left side and we could still cover it with wide head bands. We used 3" wide head bands and most people didn't realize that Queen Alopecia was losing her hair.

At this point...the patches started to get bigger and gradually connected with each other.  It was at this stage that I also noticed that her eyebrows and eyelashes were thining.  We tried many topical cremes to get her hair to regrow.  I even sent away for a topical cream, shampoo, and nighttime oil (called Calosol) from England that didn't produce any results.  We then started to go to a dermatologist who prescribed "Elidel".  We used that for a while and then I found a case study where Alopeicans used Elidel and not one person had hair regrowth.  We decided to stop this cream and give steriod injections a try.  We went to our appointment and the first time she got injections, she was so scared.  We used emla cream to help numb her scalp.  Thank goodness for this cream....she only felt about six-eight shots, but she must have been given 100 or more shots in her scalp.  She was such a tropper!  We were told that we should see hair regrowth within three-four weeks, but was also told that it may or may not work.....

Queen Alopecia is losing her bangs and it is now impossible to cover the balding with headbands so at this point she is wearing hats to school.  She is worried about losing all of her hair, but she fears losing friends more.  At this time she doesn't want to tell her friends about it.  She said that she wants to make friends first and then tell them all about her Alopecia.  Then she will know if they are truly her friends.  If they are, they will not care whether or not she has hair.  I'm so proud of her for going through this emotional time and having such a positive attitude.  I'm hoping that her self-confidence continues to grow.

We found this picture on her grandparents computer.  It is a drawing that Queen Alopecia created about her hair loss.  Her classmates are wondering if she has cancer and it is at this time that we decided to send a parent letter home informing parents about Queen Alopecia's alopecia and how to answer any questions that their son or daughter may ask.  I also sent the books "The Girl with No Hair" and "Princess Alopecia" to school for all the teachers to read to their students to raise awareness about Alopecia Areata and to understand what Queen Alopecia is and will be going through.

At this point, we decided to give one more round of steroid injections a try.  We wanted to make sure that we tried everything....we wanted to make sure that we didn't leave a page unturned.  That is what parents do right?  We were going to do everything possible to help our daughter.  

Queen Alopecia today...living with Alopecia Universalis...Total scalp and body hair loss.  She amazes me.  The second round of steroid injections didn't produce any hair regrowth and at this point all her eyebrows and eyelashes are gone.  We decided as a family that we did not want to continue with the injections.  She now wears a wig, but at times it can be uncomforable, but she loves being able to wear one when she wants to.  She doens't feel comfortable, at this time, to be out in public without wearing some sort of head covering (the Buffs, the hats, and her wig). 

This is Queen Alopecia wearing her new wig for the first time...she loves that it "looks real"...

I just wish I was better at styling it. 

Besides having alopecia universalis, Queen Alopecia is healthy.  We had blood work done thinking maybe something else was causing her to lose her hair, but everything came back normal.  She is healthy, but the loss of eyelashes and eyebrows and hair in the nose and ears can make her more vulnerable to dust, germs, and foreign particles entering the eyes, nose, and ears.  I'm a member of Alopecia World and its good to talk to other parents whose children have alopecia and who are going through the same kind of problems and frustrations.  I've learned more about it, learned about other treatments that may be in trail phases, and have learned about products out there that we will probably be using when Queen Alopecia gets older.  I think it's really tough for people living with alopecia especially in a culture that views hair as a sign of youth and good health.  We are happy that Queen Alopecia is not going through any physical pain, but it is the social and emotional pain that we worry about.  Will she continue to be strong in her "teen years"?  Will she continue to have self-confidence and stick up for herself? ..........I hope so.

100 Words!

I was contacted by our local JDRF (Juvenile Diabetes Research Foundation) Special Events Coordinator recently who wanted to know if my family was interested in having The Sugar Princess participate in their annual "Fund a Cure" at this year's JDRF's Beach Ball Gala!  What they want to do is to have place cards at every place setting depicting different children that live within their chapter that are affected by type 1 diabetes.  We of course were happy to help.  They wanted us to send in a picture along with 100 words that would introduce her, tell a little bit about how she lives with Type 1, and how she overcomes it!  I found this assignment very hard.  I could talk all day on Type 1 Diabetes...there is so much information!  There is so much that people do not know about this disease.  It was hard  to limit it to just 100 words....

The Sugar Princess

Diagnosed with Type 1 on 6/12/2007

Current age: 5 years old

I currently attend preschool and enjoy drawing,

 coloring, painting, creating things, and playing with my big sister.

My family and I are thankful that insulin was discovered.

My fingers are poked 8-10 times a day to monitor my blood sugar.

I get 4-6 insulin shots everyday.

Insulin is my life support. 

It is a balancing act between insulin, food, and exercise.

Sometimes we win, but sometimes it is a struggle.

I have a family who loves me.

They help me get through the tough times.

I look forward to saying......

‘I used to have Type 1 Diabetes!”

Please Remember "The Sugar Princess" during Fund a Cure

 
Dear D-Moms and Dads,
How would you put it into just 100 words???

Happy 9th Birthday My Beautiful Girl!

Today my daughter, "Queen Alopecia", turned nine years old! 

"Happy Birthday" my beautiful girl! 

I love you!