God Makes All Things Beautiful In His Time

This is just another post that has been sitting in my draft folder since September.  I thought it was worth finalizing and hitting the "Publish" button, especially since her Kindergarten year is almost over! 

Genesis 1:31:  "God saw all that He had made and and it was very good!"  This was the very first Bible verse Natalie had to memorize this year at school.  I just love our kids' school so much and how God's truths are weaved into their every day learning and they are surrounded by Christian teachers who teach them of God's unconditional love and grace all day. 

At first I didn't think too deeply about the verse until I loaded this picture to my computer and enlarged it and saw the words right next to Natalie.  It brought tears to my eyes.  What a message....God saw all that he had made (Natalie) and it (she) was very good.  A simple message, but profound truth.  God created Natalie perfectly, knitting her together while she was in my womb (Psalm 139:13-16).  He knew her pancreas would stop working when she was only 4, because that is how He created her.  Really, the knowledge that He created her just as He wanted her to be and He has a plan and purpose for her life is the only thing that helps me accept that this disease is a reality for her life.  This was His plan for her life.

The above picture was taken when I read the book, "Taking Diabetes to School", to Natalie's class the second week of school.  I made quite a few changes to the wording in the book to better explain how we manage her diabetes.  I was nervous beforehand, but it went great and the kids were all very interested and listened attentively.  They shared about relatives with diabetes and asked questions about her meter.  The teacher encouraged the kids to tell her if Natalie ever said she didn't feel well or wasn't acting like herself.  Some children shared about their allergies or asthma.  At this age, it is kind of cool to have something that draws attention to yourself.  One child said they sometimes get the "smokies", which we eventually determined meant his asthma acts up when he is around smoke!  Ha! 

I need to devote an entire post to just how great the school year has gone for Natalie.  I promise, when I have more time!  The kids have been great with her daily diabetes care, especially her close buddy that is a boy.  I am quite confident that if Natalie ever does not feel well and is afraid to speak up, he will make sure a teacher knows!  He even lets his Mom & I know if she had a low during the day.  I also need to devote a post just to all the stories I could tell about these two!

Educating everyone at the beginning really does help.  I even wrote a letter to all the parents at the beginning of the year (thanks to the help of Heidi at D-Tales), explaining some type 1 diabetes basics, and letting them know I had read a book to the class that day.  For the most part there haven't been any issues with anyone misunderstanding type 1 diabetes.  And of course when the opportunity arises, I am always eager to educate!  There was one time that I was at school for lunch and one of her classmates pointed out to me that Natalie was eating a cookie.  I told him "yep, I know, I packed her lunch".  He further explained to me that it has sugar in it though.  I said, "yep, I know, she is able to eat sugar as long as she gets her insulin!"  Or the one student who told me that she has the "bad kind" of diabetes because it is the kind you have as a child and will have until you die.  I explained that Natalie's kind is not the "bad kind" because we check her blood sugar, count her carbs and give her insulin so she can eat anything she wants and do anything she wants.  I know the kids mean well, but comments like that are a little bothersome, especially since Natalie will have to deal with comments like that for the rest of her life and I won't always be there to explain for her.  I guess we will just deal with them as they come!

1 Mile Run Success

In P.E. at the kids school, they start out at the beginning of the year running short distances and eventually work up to a mile.  The classes have done so well this year and the weather has been so mild that they reached the mile earlier than in years past.  At the beginning of the year, Natalie did a lot of walking and I think talking as well.  Hmmm...I hope my old P.E. teacher doesn't read this because she would say she got that from her Mother!  They are given two opportunities to run the mile.  Natalie completed the first one mile run with her Kindergarten class a couple weeks ago.  Her finishing time was 9:56.  She ran her hardest all the way until the end.  Every time she passed and I cheered her on she would push even harder.  I was so proud of her!  She earned "Superior" for her time. 

Yesterday was their second time to run the one mile.  She told me that she wanted me to come and cheer for her.  When I asked her if she really needed me to come she said, "How can I run my best if I don't have you cheering for me?!"  Okay, that's all I needed to hear.  Her desire to have me there was especially sweet after attending her brother's run a couple weeks ago when he instructed me to "stay in the van and do not cheer".  Well, I ended up getting out of the van when I saw he lost his lead and the Mom of the boy who passed him was out there cheering!  Really, do you think I could stay in my van??  It did remind me of my days of surveillance with the FBI as I was backed into a parking space sitting under the shade of a tree.  I even snuck a picture of him.  I think deep down he appreciated that I got out of the van and was there, even though it is VERY hard for him to admit it.  I also attended his second run this week and from the get go I was out of the van.  There weren't as many parents there this time, but the Mom of the boy who he is always neck and neck with was there to encourage her son!  Let me tell you though, I snapped a picture of his class at the beginning of the run and he gave me the look of death.  He then yelled at me to stop cheering and to stop running with him.  I'd like to make it clear that I was not running with him, but just trying to get to the end to hear his time.  My Mom thought the sound of this scene would make a good Saturday Night Live skit or you tube video.  I'm sure it would.  Needless to say, as long as I have one child that wants me around, I will be there!  I hope she never tells me I have to stay in the van.

Natalie finished her second time running the mile in 9:36!  That is 19 seconds faster than her first run and only 7 seconds away from earning "Super Superior".  Now, we have been battling a LOT of unexplainable lows since Saturday night.  We have decreased lantus and insulin/carbs ratio and still lots of lows after lunch and dinner.  She was as low as 46 the other day at school.  We checked her before the run and she was 97 which is a great number any other time, but a little low to be starting a run especially when she has been dropping so much the last few days.  So she quickly ate 8 carbs of starbursts.  45 minutes later after the run?  Blood sugar of 97.  Ha, love it when numbers are funny like that.  The rest of the day she was in the 60's and it was hard to get her blood sugar to a safe level despite lots of fast acting sugar.  I asked her if she was tired of getting her fingers pricked and she said, "Yeah, but I do like eating candy!"

I was determined that diabetes would NOT interrupt her run.  I did not want her to have to stop because of a low blood sugar.  I could not let diabetes win or have the upper hand.  I was so proud of her as I watched her run and thought this was a perfect example of how diabetes was not going to slow her down.  Yes, it takes some extra strategic planning (okay a lot sometimes), but it's just what we have to do.  It reminded me of something we heard a triathlete with T1D say:  if it weren't for diabetes he would not have accomplished all that he has.  Diabetes was his motivation to prove just how much he could do.  I felt like that yesterday.  I wanted her to be able to run her best without diabetes interfering.  Except it is her, not me, and I hope I don't ever push her too hard.  Now one mile may not seem like that big of a deal, but with the concerns over this week's lows weighing heavily on my mind, it definitely made me appreciate even more just how awesome she is and what an achievement it was for her to complete this run.

Now I have to brag on Jacob and his running too.  He has always been super fast and amazes everyone when he is on the ball field.  He is like Forrest Gump.  He just keeps running.  In fact, when he first learned to walk, he quickly moved on to running.  He has been known to hit the ball, making it safely to first base.  Once he is on first though don't look away, because when you look back up you will find he is already on third base.  In one of his practices one of the coaches asked Eddie how he was so fast?  He said he had never seen a kid his age as fast as him.  He was amazed and then said he was going to keep working him on some drills just so he could watch how fast he moved!  A month or so ago Jacob broke the school record for a 3/4 mile run.  Then he finished his first mile run this year in 6:41 and the other day he finished with a time of 6:38.  Wow!

Here is Jacob in the lead on his first lap around; picture taken from my surveillance location.

Look at how both of her feet are off the ground! I wish I knew how to edit photos to get rid of the glare.

Natalie running her last lap. Just look at her little face. She was so tired, but so determined!

Our First Gala

The past couple of months I have been working with our local JDRF chapter as a member of the Gala planning committee.  The Gala consists of both a silent and live auction and the theme this year was Hope:  Past, Present and Future.  I have become more and more involved with JDRF the last few months and agreed to become a member of the Board of Directors for our local chapter.  This was my first involvement with the Gala.  After putting together Natalie's walk video, I had a vision in mind of putting together a video that included many of the local kids with T1D.  This was a huge undertaking, but I'm glad I threw my idea out there and followed through with it (despite Eddie's reservations that I was taking on too big of a project!). It was quite an emotional project.  Every time I received more pictures of kids with their diagnosis information, tears came to my eyes.  So many fighters dealing with this disease, some for many years.  I think our kids living with T1D are some of the most brave and resilient kids around.   I've included the link for the video below, so please watch and share with your family and friends to raise awareness and educate others about T1D.  I hope local families can use it in their schools to educate teachers and staff.  The video was shown through the night in the silent auction room.

The event was a huge success and over $340,000 was raised that night!  We attended the Gala as volunteers and I helped organize the kids part of the program.  Eddie was a "runner" for the live auction.  This was the first time the kids with T1D have played an active role in the Gala and I think it was a great idea so that those in attendance could see the many faces of those for whom we are working to find a cure.  Each table was named after a child with T1D and contained their picture and "bio" answering specific questions.  It's hard to express what it felt like to see Natalie's picture on a table.  Knowing money is being raised to cure a disease that your child has is just a heart breaking feeling.  The kids also participated in the Fund A Cure part of the night by holding up signs for each dollar level represented.  The levels ranged from $25,000 down to $125.  Fund A Cure is unique to all JDRF Galas and 100% of the proceeds go to research.  What other charity can say they do that?!  That's right....none!

Even though we worked as volunteers, we still enjoyed getting all dressed up for the event (or at least Natalie I enjoyed it).  It was so cute to hear Natalie talk about going to the "Gala" and the dress she was going to wear.  I did not know what a Gala was when I was only 6!  We painted her finger nails to match her dress and I made her hair bow to match her dress the night before! 

While attending one of our Gala planning meetings, Natalie became quite attached to another little girl with T1D that we met through JDRF.  Her Mom has also been a big encouragement and support to me as her daughter is now 9 and was diagnosed when she was 2.  The two hung out together playing angry birds and giggling non stop with each other.  It was so cute to hear them giggling and enjoying themselves.  Natalie later told me that her friend told her about the pod she wears and Natalie told her that she gets shots and doesn't have a pump yet.  Oh the bond these kids with T1D share.  I am so glad to have met other parents and kids that can relate to what we go through.

Natalie agreed to hold up a Fund A Cure sign with her friend at the Gala.  Actually, when the JDRF rep asked her if she would do that her response was a quite confident, "Oh, YEAH!".  For those of you who know Natalie and our struggles the last couple years, you know that is HUGE.  She had so much separation anxiety the year before she was diagnosed and the next year at preschool.  She has come a LONG way the last 2 years. 

Myself and another Mom were in charge of the 18 kids who waited somewhat patiently for 6 hours (which included rehearsal and dinner).  When their time finally came, all the kids were welcomed into the ballroom to the beginning beat of "We Will Rock You" while all the guests "rocked them" with their stomps and claps to the beat.  The children went to their respective tables and introduced themselves to the guests.  Then they proceeded to the stage for Fund A Cure.  A few of the older kids passed out blue glow necklaces to each person that raised their paddle to donate to Fund A Cure.  It was neat to see the room light up with all the blue (JDRF blue for T1D awareness).  There was such an energy and excitement in the room for both the live auction and Fund A Cure. 

Our hearts swelled with emotion and pride as Natalie stood tall and proud on the stage for all to see her.  We think she might have a career in modeling.  She struck a model stance with her hands on her hips and a no-nonsense  look on her face.  I could not keep the tears in.  So many feelings I had watching her stand up there.  We are all still on a high from such an exciting and successful night. 

Here are Natalie's answers (and mine for the last couple) that were on display and some pictures from the night.  I had the chance to read many of the kids' answers which made us laugh and cry at the same time.  They all have big hopes and dreams despite T1D.

Name of child?  Natalie  

Age diagnosed?  4 1/2

Current age?  6

Hobbies/Interests?  I love dolphins and all sea life.  I like reading about dolphins and going to the Baltimore Aquarium to see the dolphin show and the sharks and stingrays.  I like going to the beach.  I love going to Kangaroo Jacs (bounce house place) and Ocean Breeze water park.

What do you want to be when you grow up?  M&M's Race Car Driver (what I didn't include was when she said "if he dies"!)

We answered the following questions for Natalie:

Strangest place ever checked a blood sugar (or given a shot)?  We checked Natalie's blood sugar right before crossing the Chesapeake Bay Bridge Tunnel; she then ate her lunch while we drove through the first half of the tunnel; then we pulled over in the middle at the stopping point to give her an insulin shot.

What is your child's biggest accomplishment?  In the past year, Natalie has learned to read and ride her bike without training wheels.

What do you hope for in the future for your child?  Natalie says, "I hope for a cure for diabetes."  We as Natalie's parents hope that she lives a long, healthy life free of health complications.  We hope for a day where she can enjoy life fully and freely without having to stop and check her blood sugar or give herself insulin.  We hope that T1D never keeps her from fulfilling all her hopes and dreams.  We pray that she outlives us and we see a cure for T1D within our lifetime.

What one thing do you want people to know about your child?  We think Natalie is the most brave and courageous little girl.  She has adapted to this major life change with grace in her own 6 year old way.  She has a zest for life and an adorable sense of humor that makes all of her family and friends laugh.  She brings so much joy to our lives.

Natalie's Table

"For Natalie"

In the midst of finalizing my previous post, I was talking with Eddie about my blog post as I usually do before hitting the "Publish" button for all the world to read.  We were discussing the difference between "having diabetes" and describing a child as "diabetic".  Shortly thereafter he told me that he had just emailed me something that I would appreciate.  I figured it was a joke or funny video as is often the case.  Instead, it was an attachment saved as "For Natalie".  For those who know Eddie, you know he is the strong one in our relationship, and doesn't often let his emotions show. 

He wrote from his heart about a defining moment that occurred this past January.  My take on this moment still sits in my blog "draft" folder where it will remain.  Eddie did a far better job articulating exactly what this moment meant to us.  Now, it did take some prodding to get Eddie to allow me to post this so if you enjoy reading his perspective, leave a comment and let him know!  So without further ado, here is Eddie's debut post on our blog (he says first and last, but I'm hoping not):


"For Natalie:

For over a year now, I’ve watched Nicole enthusiastically post to her blog; sometimes it’s the joy of sharing something funny or a bit of good news, but mostly it’s the rawness of what’s on her heart as it relates to Natalie and her continual care.  I have sometimes wondered, "If I had a blog, what would I blog about?"  Normally that’s about as far as I take these thoughts, as I easily get distracted by something else which would not take nearly the same amount of time or effort of drafting a blog-post.  But something happened a couple weeks ago which I cannot get off my mind, so I feel it’s best to write down my thoughts – whether I share this with Nicole for her blog, it is just something I share with Natalie for later in life, or something I will just keep to myself – I wanted to capture what I am thinking.

A couple Sunday afternoons ago, we attended the 2011 JDRF Walk for a Cure Awards Banquet.  I can’t say I was overly excited about attending when there were so many other things I could be doing on a Sunday afternoon, but once we arrived it was good to see both our kids were at ease (racing to find an empty table and then arguing about where everyone was sitting at the table) and it’s always nice to see the familiar faces from JDRF, who easily relate with what our entire family has endured for more than 18 months now.  During the meal, and in anticipation of the awards being presented, one of the Emcee’s (and previous Walk Chair) was about to review some quick highlight’s of Type 1 Diabetes (now referred to as "T1D" to get people to quit thinking that Type 1 and Type 2 are similar) and recognize those sponsors/people/teams involved with the this year’s walk.  I’ve sat through enough of these types of ceremonies over time that I only need to pay close enough attention to know when I’m supposed to stand up and be recognized.  But before the Emcee started presenting awards, he asked all of the kids who have T1D to stand up to be acknowledged.  When he asked this of the children, Natalie was coloring, pestering her brother (or being pestered), or otherwise being occupied and not paying attention, or so I thought…

As soon as he said those words "All the kids who have Type 1 Diabetes, please stand up.", Natalie stood up without hesitation, reservation, or any prompting from mom or dad.  In fact she did it without even acknowledging or giving us the look which asks "Should I stand up?"  Nicole and I looked at one another in disbelief…for someone who claims she is ‘shy’, we couldn’t believe Natalie did this without our encouragement or having one of us stand up with her.  As Natalie stood tall at our table and looked at the Emcee, I had tears well-up in my eyes; not because I was sad, but because there has not been a moment where I was more proud of my daughter.  My pride does not come from the reality that she has T1D, nor do I feel she is proud to have T1D, but I am proud of the fact that she is not ashamed of having T1D.

Sometimes I have to remind myself that Natalie is NOT a Type 1 diabetic, rather she is a child who HAS T1D.   While some feel there is no difference between BEING a diabetic and HAVING T1D, just the subtle change in wording can have a huge impact.  I know Natalie doesn’t have to think of herself as a ‘diabetic’, (which as we’ve found in the last 18 months has so many negative connotations and we have heard such ignorant statements like "…quit feeding your diabetic daughter sugar…"), but she is free to live her life as someone who just has to do a little bit extra to manage her T1D.  I’m sure Natalie will have her doubts from time-to-time, but I’m proud that at such a young age, she is not afraid to stand up and admit she has T1D, but more importantly she IS not ashamed of the way God has made her.  Natalie is only 6 years old, but she gets what so many people fail to recognize --- she has T1D, but T1D will NEVER define her."

Let's Call the Whole Thing Off!

Do you remember this song? "You say tuh-mey-toh. I say tuh-mah-toh. Let's call the whole thing off!" My blog post about the crazy people who like to tell horror stories of all the diabetes complications got me thinking about other things that strangers (and sometimes friends and family) say that also annoy me. Some people describe others with words that may not seem offensive, but when you really think about it, they do have a negative connotation. I have a couple examples. One is diabetes related and the other is not. I'll start with my non-d example first.

My kids tend to take a while to warm up to new people and aren't the type that will talk to strangers. (Maybe that's because their ex-FBI Agent Mom has drilled into them "Stranger Danger" and we even have drills on what to do if an intruder broke in the house or tried to abduct them! You can't ever be too careful you know.) Anyway, I was the same way as a child and developed quite the skill of looking straight through someone when I did not want to talk to them. Now some may see that behavior as rude, but I don't always view it that way. I don't know how many times we've been at the grocery store or park or mall (or the many other places kids are abducted), and a complete stranger has said "Hi" to my child and asked them their name or how old they are and then when my child did not respond, they said all frowny, "Oh, he's so shy." Really, is it so odd that my child doesn't want to talk to a person they have never seen before who is going on about her beautiful hair or his big, brown eyes?  Seems creepy to me actually. Yet society tends to imply a negative connotation when they label a child as "shy".

It's the labeling as shy in front of my child that bothers me. I learned the negative effect of this rather quickly when Jacob was young. After he heard a stranger say he was "shy", he used that as an excuse to not talk to someone that we KNEW.   I always tell my children that when we are meeting with friends or talking to adults that we KNOW, they need to be friendly, answer their questions, and look them in the eye.   They have used the excuse that they learned from others and told me, "But I'm so shy".  They are not allowed to say that and they still must be kind to those that we KNOW.

One particular experience stands out in my mind. We were at our local park, when a child we'd never met approached my child and got right in her face, asked her name and attempted to embrace her in a big hug. The Dad just stood there and said nothing while my child tried to keep her balance and not fall over while the other kid kept trying to hug her! He looked at my child like she was the rude one.   I had to intervene and explain that she does not like to hug people that she does not know.  The child moved on to some other poor child.  How come no one ever describes those kids as being "obnoxiously friendly"?   No, they just always say that my child is "shy".   I'd like to say, "Your child is cRaZy!"

My Mom came up with what I think is a great response. When someone says, "Oh, she is so shy."  I should respond with, "No, she just doesn't like you."  Now, that really made me laugh and I'm kind of dying for the chance to say it!

My kids are like me. Once you get to know us, we are quite chatty and will talk your ear off!

The online dictionary even gives a negative definition for "shy", and a more positive one for "outgoing":

Definition of shy: bashful, timid, easily frightened

Definition of outgoing: friendly, sociable, interested in and responsive to others

Now for my diabetes example.  I remember hearing or reading early after diagnosis that we should always say our child "has diabetes" rather than describing her as "diabetic".  At first I really didn't understand the difference and I've definitely said "diabetic" a few times. I've heard my friend call herself diabetic and other parents describe their child as diabetic too. I know nothing negative was meant when they used the word diabetic. Then my Mom attended an ADA conference. As she stood in line, the lady in front of her said to the ADA worker, "I'm diabetic." The ADA worker, who grew up with her sister who has T1D said, "Never call yourself a diabetic. You have diabetes, but your identity is not defined by being a diabetic." Hmmm....that makes sense.

Natalie's identity is not in having diabetes. She is much more than diabetes. She is a daughter, a sister, a child of God. She just happens to have diabetes too. Diabetes does not make her the person God intended her to be. Yes, it has changed her, and it is a life altering illness, but it does NOT define her. So I decided to make a conscious effort not to say "she's diabetic", but rather, "she has diabetes."

Again, even the online dictionary in a sub-note states:  "Rather than talking about a diabetic or diabetics, it is better to talk about a person with diabetes or people with diabetes."

Now I'd love to call the "whole thing off" with diabetes like the songs says, but until that cure comes, I would like to be politically correct with my diabetes verbiage and teach Natalie early on not to introduce herself as "diabetic" and instill in her that she is SO much more than diabetes.

If you think about it, why is it so common and accepted to describe a person with diabetes as diabetic?

We don't say that a person with cancer is "canceretic". We say they have cancer.

We don't say that a person with muscular sclerosis is "muscular sclerotic". We say they have muscular sclerosis.

Or my personal favorite, we don't say that someone with lupus is "lupotic". We say they have lupus.

Our words can effect how a person feels about themself their entire life.

3 Days & 14 Bun Shots Later

It's been 3 days since we had our Endo appointment and made some changes to our shot routine.  As I wrote on Wednesday, the first night of trying "bun shots" did not go so well.  I think for Natalie getting a shot in this area makes her feel like she has lost even more control.  She can't see where the needle is going, and well, it's a bit of an invasive area!  I woke up on Thursday morning feeling like I did when she was first diagnosed.  I was dreading shot time and nervous about her reaction. 

I'm happy to report that the 2nd time it only took 4 minutes and that night only 1 minute and no crying!  Every time since then has only been a minute.  She definitely likes placing the cold quarter on the area beforehand.  She quickly takes the quarter when the shot is over and puts it in her piggy bank. They have been learning all about money in school, so that's made it fun for her too.   She has also managed to get a new car each day which was not the original plan. Whatever it takes!  She does complain of pain in that area even 10 minutes later.  Not sure if that is from the lantus which tends to burn or just a sensitive area?  She never complained that much later with the leg shots.  As I type this the thought just occurred to me that maybe it does hurt more in the new area since scar tissue hasn't built up.  Scar tissue can cause the nerve endings to die and not feel the shot as much right??!  No wonder she liked it in the same spot every time.  Her blood sugars have been better at bedtime since not getting the shot in her legs.   

We are planning on trying to give a shot in her legs again (avoiding the bump area), but also keep the bun shot in the rotation.  I'm happy to have some more real estate to work with!  I pulled out the "Understanding Diabetes" book (Pink Panther handbook) we were given at diagnosis to look at the diagram of how far down we can do the shots in the bottom.  She gets really nervous that we are going to do the shot in her back since she can't see what we are doing.  Here is what the diagram showed.  Now, this was somewhat helpful, but panther buns are not the same as human buns!

This week has felt like a bit of a roller coaster ride, which seems to be typical of life with diabetes.  There are literally highs and lows every day.  Another Mom posted this week about diabetes being like a roller coaster as well.  Now, I am NOT a fan of roller coasters.  They even seem to have the same effect on my stomach as when we were dealt the blow of a T1D diagnosis.  At diagnosis our lives were turned upside down, and we felt like this:

Then we felt the lows this week as we faced the scariness of trying something new and the reality of the effects of scar tissue already effecting her little body, and the defeat of a higher A1C.  I felt like we were quickly crashing down like this:

Now we are back on the upswing as we again see how brave Natalie is as she was able to adjust to something new and scary and work through it.  Other T1D Moms have said the same thing and I must agree that I think our T1D kids are the most brave, strong and resilient children.  They adapt despite the physical pain and adjustments that diabetes requires them to make.  After the third shot which went quicker and without tears, I pointed out to Natalie how the first night was so scary with so many tears, but now it may still be scary and not comfortable but she didn't cry and we got the shot done super quick and THAT is what being brave is all about.  She got the biggest smile on her face and you could just see how good that made her feel to have accomplished such a big thing for her.

I'm also happy to report another new accomplishment for Natalie!  The last few weeks Natalie has had a few lows right after school.  A few times the minute she got in the car after school, she told me she felt low.  One day we saw a pretty low low.  Thankfully we don't see numbers this low too often, because it is scary.  When we do see lows this low, it makes me shake and my heart race as if I'm the one having a low blood sugar.

I have stressed the importance of her telling her teachers when she feels low and that she should not wait until she gets to the car to tell me. Every time she insists that she didn't feel shaky until she got in the car. Hmmm...how convenient. Then last week when I subbed in her class, she came to the back of the room and told me she felt low. We asked her if she would have told her teachers had I not been there. She just grinned. Her teachers and even the Dr. told her how important it is for her to speak up when she feels low. 

So...this week I received a text from her wonderful aide who takes such good care of her saying that Natalie told her she was low and she was 64!  I am so proud of her for speaking up and telling someone other than myself!   Her aide was excited too!  This is a HUGE step for her. I wavered between wanting to cry because I felt so proud of her to wanting to jump in the car, drive to school, and wait outside for school to be dismissed. It was the first time she has been low and not in my care or close by where I could see her and just see that she was okay.

I'm happy to have survived the last few day's roller coaster ride.  Another bump is inevitable, but I know we have to just keep on keeping on and hanging on for dear life!

Fun While It Lasted

Natalie had her quarterly Endo checkup today.  Three months ago she had her best A1C (3 month blood sugar average) ever with a wonderful 6.8%.  Everyone told me it would be hard to maintain such a great A1C, but I had high hopes.  It still felt like a kick in the gut today when she told me her A1C went up almost a whole percentage point to 7.7%.  Her Dr. is happy with anything under 8% for her age, but I really would like to see it around 7% which would be an average blood sugar of 150.  Her current A1C means her blood sugars have averaged 174 for the last 3 months.  A person without diabetes has an A1C between 4-6% (average blood sugars of about 70-120).  

I couldn't help but start crying right there in the exam room when she told us the A1C.  It's just so frustrating when you work so hard counting carbs every single day, weighing and measuring all her food, logging every carb and shot, waking up in the middle of the night to check her blood sugar and we still end up fighting high blood sugars.  We did have the holidays thrown in during this time period as well as a cold which caused some high blood sugars.  The Dr. said it is normal to see an increased A1C after the holidays.  She grew an inch and gained a pound as well.  She is still in the 90% for height!

The Dr. also checked her arms and legs and fingers and I pointed out the rather large knot on her thigh from the repeated shots in that area.  She had it once before (scar tissue build up), but it cleared up after avoiding that area.  You could see the bump on her leg even when she was sitting on the exam table.  This time it is sore when she touches it.  We have been trying to avoid that area, but it's hard when you have a squirmy 6 year old that insists on the shots being in specific areas. 

The Dr. told Natalie those specific areas on both legs are no-nos for shots for awhile.  She also told her we need to try shots in the top part of her bottom where she has a little more meat on her.  We have done it twice before and she really hated it, but we will try again.  I am glad the Dr. told Natalie so we can now say it's Dr.'s orders rather than us being the bad guys.  She suggested we wash a quarter, put it in the freezer and then have her hold it on her skin before the shot to "numb" it.  I think this is more of a mental thing, so we'll see if this works because Natalie is smart and not likely to fall for this if it really doesn't numb the area.  She did like the idea of earning some quarters.  The Dr. said we could also use a cold spoon instead of a quarter.  We told her if we do this for 3 days in a row, she can have a little prize.  The Dr. also felt some lumpiness on her arms, but I haven't really noticed it.  We only do arms at lunch so the arms have more of a break than the legs, but they are such skinny, little twigs.  We've been having some high blood sugars at bedtime (300's), so the Dr. was concerned that those areas on her legs are not absorbing the insulin where scar tissue is building up.  That really scares me to think that we are running out of space and the insulin might not be being absorbed.  It was so hard to see her sitting there so sweet and innocent and see the marks and scars on her body from all the shots and finger pricks.

This afternoon when I had some time to myself, I decided to use a groupon for a local frozen yogurt place that we haven't tried and bring it home for Eddie and I to have tonight.  Fro-yo is a sure way to cheer up right?  Well I asked for a nutrition guide so I'd have one if I ever bring Natalie.  She said she was all out of nutrition guides and needed to order some more, but they had a no sugar added yogurt.  I was not even buying the no sugar added flavor.  I had not yet said anything about carbs or diabetes because I've learned once I say diabetes people love to share their opinion and horror stories.  But when she kept insisting that the no sugar added kind has only 6 grams of sugar, I told her I needed the total carb info for my daughter with diabetes.  She then thought it would be helpful to tell me about someone that came in the store and had diabetes for over 20 years.  This person had managed her diabetes well for 20 years and then didn't take care of herself.  She had a stint in her arm because she is now on dialysis because her "kidneys went bad".  She also told me about another friend's grandma who eats awful and always has very high blood sugars.  She then said, "Did you know you can lose your legs, feet, toes and eyesight from diabetes?"  She said she told her friend to tell her grandma to start taking care of herself or she will have to go on dialysis and could lose her legs and eyesight too!  Yep, I made my exit then and not sure I care to go back! 

I really need to come up with something quick and witty to say to people when they start in with their horror stories.  It wasn't the first time it has happened, and I'm just usually so in shock that they are saying this to a Mother of a little girl with diabetes that it's hard to come up with something to say!  My friend who has lived with T1D for over 30 years said she usually puts her fingers in her ears and says, "I don't want to hear your horror stories!"  I'm thinking that might be a good option.

Update:  After 15-20 minutes of Natalie crying and begging us tonight to do her dinner shots in her leg we finally were able to do both her humalog and lantus shots in her bottom.  She was absolutely pitiful and kept saying, "I can't do it".  She even promised to pick a different area of her leg.  It was heartbreaking.  Both Eddie and I tried and then she eventually ordered Eddie out of the room and let me do it myself. 

Oh, and she got 2 quarters and a new car tonight rather than in 3 days.  :-)   In the midst of a sobbing fit like that, I will throw out any incentive to get the job done.  I'm hoping after getting this first one over with, the next will not be so hard.  I feel like I'm crushing her spirit when I have to insist and force something new on her.  We've been able to give her the choice of where on her legs to get the shot, but her legs really do need a break.  I also think we need to try new areas, specifically this area, before we move to a pump.

My sweet, pretty girl.