Saturday, December 10, 2011

A1C How Great a Change Can Be?

We had our 2nd visit with our new endocrinologist.  I was hopeful after we met with him the last time that we would see an improvement in her A1C.  An A1C test measures Julia's average blood sugar over the last two to three months.  The higher her result the greater risk she has for diabetes complications in the future.  At her initial visit with him in September, her A1C had gone up from 7.4 to 7.8.  So I was hoping that we would be at least back to the 7.4.  I was blown away when he ran her blood and we came up with a 6.6!

I was so pleased and so was he.  He was also very kind and said he knew that a change like that could not have come without a lot of hard work and dedication on our part.

I knew after our first appointment with him that making the change was the right thing to do but my heart still felt heavy.  Not anymore.  Now I have real concrete proof that this change was the right thing to do.

Friday, November 11, 2011

Our JDRF Walk 2011



Last Sunday was our family's first JDRF walk.  We had such a great time.  And although I am sure you have heard the song about how it never rains in Southern California, I can tell you the song is wrong.  The first hour and a half we were there it was very wet.  


It didn't dampen our spirits though.  We were all ready for a great day.  The kids danced in the rain at the Radio Disney Booth.  They were soaked and cold but happy.  Our team shirts turned out great and I was so excited for Julia to be able to wear hers.  On the back of all the shirts it said "We are walking for Julia" her shirt said "I'm Julia."  The problem was her I'm Julia shirt was too wet to wear!  So we switched her to one of our extra shirts and my sister & my friend helped rig it so she could wear it around her waist.  


By the time the walk started, the rain stopped and it was a beautiful day.  It was so great having our friends and family by our side walking for a common cause.  


Our team goal was $2500 so that we could qualify for a team tent.  
And thanks to all of our supporters, we reached our goal and more than DOUBLED it! At last check, we have raised over $5300!  
 We added the other thermometer onto our original one.  Julia loved coloring it in with every donation we received.  


Thank you to all of you.  Those who walked, donated, supported one of our fundraising events, or wished us well, thank you.   As Julia said, "It makes my tummy bubbly and my eyes watery," to have your support.  

Tuesday, November 8, 2011

Today I Remember, Tomorrow We Celebrate


Today is the day one year ago Julia was diagnosed with type 1 diabetes.  We have come such a long way but I can't help looking back on that day.
This picture was taken the day before diagnosis on my mom's cell phone.  

I have already written the story of her diagnosis but lately I keep thinking of one doctor we met.  It was in the E.R. and it was brief and I have only recently come to fully understand that meeting.  She was so grave in the way she spoke and looked so worried and was explaining some of the tests that were being run and that we would know more when the results were in.  She was worried about the how acidic her blood was and whether or not there was cerebral edema.  The next time we saw her the results were in and she looked so much more relieved.  She explained that the acidity in Julia's blood was not as high as she expected and that her treatment would be much easier.

Like I have said before, I did not understand the seriousness of the situation.  In my mind, the pediatrician told us it was diabetes and so we are at the hospital and they would show us how to get her healthy.  I assumed that there was nothing worse that could happen than the diabetes diagnosis.  We were very lucky.  I just recently read about a family who was not so lucky.  You can do so here if you choose.  

Please read the signs and symptoms of type 1 diabetes.  If you or someone you know is exhibiting symptoms please do not hesitate in getting them medical attention.

 
Warning signs of T1D (these may occur suddenly):
  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness
(taken from www.jdrf.org)


Today I remember the heartache and pain of seeing my little girl so sick.  Today she is a healthy strong 6 year old and I am so grateful for that.  Tomorrow we will celebrate...


   

Thursday, November 3, 2011

A Day in Our Blood Glucose Life

I have written before about our daily schedule but that just looks at the time frame.  Today I am putting it all out there.  I have taken a page from Julia's logbook (10/28/11) and I am going to share with you her blood glucose (BG) readings for the day.  Every time we get a reading, she gets poked with a needle.

7:03am  BG 68 Julia wakes up saying she is feeling shaky.  That is how she describes a low.

7:25am  BG 123 Recheck and before breakfast test combined.  This is a much better start to the day.

10:07am BG 50 She told her helper she felt shaky.  This is at school during class.  I get a text with this info.

10:24am BG 125 Recheck and recess time check.  I get another text with this info.

11:48am BG 83 Lunchtime check. Another text for me.

4:09pm  BG 54 Julia is feeling shaky again.  This is at home.

4:24pm  BG 111 Recheck - back in range

6:05pm  BG 251 Dinner time check

9:53pm BG 307 Evening check.  This is high.  We give more insulin and will recheck in an hour.

11:00pm BG 370 Recheck - That doesn't seem right.

11:02pm BG 372 Recheck - Change insulin pump site in case of poor insulin delivery

12:05am BG 340 Recheck to verify new site is working - not coming down as much as I would like

12:31am BG 334 Recheck still coming down just slowly maybe it is working?

2:00am  BG 383 Apparently it is NOT working.  Another site change and insulin dose given.

3:01am  BG 262 New site working.  Time for some sleep.

8:29am  BG 122 Let's see what today brings...

Julia's range is supposed to be between 70 - 130 during the day and 100 - 150 overnight.  We have days that are terrific and in range.  We also have days that are horrendous and nothing makes sense.  Just because she is pumping and testing regularly does not guarantee that she will be in range.  Everything can effect her blood sugar.  Being excited, being nervous, physical activity, lack of physical activity, anything can send her low or high.  We are told that a number is just a number not a grade but it is so hard to not look at the meter and think that it somehow reflects on your ability as a parent.  Seeing a random 300 pop up can be so frustrating  or stubborn highs that won't come down.  And the lows.  Lows are so scary.  Hearing her say she feels shaky, seeing her get so pale, I hate it.

Tuesday, October 11, 2011

Mommy Mantra


I saw this on a friend's wall on facebook last night (thanks Marte) and it really spoke to me as a D-Mom and as a mom in general.  I hope it speaks to you too.   

Sunday, October 2, 2011

Feeling Lucky

Last night we went to the 3rd annual Evening 'Round the Campfire.  It is the big fundraiser for Camp Conrad-Chinnock.  If you haven't read my posts about camp, you can read more about it here and see our pictures here.  


We had a great night.  We fancied up and headed to the Disneyland Hotel.  I was excited to see some of the people we met at camp and hopefully feel that same sense of calm that camp
brought us. 


Forever Friends


I have mentioned before how thankful I am that we have the Gasparro family in our lives.  Last night I was reminded of what a blessing they are to us.  There were video montages throughout the evening covering different aspects of the camp and what it means to everyone involved.  Several of the parents interviewed talked about how isolating diabetes can be.  And although there are times when I feel alone, I know because of this family we never truly felt as alone as we could have at diagnosis and in our day to day with diabetes.  They have been with us since day one and continue to be right by our side. 


Photo Booth Fun


And while the entire evening was not exactly filled with calm, (Joe wearing a balloon hat literally as big as him, trying to have the kids eat catered meal and be an attentive audience, etc.)  I left the evening feeling at peace.  Seeing again and hearing the stories of the camp staff brings my heart such happiness.  These young adults that happen to be type 1 who are so poised and such beautiful people really set my mind at ease for the future.  They are so inspiring.  I am so thankful that camp has come into our lives.  I know that year after year camp will continue to be a safe haven for our family and for my daughter.  She will always have a place where no one questions why she is doing what she is doing, where everyone understands how she is feeling, where she belongs.  

Tuesday, September 20, 2011

Our Walk Video 2011


I finished our very first walk video.  Julia was diagnosed last year the day after our chapter's walk.  So our walk day is approaching along with her one year anniversary.  


I would love to have a big walk team to show Julia how many people love and support her.  We would love to have you join our team. 


http://www2.jdrf.org/site/TR/Walk-CA/Chapter-LosAngeles4041?team_id=19153&pg=team&fr_id=1395


If you cannot join our team please consider supporting our team financially.  No amount is too small.  Thank you for considering it.  The donations go to JDRF. They fund more type 1 diabetes research than any other charity worldwide and are making progress along many promising paths toward better treatments and a cure.  

Saturday, September 17, 2011

We have made a change

Most of you know Julia's endocrinologist since leaving the hospital has been the same doctor we saw in the hospital and we were happy.  He was there when we called and supported us in our medical plans for Julia and he got us on the road to taking the best care of our girl.  We trusted that he and his team were helping us to help Julia be and stay as healthy as possible.


Several months ago I met another pediatric endocrinologist in our area.  He was the speaker at a JDRF event talking about how diabetes management started, where it is now and what is on the horizon.  I really liked all the things he had to say and my internal struggle began.  He was so aware about the current technologies and spoke passionately about how using these technologies offers our children the opportunities to live their best healthiest lives.


I spoke to Bubba about whether or not we should change doctors.  We both felt safe with where we were and that we were making the best choices for Julia.


I am the type of person who likes to find out information.  I have been studying Type 1 since Julia's diagnosis so I can feel confident that she is getting the best care.


When we went to our last endo appointment in June I began to lose confidence in the care Julia was receiving.  We were told what a great job we were doing and her A1C had gone down but (and that is always the problem isn't it?  The nagging but) no changes were made to her pump settings.  Now I may not know much but I did know that one basal setting with a small change in the afternoon was not right.


For those of you not familiar with pump therapy and how it works here is a very simplified explanation.  Please keep in mind I am not a doctor.   The pump delivers insulin to Julia 24 hours a day in small amounts called her basal dose.  She also gets a bolus dose whenever she eats.  That is the insulin she gets to cover the carbohydrates she is consuming.  The ratio of basal and bolus is meant to be around 40% basal 60% bolus.  Obviously everyone is different and nothing is perfect especially when it comes to diabetes but (there is that word again) Julia's ratios were at about 20% basal 80% bolus and the doctor felt nothing should be changed.  In my opinion at that point being on the pump was no different than having her on MDI (multiple daily injections) except we weren't having to give her the insulin in shot form.


We decided that her next appointment would be with the other doctor that I had met.  At the beginning of this month we saw our new doctor for the first time.   We were all a little nervous going in to something new.  The first sigh of relief came when he did her A1C.  Previously when we went to the doctor, a week before Julia's appointment, we would have to go to the lab and have a blood draw done.  Julia called it her vein shot.  I made Bubba take her.  He was the one fielding the questions and dealing with lab techs who couldn't always get it on the first try.  Our new doctor does the A1C right there in the office.  A simple finger stick using her poker that she uses everyday all day long to do her bg checks. A simple drop of blood like she does all day every day when she does her bg checks.  A big relief for everyone involved.  The result was ready in about 5 minutes.  To which Bubba remarked, "That is amazing."   The doctor responded, "What is amazing to me is this technology has been around for a long time and doctors are still making their patients go to a lab."  I felt a twinge in my heart.


He looked at her pump and her ratios and discussed the changes he wanted to make.  He explained until we felt comfortable why we were making these changes.  He talked about ratios & percentages (things I had read but didn't completely understand) and made them understandable.


The worst part was when we learned that one of her dosages was completely wrong.  When Julia's blood sugar is high we give her a correction dose to try to bring her in range.  Whenever we would do this, she would end up going low and we would have to treat the low and give her a lot of food to cover the insulin in her system for correcting the high.  Sometimes this would work out and sometimes it would rebound her back into a high.  When our new doctor reviewed her correction dose, he said she was at an adult rate.  Yes, my petite 6 year old girl was taking an adult dose. This was a much bigger twinge.  This was a knife straight in my heart. 


We made the changes and left with the understanding that we would contact him and let him know how the changes were working out.  Within the first few days we started seeing great numbers.  I would email him what was going on & he would advise us of the tweaks to make.  He even emailed me first when I didn't want to bother him over the weekend.  


I really feel great now about the change we have made.  It has taken me a little while to get here.  I was really beating myself up for not changing sooner.  I questioned how much damage had been done & how much better she could have been feeling.  I was hurt.  We trusted our doctor to know the things we didn't and to be helping us learn the best things to do for her.  I am trying to not feel guilty and just look forward to how much healthier she will be now that we have made the change.  

Friday, August 19, 2011

Packing & Stressing

We are leaving on Tuesday at an ungodly hour (3:45 a.m.) for a seven day Alaska cruise.  I am very excited and looking forward to the trip but I am nervous of the diabetes unknowns that may come our way.  I am trying my best to plan and pack.  I even got a loaner pump to take with us in case of a pump failure while we are away.  (Thank you Medtronic) :)
We have our letter from the doctor, diabetes supplies & backup supplies but I still feel like I am forgetting things.  I am worried about the airport and hoping security goes smoothly.  This will be our first plane trip as a family and with diabetes.  We have been doing a lot of traveling this summer and everything has gone well so far and I am hoping that this trip does too.
It is funny because before diabetes, I always planned and packed carefully for vacations.  Now I do that times 10!  Although now my packing priorities have changed.  Now diabetes needs are at the top of my list and for everything else,  I figure we will make it work.  


Saturday, August 6, 2011

Hooray for the Goofy Giveaway

As some of you know, we entered the giveaway at My Life as a Pancreas for the new Mickey Mouse Clubhouse Book Coco and Goofy's Goofy Day and we won!




It arrived in the mail today and Julia was very excited to receive it.  It is a great book which we have already read three times.  In the story the Mickey Mouse Clubhouse friends find out that their friend Coco the Monkey has Type 1 Diabetes.  She is invited to Goofy's birthday party.  Goofy worries about whether or not she should go to the party since she has diabetes.  He learns that she can do anything he can do and eat treats too.  In the end Goofy ends up needing to be taken care of because he ate too much junk and Coco is fine and had a great day.  Julia thought the ending was very funny and enjoyed the book very much.




This book is part of a partnership between Disney and Eli Lilly.  Disney has even added a new section on their family website all about Life with Type 1.  If you have not had a chance to check it out you can HERE. 


Thank you to Stephanie for having this giveaway and thank you to Disney and Eli Lilly for making my girl smile.



Sunday, July 24, 2011

Camp Conrad-Chinnock

It's funny while we were away at camp, I had all of these posts swirling in my head and now that I am home I am having trouble putting it all into words.

Camp Conrad-Chinnock has been in operation for more than 50 years.  It was started by Dr. Chinnock who worked at Loma Linda hospital with children with diabetes.  He wanted to take them to summer camp and was told that it is too dangerous.  He didn't listen, thank goodness.

We made our first trip to there a week ago Friday.  We arrived just before lunch and found out we would be cabin mates with our friends who have been with us every step of the way on our journey so far.  The cabins are very nice.  Each family has there own "room" with a curtain for a door.  In the middle of the cabin is a shared bathroom.  Ours was the first session with the bathrooms in the cabins.  I think we came at just the right time :)  No hiking to the bathrooms in the middle of the night for us!
Our cabin is the one a little further away in the picture.
After settling into our cabin, the weekend began.  I have written previously on my blog how much I appreciate the DOC (Diabetes Online Community) because it is a way to connect with people who "get it."  Camp was the DOC in real life.  I was surrounded by people who get it.  Parents, Camp Staff, and kids who all understand Type 1 diabetes and what it means to live with Type 1 diabetes every day.

I wish I could explain better how great this place was.  It is so much more than just a camp.  It gave us all a sense of peace and belonging.  Julia made a friend there who has diabetes too and she loved it.  I could just see the joy in her when she would run off  to play with her.

Julia & her new friend
At one point we broke into groups, kids without diabetes, kids with diabetes & parents.  We were talking about diabetes and how we felt about it.  The kids' groups made posters and would share them with the group when they returned.  Julia wrote she liked diabetes because she got to come to camp and make a new friend.  Joe said he sometimes felt like he wasn't part of the family because we are caring for Julia all the time.  And although it broke my heart to hear him say that, I am glad he felt safe enough to say it.

Most of the time when we wold have activities the kids would go off with the counselors to play camp games (Sharks & Minnows, Capture the Flag, Water Olympics, etc.) and the adults would have different sessions.  One of my favorites was one they called "Meet the Experts."  The experts were staff members who are Type 1.  They talked about what it was like growing up with Type 1, how their parents helped or hurt them in learning how to manage their own care, and where they are now with their diabetes.  It was great to be able to hear their open and honest perspective.  We had sessions with the medical staff, nutritionist and the camp director, Rocky Wilson.  One session with Rocky we met separately first moms and then later in the day the dads got their turn.  The women's circle was amazing, we shared our feelings with no judgement only acceptance.  We talked about our struggles and frustrations.  We learned about surrender and scheduling time for ourselves.  We laughed, we cried and we understood each other.

Not all the time at camp was scheduled.  We had family free time each day.  During that time, there were all kinds of activities to do.  Arts and crafts, archery, ropes course, rock wall, pool and the lodge which was Joe's favorite place to go.  It had a pool table, ping pong, foosball table a basketball game and more.




















One of the other great things on a practical level was the meals.  Not only was all the food good, the carb information was written on a white board for every meal and snack.  Everything served was included serving size and carbs.  Not having to cook or do dishes was a nice break too.

The funny thing is it is a diabetes camp and on some levels, diabetes was the last thing on our minds.  The staff all carry fanny packs with supplies for checking blood sugar and low snacks.  So even when Julia was away from me I knew she was okay.  She got to be independent and go where she wanted without me hovering over her.  (It took both of us a little while to adjust to this).  She also liked to have the staff check her blood sugar instead of me or Bubba.


There were campfires every night with silly songs and skits.  We hiked a mile and back to Jenks Lake where the kids fished and canoed.  I got to see a demonstration on Diabetes Alert Dogs which was amazing! We got screened for TrialNet.  We made dream catchers.  We ate sno cones and root beer floats.  We stayed up late.  We got really dirty.  All in all it was an amazing four days that I will treasure forever.

Camp Pictures














Thursday, July 14, 2011

CAMP!

We are leaving for Diabetes Camp in the morning.  We are heading to Camp Conrad-Chinnock.  Although we have never been to camp before, we are all very excited.  Our friends are going in this same session which will be nice and we are also excited to meet new D-Families.

Julia is very excited about Arts and Crafts.  Joe is looking forward to archery.  I am excited to be surrounded by people who get it.  We are lucky to have such an amazing support system of family and friends but it is impossible to truly understand Type 1 until you live Type 1.

I had planned on blogging more this summer and as it turns out it seems like I have been neglecting to blog.  Suffice it to say we have been having a great summer so far.  Swimming, beach days, BBQs and staying up past our bedtimes have become the norm around here and we are LOVING it.  Although I do miss our routine there is something nice about just enjoying our lazy summer schedule.

I will try to blog more and I promise next time to have pictures from camp as well as our annual Catalina trip that we will be leaving for the day after we return from camp.

Wednesday, June 22, 2011

Virtually Amazing

Today I did a 5K.  I know it is hard to believe but I did it and you can too.  If you haven't seen my posts on facebook about it, let me explain.  This was the idea of a woman named Tara.  Her nephew has Type 1 and she wanted to do something about it.  She set up a virtual 5K.  You can read more about it and sign up HERE.  


Today my family did our 5K.  With the help of my brother and http://www.usatf.org/routes/map/ we figured out our route. We met some friends and there kids at the parking lot by 1st Street in Hermosa Beach and we were off!  The kids and dads were on bikes and the moms were on foot.   We traveled down to 29th Street and back.  It was a great day for it, cloudy and cool. 


I was so proud as we were making our trek, knowing that we, no matter how small were making a difference.  Every step we took was a step closer to a cure.  Having friends by our side meant so much to me.  Some have Type 1 in their lives and some don't but they were all there.  Walking and riding for Julia & Eric and all of us who struggle with Type 1 everyday.  


After we finished the 5K, we spent the rest of the afternoon at the beach.  We had a picnic lunch. The kids played in the waves and had a great time. We saw dolphins and a sea lion.  I wanted to take pictures to document the whole thing and share it with all of you.  The camera ended up staying in my bag and I just relaxed and enjoyed the day.     

Tuesday, June 7, 2011

Busy Weekend

 We have had a great few days and I just have to share.  First of all Friday was my husband & my 11th wedding anniversary.  I am so lucky to have found such a great guy to spend my life with and although I would love to say we spent a romantic weekend away, no such luck this year.  


Friday afternoon was Julia's regular appointment with her endocrinologist.  We had a great check up.  Her A1C test (which reflect's her average blood sugars over the last 3 months) came back at a 7.4.  This is down from 7.8 at her last checkup.  So I guess we are doing things right :) The doctor told her she gets an A++ as a patient which she loved.  


After the appointment was the school carnival.  This year my D-Mom friend Cynthia & I had a booth to benefit our JDRF walk.  We sold finger lights and glow necklaces and made over $400 in just 3 hours!!! The kids had a blast and Julia won a fish.  What carnival would be complete without winning a fish?


Saturday was Julia's 6th birthday party with her friends.  She had a blast bowling at Lucky Strike.  
  

Everyone had a great time.  We had pizza and cupcakes and no low blood sugars.  She was a little high but who could blame her with all the excitement?

Sunday was the family party.  Another great day we had cupcakes and a Hello Kitty Cake that I made.  Not to toot my own horn or anything but Beep Beep.  Check it out...





Not bad huh?  I have always done a bakery cake for the kids & I must say that I am very proud of how this one turned out.  Plus she told me it was the best cake she had ever seen.  The rest of the menu was the birthday girl's choice, cedar plank grilled salmon, caeser salad, rice, cantaloupe & watermelon.  It was delicious.

She had a great time playing with her cousins and the rest of the family.  She got Just Dance for the Wii and it was so funny watching all the kids dancing to Who Let the Dogs Out.  I think I heard that song at least 10 times.  

Monday was her actual birthday and although she had a regular day it was a big day for Joe.  The cast came off!  

The smile says it all...there is good news/bad news as far as the elbow goes.  He can write & do homework again but recess and P.E. are out until school is over.  

We have a little over a week left until school is done for summer.  Someone recently said that there is so much packed into the end of the school year so that you appreciate summer more.  Right now, I am really appreciating summer.  

Friday, May 27, 2011

ADA Expo

Last weekend we went to the American Diabetes Association Expo at the Convention Center.  Most of the info there was for Type 2 but it didn't stop us from enjoying ourselves.  Julia felt special knowing that it was all for diabetes.  She was flashing her pump & pump belt all day long :)  We spent most of our time in the children's area.   Joe was bummed that with his broken elbow he couldn't do much but he loved playing Carb Counting with Lenny on a bigger screen.


Julia meeting Lenny the Lion
(He is a "pumper" too)

Both kids with Lenny
(Joe's cast is due to come off June 6th)

Ready for face painting

I forgot to take a picture of the finished face there but I got it on the way home.

Our friend Eric who also happens to be Type 1


Yes he really tried to do it right handed.  It worked out much better with his left.


Getting ready to climb the rock wall

 Look at her go!  And I am sure the tongue out helps :)





Sunday, May 15, 2011

What I've Learned

Well I've learned a few things this week and it is not exactly from other blogs.  I have learned most importantly to expect the unexpected.  


First, Blogger went down and I wasn't able to see other's posts, let alone post my posts.  After I had not posted, I learned that I am not very good at following prompts and posting on the right day.  (Although we pretty much established that with the WEGO challenge last month).  


I am a HUGE lurker.  There I admit it.  I love reading blogs and reading everyone's stories or looking at all of the pictures.  I am not always good about keeping up with my own blog or commenting on all the things I read.  I will try to be better.


The final lesson I got was on Friday, expect the unexpected.  I glanced down at my cell phone and saw three lines of info.  School District missed call, school district voice mail, and missed call from Julia's assistant.  I called Julia's assitant back first.  She was low (48) & having a juice box & Jenny said she would call me back in 15 with an update.  She also said she wasn't the other call.  I checked the voice mail and it was the school health clerk letting me know that my son fell at school, hurt his arm, and probably needed x-rays.  Oh and did I mention that all of this happened while I was in the middle of a Zumba class?  In case you are wondering, Zumba is a high energy exercise class.  So I left the gym a crazy sweaty mess and headed straight to the school to get my son while waiting for the call back on Julia's blood sugar number.  Which of course came as soon as I walked in the door of the school.  There sat my son with tears running down his cheeks while I was trying to field the call from Jenny.  Julia was fine.  So I signed Joseph out and away we went to Urgent Care.  Several hours and a set of x-rays later, still a crazy sweaty mess, we learned that my son has an occult fracture.  Which basically means they think he has a hairline fracture but because the area is so swollen they can't see it for sure and can't do anything to treat it yet.  We will see an Orthopedist on Monday.


Thank you all for a great week of reading :) Maybe next year I can complete all 7 days!






Saturday, May 14, 2011

Diabetes Bloopers

I haven't had a ton a funny moments but there have been a couple.  First was on Thanksgiving, less than a month after diagnosis, I spent a good hour dissecting my grandmother's Italian sausage stuffing recipe in order to be able to carb count it for Julia's dinner.  And when we got to the point we were going to eat she decided that she didn't want any.  The other funny moment that was not funny at the time but mildly humorous now,  I was texting Bubba Julia's blood sugar number and accidentally hit send after entering 13 instead of the entire 134.

Tuesday, May 10, 2011

A Letter about the Dark

To the Makers of the One Touch Ultra Link,

     Would it kill you to add a light somewhere?  Don't get me wrong, I love that the meter can talk directly to our pump.  But how can I check the blood sugar if I can't see the blood I am trying to check.  Checking blood sugar in the dark is no fun to begin with but not being able to see anything at all makes it much harder.

Thanks,
A tired Mom 



Dear Heidi,

     Thank you for this.  It has been amazingly helpful!

Forever in your debt,
A tired Mom (who now has light) :)


      
  

Monday, May 9, 2011

Admiring Our Differences

Now that I have found the DOC I LOVE the DOC.  I read so many blogs from other moms and it is great because I get the things they say and I understand the way they feel because I feel the same way.  


But the blogs that really reach me and teach me are the adult Type 1s.  Kim, MichaelKerri, KellyMeredith and the rest are so great to read.  Sometimes their perspectives are hard to read.  As a mom, I try my best to keep her in range because that is my job.  They give me how it really feels to be low or high which I will never know.  So I read about teeth sweaters or trying to open glucose tabs with shaky hands and I learn.  I see her numbers and I get a better perspective on how she really feels.  


I read about successful adults who are amazing advocates.  It gives me hope for my little girl's future.  I read the day to day victories and just the day to day and it makes me smile.  


I am now and have always have been a worrier.  So when diabetes entered our lives, it sent my head spinning.  I worried about her future.  When I read the posts from these adults it brings me peace.  I know I have an incredible girl.  She amazes me daily with her strength.  I read the blogs and I worry less.  I know if she grows up to be anything like these people she will be just fine.  


So thank you for sharing yourselves.  The things that may seem minor to you are the things that make my heart sing.  You have helped to heal me and have made me stronger.  You have taught me how to take better care of my girl and there is no way I could thank you enough for that.  

Sunday, May 8, 2011

Happy Mother's Day



Dear Mommy, I love you.  Thank you for staying at the hospital.  You are nice.  Love, Julia


Today is my first "D" Mother's Day.  In fact it was six months ago today that we found out Julia had Type 1.  I am trying not to focus on this too much but it is hard.  This morning I woke up to cards and presents and hugs and kisses.  Julia gave me 2 big purses and then showed me all the compartments that can be used to hold all the diabetes stuff.  


I have been grabbing tons of hugs and kisses.  That is my favorite part of Mother's Day, the extra hugs and kisses. We have a standing rule in our house that on Mother's Day I get to hug and kiss them as much as I want with no complaints. 

I want to wish a very special Happy Mother's Day to all of the moms in the DOC.  You have given me so much in the short time that I have "known " you.  I hope you all have a wonderful day filled with love and extra hugs and kisses.  

Thursday, April 28, 2011

Who Knew?

A couple of weeks ago I attended Events of the Heart.  It is put on by one of our local hospitals and it is designed to get the word out about women and heart disease and how important it is for woman to be aware of our hearts and what we need to do to keep them healthy.  It was going to be a night of education as well as "Angina Monologues" plus food and wine.  You can read more about the cause here.  I was looking forward to what I thought was going to be a great evening out with some lovely ladies.


I met up with my friend at her house and away we went.  The event was located at the local theater.  The cocktail hour was held outside in the courtyard and it was a gorgeous evening.  I even wore heels!  The chimes rang and we headed in to our seats.


The lights dimmed and the host of the evening and initial speaker took the podium.  She began speaking about women and heart disease and how important this evening was.  Then she mentioned diabetes.  My ears pricked up.  She talked about the future statistics and how the number of cases of diabetes is increasing.  Then she said it.  "Diabetes is preventable."  I froze.  I thought to myself she didn't really mean that right? And she said it again.  "Diabetes is 100% preventable."


I was in shock.  Part of me wanted to walk out but I didn't I stayed and I tried to focus the rest of the evening.  It wasn't easy.  The performances were good and the cardiac surgeon was outstanding.  She did a Top 10 List of things to know about heart disease and she did a great job (and she never said diabetes was preventable).  It was a hard stuff to listen to though because as a mom of a child with diabetes I know the risks.  I know everyday when her number is high that that is putting her at more risk for complications later in life.  And this night was statistic after statistic of risk factors and concerns.  I felt horrible by the time I got home.


My poor husband got an earful when I got home and it wasn't very calm or collected.  I was mad.  Here I had been at an event sponsored by a hospital and they were perpetuating diabetes stereotypes!  Would they like to look my 5 year old daughter in the eye and explain how she could have prevented this?  The next morning I sent an email to the hospital's Healthcare Foundation asking to speak to someone regarding the event.  I wanted to speak directly to the woman who made the incorrect comments but I had no way of reaching her.  The Executive Vice President from the Foundation returned my email and said she would love to speak to me.  When I called her back, I was calm and collected.  I explained who I was, who my daughter was and how the things said that night were so harmful to her and countless others who live everyday with Type 1 diabetes.  I said that as a medical institution they have a responsibility to make sure accurate information is being delivered.  She was very kind and receptive.  She also mentioned that she would speak to the woman that made the comments and express my concerns.


Yesterday I received a second call from the Vice President saying she spoke to the speaker who was very sorry for what she had said and that she would love to be able to speak directly to me if I was comfortable with that.  I told her I was completely comfortable with that.  I hope to hear from her soon and I will keep you updated if I do.


So I may have failed horribly at writing a blog post everyday but it turns out I am an advocate!  

Monday, April 18, 2011

Daily Schedule

So I have been kind of slacking off on the daily writing challenge but here is my entry for today's challenge which is to write down your daily schedule.


6:30 am Wake up check BG
7:30 am weigh and measure breakfast, snack & lunch & check BG
8:00 am calculate carbs eaten administer insulin with pump
8:30 am take kids to school
10:30 am find out BG from school and oversee insulin given for morning snack
12:00 pm find out BG from school
12:30 pm calculate carbs eaten and oversee insulin for lunch
1:50 pm pick up from school
3:30 pm check BG weigh and measure snack administer insulin
5:30 pm prepare dinner counting carbs for any/all ingredients
6:30 pm weigh & measure dinner & check BG
7:00 pm calculate carbs & administer insulin
10:00 pm check BG & administer insulin or treat low if needed (if low recheck every 15 mins until number is in range)
2:00 am check BG & administer insulin or treat low if needed (if low recheck every 15 mins until number is in range) 


**check BG at any time as needed for possible lows, activity or just because.


This is just my diabetes schedule.  It doesn't account for laundry, homework, grocery shopping or t-ball.  

Saturday, April 16, 2011

Two sentence story

Once upon a time there was a girl who dreamed of being a princess and a pet trainer.  And although she may not be either of those, I thank God every day for modern medicine so that she can grow up and be whatever she wants to be.

Thursday, April 14, 2011

A poem of lies

Fast food caused this
but here's the good news
Diabetes is reversible
Just lace up your shoes!

Get some exercise
And eat your food raw
Add a dash of cinnamon
No go, tell your Ma.

No more glucose checks
and she can sleep through the night
Just follow these instructions friends
and it will all be all right.

(This was written as part of the Health Activist Writer Monthly Challenge to write a poem where every line is a lie or misconception about your disease).

A piece of the sky broke off

Today's challenge is to open a book and use the first line that you read as your title and then write based on that title.  I had Where the Sidewalk Ends in front of me.

Julia is sick and I hate it.  Someone asked me today if diabetes causes a problem when she is sick.  Oh My Gosh YES!  I already check her blood sugar numbers all the time but when she is sick, I test more.  We were checking her multiple times over night last night because she coughed so much she threw up and you remember the fun that that is.

Bubba took her to the pediatrician and it turns out she has a bronchial infection.  So she is back on antibiotic and now has crazy numbers because her body is fighting the infection or she is on antibiotic or the moon is full.  Who knows.

Tuesday, April 12, 2011

Fragility


Today's challenge is to find an image that speaks to you and free write.


This image is beautiful to me but it is also so fragile and the fragility is what speaks to me right now.  I heard through the DOC about a child dying in her sleep.  She had Type 1 Diabetes.


Life is so fragile to begin with and as a parent of a child with diabetes that fragility is something we think about every day. It is called dead in bed syndrome and it scares me. Children go to bed with sugars in range and at some point in the night something goes wrong and they don't wake up. I first heard of this when I first found the DOC and I couldn't even read the postings. Now I can read them and when I do, my heart breaks. I don't know these people personally but I share their pain. The day to day dealings are hard enough without the threat of death looming overhead. I have had people ask me how long will we keep having to wake up and check Julia at night and my answer is always I'd rather wake up than have her not wake up. 
Please pray tonight for the families who have lost their children and for the rest of us who pray every night that it won't happen to our child. 

Sunday, April 10, 2011

Post Secret

Pumping so far...

    


     Things are going smoothly and we are so happy.  Last Monday we started the pump on a saline trial.  Basically this means we started on the pump but instead of insulin,  we had saline in the pump.  At first I was a little bummed to be doing the saline trial because I just wanted to get going but once it started I was glad it happened the way it did.  Having the saline gave us the chance to get familiar with using the pump before it was active with insulin.  


     The other great part about the trial was that Bubba got to wear a pump too.  The doctor's office had a spare pump for the training and since there were no other trainings until we were due back Thursday morning, we had two pumps to play with.  Julia liked seeing her blood sugar number pop up on her Dad's pump.


     We went back to the doctor Thursday morning and did our first site change and switched out the saline with insulin.  We were live with insulin on board!  They sent us home to have breakfast and come back in the afternoon for more training and to check in with the doctor.  I probably asked Julia a million times how she was feeling that day.  


     Since leaving the doctor we have not had any serious issues.  We are doing a lot of testing of her blood sugar (every 2 hours) to make sure we have all of her rates and ratios correct.  Her favorite part is deciding which pump belt she is going to wear.  So far "cupcake" is her favorite.  Today she has it in her pocket (so she can be like Eric).  



     The best part is she has not had a shot since Thursday morning (she was high before we left for the doctor). Now when she eats, I enter her blood sugar and the carbs she has eaten into the bolus wizard.  It calculates what her insulin dose and delivers it to her.  As I was giving her one of her first doses with the pump, she looked at me with a huge smile and said "That's it?"  If that doesn't make it all worth it I don't know what else would.  

     She still gets an injection when we do the site change but that is every third day which to me (and Julia too) is a vast improvement on at least three times a day.  In fact, we did a site change this morning and have had no issues so far.  I feel like I am tempting fate with such a great report but I can't help it.  We are happy pumpers for sure!