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.  

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...

   

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.

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.   

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.  

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.  

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.