Tuesday, July 2, 2013

1st Grade Follow Up

Wow, it's been a long time since I've blogged which usually means things are going fairly smoothly on the diabetes front.  While we still struggle with highs and lows daily and they still tick me off, I guess I don't feel as much need to blog about them.....maybe after 3 years it's just become our "new normal".  The highs and lows are a normal part of living with t1d and sometimes I feel people who don't live this life are tired of hearing about it.  I do want to post an update on what a great year Natalie had this year during 1st grade.  I previously posted about the plan for 1st grade in the blog post 1st Grade It Takes A Village.

We truly feel so blessed with the team of individuals that cared for Natalie every day this year.  I know this is not the case in all private schools and am especially grateful after hearing that a small Christian school in my hometown of St. Louis denied a child with t1d to attend their school (SHAME ON THEM!).  Natalie loves the school she attends with Jacob and we are so thankful she can reap the same benefits that Jacob does from attending there.   

When Natalie started 1st grade, she had only been wearing the Omnipod insulin pump for 3 weeks, so I was terrified of how everything would work out.  Since the omnipod is tubeless and wireless, it can alarm and deactivate when it detects that something is not working properly.  I feared pods alarming at all times and having to rush to the school to put on a new one. I  am happy to say that we only had 2 pods that alarmed and both happened while she was playing on the playground.  I think they alarmed due to static.  It's just one of those things with the pod.  So.. ..for a while I sprayed her with anti static spray when she got out of the car!  Now I just keep a sheet of bounce in the box of pods, and so far, we haven't had too many issues.  We did have another one alarm right as we were walking out the door for her first soccer game, but I changed that pod in record time and we still arrived early and her blood sugars even cooperated for the entire game.

I volunteered in Natalie's class every Friday morning and once after the kids went out to play, two girls came in and told me that Natalie's pod was hurting her and she could not walk.  Yep, I was panicking on the inside.  I went out to find her sitting under the playground, crying and holding her leg and refusing to walk.  I had to pull her out and carry her inside to check her pod.  There was some blood around the cannula, which is not out of the ordinary, but I feared an infection since she was in so much pain.  Her blood sugars were great so it was working, but I ended up taking her home to remove it and put a new one on.  As I carried her to the van, all the kids were so concerned and asking me if she was okay and saying goodbye to Natalie.  She waved to everyone and yelled, "I'll be back!  I'll be back!"  It was SO cute!!  I am sure it is a major pain for a 7 year old to deal with pods alarming at school and checking her blood sugar in front of 20 other students, but she handles it all so well.  I am not so sure I would have liked all the extra attention at her age.  She has no problem telling kids to mind their own business if she doesn't want them watching.  She doesn't seem to mind a couple particular boys watching her check her blood sugar, but if a particular girl tries to watch she just puts her folder up on her desk and blocks her from watching. She has to deal with this the rest of her life, so I say do what you gotta do Natalie!  The first time her pod alarmed at school she said she heard something but didn't realize it was her pod right away....she said she just thought a fire truck was following her around the playground!  I got a good laugh out of that one!

Despite those couple of issues with the pod, we would never give up her insulin pod!  It truly was life changing for Natalie this year.  It made her feel as "normal" as possible and she could enjoy snacks, parties and special events without a shot this year.  No more peanuts and cheese for her at morning snack time!

It seems like so long ago, but Natalie's teacher was on maternity leave back in October for about a month.  Well wouldn't you know it that her substitute teacher had an understanding of t1d as well.  She happened to have chronic low blood sugar issues and had to check her own blood sugar through out the day.  So she had a basic understanding of the appropriate blood sugar ranges and quickly learned what kind of snack Natalie needed before recess to keep her from dropping too low.  She also helped her become more independent and encouraged her to check her own blood sugar in the classroom. 

Mrs. Gray still handled bolusing (administering insulin through her pod) for both her morning snack and lunch.  Natalie enjoyed picking a buddy every day to walk with her to Mrs. Gray's class at snack time.  Natalie enjoyed the attention and that everyone always put their hand up to be her buddy.  She once said she was trying to give everyone a chance, but I think she picked a particular boy more often than everyone else!  I learned that at one point, Natalie had a pretty good routine going for herself.  When she felt low in the afternoons and checked her own blood sugar, one boy told the teacher what her blood sugar was and another boy went and got her snack box!  Eddie was less than thrilled to learn of this! 

When there were special treats, Mrs. Gray came over to estimate the carbs and bolus, but Mrs. Murphy quickly learned to look up carb counts on her phone and bolus for treats.  We experienced a new level of independence this year not just for Natalie but for me as well.  Last year, if Mrs. Gray was not at school, I had to sub for her because no one else could check her sugar or give her a shot.  This year since we added Mrs. Murphy to the team she was fine to fill in for Mrs. Gray.  Mrs. Gray and Mrs. Murphy are such a gift to me and give me just a little break during the day and more importantly peace of mind that she is in great hands while at school.  Mrs. Gray wrote Natalie the sweetest note and said "It makes me happy but also sad that you didn't need me as much this year and probably even less next year!  But, those are the plans that God has for you and He knows best!"  I told her to not think she is being relieved of her duties so quickly...I expect her to care for Natalie all through 5th grade! 

One of the blessings of being the mom of a child with t1d is I don't miss out on too much that is going on in her class.  I attended every field trip and class party.  I truly enjoy being part of all these special moments and not missing a thing.  Well, I would be okay with missing the bus ride to and from the field trips!  Time is going by so fast and I know these days won't last forever, so I treasure all this extra time I get to spend with her.

Natalie received the character trait award of Responsibility this year which I think is quite fitting for how far she has come this year. She has become so much more confident this year.  While she still made me walk her in every day this year, there were days she let me leave before she went in the class and did not panic.  She has come along way from where she was when she was diagnosed and even last year in Kindergarten.  I am so proud of her! 

I also have to mention how well Jacob did his first year of middle school.  It was a huge adjustment being in a different building, with multiple classes and teachers, but he did wonderfully.  He even played on the JJV baseball team and was one of only two 6th graders called up to play in the final JV games and he played the entire games!  He did well academically too and received an award for making the Honor Roll all four quarters.  He also received a special award for "Consistent Testimony" for having a genuine interest in the Lord and being consistent in his walk.  I am so proud of him too!

Oh, and how can I forget....while at our JDRF Walk to Cure back in October, one of our friends noticed that one of the 2nd grade teacher's was also at the walk.  I recognized her, but had never met her.  Well, it turns out she attends the walk every year because her daughter's best friend has t1d and she often spends the night at her house and she told me she knows how to work her pump, count carbs and bolus!  Now you know when someone uses the word "bolus" that they really do understand t1d!  My eyes filled up with tears right then.  Only a month or so into the school year and God already made it know to me that he had provisions worked out for Natalie for the NEXT school year! I'd like to know who He has lined up for 3rd, 4th and 5th, but I am trying to be patient! 

Natalie with Mrs. Gray.  Look how much Natalie grew this year!  (On the left was at Christmas and on the right was the last day of school.)

Loving squeezes from Mrs. Gray!

Natalie and Mrs. Murphy.

Beginning of the year on the left and last day of 6th grade on the right.  He has grown too (hair included...he is such a middle schooler)!

1st day of 6th and 1st grade on left and last day on the right.
Pitching in one of his JJV games.

Tuesday, January 8, 2013

Holland Where You Least Expect It

This was originally written in September, just now posting it.  Click here to read the Welcome to Holland poem I refer to in this post.

Imagine my surprise when we came upon THIS sign on our way to a baseball game this afternoon!  Actually, not just one sign, but sign after sign lined the street in this interesting little town about 45 miles from our home.  Jacob is on a travel baseball team and this afternoon he played a double header about an hour away.  I didn't really think anything when I looked up the directions and saw he would be playing at Holland Athletic Association.  Actually, I thought we were going to Suffolk, VA.  As I was trying to find the field out in the middle of nowhere and not get lost, Natalie said, "Hey, that sign says Welcome to Holland!"  WHAT?!  I laughed and said it sure does.  Wow, I didn't expect to see that today!  Then I said "okay, let's pay attention so we don't pass the baseball field."  She said, "Well we just passed one back there, but Jacob's team wasn't playing."  I turned around because it sure didn't look like we were going to come upon another baseball field anytime soon.  She is my little GPS system.

Who knew that we lived so close to Holland?!  As I thought about it, I realized there were a lot of similarities between the Holland in Virginia that we landed in that day and the Holland in the poem that we had no desire to go to.  Sometimes Holland can be very lonely and feel like you were dropped off in the middle of nowhere.  Often, you may feel that no one understands your life with T1D and you are all on your own just trying to catch your breath.  Then sometimes Holland is closer than you ever thought and you are surprised when you meet someone else in Holland that you never knew was there as well.  It may not even be someone that lives the T1D life.  It might be a family with a child with a different special need, but they get that your life is full of extra challenges.  They get the heartbreak you feel that your child has extra obstacles to overcome.

This baseball team is a fairly new team for Jacob, so I don't feel like I know many of the other parents very well.  They weren't part of our lives when Natalie was diagnosed so they don't know much of what we go through.  In fact, Natalie's diagnosis occurred right smack dab in the middle of an All Star tournament for Jacob when he played on another team.  At the time, he played for a league that he had played for since age 4.  We knew those people well and they supported, encouraged and stood by us through it all.  At the beginning of her diagnosis, I always felt the need to explain everything we do to care for her, but now I am content to just say "yes, we are fine" when they see me checking her blood sugar and are concerned.  I'm happy to answer any questions; I just don't feel the need to anymore. 

That day as we were leaving Holland after I had to dash across the street, avoiding heavy farm machinery, to get this picture, Natalie said, "Oh, that says Alaska!".  Huh?!  Oh right, she was watching the movie "Snow Buddies".  Thank goodness, let's just stick with Holland for now.

Follow up added January 8, 2013:
Last week as part of a JDRF project, I had the opportunity to assist in interviewing other families about their life with T1D as well as be interviewed.  Wow, what an emotional day that was.  As I shared our story and heard others' stories, I wasn't the only one moved to tears.  In fact, everyones' stories were very emotional for many members of the family; not just parents, but also siblings and Grandparents.
As I heard those living with T1D for longer than Natalie explain their emotions as well as how they feel physically I was overcome with emotion.  A young woman that was diagnosed at the age of 4, the same as Natalie, said she doesn't remember a life without diabetes.  That is exactly what they told us will happen with Natalie.  To hear her actually say those words and see years down the road, just broke my heart though.  A man that was diagnosed in his 40's became emotional as he compared his life before T1D and after T1D.  He explained the awful feeling his body went through as he came down from a very high blood sugar at diagnosis.  These adults were able to communicate what the younger ones are unable to put into words.  Siblings expressed their fears of future kidney damage and the possibility of transplants.  A fear I try to keep tucked away, and do not dare say out loud.  Hearing their stories validated my emotions and fears.  It validated that this diagnosis is difficult, this life is hard; there is no break ever and every day is different, throwing us different challenges each day.  That's what being in Holland is like.  I have met so many families through JDRF who are now friends and I am so thankful to have them in our lives.  While I wish for a cure for T1D; frankly, T1D has broadened our horizons, and made our hearts more sensitive to others living with struggles.  This reminds me of one of the first JDRF events I attended.  I met many other families and while we really knew nothing about each other personally we shared the bond of having a child or loved one with T1D.  When I left, it made me think of the theme song to Cheers:
Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?
Sometimes you want to go
Where everybody knows your name,
and they're always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,
people are all the same,
You wanna go where everybody knows
your name.
by Gary Portnoy and Judy Hart Angelo

Sunday, December 30, 2012

You Know You're a T1D Momma When.....

There are many things unique to being a T1D Mom and sometimes you just have to laugh to keep from losing your mind!  Many of these have been stated by other T1D Moms, but I've yet to share on my blog so here are some oldies, but goodies, and some that have been unique to us.

1.  You ask your 6 year old, "Are you high?" and realize how odd that sounds when you notice strangers looking at you with baffled looks on their faces. Then when your child isn't sure if she is high, you ask "Well, do you feel high?" or "I'm sorry you are so high and don't feel well."

2.  Sometimes when your child is acting a bit ornery, in your mind you think, "You better be high". 

3.  You ask your child if they feel low in public and get the same baffled looks.

4.  In hopes of adding a new location for a shot to the rotation, you wash quarters and put them in the freezer to apply to your child's bottom to help numb the area before a shot.

5.  A few months later you find clean quarters in a ziploc bag in the refrigerator deli drawer.

6.  When you've gone all day without eating, you prick your own finger with the extra meter just to see how low you are.

7.  Then you have your husband prick his finger just to see if your blood sugar is lower than his.  Then you get mad at him because his is lower and he just ate a handful of candy.

8.  When you do ask your husband to check his blood sugar you ask him if he wants to share your needle.  Now THAT is something I never thought I'd every say!

9.  You prick your own finger after eating too many cookies, just to see how high your blood sugar actually goes.  Then you feel bad because you realize your high is your daughter's target blood sugar range.

10.  You say to your daughter, "Give me a finger" so you can check her blood sugar.  When she holds her middle finger up right in front of your face, you laugh inside, but when you are in public you realize that must look awfully disrespectful to others!

11.  When you see other kids drink huge juice boxes full of sugar or eat cotton candy you have to bite your tongue to not tell the Mother just how many carbs is in that and how much their pancreas is having to overwork to put out all that insulin.

12.  You can't look at food anymore without thinking about how many carbs are in it.  You see a pack of smarties and think 6 carbs; a slice of pizza equals 35 carbs; a small juice box equals 15 carbs, and on and on.

13.  Food preparation consists of guessing games with yourself by guessing how many carbs are in the fruit before checking the scale for the carb count.  You silently cheer when you are right.

14.  You practice at home figuring out how many carbs is in one piece of pizza so you don't have to take your scale or damn measuring cup to a birthday party or restaurant....same with ice cream, cake, fruit, everything!  You are constantly trying to better your carb counting skills. 

15.  Carb counting and insulin dosing is turned into a family game and perfecting your children's math skills.  When your non-D child eats a large amount of carbs that you would never let your child with diabetes eat, you just can't help but calculate how much insulin would be needed.  The whole family likes to join in on guessing carbs in the food and then figuring out how much insulin needs to be dosed.  Jacob especially likes to do this.

16.  You never, ever leave home without sugar.  You even carry sugar and your child's meter in your purse when she isn't with you. You never know when you might get a call and have to go pick her up.

17.  You really can't relate when new Moms complain about their lack of sleep, because you know they will eventually sleep through the night in the near future.  We wonder if we will EVER sleep through the night again.  Even when she isn't living under our roof, I imagine we will always worry if she will make it through the night or get a call that something happened.

18.  Your 4 year old asks how many carbs is in a food item and you are proud of her for showing such responsibility, but realize by the looks of others that they think you are perpetuating an eating disorder in your child.

19.  On the rare occasion that you get to take a nap, you wake up in a panic every 15 minutes and call out your child's name to make sure they have not passed out from a low blood sugar.

20.  You have a calculator in the kitchen and every other room in the house and every bag and purse.

21.  When your child stumbles or trips as is common for young kids, your stomach immediately drops, because you fear she is low and this is going to be the low when you need to break out the red box and administer glucagon.  You are so, so thankful when you realize she is just fine.

22.  Once your child wears an insulin pump, any beeping sound causes you to panic and check if it is the insulin pump.  You are so relieved when it is just a video game or other random noise from the TV. 

23.  When you are in a noisy bounce house where you fear your daughter's pod will deactivate because of static, you constantly put your ear up to her bottom or leg to determine if it is alarming.

24.  You spray your child down with static guard in the middle of the driveway to prevent a pod error on the playground or at a bounce house.

25.  You get excited when you find a headlamp on sale (think coal miner's lamp) because it will make middle of the night blood sugar checks much easier.

26.  You now carry a butter knife in your D-bag so you can pop off the back of the pod and remove the batteries in case it alarms.  Otherwise, you are going to have to run it over with the van and imagine the looks you will get for that! 

Thursday, December 27, 2012

ENDO Checkup #10

Oh my goodness, I have been so delinquent in my blogging!  This post is long overdue since Natalie's checkup was in November, so I wanted to post it before the year was over.  This was Natalie's first checkup that included her wearing her Omnipod insulin pump for the full three months.  I didn't really know what to expect since she had quite a few highs with the start of the pod and getting her basals and ratios all worked out.  I am happy to report that her A1C did not change too much from her prior checkup and was 7.4%.  (A1C of 7.2% in August after being on the pod for 2 weeks.)  Her Dr. is happy with an A1C of 8% or less for a child her age.  When I say that her A1C is where it is supposed to be for her though, it does not mean that is the norm for someone WITHOUT T1D.  A person without T1D generally should have an A1C between 4-6%.  The reason a child with T1D should have an A1C higher than that is because of the risk of too many low blood sugars.  An A1C of 7.4% means her average blood sugars for the last 3 months was around 166.  An A1C of 6% would mean an average blood sugar of 126. 

The average on her PDM (wireless device that programs how much insulin her pod is to deliver) showed an average blood sugar of 173 for the last 3 months, so pretty close.  I love the detailed averages that the PDM tracks.  It also showed that her high bg for the last 3 months was "High" meaning too high to calculate and a low of 42 (scary low!).  It showed that her little fingers had been pricked over 1,070 times in the last 90 days.

As usual, she grew a lot which can attribute to some of the high blood sugars we might have seen in the middle of the night.  (Growth hormones peak in the night.)  He checked her thyroid for signs of any problems (which she giggles uncontrollably because it tickles) and her legs and arms for signs of lipohypertrophy (build up of tissue from repetitive insulin shots which can cause the insulin to not be absorbed in that area).  She still has a bit of a bump on her thighs, but the insulin still absorbs great there.  He said her bottom and thighs are the only area for her to wear the pod for now, because her arms are too skinny to hold the weight of the pod and her tummy has nothing to pinch.  That was disappointing to hear because she did get shots in her arms and she has wanted to try a pod there.  I hate to miss the opportunity to try a new spot when she is so willing. 

I also asked him about some of her lab results from May.  Her Total Cholesterol seemed a little high to me at 178, but he said it was okay since it was not a fasting test.  Her HDL was great and her Triglycerides were okay.  T1D affects EVERYTHING and the possibility of any complication scares me. 

When her Dr. greeted us he said "I was excited to see you on my schedule for the day because I know you are more up to date on the latest technological advances than my average patient."  He had recently attended a technology conference where they reported that the human clinical trials for the closed loop insulin pump (artificial pancreas) will be available for children shortly.  He was very optimistic about the trials and the possibility that the closed loop insulin pump will be on the market in the next couple of years.  That was a boost to my confidence that he recognized and appreciated that I keep up to date with the latest research and advances.

Speaking of the artificial pancreas, I had the opportunity to meet someone who is participating in the clinical trial at the University of Virginia (UVA).  I was able to hold and push the buttons on the "artificial pancreas" which is actually a cell phone that is used to input the carbs and also tracks the blood sugars and alerts when the blood sugar gets too low or too high and is able to adjust and correct on its own.  He was wearing an omnipod, but would have to use another insulin pump for the trial.  Currently the omnipod does not have blue tooth capabilities so would not be an option with the artificial pancreas.  It also requires that the person have 2 sites on their body (one for the continuous glucose monitor and the other for the insulin pump).  It is exciting that it would be able to stop administering insulin if dropping too low, but something I would probably look more into when Natalie is older.  The local news station did a report on the trial and next thing I knew they were hooking me up to a microphone and asking my opinion!  Here is the link if you missed it when I posted it on facebook.  I was still getting over not having a voice for 2 weeks, so I sound a little raspy.  It is very exciting to live so close to where all the action is taking place!  I learned that UVA directs the trials for ALL the Artificial Pancreas trials all over the world, not just the U.S!   

Trials Underway for Artificial Pancreas

I have lots of unfinished blog posts in my draft folder that I am determined to get out in the next month so stay tuned!

Sunday, November 11, 2012

The Details

The last couple months I've been busy with emails to fund raise for our JDRF Walk team.  Now that our Walk is over it is time to get back to blogging!  School is still going really well for Natalie and she is doing well academically, socially, and with her diabetes care.  Both 1st grade classes have had to adjust to changes early in the year with their teachers taking maternity leave.  Natalie's teacher returns from 5 weeks of maternity leave tomorrow.  The first few weeks of school with her teacher went so well, and I was afraid of how all the details with her diabetes care would work with a substitute teacher.  I worried if she would speak up if she felt low and how it would be handled in the class.  As has been the case for the last 2 years, God continues to provide a way when I fear the unknown.  You would think I would know better by now and not feel such anxiety about all the details (except that the details are life and death situations!)  I met the substitute teacher right before she started and it turns out she has hypoglycemia (low blood sugar issues) so she is well aware of what the blood sugar numbers mean and the need for fast acting sugar right away when too low.  AND....when she was in college her dorm Resident Assistant was diagnosed with T1D and she was responsible for helping her when she was newly diagnosed!  I mean really!!  I am just amazed at how God has placed specific individuals in our path to care for Natalie at her school.  The last 5 weeks with the substitute teacher have gone so smoothly and there have been no issues at all.  While we are excited for her teacher to return, we are sad to say goodbye to someone who has been such a positive influence for Natalie.  She has even encouraged Natalie to check her own blood sugar in the afternoon and Natalie has been doing that daily!  Mrs. Gray still boluses (gives insulin) for snack and lunch and helps her in the afternoon if needed or if there is a birthday treat, but otherwise Natalie and the sub have handled the afternoons and if she has needed a snack or not just perfectly.  From the first day, the sub has just "gotten" it and I have felt so comfortable. 

Another amazing detail that occurred was while we were at our JDRF Walk.  While on the stage modeling our team t-shirts, (which I'm convinced they just pick new teams as the winners because clearly our shirts are THE BEST), I noticed our friend talking to someone who looked really familiar but I couldn't place where I had seen her before.  When I came down our friend excitedly motioned for me to come over and she introduced me to the 2nd grade teacher at Natalie's school!  She was there walking for her daughter's best friend who has had T1D since she was little.  She said she knows how to work her pump, program carbs and bolus.  Now, when someone says the word "bolus" you know they "get it"!  I told her that she would be Natalie's teacher next year!  What a blessing to know God already has someone in mind for our Natalie to be cared for next year.  I almost cried right there! 

Podding is becoming more routine and pod changes are a lot quicker.  It's never perfect though and always in constant change just like when on shots.   I can see why many people say pumping is more complicated than shots.  It makes me so crazy that she can wake with the same blood sugar two days in a row, have the exact same breakfast, same amount of insulin administered at the same time, and one day at fruit break be high 200's and the next low 100's.  Some days I really think I am going to lose my mind trying to make sense of it all!  Her basals have changed drastically since starting on the pod.  All insulin pumps offer so many variables to work with and it is just almost too many options for my very analytical mind!  She started on the pod with a basal rate of .20 per hour for all 24 hours of the day (boring!).  Within a week it changed to .20 overnight and .25 during the day (still too boring for me).  Here is a picture of what her basal rates are right now.  They don't even all fit on one screen!  (The next screen shows that it increases to .35 from 10pm -12am....which I am trialing right now.)  Not to mention the carb ratios that I keep changing between 1/15 and 1/17 for fruit break and lunch...one carb makes a difference!

It is so amazing to me that we can adjust basals for every hour of the day!  It keeps my mind constantly spinning and trying to figure out what is best for her ALL day.  Really, it is never out of my mind and sometimes I just wish my mind could take a break from it, but it can't.  It has been over 2 years of setting alarms through the night and constantly trying to adjust and keep her in the safest range possible, thinking about getting her through each day as well as trying to prevent future complications.  We are still checking at 11pm, 2am and more nights than not again at 4am as well (and even more if necessary).  Her little fingers are so torn up from all the finger pricks.

She has her next Endo appointment on Wednesday and I am really getting nervous about it.  This is the first one since podding and I anticipate her A1C increasing due to all the highs and adjusting to the pod.  I am interested to see if her A1C matches the averages on her PDM.  Her previous meter only gave 30 day averages and the PDM gives daily, weekly, monthly, 60 day and 90 day averages. 

Finally, not to ignore my first born son, but Jacob has adjusted to middle school quite well and even made the Honor Roll his 1st Quarter.  His travel baseball team finished off their fall season strong placing 2nd in one tournament and first in another.  They have come a long way this season and now we move onto basketball.  A funny story about Jacob that I am pretty sure ensures his future need for counseling is while talking about imaginary friends he brought up his imaginary friend that he had at the age of 4-5 maybe.  I remember his imaginary friend well....his name was Michael and he was African American (he named him after Michael from Fisher Price's Little People).  I also remember that one day he told us that Michael died and that was it, he never talked about him again.  Well the other day he tells us that after I sent Michael to time out one day he never came out and died in time out!!  Just to explain Jacob had been blaming Michael for EVERYTHING, so I finally said fine, Michael can go to time out then as well!  Now years later he tells me that I am responsible for Michael dying in time out!

I am just in LOVE with this new toothless smile of hers!

2012 JDRF Walk to Cure Diabetes

Team Coastal Cruisers 4 Natalie's Cure 2012

Sunday, September 9, 2012

1st Grade - It Takes A Village

Natalie has been back to school for a couple weeks now and her Omnipod is working out great so far!  She is really enjoying eating a carb snack in the morning rather than the peanuts and cheese she had every day last year.  I know when the first birthday treats show up she will love enjoying the treat with all her classmates rather than bringing it home as well.

I met with her 1st grade teacher, Mrs. Gray, and the nurse, before school started to train them how to check her BG and administer insulin using the PDM.  The nurse is only there one day a week and our beloved Mrs. Gray who handled Natalie's care last year agreed to do the majority of her care again although she is not in her class this year.  Just knowing that everything went so well last year made this meeting quite a breeze.  Really, the PDM walks you through everything step by step so everyone was pretty excited about how easy it is to use.  After checking BG, it asks you "Do you want to eat now?" and you press yes or no, enter the carbs, and it calculates how much insulin she should get.  Mrs. Gray has a now adult daughter with T1D and she uses expired glucagons to practice mixing and drawing it up in a syringe.  (Glucagon is used in an emergency if she were to pass out from a low blood sugar.)  I thought that was a great idea so I brought one of our expired ones (thankfully we have never had to use that scary red box) and we practiced with it.  Everything is more fun with Mrs. Gray (yes, even practicing glucagon!) and I was quite surprised with just how easy it was. I have been scared to death of that thing for 2 years and now feel less intimidated.  I have a sheet in the school binder that explains simply how to mix the glucagon and Mrs. Gray said if our girl passes out she is not going to get the binder to read how to do it!  Ha ha...she always knows how to put everyone at ease.  Natalie's 1st grade teacher has grown up with a knowledge of T1D because her Mother has been living with T1D since the age of 14.  When we pulled out the glucagon she said, "Oh yeah, I've had to give that to my Mom a couple times."  Now, I don't like that she had to administer it to her Mom because she passed out, but really how great that she has actually done it before!  I don't anticipate Natalie needing it but it does give me an extra sense of comfort knowing she is in class all day with someone who is very capable of administering it if necessary. Her teacher also has gestational diabetes so she checks her BG throughout the day too. She will be on maternity leave for 4 weeks, but we will deal with that when the time comes! The other 1st grade teacher will be on maternity leave right before her, so it is quite a year for 1st grade!   Isn't it amazing to think how God is using these two people and their different experiences with T1D to now help and care for Natalie?  It makes me wonder how God will use this later in Natalie's life to help someone else. 

The plan for the school day is that Natalie grabs her backpack (which holds her PDM and daily log) and walks with a buddy across the gym to Mrs. Gray.  Mrs. Gray checks her BG and administers insulin for her morning snack.  Then at lunch time Mrs. Gray comes to her and checks her BG and gives insulin for lunch.  Mrs. Gray still works the lunch room so she is always able to keep an eye on Natalie and make sure she eats everything (which has NEVER been a problem for her).  Since the pod is still so new and we are trying to get a good routine down she is also checked in the afternoon before recess.  Mrs. Gray checked her the first couple days and then her teacher took it upon herself to check her!  I came into the classroom early that day and Natalie and her teacher were huddled together at her desk and she had just checked her BG.  I can't tell you how heart warming that was to see her teacher take the time to do that and go above and beyond in caring for my daughter.  She said she had just checked and Natalie's BG was 80, and she asked Natalie "So what do we now?"  Natalie said "I think I probably need to eat something."  (Her teacher knew what to do, she was just confirming.)  Her teacher was so excited that she checked Natalie's BG.  It was very sweet.  She has checked her every day since in the afternoon and handled what type of snack or none at all to give her just perfectly.  It brings tears to my eyes to see in action all the details I have been nervous about falling into place perfectly.  When will I ever learn that God has a perfect plan for Natalie and He continues to provide a way for her to attend this wonderful school?!

The second day of school I read the book "Taking Diabetes to School" to the class.  About half the kids were in her class last year, so it was good to be able to talk about the pod and her new way of managing diabetes to everyone.  It was really fun to change the wording in the book yet again and say "Natalie USED to get shots, but now she has a pump!"  Natalie got a big smile on her face for that part.  I sent a letter home with the parents again as well.  I wondered if it was really necessary to send the letter this time, but I am glad that I did.  Several Moms new to the class told me how much they appreciated the letter and that it was very informative.  So maybe I'll send it every year!  It's a great way to educate others and raise awareness.  Another Mom told me she had gestational diabetes with her past pregnancies and she would be more than happy to check Natalie's blood sugar if ever needed and to be trained on using her PDM.  Another Mom that was helping in the class one morning said she is a nurse and would keep an eye on Natalie and could help her if needed as well.  So many in the village willing to come along and help Natalie and the team caring for her! 

The first week I only went in twice to oversee the BG check and insulin dosing.  It is just SO easy to work the PDM and Mrs. Gray had it down in no time!  The first day, Mrs. Gray and I were not quick enough with the BG check and Natalie even huffed at Mrs. Gray and said "this is taking forreeeever."  Just another sign of my girl becoming more and more confident, so we'll take her attitude every once in a while. 

I was concerned about the timing of fruit break and lunch because we are not used to giving insulin in between meals.  She gets her breakfast insulin by 7am, snack at 9:15am and lunch at 11:15am.  That is a lot of overlapping insulin (since insulin continues to work for 3 hours).  It took a couple days to figure it out, but right now what is working for her is that at snack time she is dosed for her snack at a higher ratio than normal (1/18) and NOT corrected if her BG is high.  Then at lunch she is dosed also at a higher than normal ratio (1/18) but this time if her BG is high it is corrected.  If her BG is below her target number we let the pdm do the reverse correction and she gets less insulin.  The CDE suggested we change her breakfast ratio from 1/15 to 1/12.  Changing carb ratios bothers me so much for some reason.  Knowing she continues to have to receive more insulin per carb just scares me.  I am trying to accept this and realize this is just what her body needs.  Anyway, this ratio change has been easier to accept because it has actually worked wonderfully and I think we might have actually striked the dreaded breakfast strike!  Most days at school she has been around 150-200 2 hours post breakfast and then still in range at lunch time.  We are not seeing any significant low BG with this routine so I am happy with it, actually I am quite thrilled with it.

Natalie still makes me walk her in every day rather than dropping her off in the carpool line. Now that they do the pledges as an entire school (rather than in their individual classes) before going to their classroom, I also have to do all three pledges (American & Christian flag and Bible) before she allows me to tell her goodbye with our ritual of kisses and hugs. Now, don't get me wrong I am very patriotic and thrilled that they do all the pledges at her school every single day. I LOVE seeing her stand with her hand over her heart and hear her sweet little voice recite the pledges. I just would rather sneak out a little earlier and get on with my day! I guess when she is 21, I will remember these precious days! She decided I have to walk her in every day until she is in 8th grade.

She is in the same class as her buddy Cole from last year. I always meant to do a post about the two of them, so will still have to do that! They don't seem to be as interested in each other this year, which is just fine with Eddie! I am glad to see Natalie being independent and speaking up for herself as well. It took a little bit of time last year before she was comfortable and we could really rely on her to tell the teachers when she felt low.   This year, she already told her teacher the first week when she felt low and the LIBRARIAN the second week! That is huge that she told one of her extra teachers. Now she also reminds her teacher, "It's 2 o'clock, aren't you going to check me?"

Natalie has been doing a really good job recently of checking her own BG "all by myself".  She has always been able to tell anyone how to do it, but she still had some trouble with the "sucking up the blood" part.  She would then get frustrated so we didn't force it.  The PDM is much easier for her to use especially since it takes a smaller drop of blood.  Our goal was that she could check on her own by the end of the school year, so she is ahead of the plan! 

I will admit my anxiety has been at an all new level with this pod.  I was really feeling anxious the first week of school.  I have been so afraid of her pod falling off at school or her going high because the pod isn't working and I just didn't feel ready to send her to school with that pod attached to her body!  I was pretty anxious the first couple of days, but when I saw all the people in the village taking care of her and how smoothly it went the first week, I have felt much more relaxed.  So if the pod falls off or she is high they will call me and we will deal with it.  I feel so confident in the teachers that are taking care of her and it is kind of nice to have a little break knowing she is in such loving and capable hands while at school.  I feel a little guilty about enjoying a break.  I'm trying to make myself rest a little in the afternoon, because the nights have been pretty rough for me.  We are checking her a lot more than when she was on shots.  Depending on her BG, we are sometimes checking every 2 hours through the night.  Now I am just as worried about the highs not being treated since she has started to develop ketones so quickly a couple times.  While on shots, I could always count on the lantus to still bring her BG down some. 

Now I'd like to brag on my smarty pants girl about something unrelated to T1D.  She was tested on an extensive list of sight words and she was able to read the sight words up to a 4th-5th grade level!  So she has tested out of her sight words for the entire year already!  Is it weird that I kind of feel disappointed that I am missing out on studying sight words with her?? 

As for another smarty pants, Mrs. Gray noticed that when she tests Natalie's BG using the PDM it is not asking "use for bolus calcs" per my instructions on the daily log.  I could have sworn that it always asked that when checking BG, but we frequently use her old meter and manually enter her BG and it definitely asks at that time.  So after calling Insulet they initially told me it will only ask that if her BG is above her target BG, if below it will not.  I checked when she was high and it still did not ask so I called Insulet back.  This time they told me that it should only ask when going through the Home page and selecting "Bolus".  They said my PDM is correct when it gives the option of "Done" or "Next" after checking BG on the PDM.  I also posted this question in the Omnipod group on facebook, and I am getting varied responses.  Since we do NOT want her BG corrected if high at snack time, we must go back to the home page and bring her BG up that way and THEN it asks "use for bolus calcs".  So podders, go check your child's BG using the PDM and tell me if it says "use for bolus calcs" or if it gives the option of "done" or "next".  I just want to make sure nothing is wrong with my pdm and I give the appropriate instructions for school...although Mrs. Gray already has it figured out no problem! 

1st day of school:

Big hugs because they aren't at the same school this year:

Enjoying her snack at school (her buddy Cole is right across from her):

Natalie's new case that holds her PDM:

Tuesday, August 28, 2012

Podding - It's Complicated

For those on Facebook, I'm sure you've seen the description "It's Complicated" as a relationship status.  Well that is exactly how I feel about that little life saving device that has been attached to my daughter for the last month.  It is a true love/hate relationship we've had the last couple of weeks!  Most of the time, I love it, but we have had our share of issues and that is when I really want to throw it out the window. 

Besides all the issues, Natalie still says she will NEVER go back to shots. She has been quite a trooper and the pod changes are getting quicker and easier. A couple times now she has not cried and said, "That didn't even hurt!" My anxiety over pod changes is lessening with each one. We have attended several parties since being on the pod and not only is it much more enjoyable for her, but it has made parties much more fun and less stressful for me. It is so awesome to just give her insulin with the touch of a button each time she eats something and not worry about the timing of it all. She was able to sit at the table with all the other kids while I gave her insulin. She didn't have to go off to the side for a shot. She said, "Parties are just so easy with my pod now!"

Scientist Natalie partying with the pod:

When the pod is working great, we are really just enjoying a sense of "normal" again that we haven't had for 2 years. Dinner time is less stressful because there is no rush to do shots on time and have dinner ready early enough for her. Mornings before school are less rushed without shots to prepare. The times that the pod is working well and things are going smoothly do make up for any issues.

Natalie still amazes me with the depth of her understanding of the reality of life with diabetes.  The other night, as I dried her off from the shower, she said, "I am going to wear the pod every day for the rest of my life, until the day I die! Then when I go to heaven I won't need it anymore because I won't have diabetes. It will be so great! I just know I am going to heaven. Do you know you are going to heaven?"

Thanks to everyone for your advice and encouragement on my last post.  Just go back and read all the detailed comments to see that the DOC (diabetes online community) is pretty awesome!

Now for the issues:
We are still having trouble with the pod sticking for the full three days when it is on her bottom.  We have had great success and fabulous blood sugars when she wears it on her leg, but we really need to keep rotating.  We are still dealing with some scar tissue build up on her legs from the shots, so need to give them a break as much as possible.  She LOVES wearing it on her leg!  A couple weeks ago we put her pod on her bottom on a Friday night.  She started out with great blood sugars and all was great on Saturday until I checked her after dinner and she was over 300.  That was odd, because normally at bedtime she trends low, plus dinner was pretty low carb and she didn't even have a dessert or snack.  I checked the pod and there was some blood around the cannula, but not in it, so I bolused and we put her to bed.  She stayed in the 200s with continuous pumping of insulin and finally came down to 129 by 2am, 111 at 4am, but crept back up to 219 at 8am.

 I should have checked her pod before she ate breakfast.  She ate breakfast as usual, I pre-bolused and set a temp basal to try and avoid the post breakfast spike and we all rushed to get ready for church.  As I got her dressed I saw the pod was starting to get loose around the cannula side (our usual problem).  The adhesive starts to detach from the pod right by the cannula.  I thought maybe I could put some me-fix tape over it and get a little more time out of it.  As I looked closer though, I could see the cannula was not even in her skin!  Panic set in...she had just eaten 30 carbs for breakfast and now I did not even know if she received any of the insulin and at the worst time of the day for blood sugars.  I told Eddie there was no waiting to change the pod, it had to be done now.  I went into rush mode and boy did I have that pod filled with insulin and her leg swabbed for a new pod in no time!  I guess I really can get the job done when under pressure.  I slapped that new pod on her leg so fast, checked her sugar, set a temp basal increase, grabbed all her diabetes supplies, threw my hair in a ponytail and we were off to church.  Church starts a half hour later for the summer and we arrived even a half hour later than that, which I'd say is pretty good considering the circumstances.  I checked her in the car and bolused as the PDM suggested.  Her pod beeped in church with the end of the first temp basal and then again with the start of a new one.  Poor girl, already the beeping is annoying to her.  I couldn't even concentrate in church, because all I could think about was how high her sugar was going.  The highest we saw was 389. 

Then at the end of the sermon our Pastor started talking about having joy in the suffering.  I could not keep the tears in, I was feeling so overwhelmed and fearful that morning.  He talked about someone he knew who fought chronic fatigue and then cancer later on in life and was always joyful.  It reminded me of my dad who fought cancer for years.  I think of him often while we are living this life with diabetes.  He always had a good attitude and never questioned God.  I find it really hard to have joy in the suffering though when it is my child's health that is suffering, not mine, and I fear for her future.  I cried as we received communion and they prayed over our kids.  It was an emotional morning.  The rest of the day improved and her blood sugar was only 70 post lunch which was actually good to see and know the new pod was working!  The pod lasted the full 3 days (because it was on her leg!).  THEN...it was time to put it on her bottom again.

Here is a picture of the pod after we removed it on Sunday morning.  Notice how the adhesive is separated from the pod.  The cannula was also bent and kinked and yes that is blood too.

The pod lasted just 2 days the next time as well. It worked great for a couple days and then she started having a lot of highs (300s) at bedtime and would not budge.  I really hated to change it at bedtime but we were not having any luck getting her sugars down and I didn't want a repeat of the previous weekend.  So we changed it to the other side of her bottom (she was not happy about that) but I really wanted to try again with it there and then the timing would hopefully work so she could have it on her leg for the first couple days of school.  I placed it on the highest part of her bottom with the cannula facing to the outside.  She really cried and said it was uncomfortable, but it looked the best and highest we had done.  I had high hopes for this pod.  She initially dropped to the 200s so I assumed it was working, then she spiked to low 300s where she pretty much stayed most of the night despite my continuing to pump insulin all night.  She climbed in bed with us Saturday morning and when I checked and she was still 300, I checked her ketones and they were 1.5.  YIKES...that scared the heck out of me.  We got a shot ready and I figured out how much to give her, but also called the on call Dr. because that is what we are supposed to do when she has moderate or larger amount of ketones.  Natalie's Dr. was on call and he confirmed the amount of insulin she needed.  He also said to change the pod.  While it was obvious it was not working, I still hated to change it AGAIN.  Natalie asked if she could have it on her leg and that is where it went! 

It took all morning for the ketones to clear, but they decreased quicker than I anticipated.  Natalie drank 3 cups of crystal light to help flush out the ketones.  She was acting fine until she said her tummy hurt and she threw up all 3 cups of crystal light.  I have never seen so much throw up.  It covered the entire floor area the length of the couch.  I didn't know if that was from the ketones or so much crystal light, but I started to wonder if we were going to have to make a trip to the ER.  She was horrified and look scared because she had never thrown up before.  She covered her mouth and said, "oh what was that?"  She was pitiful.  Then she kept saying all morning, "I think that is called barfing.  I barfed.  I've never barfed before."  I myself was feeling quite nauseous and anxious due to the ketone scare, so every time she said the word "barf" well it made me want to do just that!  She never had ketones while on shots even when she was sick or had high blood sugars.  I really loved the lantus she took which kept the ketones away.  We didn't let her eat anything with carbs until the ketones were gone.  Did I mention that Jacob had a friend spending the night and Eddie made choc chip waffles?  She was so patient and never got upset about having to wait.  So we were trying to be a normal family in front of Jacob's friend, but 2 unplanned pod changes, syringes, multiple meters, and test strips on the table is anything but normal!  Then he said "oh my sister barfs all the time."  Well, he fits right in with us then!   I still can't figure out what was wrong with that pod. There was no blood in or around the cannula and it wasn't bent. It was high enough where there was no scar tissue. It looked great. 

I am happy to report that since those incidents we have had a successful pod on on her bottom that lasted the whole 3 days!  I put it on a Thursday afternoon, which was perfect timing so she only had one day at school with it there.  I did put a strip of mefix tape on top of this one and that seemed to help keep it somewhat more stable.  On Friday I found her jumping backwards with full force and landing on her bottom on the ottoman.  Hmmm.....do you think that might be causing it to come loose??  Crazy girl!  Then on Saturday she attended two birthday parties and she had great blood sugars for all the party treats.  Another party on Sunday, including swimming.  I told her to swim all she wanted because once we went home it would be time to change the pod.  It stayed on the whole time and I let her take a nice long bath.  All the water definitely loosened it up but I decided to give her dinner and bolus with that pod before changing.  Well AGAIN...once I changed it that pod was REALLY loose and not sure if she received her dinner bolus.  New pod went on her leg and she was in the high 200s/low 300's until 4am.  I did not sleep much at all that night.  I checked ketones at 2am and they were already up to .6.  The pod did eventually kick in though and she was 98 by morning.  I've been doing an increased temp basal with pod changes, but except for this instance, she generally is having great blood sugars after we change the pod.

I'm finding it hard to figure out the right time to change a pod around her bath and bed time.  I don't want to do it right before a bath and risk it coming off in the water, but after a bath tends to be too late at night and I want to make sure her skin is good and dry.  If we change it at bed time then we are checking all night to ensure it is working.  Then there is the timing around school.  I have it set to alarm one hour before expiration (there is then an 8 hour grace period, but it will beep every hour).  If she were home and was having good blood sugars I wouldn't change it until we were in the grace hour period.  Now at school I don't want it beeping every hour so we might have to change it the night before.  It is taking more planning than I anticipated to figure the right timing of all this!