JDRF Walk

This is team Sky Walkers!!

What a great day we had and what a great team we have. We are one lucky family to have such amazing family and friends. This group of people all raised money and then drove an hour and a half,  walked three miles, and then drove an hour and a half back home. We then had a BBQ to thank everyone for their time and effort. 

Skyler with her Oma

Our team consisted of kids who ranged in age from 3 - 12,  cousins, aunts, uncles, grandparents, her godmother, and, of course,  friends ( who are family). We had men who usually will only walk long distances if it involves camouflage, the woods, a gun, and deer. We had every person who was a direct part of the day Skyler was diagnosed. We had grandparents who are in the middle of a big move. Both Skyler's and Henry's teachers were there and some of my students and former students. It was a great group of people who came out to show their love and support for Skyler ( who felt very loved ) and to donate to this cause in hopes that all type one diabetics someday see a cure.

I felt very good about the job I have done spreading awareness when most members of our team approached me at some point to express their shock that the food being offered was not very healthy and did not list the carbs!! I understand that the food is donated, but if your going to have six large trays of cookies how about having the carb count readily available for the DIABETICS in the crowd. Anyway, overall it was a great event and a great day.

Our team raised about $3,800 and we still have donations rolling in!



Three miles is a long way for the little ones

Look at her brother and cousin moving along!







GREAT NEWS!!

Look at  the pure joy plastered on this little face! I bet you can guess why. Yesterday at 4:00 we recieved official word that we are approved for the omnipod and it is on the way!!!! Ironically she was on the beach (plugging and unplugging all day) when I gave her the news. Her comment was "Yay, now I can't wait till next summer!"  We are in for a whole new adventure now. I will keep you all posted on how the omni pod is working for us.  Thanks for all your prayers.

UPDATE

If you can believe it we are still waiting. That is correct, still waiting for an answer to whether we are approved for the omni pod or not! This process started 18 days ago. We have 9 days until the start of school. The kicker is that the hold up has not been an obnoxious insurance company who would never understand the life of a diabetic. The hold up has actually been the dr.'s office!? First, they were late on sending in the letter of medical necessity. After Insulet recieved that I thought we were all set and would hear in a few days. I didn't want to appear like an impatient lunatic (which is how D makes me feel half the time anyway) so I didn't call to find out. After about a week I called my contact at Insulet, who is now becoming a friend of mine, to check the status. She told me that they had been waiting on clinical information from the doctor. There was silence on my end at which point she asked if I was taking a deep breath? I responded that I was taking several deep breaths and that it was a good thing that it was her on the other end of the phone and not my doctors office. 
I was pretty angry and ready to call the doctors office, however; I could feel the tasmanian devil brewing inside of me and did not want to unleash on some poor unsuspecting soul at the doctors office (knowing that I would not get the doctor directly right away).
 My contact person at Insulet reassured me that she would continue to call and she would contact me when they recieved the info and were sending out to insurance. Today, I did get a call that they were able to send out to insurance and they expect a reply in 1 - 2 days.
I am no dummy and I realize that the people at Insulet are all over this and very customer service friendly because they stand to make a decent amount of money off of my little girls illness, if this gets approved. That is their job - to sell the product. I expect more out of my dr.'s office. I expect them to UNDERSTAND, to have COMPASSION, and to want what is BEST for my child. It is pretty sad that the reason this process is on the move is because of money. It is not because there is a little girl dealing with a crappy disease who just wants to feel normal ( there is that word again).

A Little Vent

I have discussed the omni pod at length with Skyler's doctor. After making the decision to switch to this pump, the instructions I was given was to fax my info as soon as we reached the out of warranty date on her current pump. I was then to call the office and they would fax the letter of medical necessity. I did my part. Of course I did because I am the one who loves, and lives with, a little girl who is very anxious to get this new pump that does not have tubing.

 She wanted this pump for the summer so she could swim and not have to deal with "plugging back in" for a bolus. She has had to be very patient because her out of warranty date was August 13th (basically the end of summer where we live). She has been talking about swimming, phys. ed class, wearing dresses, her new purse to carry the pdm etc., etc.

 Now this little girl AND her mother are anxious because school will start soon and it would have been nice to have this in place before the start of school. Well, chances are that is not going to happen.  I called the omni pod company to check on the status (ready for a health insurance fight)and I learned that; after a phone call from me and two phone calls from the omni pod people, my dr.'s office has not faxed the letter of medical necessity!!!!!! Needless to say I am slightly annoyed. I have called and left another (very calm and socially acceptable) message for the dr. to please send the letter. If it doesn't happen now I don't know how calm or socially acceptable I can remain with my future phone calls. I understand that my daughter is one of many many patients at this office, but I don't think it takes too much to get this done for us.

We are now going on two weeks of waiting and it hasn't even gone out to insurance yet.

This, my friends, is my little diabetes vent for the day - thanks for reading and for, I am sure, understanding.

FINGERS CROSSED

 We are anxiously awaiting a phone call to find out if our insurance will cover a new pump for Sky. The warranty on her pump is up and we are trying to get her an omni pod. After much research and OVER thinking my husband and I (mostly me) were having trouble deciding which pump to go for. We decided to ask Skyler. I explained to her the different options on the two pumps that we had it narrowed down to.  She chose the omni pod which was the way were leaning also. We then dicussed this with our doctor and she was very supportive of our decision to change to omni pod.
Now, we wait with our fingers crossed.

Normal? I don't think so

It has been a long time since I have posted anything. This summer has been incredibly busy, but also very fun and full of time with friends and family. I have, however, come to a new revelation in my life. This is pathetically long overdue, but... here it goes..... get ready... WE ARE NOT NORMAL! That's right after living with diabetes for four and a half years I am ready to accept the fact that we are not a normal family.

Nothing we do is easy and none of our emotions throughout the course of one day would fall into the normal realm.

We can't call a last minute babysitter so we can have dinner out with friends, we can't do overnights away from our kids, and Skyler can't do overnights away from us (yet).

When Henry gets sick (and ends up in the emergency room twice - not diabetes related). I should be able to take that in stride and focus just on him, but we are not normal. We have to consider the fact that we don't want Skyler in the emergency room exposed to all sorts of things, but we don't want to leave her with others while we are an hour away in the hospital.

When we are spending the day at the lake (which we do everyday in the summer) Skyler shouldn't have to come out while all the kids are playing to "plug back in" for a little while.

On "date night" we should be able to go for a canoe ride where we will be out of cell phone range without having an anxiety attack half way through the trip, but we are not normal! (that date will not happen again in the near future).

We should be able to go to the wedding of a friend and leave our kids to be babysat on the beach by their grandparents (out of cell phone range), but we are not normal and my husband left the wedding after an hour because we were both worried.

I don't want to come across as I am complaining about Skyler. I love her more than life itself and will take care of her forever if I must or if she wants me to (doubt it!!), but I don't love diabetes and how much it impacts our lives everyday. What upsets me more than my own selfish complaints is that Skyler has no idea the frustrations that we feel, but someday she will feel them all too and will realize that this is for the rest of her life. I pray that she will take it all in stride and learn to live her life to the fullest regardless of the abnormal circumstances in her life.

Although this sounds very negative, I am actually considering my revelation a positive thing. It is helping me to be more honest with family and friends and actually express to them that this is hard and as much as they all want to help, sometimes they can't! We have focused so hard on not letting diabetes feel like a burden that I don't think we have been totally honest with everyone on how hard this really is. All of this, of course, with the idea that we are protecting Skyler from feeling like a burden. I am realizing that this actually comes at an expense to Skyler and that no one who loves her would ever consider her a burden. I guess we just so wanted to protect her and help her to feel "normal" that we stopped being honest. I still feel very strongly that diabetes will never stop her from doing anything that I would let her do without diabetes, but I just need to be more honest with everyone about the fact that this is hard work and we are not "normal".

I took Skyler to see the movie Beezus and Ramona and there is a scene where Beezus explains to Ramona that being different is what makes her so special. I whispered to Skyler that our family must be really special.

I am hoping all you D Moms might be able to help me. How did you educate your families and friends? I have read a lot of books about diabetes, but I am wondering if there are any good books geared towards helping family members understand diabetes better.

Mount Diabetes

 Sometimes it's just that one extra thing in my life that can make it all seem like too much to handle. Not everyone understands that it may be just one more little thing, but that one more thing is on top of a huge mountain named Diabetes.

The one extra thing for me right now is the end of the school year. The end of the school year in our school is busy, and that is stating it mildly. This goes for both students and teachers. I'm a teacher and both my kids are students so, we are all over extended right now. Field trips might be the END of me this year. We have, what I consider, a ridiculous amount of them at the end of the school year. I have a really hard time with this and am wondering how all the rest of the D moms handle field trips. It's a little trickier for me because I am a teacher in her school, but not at her grade level, so our field trips are not the same.

I am wondering if the rest of you moms out there go on field trips with your diabetic kids, or is there someone on the trip specifically for your child?

 In the past, I have been able to make my own accommodations for field trips, but for various reasons that is getting harder to do. 

I am in a unique situation here, but I am trying to figure out what the standard is for diabetic kids and field trips.

JDRF Walk

We are finally doing the JDRF walk this year!! The past few years we have had weddings to attend on the same weekend that the walk fell in our closest location. Mind you, our closest location is an hour and a half away from our home. I have mentioned that I live in a small town, but I don't know if I have mentioned that we are about 45 minutes from any major towns and a least an hour and a half from a bigger city. This often brings upon some real inconveniences, but it balances out with positives of living where we live.

Speaking of the positives of living here, I set up a team for the walk and named it the Sky Walkers.  Skyler thinks this name is really cool, and all of us who grew up during the first Star Wars phenomenon get a good laugh out of it. Anyway, I set up the team about two weeks ago and we already have 15 walkers just from this little town. Our teammates plan to raise money and walk with us. They are all coming up with different ways to raise money. One of my students wrote a beautiful letter about Skyler and diabetes and she plans to mail it out in hopes of collecting money. I have seen the people in our town step up to help people in a time of need, but for me this goes beyond that. To think that these people are willing to spend their time collecting donations and then clear their weekend to make an hour a half drive to walk three miles in honor of this cause is amazingly generous and I am so very grateful.

In addition to our community we also have a number of family and friends who plan to join our team and walk with us. I have mentioned before how much our family supports and loves us and so I am not surprised by their willingness to participate; however am still amazed and grateful for all they do and have done in the past.

Skyler is overwhelmed by the support and love of the people that surround her. As a family we are honored to be raising money for a cause that could help so many children and adults living with diabetes and even  future generations who may face the same challenges.

A Special Bond

  I have a friend who has a child with diabetes. The story behind this friendship is unusual. My husband grew up spending summers in the town where we currently live. During his youth here he met a lot of friends, some he has remained close to and some have grown apart. One particular friend, C, and my husband grew apart over their adult years. After we moved to town permanently I ended up having C's son in my Kindergarten class. His son, M, did not want to come to school in the beginning. Some kids march right into Kindergarten like their going to run the place and others need to be gently removed from the clutching grip they have around their Mom. These are the kids that break your heart on day one and usually give you the biggest heart warming feeling on Kindergarten graduation day. That was certainly the case with M. He and I formed a very special bond. He grew to really love school and as the most shy one of the group took the biggest role in the Christmas performance. He is now a smart, confident, caring 15 year old boy who, believe it or not, was diagnosed with diabetes six months after Skyler. This news came as a bigger shock than Skyler's diagnosis because in our town of about 400 year round residents I would never have thought another child would be diagnosed.  I formed my special bond with M before I had my own children. M is 7 years older than Skyler. For some reason he captured my heart way back then as a little five year old boy and still has a piece of it now. I was so shocked and so very saddened by the news of his diagnosis. Over the past four years since diagnosis our families have provided support for one another in different ways. Last year, I watched him graduate from ninth grade  as the salutatorian of his class and I felt so proud for him and his parents.

  Over the years I have formed a friendship with M's mom. I also ended up being M's sister's teacher for Kindergarten, fifth, and sixth grades. She too, is dear to my heart. I have summed it up here, but our families have a long history together. From the friendship of my husband and C to our own children both living with diabetes. They are a private family and tend to keep to themselves, but we have these very special connections.

  The reason I chose to write this post today is because I received an email from M's mom , which is not unusual. She filled me in on a few different things going on in her life and a few things with the kids. She then mentioned how she has been feeling sad lately over the fact that M has always wanted to be a pilot and because of diabetes he can not live this dream. This, of course, broke my heart. She said she is having a hard time coming to terms with a limit to her child's dream.

  I have spent a lot of time thinking about this. I decided that I have to have faith that our children (all of these type 1 kids) did not get diabetes by some freak chance, but that God chose them and us for some reason beyond what we can see right now. Sometimes I have a hard time seeing through the sadness that diabetes can bring on, but then I remind myself of how amazing these diabetic kids are. They are a special lot designed for something special.

  I know M will find much success in his future due to the young man that he is growing into and due to the support and love of his family. I don't want to see a limit to his dreams either, but it is possible that this will lead him down a path of even greater reward. This is so much easier said than felt, but maybe saying it will help us all to feel it.

Waiting

I have been testing H's blood sugar for about a week now. He's not showing any major symptoms, but he has been very lethargic and moody. S was the same way before diagnosis, of course I had no idea what I was dealing with then.  She ended up with excessive thirst and frequent urination. Some of H's readings have been on the high side 150's - 160's. His fasting blood sugars have been between 100 and 111 with one 88 in there. I will continue to monitor this and continue to pray that he doesn't have diabetes and he's just run down or affected by these terrible black flies that torment the Adirondacks in the spring. I am only going to check his fasting blood sugar until Friday and see what that looks like. I am hoping that my Dr. will agree to do an A1C on him and put this questioning to rest. I am realizing that checking him randomly like this will drive me nuts and there is no pattern, so why bother.

What I am realizing through this wait time is that either way it will be alright. I will be heartbroken for the lose of his perfect health, but I also know first hand that he and we will rise above diabetes. It is a part of us as a family, but it is in no way all of who we are. When S was diagnosed I remember thinking that diabetes could make us or break us as a family. This is the kind of stress that can tear people apart. If anything diabetes did the opposite for us. This difficult, stressful, sometimes impossible thing has brought us closer together. We all rely on each other. We all understand the ups and downs and what we have to do keep all of us happy and healthy. K needs to fish and hunt whenever he can, I need to be able to go running ,  the kids to need to play and have fun daily, and we all need each other all the time.  My mother said to S, "I really hope H doesn't have diabetes." S responded by shrugging her shoulders and saying, "If he does we'll just have to deal." Some look at the way she delivered that response as a little kid who doesn't know any better, when the truth is that she is right and she actually knows better than any of us.

IF he is diagnosed I will have to remember to read this back to myself when I am an emotional wreck :)
Also, I am sick of referring to my kids as S and H. Their names are Skyler and Henry.

Freedom Update

   I'm starting to get used to this freedom thing. I took all of the advice from the rest of the D moms and I am enjoying myself. Last night I went to dinner with friends. We had a great meal and enjoyed some wine. I didn't worry too much, but noticed that out of habit I kept checking my cell phone.  My husband can't even get cell service where they are camping. I also woke up at the regular times that I check S in the middle of the night, but suprisingly I was able to fall back to sleep. Tonight I am headed to a Memorial Day party where I will not have to avoid the buffet table or be the food nazi. I won't have to watch her little face look at the hundreds of desserts and pick just one! She will, however, be enjoying smores over a camp fire.
  They all came home today for a couple of hours to regroup. It was good to see them. It was even better to hear my husband say that he checked her four times throughout the night because her numbers were so good that he couldn't believe it. He was planning on catching a high because of the smores, but it never happened. He earned some points for that! They were very excited to be going back. I was tempted to join them tonight but, we all agreed that I should enjoy another night of my Mommy weekend. Thanks to all of the D mom's - the reassurance is very helpful.
  I will be very excited to see them tomorrow morning!!

Freedom

    It is Memorial Day weekend and time for the annual father - kids camping trip that takes place among our group of friends. It is such a great thing. The Dad's plan everything and take all the kids to  a spot not far away for the weekend. The kids have a blast!! They look forward to it for weeks. The Mom's are psyched also. A night without the kids; should we go out to dinner, relax at home ALONE, go shopping, or go away for the weekend ourselves. Well, those all sound great but, if your me it's just a giant opportunity to worry and lose even more sleep than normal for two days.
    Now, I do need to mention that I totally trust my husband; however, I am the main diabetes care giver. I am the one who gets up in the middle of the night. I am the one who plans the meals ,and I know what is best to eat and when to eat it. All in all it is the overnight time that worries me. I automatically wake up to check S - he isn't programmed that way. He is very reassuring and I do trust him it is just so difficult to have her away from me overnight.
    So I will go out tonight with all the ladies who will be thoroughly enjoying their freedom and most of them will notice that I am just not quite myself and that I may not be quite as excited to have this freedom that seems so precious to us moms. Some of the ladies will understand and will, in discreet and quiet ways,  continue to reassure me that things will be fine. Some of the ladies won't "get it" at all. It won't even cross their minds that this experience is very different for me than it is for them. I can't really blame them. Like a lot of people out there some of them have no idea what managing diabetes is like. Those ladies will leave there and possibly judge me for being worried or for not enjoying my freedom as much as they might tonight. I will need to remind myself that all they would need to do is walk in my shoes for one day and they would quickly learn what it is like to have a child with Type 1 diabetes.  I will also remind myself to thank God for the people in my life who do get it and are always there for me - even if they don't directly live with diabetes.

Summer Weather

It quickly became summer here in NY in the past few days. I'm loving this weather, but it is wreaking havoc on my life in some ways. For one, of course, diabetes. We went to the lake after school yesterday  from about 4:00 to 6:00. The kids were in the water most of the time which means it was  "S unplugged."  I checked her a few times and had her come out of the water and plug in for a half hour in the middle of our time there. At that point she was 70, so I thought great she can be uplugged for a while (silly me!). I gave her a half a juice box and then let her go back in the water a little while later.  Since it was so hot I assumed her blood sugar would stay low. When we left the beach she was 137. Great! Her blood sugar was so good that we stopped to visit my in laws for a little while. S asked her Oma for an omelette and they cleared it with me. Well that's easy no carbs in eggs right? Well, at bedtime she was 485!!!!! I am guessing that being unplugged caught up with us. Once again we are dealing with a whole new set of variables because the season is changing. I don't know about everyone else, but unplugging to swim is a real challenge for us. I am also wondering if anyone else out there notices high blood sugars after eating eggs.  I don't get it, but it happens with S often.

I am also a runner and these temperatures force me to get up extra early to run in the morning and avoid the heat. When you are going on the amount of sleep us D moms get the last thing you want to do is get up extra early in the morning. I do run in the morning most of the year, but this spring I have been running in the evening and loving it. Oh well, the good news is that this is unusually warm weather so everything will cool off a little, but  I will still be dealing with the uplugging issue at the lake.

                                                                                PUMP FREE!!

I Might Win This

We have had a crazy weekend, but things are starting to work with S's blood sugars. She ended up having a slight fever Friday night, which could account for some of the high blood sugars. Her fever was gone Saturday morning and she was feeling fine (strange). I decided to start the alternating basal rate Saturday morning. We also got our toughness on and put the CGM back on. OK, so it may have taken some toughness accompanied by some bribery (She wanted a new book, so I had to buy her one to convince her to let me put the CGM  back on.) She decided that calling it a CGM was hard and not so fun so she named it Daisy. It makes it sound so much nicer.
So, with Daisy in place and a new basal rate going we're feeling like we have got this thing beat and so far so good. Her numbers have been good during the day. She was still climbing at night and Daisy has helped me figure this out. I am alternating between.15 and .2 all day except from 8pm to midnight where we are staying at .2. Now, I said her numbers have been good, but I'm looking for great! According to Daisy she seems to climb a little after meals (170 -180) so now I am going to tweek the meal boluses just a little and see how things go.
I have to say that even though Daisy and I don't always see eye to eye I am very grateful to have "her" right now. If a cure is a long way off I pray that technology will keep helping me with this job. I also owe a big thanks to the on line Moms out there that have been reading. The suggestion of alternating basal rates has been a  major part of this adjustment. Thank you so much! I am questioning why my health care professionals never suggested this option!?hmmmmm

Good thing she's a little book worm or I may never have gotten Daisy back on S's body!

The Word of the Day is Patience

Patience: Quality of being able calmly to wait or endure.
Frustrate: To prevent from achieving a goal or gratifying a desire.

As both a mother and a teacher I am constantly trying to help others achieve a balance between these two things. I tell my own kids and my students that learning something new can be frustrating, but with patience and perseverance you will have the reward in the end.

Diabetes is a real test in this kind of balance. It is very hard to calmly wait to get blood sugars to a point where I am not afraid I am damaging her body in some way. It is very hard to calmly endure the fact that she could have a severe low outside of my care. It is extremely frustrating to have to talk my little eight year old into putting the CGM on which she says really hurts and bothers her the whole time it is on. It is ultimate frustration when I decide we have to put the CGM on and then  have it fall off less that 24 hours later.

 I guess I get to practice what I preach to my students and kids by having patience with diabetes in the face of frustration. I guess I should look at this as daily lessons to my daughter of how to handle this disease the good, the bad, and the ugly of it with grace and patience. Maybe if I keep reminding myself that she is watching and learning from me it will help my ability to be patient and prevent me from losing my mind right now :).

So, as you have probably realized I did get the CGM on her and we both survived it. All went well last night and early this morning. Then after playing hard in phys. ed and swinging on the swings it fell off!!!!! I am currently logging her crazy numbers and I am trying to have patience. I think I will (patiently) wait until Saturday to start alternating the basal rate between .15 and.2, but I am anxious to try it out. Also, I'm still debating whether both, or either of us, possess the patience to put the CGM back on again.

Score: Diabetes 1 Mom 0

Today diabetes is winning and it is driving me nuts! I'm going to break down and put the CGM on S tonight. This will not be fun. She hates the process of putting it on(so do I because she screams and then continues to cry because she says the pain moves down her whole leg.) Is this really what the person who loves you the most is supposed to do to you? Anyway, the intention is all good.

Here is my frustration. I reset the basal rate to .15 from 7am to 11 am to avoid the low she had yesterday morning and what do you think happened this morning? 256 at 10am snack time!! This was after eggs and 1/2 of a wheat english muffin for breakfast??? Her basal rate then went up to .2 at 11am and at 11:45 she was 356. This is not making sense. I just got some advice from another online mom suggesting I try alternating .15 and.2 every hour. This would give her the same total basal that the .175 basal rate would give her. That .175 is what I believe she needs, but her pump can't make that increment in dosage. This is worth a try.  I think my game plan is to put the CGM on tonight and then try the alternating basal rate tomorrow. Of course, with a 356 I am now thinking maybe she is getting sick and if so I will need to start this entire process over again. Wish me luck!

.15 or .2 ???????

Before diabetes blog week I was writing about my confusion over S's overnight blood sugars. I am still getting up three times a night mostly because I just don't trust diabetes. I'm now pretty confident that I have it all figured out. I moved her to a .2 basal rate for the overnight except from midnight to 3am. Midnight to 3 goes back to .15 and then 3am to 8 am back to .2. Of course last night at 2 am she was 286. I guess I may still have some figuring out to do. I have not resorted to the CGM yet, because S absolutely hates it. She is so good about everything to do with diabetes, but does not like the CGM.

OK, so shortly after I figured out the nighttime blood sugars her daytime blood sugars started to rise. So, I have been trying a temp basal rate of .2 at various times to see what it does to her blood sugar. So far so good. Today I set her at .2 for the entire day and I have my fingers crossed that this will be OK. It seems very wrong when you are using your own child in an experimental way that could result in a bad outcome for her. It goes against every natural instinct of mothering. However, I am very grateful for the fact that I am in S's school with her all day. It really helps my sanity. I will be able to see her at 10:00 for snack and at 11:45 for lunch.

We are approaching summer here in NY, so once I have this all figured out it may all have to change do to hot weather and high activity level. Oh the joy of diabetes.

This may; however, help make our decision between a pump that doses .025 and the omni pod. I still have about 3 months to contemplate that decision.

Sign

I'm a little frustrated today because of a couple of interactions I had with people regarding diabetes this past weekend. As I was stewing over them I began thinking of a few other things that really bother me regarding the misunderstanding of this disease.

I decided I would like to wear a sign that states the following:

1. Type 1diabetes and Type2 diabetes are two different diseases.
2. Giving children candy does not equal love.
3. No, she didn't get diabetes from eating too much sugar.
4. Yes, it is genetic even though we haven't quite figured that out for our family yet.
5. Yes, she can do it (whatever "it" may be).
6. Sugar Free candy doesn't help and is actually a big lie because it has sugar alcohols, so please stop buying  it for her.
7. Please don't buy her artificially sweetened products. You may not agree with my reasoning for this, but please respect that we try to avoid them for our kids!
8. For one particular person, I would like you to know that they probably stopped calling diabetes "the sugar" in the 1930's. Please follow suit.

9. Last, but not least, can you please save the awful diabetes story about your dear Aunt Mildred for a time when my eight year old diabetic daughter is not in your presence.

Sorry for coming across as annoyed today, but I am. For the most part people mean well and I know that . I try very hard to be patient and polite, so that's why I am venting here and not to the people who are offenders of the above mentioned annoyances. I thought this would be a good place to get it off my chest. So although today I feel like hanging the above mentioned sign around my neck, the sign below makes me much happier!

Innocence

Diabetes Blog Week (if there was a cure)

Today's assignment is a tough one for me because I am not the one with diabetes. I can't really speak for S, but I can tell a story about a time this topic was posed to her. The NBC Nightly News had a piece on exciting, new diabetes research. Brian Williams mentioned a possible cure for diabetes. S looked up from her game of checkers with H, and asked, "what did he just say?" I explained and she said, "I don't want a cure for diabetes." Well you can imagine my reaction. I momentarily stopped breathing and my eyes just about popped out of my head. I proceeded to ask, in my most calm mom voice, "why not?" S simply said,  "because it is just part of me."

S was diagnosed at 3 and doesn't really remember life without diabetes. This conversation occurred when she was seven. My husband and I did not react or explain what a cure could really mean for her life. I was in total shock, but when I thought about it I realized that this comment came out of pure innocence. I decided that for the time being that innocence is a beautiful thing. She is not embarrassed or self- conscious about blood sugar checks or boluses. She doesn't care that she is the only diabetic in her school. She has no worries about possible future complications because we haven't explained them to her yet. S knows that she could pass out from a low and that if her blood sugar is too high she would have to go into the hospital. This knowledge helps her to be responsible, but I think that is enough weight for an eight year old to carry around.

I often go back and forth between feeling lucky she was diagnosed so young and feeling sick over the fact that she was diagnosed so young. On the positive side, S doesn't know her life any other way. Every milestone she reaches and choice that she makes involves diabetes and always will. On the other hand, I hate to think about the fact that when she is 23 she will have already lived with this disease for 20 years. I pray that this won't bring on any complications she may have avoided had her diagnosis been later in life. In this back and forth is where I remind myself to give it to God. These are worries that I can not predict, fix, or change. All I can do is take care of her the best I can and set an example for her of how to handle this disease both medically and emotionally. At the same time I will continue to pray every night for a cure or at least for the technology that will help my little girl live a safe, independent, long, and healthy life.

I know her beautiful innocence can't last forever, but I will enjoy it and let her enjoy it, for as long as possible.

A Diabetes Photo Album

Diabetes Blog Week

Get the meter

Poke her palm (S will not use her figertips)

Squeeze for a little blood (when you use your palm sometimes you need to squeeze a little blood out)

Deliver insulin

Eat a healthy(?) snack

and

REPEAT!

NO HFCS!

Diabetes blog week day 4

I could probably ramble on for a long time about food, but bottom line for me comes down to one thing we try to avoid at all cost, and one thing I find very helpful.

We avoid:

It is like poison to my little diabetic. I am constantly amazed at how hard I have to work to avoid this junk! Does anyone remember the commercials that were out a while ago trying to prove that high fructose corn syrup was actually good for you! The first time I saw the ad I seriously thought it was a Saturday Night Live skit.

On a positive note, the thing I find helpful is Dreamfields pasta.  S is a big fan of pasta so early on we had some tough times with that. First of all, the pump made pasta easier to deal with and then along came Dreamfields. Now I would consider pasta manageable. We are able to avoid that big blood sugar spike.

Like I said I could go on and on about food , but I'm certain that most of what I would say will come up in a future post. Besides the one ingredient of high fructose corn syrup, we try to live with the everything in moderation mind set.
Yvette

Support

Day 3 of diabetes blog week

I would have to say that my biggest supporter and help with diabetes is my husband. We are in this together. We both love our kids more than anyone ever could, so it only makes sense that we need to support each other to make every day work. I guess it's just daily life so I sometimes take for granted how well we balance each other out.
I am by far the more emotional one of the couple. My husband ( K ) is very centered and level headed all the time. He is not easily shaken where I am sometimes an anxious mess of worry. Often the answer or the comment that I need is in the form of one of his famous "one liners." Somehow in very few words he knows how to make things clear in my head. Making a concern or a problem seem very manageable. On the other side, I am the planner of the family and the one who has thought of the possible problems so we can take care of things ahead of time. One thing K is not, is a planner!
When S was diagnosed I had a very difficult time emotionally ( I doubt that is any different for any of you moms out there). I know my husband was heartbroken as well, but he held everyone together for those first few weeks.  For some reason in the first weeks of her diagnosis all ability to do mathematical calculation was erased from my overwhelmed, over emotional, over tired brain. When trying to figure out an insulin dose I would not trust myself and would call K at work. I would explain the scenario, he would calculate in his head, and spit an answer out at me. In a short time I learned that I actually hadn't lost all math ability and could figure out the proper amount of insulin. This is a very good thing because, did I mention,  I teach math??!!!! All in all K is my balance, when I am crazed he is calm and it all works. I am a lucky lady!
We are both S's support system. From the start we agreed that we could never let diabetes stop her from doing anything. We work hard everyday at organizing our lives to be sure that she can safely participate in the things she enjoys. Most things require that one of us be present, so we make that happen. Between both having jobs and having two kids this is sometimes a challenge, but so far so good. Soon H will be old enough to participate in his own activities and our lives will be even more of a juggling act, but we will take that as it comes.
I can't end this post without mentioning the other people in my life who give my family and I so much love and support. I don't know what I would do without my best friend who always "gets" me, and will talk to me for hours about anything. She is S's Godmother and I couldn't have chosen a better person to help look after one my two most prized possessions. My parents, my in -laws, and our family and close friends help us almost daily in some way. Also, this new community of bloggers that are so supportive and helpful. They say it takes a village to raise a child and I've got a really great village for my two.
So once again I realize that in a strange way the curse of diabetes has blessed me. Take nothing and no one for granted.
Yvette

Our Favorite Way to Treat Lows

Maybe the title is wrong because this is my favorite way to treat lows, but I think both kids make out pretty well.

It all starts with Halloween. My least favorite holiday!! We do the dress up thing and the trick or treating, but when that is over things are a little different for my kids, and I'm sure for most diabetic kids. Before Halloween I pay attention to something small they have been asking for, maybe a little truck or a movie. I buy whatever it is and make sure I have it for Halloween night. After trick or treating I tell them if they give me their bag of candy they can have the toy that I bought. SO FAR - this has worked every time. They get the toy and I get the candy. The candy goes into a bowl in the pantry and we use it to treat lows (most of the chocolate goes in a separate stash for me).Oh, and whenever S gets a candy for a low H gets one also.  One of the first sentences H ever said was "I feel wow" ( he had a 'W' for an 'L' substitution). He would say this while holding out his hand for a blood sugar check. He does not have diabetes, but he quickly learned that anytime S said that she felt low she got a tasty treat. I guess that's a pretty concrete example of observational learning!

Next comes Christmas. Any Christmas candy that comes in I let the kids have one and I dump the rest into the bowl.

Finally, there is Easter. I let the kids have a few pieces that day and the rest goes in the bowl. I also try to fill the hidden eggs with some other things besides just candy, like goldfish crackers and pretzels.

The excessive amount of candy that comes in at all of the holidays is too much for any kid, never mind those with diabetes. When S was first diagnosed it used to make me angry that sugary treats pour in at holiday time. I decided to stop getting mad and just make the best of it. I use it as an opportunity to teach my kids that things are much better in moderation and I use the candy to treat lows! We also always have glucose tabs and juice boxes on hand. I have to say that I find a juice box the quickest way to fix a low, and it is heaven in the middle of the night when I can slid the straw in her mouth and she starts sucking away in her sleep! Also, the truth is,  I still get mad when the candy pours in! :)

I can't wait to read other blogs to get some more ideas on how to treat lows.
Yvette

A Day in the Life

This post was written for Diabetes Blog Week

It is hard to explain a day in the life with diabetes because it is so ever changing. When I think about the hundreds of things that can affect blood sugar I know that one day is never the same as the next. Of course, we have our regular check times, but so often in the course of a day the plan has to change.

 What the day is like depends on the day itself; is it a hot day, a cold day, or somewhere in between? We all know how temperature can affect blood sugar.

What the day will be like depends on what we will be doing that day; will we be swimming, skiing, playing on the playground in the blazing sun, hanging out in the ice shanty (where its 80 degrees inside and 10 degrees outside), or will we be curled up on the couch watching movies?

 What the day will be like may depend on whats going on in school that day; will there be a test, will there be an exciting field trip or guest, will there be a great after school activity like rock climbing, will she be doing something that will make her nervous like playing the piano in the school performance?

And of course, last but not least, what the day will be like will depend on what she eats that day. This is where I really begin to micromanage. I pack S's school lunch and snack, but what if someone brings in a birthday treat? Will anyone consider the best time to eat that sugary snack based on the one diabetic child in the building, and can I really expect them to plan around her? What if that sugary snack is passed out at snack time when she will be going back to class to work for another hour and a half without being able to run it off? What if phys.ed. class time changes will anyone consider that her snack time may need to change also? Maybe not, so we always have extra snacks and sugar on hand. What if we go out for dinner and the menu just doesn't work for D? What if I promised desert tonight, but her blood sugar was 350 before dinner?

Every mother or father of a diabetic child has these "what ifs" and more running through their minds all day, everyday. Running right next to all of these thoughts is remembering that we want them to have a "normal" life. We want our diabetic children to enjoy the birthday treats, go skiing and swimming, and do the cool after school activities. Over the last four years I have learned that she can do it all we just need to plan.  Life is more fun when it can be spontaneous, and when your mom and dad are saying "of course you can" instead of "no, because you have diabetes." Our spontaneous just needs to be a lot more organized than other peoples spontaneous. That helps make life easier for our kids with diabetes while making life just a little harder for those of us who love them. All parents worry about their kids and plan for their day, but  Moms and Dads of diabetic children worry and plan more. We can't let our guard down.

So, God Bless all of you Moms and Dads who so diligently care for your diabetic children. God Bless all of you diabetic adults that give us such insight on what it is like to have diabetes, and God Bless those of you who don't directly live with diabetes, but read this blog because you care so much!

Yvette

One of Many Decisions

OK , I'm getting there with this overnight thing. The past three nights I have alternated the basal rate, which for the most part has worked out except for the fact that Thursday mornings wake up blood sugar was 189, Friday's was 60, and this morning 72!?  A little confusing, but we're getting there. I'm worried about that one 60 morning and if she sleeps late. During the day her numbers have been very good.

This situation has brought on a new dilemma for me though. S's pump warranty is up in August and she can get a new pump. We had decided to go with the omni pod. S is a very active kid and the tubing is a pain. She loves the idea of the omni pod. The problem is that it makes the same jump as the medtronic pump. You can only go from .15 to .20 and S really needs something in between. At our last dr. visit they told me that medtronic is coming out with a new pump that will include the smaller increment in delivery. Now what do we do??!!!!! S is eight now and this pump will stay with her until she is 12.
 Part of me thinks the right thing to do is get the new medtronic to ensure better control, but the other side of me thinks of S as a little girl who is growing up. I anticipate that the older she gets the bigger deal wearing a pump will be. Nothing with diabetes has ever really bothered S except for the CGM (that is a story for another post). I imagine that when clothes matter more the pump will bother her,  along with a lot of other things that we Moms and older diabetics all know suck about diabetes.I also don't think she will need that smaller increment for very long. She is a tiny thing, but as she grows I don't think that small amount will matter as much, but we will be committed  to it for four years. Of course control of her numbers is the most important thing, but I can't ignore the importance of her social- emotional well being. She is such a happy easy going kid and I don't want diabetes to change that in her. I often think about the pre teen and teenage years with D. It is usually a hard enough time for kids never mind having to monitor everything you put in your mouth, checking BS constantly, keeping track of site changes, and choosing your clothes based on some tube hanging off your body. Just to name a few.

If anyone has an opinion on my situation or thoughts on either one of the pumps I mentioned I welcome your thoughts and comments. Thanks

Still Trying to Figure it Out

Well we made it through the night last night. S was 120 at about 8pm, 72 at 11:30 (I gave her a few sips of juice), 82 at 3am (a few more sips), and 112 at 7am.  The problem occurred later in school. At about 8:30 am she was 59. I am assuming it was a build up from the increased basal overnight. On the positive side her teacher told me that Skyler got her meter out, checked her own BS and announced that she was 59. They treated it and the rest of the day was fine. I am thinking of doing the .20 basal from 8pm to midnight, go back to .15 from midnight to 3am, and then back to .20 from 3am to 7am. If you are confused you may need to read the post from yesterday. I am certain that her highs happen in the beginning of the night and in the very early morning hours, but it seemed that the .20 was too much all night. If anyone has any suggestions I would love to hear them. I tried to reach her Dr. today to get her opinion, but couldn't.

I have been trying to add some new pictures to my blog. The main picture is from our vacation to Myrtle Beach this past spring. The picture of my kids is from a trip to Washington DC. I love to take pictures and for 8 years have mostly photographed my kids, but I am now trying to branch out and take some other pictures. The daffodil is from our garden, where we live we can still get a frost so I figured I would take the picture so we can be sure to enjoy it for a while. Also, yellow is S's new favorite color so I thought it would be appropriate on this blog.

Long Night Ahead

The field trip was a success!! S had a great time and her numbers were great all day. Once again I thank God for the people in my life. My best friend was on the field trip and that brought great peace of mind. Thank you!!!!!!!

Tonight I am preparing to be up quite a few times. S has been running high overnight. The problem I have is that her basal rate needs to increase, but her medtronic pump increment isn't small enough. I have to go from .15 to .20. The last two night I did that from 8 - 12 and so far so good, but she is still waking up high, so tonight I plan on setting it for.20 all night. I'll probably check before I go to bed, midnight, 2am, and 4am. That sounds like fun. I will be a zombie by tomorrow night.

Baby Steps

Tomorrow is one more opportunity to give S some freedom. She will be going on a school field trip. As I mentioned in my last post I am a teacher in S's school which was a blessing that also followed my months of prayer after her diagnosis. S was to be in school everyday,  full day the school year following her diagnosis.  I didn't know how I was going to let my four year old diabetic out of my hands for a full day. I know all mothers have a hard time letting their "babies" go to Pre k or k, but this seemed like an emotional load that I really couldn't handle. I had left teaching to be home with S when she was born. A decision I never once regretted . Unbelievably, the summer after her diagnosis and before her first full year of school, a teaching job opened at her school and I got the job. If that was not a gift from above than I don't know what is. I was not ready to go back to work or leave my son yet but, how could I pass up the opportunity to manage her diabetes and be there in case of an emergency. Even though I struggled with leaving my son , we owned a business at the time and he was able to be with my husband most of the time. I should mention that I live in a very small town and our school only has 28 kids pre - k through 6. I teach the upper grades, but I see S for snack and lunch everyday and she and her teacher have me available all the time. I should also mention that our school does not have a school nurse, so you can imagine the concern I felt.  I realize how blessed I am to be in this situation and realize that other parents have to send their kids to school everyday alone.  I do often think of  other parents and give much credit to them for the strength that they have no choice but to have. Yet another way diabetes can wreak havoc on your soul.  

When I write all of this I am reminded of how diabetes has changed our lives in so many ways. To stay a positive role model for S I have to focus on the positive ways it has changed our lives.  Going back to work wasn't what I wanted, but because of that my husband and son have a very special bond and S and I both benefited from my being in school and we continue to benefit. I believe our family is closer and stronger because of diabetes. We have to count on each other for help and be able to trust each others judgment. My kids are both learning that sometimes you have to delay gratification (like waiting for blood sugar to come down before having a special treat - even if it is Christmas). And when 5 year old H hugged his sister and cried while she had blood drawn at her last visit I know he is learning compassion through all of this.  I believe that the education that S is getting from caring for her diabetes is far beyond what most kids learn at this age. So, as much as I wish she didn't have this burden to carry for the rest of her life most of time I can find the positive aspects underlying diabetes. I believe that there must be a reason why S has diabetes and why our family has had to learn to accept this and roll with it.

I sort of drifted off topic there. S has a school field trip tomorrow that I will not be chaperoning. She will be going to a play about an hour out of town. They will be having a snack and a lunch throughout the course of the day. I am ok with this because one of the chaperones is my best friend and S's Godmother so I know she will keep a close eye on her. I have printed out all the carbs and packed extra snacks and juices. As much as I trust both my best friend and S's teacher I will still worry.  I realize these are baby steps that I am taking in letting go, but these baby steps feel pretty gigantic when it comes to someone I love so much.

Tea party alone

This was a big weekend. Once again I find that something that is no big deal to the parents of a child without diabetes is a milestone for our family. S was invited to an American Girl tea party at a friends house and wanted to go to the party alone. The house is only about 2 miles from my own home, but regardless this was tough. S and I are very close. I am with her all the time. In addition to being her mom I am a teacher in her school, so I think it is very normal that she is looking for some independence. She is very responsible for the most part. In school she checks her own blood sugar and delivers insulin through her pump. I am in the building if she needs help and I label the carbs in all her food. Anyway, It is hard for me to send her to a party and put the responsibility of diabetes on other people. I asked the grandmother of the girl hosting the party to help S keep track of what she ate and then have her call me and I would calculate carbs and make sure she gets the right amount of insulin. It all worked out. I was really proud of S and each time we do something new I feel we are all stronger for it. I was also very thankful for the grandmother who was more than willing to help and very understanding.

I have a hard time leaving S with anyone, but we do have family members that watch her. I have no problem explaining to family members what could happen if she has too much insulin, doesn't eat for awhile, or what can happen if she doesn't get insulin. The difficulty I have is telling people like the grandmother of the little girl hosting the party. I think there is a fine line between informing people and scaring the life out of them!
I try to set up a safe situation and make sure I am easy to reach, but anyone living with diabetes knows anything can happen. S and I were both very happy at the end of the day. She had time alone with her friends and I was happy all went well with diabetes. Someday she will take this disease on alone and I have a very hard time understanding how anyone can manage this disease alone. Again, I pray for strength, I pray for technology, I pray for a cure, and I pray that she will forever be surrounded by good people that love her.

check up

We recently had the three month check up for S. Her A1C has always been between 6 and 7 and at this check up it was 8! I feel awful about this. I am reminded of how difficult this disease is and how responsible I am for her health and her future health. All parents feel responsible for the health of their children, but not all parents are trying to mimic an organ of their childs body. Essentially, I am S's pancreas walking around outside her body trying to figure out what is going on in her body and what will go on for the next few hours after she has eaten. I am always aware of this but, after hearing an A1C of 8, it is in the forefront of my mind again,causing sleepness nights and anxiety. This all just goes with diabetes so I'm trying to work my way back to the almost calm that I work so very hard to feel about diabetes.

Diagnosis

I started this blog with the hopes of connecting with others who experience what I do, to help newly diagnosed families, and as an outlet for my own thoughts and feelings.

My daughter was diagnosed with Type 1 diabetes about four years ago at age 3 1/2. She is now eight and a happy, healthy, beautiful little girl.

We all have those days in our lives we will never forget. Those big, significant days that eventually add up to be the story of your life. January 28th 2006 was one of mine. I brought my daughter to the pediatrician for frequent urination and excessive thirst. I thought she had a bladder infection. After a blood test I was told she had type 1 diabetes. I insisted that the doctors were wrong. I explained how we don't have diabetes in our family and we eat a healthy diet (I obviously didn't know very much about Type 1 Diabetes then). I immediatley called my husband and the next thing I knew he was there. A family member took my son home. Another brought my daughters comfort supplies (nuk and barbie)to her, and employees took over running the business. Then we were in the hospital; needles, crying, panic, fear,guilt, more needles, numbers, questions, diabetes educators, doctors, insurance, and after two days they sent us home.

One of the most memorable parts of this experience came on the hour and a half ride home from the hospital. My daughter slept, my husband drove, and I cried and prayed. I prayed that I would be able to take care of her and help her avoid any complications for the rest of her life. I prayed for the strength to never let diabetes stop her from doing anything she wants to do. I also repeatedly prayed that my one year old son, who was a terrible sleeper, would finally sleep through the night so I could attend to diabetes. This prayer was answered. That night, and every one since, my son has slept through the night. I only hope the rest of my prayers are so beautifully answered.

Miracle

I love this poem and forgot that it was actually my first post back in April. I just thought I would share it again.


Listen.

Do you hear it?
I do.
I can feel it
I expect a miracle is coming
It has set loose the restlessness
Inside of me

Expect it.
Dream about it.
Give birth to it in your being

Know! something good
Is coming down the line
Finding its way to you
Like all things find their way to God's children
Listen!

-Jewel Kilcher