A letter to the girls D-Team

This post is Day 1 of Diabetes Blog week:  to check out more click on the link below!

Dear D-Team,

We love you and only get to see you for a short time every 3 months.  For us, and the fact the girls are young our appointments take longer then 15 minutes.  We still appreciate the fact that you take the time to talk to the girls and see how they are doing, not just how Mom and Dad are doing taking care of you.

You take the time to get to know the girls, and you know them pretty well, but there are some things you just can't see in your short appointment very 3 months,  we both know that but I thought I would share some of what you don't see.

I wish you could see how well the girls do at school.  I wish you could see how wonderful her caretakers are, Miss Lynn and Miss Julie, as well as their teachers.  Lovebug and Princess are big girls at school!  They do very well taking care of themselves and doing what they need to do.  It does help a lot having the support of the staff at school to encourage the girls to keep at it.

I wish you could have seen when Princess received her Student of the Month award for Perseverance  not just for her diabetes  but for her school work in general and all she has to deal with.  Her teachers are so very proud of her.

I wish that you could see when Lovebug does well on a test, despite a low or high blood sugar and the smile on her face when she knows what she has accomplished.

I wish you could see how much they really do support each other when the other one is down.  They are a huge encouragment to each other and it just warms this Moms heart.

I know that you see them at their best but sometimes I would love to let you see a glimpse of how much they wish they didn't have diabetes.  Like the days when they whine and complain about having to poke their fingers before they eat.  Those days when a bad site has them down or when ketones are at 4.9 and  I want nothing more then for me to have diabetes at that very moment and not them.

When they girls tell me that hate diabetes or they wish they didn't have it anymore.  The times when we get talking about cure that could come, and how they light up at the thought they wouldn't have to deal with diabetes anymore.  I don't talk about it much, but they know.  They just know.

There are some things that I wouldn't want you to see, like how I let them not check their blood sugar on occasion before they eat.  (I do have the CGM's so I'm not running completely blind!) Or when I let their sensors go as long as 14 days....I am getting good numbers from them so what is a few extra days?

Then there are those times when I realize I haven't changed a site in 3 or 4 days (Princess needs hers changed every other day to avoid infection) because I just plain forgot.  It's rather embarrassing!!  I tend to be a rule follower...but there are times when it just can't be helped.  And honestly I pull sites early more then I leave them in too long because if numbers are wonkey,  then the site is the first thing to go!

Above all, I just want to say how wonderful you are!  You never rush us, you take the time to get to know the girls in the time you do have with them.  It means the world to this Mom.  Thank you for the very bottom of my heart for all that you do for them  You are AMAZING!!!

Signed one very grateful mom,

The Move

Before you get all excited, no we aren't physically moving.  Although I would be more then happy to move to a warmer climate!  I miss palm trees and sunshine.  We don't have palm trees and sunshine is seriously lacking here in the winter. And now I am off on a tangent before I even  got started, so where was I?

Oh yes,  I was talking about the move.  Our move to another insulin.  I was a little hesitant to make the move but after switching our infustion sites from rubber cannula's to steal (a switch I never though we would make but I was desperate)  So, I ( well, really my hubby and I) decided to make one more BIG change.  

The switch from Apidra to Humalog.  Don't get me wrong,  I LOVE Apidra, (for Lovebug.)  It works great for her. So, when Princess went on the pump we naturally (and to keep things simple) decided to put her on Apidra too.  

Hindsight, that may have been a bad choice. To assume that what worked for Lovebug would work for Princess was wrong.  I knew they were different (diabetes wise) That is why they have different pumps and now different insulin. 

Since moving to Humalog almost 3 weeks ago, the difference for Princess has been amazing!   A couple things we have noticed since the switch (besides the normal numbers.)  No more double arrows down on the CGM.  Princess complains all the time when there are double arrows down on her CGM.  (which means that her blood sugar would drop very rapidly.)  She can feel herself falling and complains she's low.  500 and 600 numbers have been no more.  I am happy to have not seen either number for a couple weeks now.  I'm realistic, I know we aren't going to have this good of numbers all the time but to see them for the first time since her diagnosis is a relief. 

We did have to make some major basal rate changes.  We raised basal 155%.  Yes, you read that correctly, 155%.  I reset the temp basal for that percentage every day for a week before I actually went in a changed her basal rates in her pump.  I also had to tweak a few Carb ratio's at breakfast and snack at school but overall it has been a smooth transition. 

So after almost two years of crazy high numbers all the time, we are finally seeing normal numbers (I use that term loosely). I honestly thought we never would.  I tried so many things and nothing worked.  The new insulin and infusion sites were a last ditch effort on my part.  I'm so glad it's paying off.  It's a huge burden off my shoulders.  You might even hear a little hallelujah coming from these vocal cords!  

Diaversary #2

One year ago today, my world came to a crashing halt. I never thought that I would have to "deal" with another diaversary. I only thought it happened to "other" people. I thought that Lovebug's would be the only one we would every have to "celebrate".

That all changed, one year ago today, when Princess was diagnosed.

I will never forget...that meter counting down. It was the LONGEST 5 seconds of my life.  Then the 508 that was blaring back at me...my heart sank into my stomach in shock.  I couldn't breath for a second.  I remember thinking to myself...is this real?? Could this really be happening??  I wanted to break down and bawl but I quickly pulled myself together.  All I could think was the meter had to be wrong...but that wrong I knew was pretty impossible.  Even a dirty finger in a non-d kid wouldn't have a blood sugar that high.  Not to mention the fact she hadnt' eaten since breakfast about 4 hours earlier.

It's one of those days, much like Lovebug's diagnosis day, that changed me.  Forever.  I many ways I don't feel  like I ever really mourned Princess's diagnosis like I did Lovebug's.  I never broke down. I just bottled it up inside and cried when I could.  I mostly  cry to myself when no one is around and to Tim when I need to because he has been my rock through all of this. I feel like it's hard to mourn for one kid when you still have to take care of the other one's needs.Lovebug's came first. The second time around we knew what we were doing.  It didn't hit as hard, well  physically it hit hard but emotionally Princess diagnosis has been a lot harder. I just don't know how to put words to the emotional part of it...

In all honesty I don't feel much better about the whole thing then I did 6 months ago. It's hard. It sucks. There is two of everything.  I hate that 2 of my kids have Type 1.  I hate that they can't live a normal life. I hate that they can't do a lot of the things that their big sister can do.  I hate that I worry about them 24/7. I hate that I don't ever get more then 4 hours of sleep at a time...if I'm lucky.  I just plain freaking hate diabetes and what it does to my girls.

I know that is a lot of hate but there is some positive. (honestly I do TRY to focus on the positive!) I know something good will come of this.  After all,  I have a husband who is supportive, involved in their care and advocates for them.   I have wonderful friends in the DOC and I wouldn't know them without diabetes. I have grown and learned things about myself.  I am much stronger. I have become a much more compassionate person. I look at the world through a different set of glasses now. But I  have also gotten some thick skin and I filter what I let bother me and what I don't.  I'm different now.  Diabetes has changed my outlook on life.

So today, like everyday, I will take the highs and lows and make the most of it.  Despite Diabetes.

Why do I blog?

I saw this blog post prompt on Wego HAWMC and thought it was a great idea for today. 

When I started this blog, about 4 years ago it had nothing to do with diabetes.  It was just fun for me to write about my life experiences being a wife and mother.  Then when Lovebug was diagnosed with Type 1 Diabetes in April 2009 I stopped blogging for a while.  About 8 months into our journey with diabetes I ran across a couple other D-Mom's blogs and was so touched that I thought I would start sharing my thoughts on "paper".  

I never really thought people would start reading it, well other then my family and friends.  But then a couple D-mom's found me and that was then end of that!  I quickly realized sharing our story of raising a child with Type 1 Diabetes  I could help other moms and families out there and that is the biggest reason that I blog.  I want to share out story with other parents and families going through the same thing.  I want to let them know that they are not alone in this, like I thought that I was the first 6 months after Lovebug's diagnosis.  I had very limited people I knew that had children with Type 1 and felt very alone in taking care of Lovebug.  

As I have blogged I have also become passionate about new technology in diabetes care and advocating for my girls. Especially when it comes to FDA approval of new technology as well as diabetes care in school.  These are two issues that are near and dear to my heart. 

Technology helps my girls a lot.  Lovebug can not recognize her low blood sugars and wears a CGM to alert me, her teachers and herself.  I see improvement someday's when she will come to me and tells me that she feels low and actually is.  Most times she says she feels low and is in fact high and not low.  What is frustrating is there is technology out there that would help her even more, a new sensor that makes the CGM insertion less painful.   But the Enlite Sensor is not approved here in the States.  It is approved everywhere else but not here. Hopefully it will be available soon, here in the States. 

Same thing goes with the Medtronic Veo, a pump that has a low glucose suspend feature that can suspend the basal rate if a low is being predicted with the CGM.  It is wonderful technology but the pump is tied up somewhere in Washington  waiting approval from the FDA.  

Anyway, I will get off my soapbox now!  

Back to why I blog. 

Last year Lovebug started preschool and we got our first taste of what school would be like.  Lovebug started kindergarten this year and it has gone really well.  Better then I had imagined that it could go.  We are very blessed to have her at a wonderful school filled with staff that doesn't just take care of her well but actually care about her and loves her.  What more could a mom want!   Unfortunately it is a private school, and it cost money so whether or not she will attend next year is up in the air right now.  I wish that money wasn't an issue but it is.  It shouldn't  be when talking about the best care and school for my daughter.  

I see so many of my fellow D-moms struggle with the school about the care of their d-kid.  It's frustrating.  I wish that we could just send out kids where we thought best, no matter the cost or what district we live in.  I know I am getting a bit political now but this is when I think it would be a great idea for my child's tax dollars to follow here where ever she goes, private or public school.  Maybe it would make (some) school's straighten up and get their heads out of their you know what and actually start caring about the kids again.  

When we had a second child diagnosed almost a year ago, it became even more important to me.  While there are increasing numbers of families with one child with Type 1 Diabetes it is less common to have two children.  (unless there is a family history, of which we have none) It became even more important to me to reach out to those families.  My blogging has decreased over the past year mainly because of the time spent taking care of the two of them. When they are only ages 6 and 4 there is a lot of work to be done by mom and dad!  

Having been on this diabetes journey for 3 years now with Lovebug and almost a year with Princess, it has just made me more passionate about blogging and reaching other parents.  Even if I don't get the change to blog every day.  :) 

Freedom

I never thought that I would think of an insulin pump as freedom, but for Lovebug it is.

Lovebug told me again today that she loves her Pod.  When I asked her why and she said it's because most of the time she doesn't have to wear her (pump) pouch now.  (and she loves her pink cover for her PDM)

I would agree.  I love the Pod because she doesn't have to wear a pump pouch all the time too.  It's kinda nice to see her "normal" without something hooked up to her.  Her pod is hidden so not everyone notices and most of the time no one can see her CGM sensor either.  It gives Lovebug a little sense of normalcy.

I really wish that she didn't think that her diabetes wasn't normal.  I believe that starting school this year has made it more apparent to her that she isn't "normal".  That makes me sad.  Part of me always wanted her to think that diabetes IS normal.  But I know that is very unrealistic.  Deep down I knew that someday she would realize that she is a little bit different.  Just like when she asks to go to a friend's house.  I finally had to explain to her that the parents have to know how to take care of her and her diabetes.  Her reply, "Oh".  In a very sad voice.  I felt like I had just taken all the joy out of life.  Not exactly the response I wanted to hear.  .

I am glad that her Pod has given her some freedom, in making her diabetes a little less noticeable to others.  Don't get me wrong here, I'm not ashamed of her diabetes and I don't think that she is either.  She just wants life to be a little more simple and if that means not being "tethered" to a pump then so be it.  To me it's just another step in her growing up and becoming her own person.

Dusting off...

I decided to go ahead and dust off the old blog, since I haven't blogged in FOREVER!  It certainly hasn't been for lack of trying.  I just really haven't had the time but I miss it and it's time to get back and write a little more often!  

We "celebrated" Lovebug's 3rd Diaversary yesterday.  It was bittersweet, as usual.  For some reason it hit me really hard this year and I'm not sure why.  I think it might have something with Princess's one year diaversary coming up here in about another 9 days.   

I hate that they are so close together.  Their diaversary's that is.  I wish I didn't have two dates to remember. I hate that I have one.  How the heck am I supposed to process both of them?? I can barely process one! I don't know a right way to do this and I suppose there probably isn't a right or wrong way, so to speak. 

It's hard to know what to feel.  I was super depressed after Princess was diagnosed. The first month or so I didn't know which way was up or down.  I felt like I was just going through the motions.  I grieved, for the most part, but my heart still hurts so much.  More then I ever thought it could hurt.  Someday's I still feel like I am going through the motions.  Just doing what I need to do to get by and keep them safe and healthy.  (which is no easy task)  

I look at my two little girls and wish everyday that this was a bad dream that I could wake up from.  I hate seeing them suffer.  It really, really stinks. I wish that I could just take it away from them.  I have to stay focused on the positive though, God has a purpose in all of this. ( I have to remind myself of this quite often, sometimes numerous times a day)  A purpose that I just can't see yet, I may never see.  

I know it has made me a stronger person. Stronger then I ever thought possible. I have "grown" some pretty thick skin the past couple years too.  I tend to not let stuff bother me like I used to, I just can't waste my energy.  Especially since most day's I don't have much! My energy has to be focused on my family and my girls.  They come first.  I know not everyone understands, but that's okay.  I don't expect them to.   But at the same time, if something is wrong my inner "mama bear" comes out and I make it right.  I won't tolerate my girls having anything less then what they deserve. 

I guess in essence that is why I blog and reach out to other families.  I want to educate those that don't know. I want to reach out to families who are right here with me and advocate for everyone so that those with Type 1 can be a little  less misunderstood and live a life that is just a little bit easier then what they have to deal with now.  

Bittersweet

I was getting breakfast on the table this morning and noticed both Lovebug and Princess checking their blood sugar.  When did this happen?  Why are they growing up so fast??

I think I have said this before, I love watching my oldest (and non d-kid) grow up. I love watching her learn new things and watch her personality come out.  It has been a little different with Lovebug and Princess.  I love watching them grow up too, but it is a little more bittersweet with them.

As they grow up, they become more aware of their diabetes and that they are "different".  Lovebug is just starting to notice this. (or at least express to me that she notices) They also become more independent with their diabetes and take on a little more of the responsibility so they can be "free".  Lovebug started wanting to check her own blood sugar about 6 months ago and does it on and off all the time.  I still ask her if she wants me to do it, but she usually tells me she wants to.  Then there is Princess. My little miss independent.  She sees Lovebug checking her blood sugar and wants to check herself also.  I know it's because big sis is doing it and she wants to be like her big sister.

It's hard to watch though.  I don't like that Princess wants to take on this responsibility at such a young age.  I want her to want me to do it.  Neither of them really understand this is going to be with them the rest of their lives.  (unless of course we get a CURE which would be more then WONDERFUL!!) Despite it all, when they get tired of checking their blood sugar I will be there to take over it again.

Someday it will be their responsibility and I won't be able to take it from them.  Until then I will do everything I can for them.

Time for a change

More change isn't something I was really looking for right now. Seriously, we have had enough this past 10 months.  But Lovebug has (in her own special way) convinced me that change is what she wants and so change is what she is going to get. 

It all started back in October.  We had been toying around with the idea and when Lovebug's Celiac panel came back positive we decided to put it on hold until we knew rather or not we were looking at a diagnosis.

At Christmas, things changed.  

Her pump broke Christmas night.  So, because of the Holiday we had to wait 3 days for a new pump.  It was back to MDI it for a few days.  I was a little terrified because I wasn't sure how she would react to having to have shots again, but like usual, she was a trooper about it.  My biggest surprise was that night when she realized that she didn't have to wear a pump shirt or a pump pouch to bed.  She was ECSTATIC that she didn't have to wear either to bed.  I just can not explain in words how happy she was.  I could see it in her eyes.  So much so that it made me tear up.  I never knew that she was concerned about her pump pouches. I asked her why she didn't like them and she said, " I like them Mom, I just don't like having to wear them all the time."  Wow, what a way to break a mothers heart.  She has always been such a trooper about everything when it came to her diabetes.  I never knew she felt that way.  Powerful words coming from a (almost) 6 year old.  

All three days she was without her pump, she woke up to realize that she didn't have to put a pump pouch on that morning.  She was so happy that I thought about keeping her on shots and not going back to the pump for a while.  She was THAT happy.  Realistically, I knew that wouldn't really be the best move, especially considering school!.  

When her new pump came a few days later, she wasn't even excited about it.  It made me very sad.  I want her to be happy on the pump, not sad and wishing that she didn't have to have something attached to her waist 24/7.  

It made my hubby and I think a bit, although we didn't have to think about it too long.  You see, Lovebug found something in our diabetes supply cabinet that I had actually forgotten were there.  Demo Omni Pods.  

When she found them, she insisted on wearing one.  Seriously, insisted.  I asked her if she knew what it was, and her reply was, "Yes, mom.  It's a pump!"  So I explained to her how the pod works and she told me she would like to have one.  A real one.  

I was a little shocked.  I thought that the "fun" of it would go away after a couple weeks, and it didn't.  She kept asking me when she was going to get her real pod.  Um, I don't know....soon?  (in the meantime she was still wearing the demo pods, she didn't want to take them off!!) So my hubby and I had  a serious talk at this point.  We also talked with other friends whose kids use the pod and even had Lovebug watch some videos on YouTube of other kids with their pods.  The video's made her even more excited. She is sold, so we are sold.  We called the endo's office and started the process of switching.  

Now, I have add that I personally LOVE the Ping that Lovebug uses now  If it weren't for her prodding us along there would have been no switch.  Why change a good thing, right? But this is what she wants and what will make her happy. If it makes diabetes just little easier or her, then I am for it!! 

Her first shipment of pods came today and she was jumping up and down hugging me when she got home from school. We are just waiting on the PDM to get her, which should be here in a few days and a little training from our CDE and we will be good to go!

Lovebug is so excited and I have to admit that I am excited for her!! 

 

The way things were

This afternoon as I was watching TV, Lovebug came up to me, climbed up onto my lap and fell sleep. She hasn't done that in quite a while. It was something she did quite often as a baby.  She liked to do it to my hubby too.  Hence how she got the nickname Lovebug. So, when she climbed up today I couldn't help but soak every single second of it up. It brought back all those memories from when she was a baby and toddler.  Sometimes I miss those days. Although with diabetes "scaring" my memories now I really wouldn't want to relive them. Just miss them.  Sentimentally anyway.

Lovebug all cuddled up with daddy

Princess is very similar to Lovebug that way. Princess loves to climb up onto you lap or snuggle with you on the couch but not for very long and not without LOTS of wiggles.   Now I am wondering when I won't get as much of her loving on me as she does now.

I remember Peanut (our healthy pancreas kiddo) before she went to school. I have always enjoyed watching her grow up and learn new things. However bittersweet it is.  But with Lovebug and Princess it feels different.  The older they get the closer they get managing their own diabetes.  While I know it really is a long way off yet, it's hard to watch.

Lovebug checks her blood sugar herself a lot now. (at home anyway) She is a little more involved in her care.  She has become much more vocal about it.  Especially about the fact that she has to wear a pump pouch all the time.  She gets frustrated when she is too high or too low ( I am afraid I might have rubbed off on her there just a bit)

Back around Christmas her pump broke and we had to go back to shots for 3 days until we could get the new pump. Normally it would have been here the next day but because of Christmas being on a weekend it took a couple extra days.  I will NEVER forget the look on her face and the excitement in her eyes when she realized that night that she didn't have to wear a pump shirt or pump pouch to bed.  Not only could you see how happy she was by the look in her eyes you could tell by the way she was jumping up and down giggling! It brought tears to my eyes and almost made me consider keeping her on shots for a while and taking a pump vacation.  (until I quickly thought of school and all the other people that would have to be taught how to give shots and decided that just wouldn't be a smart move)

Freedom.  I know what that is like but I'm not sure she even remembers life before D.  Her normal life.  But I remember it.  I remember the carefree way we could just go about our day.  I didn't have to take 10 thousand different scenarios in my head and then decide if what I want to do is either a good idea or not feasible because of blood sugar numbers.  I (vaguely) remember when I slept in more then 2 to 4 hour increments.

I remember when she could just go about her life and just be a kid!  How I miss those days.  I miss them even more with Princess.  I guess because her diagnosis still seems so fresh to me, even almost 10 months into this.  They are just slipping further and further away.  And while I don't want to relive them I am afraid the some of the memories will fade.  Masked by diabetes and all that it entails.  I am afraid when I look back, I won't remember their lives before diabetes any more then they do.

Funny how I wish things were different, yet at the same time I wouldn't change a thing. I guess it is just me trying to live in the moment and be more accepting of what has been handed to me.  Yet I will hold on to and cherish those days, the way things were...

  

The Results are In!

Lovebug's Celiac test came back Negative!! 

I am both happy and relieved that we don't have to deal with this right now.  I'm not sure how I would have handled another T1 diagnosis and a Celiac Diagnosis with a year.  Not to mention there is just so much going on right now, I really didn't need one more thing on my plate to "worry" about. 

I have to admit, I was fully expecting the test to come back positive.  I honestly asked the nurse twice if she was reading it right. I guess after 4 months of waiting and wondering I just expected that we would go through all the issues, the blood tests and the biopsy and it would come back positive. (even though that was really the last thing I wanted.) I really had prepared my heart and mind for the nurse to say that the biopsy came back positive. 

 In all honesty, I am happy that it was negative but also a little annoyed. I just went through 4 months of not knowing, worrying and putting Lovebug through blood tests and a biopsy,. just to have it come back negative.   It almost doesn't seem worth all the stress it caused me and Lovebug.   

Her antibodies weren't elevated very high, just a little.  She had very few symptoms.  I know the doctor recommended the biopsy, to be sure. Looking back, I'm not so sure I would do it. We could have just done follow up blood tests every 3 months instead. The doctor said it was an option, but I thought and he recommended that we go through with the biopsy to be sure. Lovebug will have to get re-tested in 6 months and we "may" have to go through all this over again. But next time I will look at things a lot differently. I have an number in my head that if her antibodies aren't over that number, we aren't going to do another biopsy. (unless of course she is having symptoms) I just can't go through all this stress over and over again just to have it come back negative.  I don't want to put Lovebug through this over and over again. 

At least now the stress of the past 4 months can start loosing it's grip on me and I can concentrate on other things! 

In case you were wondering...

Lovebug's biopsy went well and we are still waiting for the results.  It's hard. Really hard.  Part of me wants the results now and the other part says, not so fast...she may have some more time to eat what she wants before having to go gluten free if the biopsy comes back positive.  

So, we sit here and wait.  I haven't blogged as much lately because this is all that is on my mind and I just can't seem to think about much else.  Seems that on top of that there are many other things going on but they are on the back burner (so to speak) until we have our answer about the Celiac's disease.  I promise I will share with all of you as soon as I know.  ps.  I so have some exciting blog posts coming up! :)

One Blurry Year Coming to an End!

One word to sum up 2011.  Blurry.

This past year pretty much seems like a big blur.  It started out pretty good.  I started my Thirty-One business and it has thrived and grown more then I could have imagined this past year.

We celebrated Lovebug's 5th birthday and her 2nd Diaversary.

Then, the unexpected happened.  One of my worst nightmares came true when Princess was diagnosed with Type 1 Diabetes in April.  The SAME month that Lovebug was diagnosed.  Just 10 days apart.  I remember wondering if this was really happening or if I was dreaming.  It was a little like being hit Mac truck a thousand times over. It was horrible.  (that is the understatement of the year right there!)  It took my breath away.  It made me rethink EVERYTHING.  It was literally all I could do to stay sane.  I really thought that I was going to loose my mind.

My D-mama's were a huge help. Even texting me when we were at the hospital to check up on me.  We were showered with meals,cards, gifts for the girls, and lots of well wishes.  We received many hugs and lots of support from friends, family and our church.

The rest of the year is pretty much a blur.  There were some really happy times in July when I got to meet up with my fellow D-Moms Misty and Hallie.  I also got to meet another D-mom Erin, who also got me hooked on Thirty-One!

Of course, I should know by now that when ever things start going smoothly over here something is about to hit the fan.  And it the fan it did.

In October we took Lovebug for her yearly diabetes blood draw and her Celiac Disease panel came back positive.  NOT something I was expecting. It hit me totally out of the blue...kind like Princess's diagnosis.  We don't have the "official" diagnosis yet but her biopsy is next week so these months of waiting will finally be over.  I'm not sure how I will feel if it comes back positive.  I have tried to prepare myself if it does, I don't think it will make it much easier if it does.  Maybe having months to think about it made it worse?  I don't know.  All I know is what my gut is telling me, and I am hoping that my gut is wrong this one time.

Needless to say starting out 2012 with a biopsy and possible Celiac diagnosis isn't the way I would have imagined we would be ringing in the new year but maybe I will be pleasantly surprised.

No Cords Attached

I guess that it was bound to happen sometime.  The sounds and alarms that you DON'T want your kids insulin pump to make...meaning it's time for a new pump. Of all days for the her pump to "die", it died on a Holiday.  A day our endo office is closed and a day when there is no shipping.  Fun stuff I tell you!  (sarcasm intended)  Add to that the fact that Lovebug HATES shots and you have a perfect storm.

So two days on shots it is.  It's going better then I thought it would.  Lovebug is doing better with it then I thought she would.  Miracle of miracles there!  Only one problem.  I think that she likes being "free" from her pump.

As Lovebug was getting ready for bed last night she realized that she didn't have to wear a pump shirt or a pump pouch to bed.  She exclaimed with A LOT of excitement that she didn't have to wear either!  She was downright giggly about it! You could see it in her eyes, the relief and the excitement.  The freedom of being "normal".  Of not being tied to a pump.  It broke. my. heart.

Lovebug never complains about having a pump, never complains about the pump pouches or the pump shirts that she has to wear all the time.  She always seems happy, content and easy going about it.  But when I saw her get so excited about the freedom of it, I realized how much it does "bother" her.  Talk about tearing this mama's heart in two.

I don't want her to have to wear a pump, but I know it's better for her.  But even I have to admit that seeing her free from "the cord"  was nice.  Really nice.  Almost made me wonder if we should go back to shots for a while, but I know she prefers the pump. Despite being attached to it all the time.  It's times like this I wonder if  we made the right choice of pumps for her. I wish that we could get an Omnipod and try it out...but it doesn't work that way.  I can't get a "new" pump quite yet and don't have the money to pay for an upgrade only to find out she doesn't like it or it doesn't work for us.  And it's not that we don't like the pump we have, we love it. So why change a good thing.  Not to mention we have had enough change around here this past year!

It's so hard to see her have to deal with all this.  I long for a day when she no longer has to be attached to an insulin pump or have to get numerous shots a day.  Why oh why can't that day be sooner then later?

Putting on my Happy Face

I was folding clothes tonight and the thought crossed my mind that I was folding some of these same clothes just 2 years ago, but for a the other d-kid.  Not in a million years did I ever think I would be saying that....

It has been 8 very long months.  Most of them pretty much a blur.  I put on a happy face most of the time but inside it just hurts.  Hard to tell someone when they walk to up to you and ask how you are doing that you are doing horrible and just want to go sit in the corner and cry.  So, instead of weighing every person who asks me how I'm doing with that heavy burden of my reality, I just tell them things are going good.  We are getting by.

Honestly that is just it. We are getting by. We aren't doing good, we aren't doing bad, we are just getting by. I am doing what I have to do and that is about it.  Sometimes I feel like I am just going through the motions of life but like I say, you do what you have to do, right? Even with Lovebug's blood sugar numbers  ALL over the place and Princess's always hovering in the 200's.  I struggle with burning myself out. Yet, I can't burnout.  Their life depends on it.

Add to that the stress of my hubby moving from 1st to 2nd shift, going to the doctor to find out I just moved into the overweight category and the fact we are looking at yet another diagnosis. Yep, burnout....I am trying to avoid you.  I don't know if you caught the part where I said "another diagnosis".  Yes, you did read that correctly.  Another diagnosis.  No, not of  Type 1 though.  (thank GOD it's not that)

We go a call from the endo's office back in October that Lovebug's yearly blood work came back testing positive for Celiac's Disease. (for those of you who don't know what Celiac's Disease is HERE is a little synopsis)  I suppose I wasn't totally surprised, but at the same time I was shocked.  When I had taken her in the week before to get her blood drawn at the lab I just had this feeling that something was wasn't right  I never would have thought my "intuition" would be right.  It has always been a big fear that one of the girls would end up with Celiac's Disease.  Not a fear I ever really thought I would be looking at.  Then again I never thought we would deal with a second diagnosis of Type 1 either.  I must be naive or something...

I didn't think it would be Celiac that came back positive.  All I knew was something was off.  Ironic thing is she has very few symptoms of Celiac.  Up until a couple weeks ago the only symptoms were bloating, constipation, crazy low blood sugars (followed by rebound high blood sugars) and leg cramps.  All those I would have normally contributed to other things, never would have linked them to Celiac.  The past couple weeks Lovebug has been complaining of  stomach aches a lot.  Especially right after eating.

So here we are, waiting.  I have never been so tired of waiting.  Trying to keep the thoughts of this possible diagnosis (and all that comes with it) out of my mind so I can enjoy the Holiday's.  Which I am enjoying, it's just always right there, like a little tap on my shoulder a thousand times a day forcing me to push it to the back of my mind over and over again.  Hopefully we will have some answers soon as Lovebug will have a biopsy in a couple weeks to confirm rather or not if  she actually has Celiac.  (the biopsy of the small intestine is the only way to confirm Celiac.) It's only another month or so, I have waited this long....right?

Intuition

The past month has been a bit of a long one.  We have had numerous problems with Lovebug's blood sugar numbers.  More lows then I care to be handling, followed my more high's.  It's really hard to watch her go through that. She is exhausted when she gets home from school and usually falls asleep before dinner.  I have tried and tried to get her numbers  back in range, but to no avail.

We have changed basal rates, decreased and increased. We have raised and lowered carb ratio's. Given temp basal's and just plain not bolused for food at all.   Lately, we have been using the Combo Bolus.  We do a combo bolus if she 150 or below and if she is above 150 we just do a normal bolus.

Thankfully this seems to be working, so far anyway.  Every time I think we have figured it out, it stops working.  We think we know what MIGHT be causing the crazy numbers but won't have an answer for a while on that. Needless to say over Thanksgiving break we only had 2 lows the whole weekend. (rather then numerous ones in a day)  I am starting be be a little optimistic that maybe we have turned a corner.

When I dropped Lovebug off at school on Monday it was pretty normal. Except that she came in a little late because she had a doctors appointment.  We checked in at the office and talked with our wonderful secretary whom we will call Mrs R.  Mrs R asked how Lovebug's numbers had been over the weekend and it was nice to say they had been pretty good. A little high but at least we weren't dealing with all the lows.  After our brief conversation I walked her down to her classroom where all the kids saw her and came running to the door to greet Lovebug. (just warms my heart to see how excited they were to see her!)  My thought that we would quietly sneak into class and not interrupt was foiled.  Lovebug's teacher wasn't concerned and Lovebug walked over and gave her a big hug.  I walked away with a full hear knowing my little girl is in great hands.

Around lunch time I got the email from Mrs R.  Lovebug's blood sugar was 175.  There a couple exclamation points at the end of "Was send to lunch!!"  I could tell Mrs R was relieved Lovebug wasn't low, again.  About an hour later I picked up my cell phone and realized I had a missed call. It was Mrs R. I forgot to turn my phone ringer back on after we had left the doctors office.

I listed to the voice mail and called her back.  She told me she was happy Lovebug was 175 before lunch. She dosed her but said she just "had a feeling" and told Lovebug to come back after recess so she could re-test her.  When Lovebug came back to get retested, she was 62 and double arrows down on Dexie!!  Holy intuition!! I was SO thankful!

Now I know I have talked about Lovebug's school before but I just have to say it again. They are WONDERFUL.  They continually go above and beyond and I am so grateful.  You can tell that they genuinely care about Lovebug and her diabetes. I mean really, how many secretaries would tell a kid to come back and get tested later because THEY had a feeling about her blood sugar? I thought my hubby and I were they only ones who got those gut feelings!  For those of you who don't have a child with Type 1 it takes a bit to get a "feeling" when they are low or when something is off. You really have to be "in tune" with them and know them well.  That right there is just amazing to me. They have taken the time to really get to know Lovebug and watch for those signals. Then, just every once a while, follow a intuition.

Won't You Help?

A while back my husband was trying to think of something we could do to help spread diabetes awareness and education. Specifically for those living in other countries less fortunate then ours.  Talking about it made me think of my good friend Wendy who is very passionate about  Life for a Child.

I had kinda put the idea to the side for a while.  You know how life can get in the way.  Well, Thursday night my hubby and I were listening to DSMA Live and heard Wendy talk about Life for a Child (among other things!).  Neither my husband or I knew that Life for Child was tied to the Big Blue Test.

Knowing that I HAD to share this with all of you.

The Big Blue Test which is sponsored by the Diabetes Hands Foundation is donating money to Life for a Child just for doing the Big Blue Test!  That means that YOU can help us help a child in need.

Did you know that in many developing countries, children with diabetes suffer because insulin and other diabetes supplies are not affordable or sometimes not even available?

Life for a Child works with diabetes centers to provide clinical care and diabetes education that the children in their care need to stay alive.  The program works to provide: sufficient insulin and syringes, blood glucose monitoring facilities, clinical care, A1c testing, and diabetes education as well as a few other things. They aim to raise awareness of the plight of children with diabetes and encourages governments to establish appropriate care to safe guard the future of the children with diabetes.

Now YOUR part!

1. Participate in the Big Blue Test! - go to bigbluetest.org to find out how!  It's SO easy! and EACH test = a life saving donation to Life for Child.

2. Go my good friend Wendy's blog Candy Hearts and Click on the Life for a Child tab at the top of the page. Find something you like and purchase for a yourself or someone you love.  By purchasing from those businesses they will donate a portion of  the sales of that product to Life for A Child.

3. You can also donate online directly to Life for a Child at www.lifeforachild.org or help by purchasing World Diabetes Day merchandise from www.worlddiabetesday.org

Normally I would say to do this for Lovebug and Princess but in this case do it for a child less fortunate so they can get the life saving insulin that they need to live. So no child has to die because they can't access insulin.

Bedtime Blues

Last night we had a weak signal and Lost sensor error with Princess's CGM.  It isn't uncommon for us to receive this alarm when it's time to change the sensor.  It had been six days and I knew we needed to change it.  

The thing was that Princess was just lying on the couch and didn't look good.  My first thought went to diabetes. (of course)  Is she low?  Is she getting sick?  Is her blood sugar really high?  I got her meter out to check her blood sugar and she was 132. Not bad but with out the sensor I didn't know if she looked that way because her blood sugar was dropping fast or if she was just tired.  She wasn't telling me anything either.  That didn't make me feel any better that she wouldn't tell me.  

I thought about trying to start the CGM back up and see if we could get another night from it so I didn't have to change it until the morning.  I didn't want to but I tried, with no success.  I decided that it would be better if I just put a new sensor in. Better to go just a couple hours without the CGM rather then the entire night, especially considering how she was acting. 

While we were having "issues" with Princess's CGM Lovebug was low.  Dexie was telling me she was 70 with arrow straight down.  Normally I wouldn't worry about this, we would treat it and wait for it to go back up.  Considering it was right before bed, I was a little worried. (and wondering if this was what the whole night was going to look like)  Just about 15 minutes later when I was getting ready to check her again, Dexie beeped.  Dexie was saying she was 58 with arrow straight down still.  What in the world?  We re-checked her and she was 102.  She had gone up from the 70 she was before but Dexie just hadn't "caught" up yet.  We calibrated Dexie and sent Lovebug up to bed, knowing we would be up to check on her in a few when Princess was ready for bed.  

After we got the girls tucked into bed, I almost got teary eyed.  I admit, I was worried. Worried sick for both of them. I had made my hubby check Lovebug a few more times then I normally would because of it too.  Normally I am not so "paranoid" and don't worry quite so much, but my thoughts went back to what I had seen earlier that morning. Another parent living one of my worst nightmares.  Another young life lost to Diabetes.  

Daniella Meads-Barlow is her name.  She had Type 1 Diabetes and passed away in her sleep the morning of November 8th.  This is the reality of the disease my girls (heck, our whole family) live with.  I put my girls to bed each night knowing that there is a chance they may not wake up in the morning. 

Theses kids don't die because their parents neglected their diabetes or because they had "bad control".  It is just Type 1.  It's what it does. It is unpredictable.  It changes from one moment to the next, from one day to the next.  The JDRF just released a startling statistic. 1 in 20 (kids and adults) will die from low blood sugar. This is what happened to Daniella. 

This makes me cry. It makes it hard for me to sleep at night. It makes me more determined then ever to fight for a cure and to spread awareness of this disease.  But last night, it just made me want to hug my girls and hold them even closer.  

Yes, you could.

"I could NEVER do that!"

"I really don't know how you do it."

Those are phrases I commonly hear from people after learning that I have children with Type 1 Diabetes.

I said the same thing once.  Before I had children with Type 1.  Before Lovebug was diagnosed.  Before Princess was diagnosed.

Truth is you could, if you had to.  When your child's life is at stake, you will do anything for them.  It is amazing how "strong" you become when you see your child face something like this. You become a "super hero" of sorts for them.  You help the fight the battle against the "bad guys".

With this disease it isn't a fight that you can "win" and then move on to the next "battle". Cancer, however horrible, is a battle that is won or lost. Usually in a matter of  months or a couple years. Yes, diabetes ultimately is either won or loss, but really it is a battle we wage every day. A moment by moment fight that can change in the blink of an eye.  Believe me, I know.  I have lived it.

For 5 days I saw Lovebug get sick and more sick.  She looked horrible.  I took her to the doctor and in an instant my world was turned upside down when the doctor said....you need to go to the hospital now.  Lovebug has Type1 diabetes and needs to be admitted to the hospital right away.  My knees buckled.  I could barely walk myself out of the office.  I knew it was bad, I just didn't realize how bad until we got to the hospital.

When  our CDE sat us down and started telling me what we were going to have to do for Lovebug each and every day. I remember my head spinning.  It still seems overwhelming when I think back.  I really had no idea what I was really in for, what Lovebug was in for, what our whole family was in for.

Fast forward 2 years later. Over the past year I had met other moms who have children with Type 1 Diabetes. I hear their stories. Some of them have more then one child with Type 1.  I thought the same thing. I could NEVER do that. I couldn't handle it.

Then one Sunday, after a night of tummy aches and just not feeling right, my hubby and I put two and two together.  We didn't believe it at first but just a couple minutes later we knew. The meter counted down 5,4,3,2,1....509.  That quickly our lives were turned upside down, yet again.  We had another child with Type 1 diabetes.  We were devastated. (still are)  But you know what? What we thought was impossible, taking care of  two children with Type 1 diabetes, isn't so impossible.

Is it easy? To be frank, HELL NO.  It is the hardest thing I have EVER had to do. Yet I do it EVERY. SINGLE. DAY.  24/7, 365 days a year with absolutely NO BREAK.  I live and breath this disease.  It is all consuming.  It isn't our life but it is a HUGE part of it.

What I used to think was impossible, really is possible. It is funny how in a moment of weakness you can become so strong.

Yes, you say that you couldn't do this.  But you are wrong. If you had to, you could! I just pray that you never have to.

SMACK!

You know, some days it just feels like Diabetes is smacking you in the face. Over and over again.  Today I got a call from the secretary at Lovebug's school. She is the one, along with her teacher, that takes care of the majority of her diabetes care while she is there.  And I have to add that they do a SPECTACULAR job!

Lovebug has been running high at nigh, again.  No matter what I do her numbers are either too low or too high so I chose the lesser of two evils (in my opinion) and have been letting her stay a little on the high side.  Needless to say she woke up at 194 this morning. That isn't horrible but not good either.  Not when we were waking up with nice numbers like 109.

I bolused her for breakfast and "forgot" to do a combo bolus like we had been doing so she wouldn't go low after she eats (this has been an ongoing thing the past 6 weeks. She will go low and then never spike from her meal.  Then 2 to 3 hours later she is in the 3 or 4 hundreds, once the insulin is all out of her system) So when the secretary called at lunch today, I almost wasn't surprised to hear she was 44.  I didn't think she would be THAT low but with here there is no normal right now.

I, of course, over did it in correcting her.  Normally I would give her 2 maybe 3 glucose tabs to get her back up BUT because she was at school I told the secretary to give her 4.  Sure enough 15 minutes later she calls me back and says that Lovebug is 124 but she was acting a little lethargic so the teacher sent her back down to get checked.  Arrow is still going down on Dexie.  So I told her to still wait until after she eats to bolus her for lunch, just in case is perked up but then is going to go right back down. she did spike a bit and then came right back down. But here is a picture of Dexie.  See what I mean!  And this was actually a "good" day.

This is a daily struggle we have been having and I am really tired of it.  I want Lovebug's numbers to be back to "normal" again.  I hate that her Dexie at the end of the day looks more like mountain peaks and valleys then that nice rather straight line like it should be.  I really hate what diabetes does to her little body.  And to Princess's little body.  Her numbers have been a little better but 8 months into this we are STILL fighting highs, A LOT.

The girls have their 3 month endo check up on Monday and I am DREADING it.  I know just by looking at their numbers and averages on their meters that both girls A1C's will be up.  It's so hard because I know that we can do better but I am just stuggling with keeping them were they should be.

I especially worry about Lovebug and the effects that this has on her school work.  I know she is only in Kindergarten but I want her to be good for optimal learning. And for mine and the teachers sanity!  When Lovebug has crazy blood sugar swings, you have to watch out!  She gets rather moody.  And lately she has been coming home at the end of the day and crashing.  I really hate seeing her like that.

Needless to say diabetes has been "smacking" me in the face lately, and I am TIRED of it!!

This is my Life

It's been almost 8 months since diabetes turned our world upside down, again.  I used to think that the first six months following Lovebug's diagnosis were the hardest of my life but I was wrong. The past six months have been the hardest of my life.(make that 8 months) I have seriously been living in a fog.  It's hard to explain unless you have been there, but I'll see if I can explain a little bit of my life to you.

Diabetes changed EVERYTHING.  I mean EVERYTHING. We can't go anywhere without taking our bag of supplies with us.  Without them it could be life or death.  Nothing is easy for us now. I think about diabetes ALL THE TIME. I always wonder what the girls bg's are. If they are eating something, what are they eating and how many carbohydrates are in it. I wonder what is going to happen next. We can't just send the girls to church, school or even play dates without A LOT of preparation. The Holidays are right around the corner and they make my head spin.

I am always tired.  I  get up each and every night to check their blood sugar. I  check them at 10:30 pm and 2:30 am.  I am up more often if their blood sugars are too high or too low. Needless to say I haven't slept much the past couple years. Think of it as having a newborn that never grows up. Too high and the girls can wake up with ketones and vomiting.  Too low and my girls can die. On top of that you have to worry every night when you put them to bed and hope they wake in the morning.  Kinda takes your breath away.

My head spins when I think about everything I have to do to keep them healthy.  I am a germ aphobe  now, and for good reason.  When it comes to illnesses with the girls, there isn't a small one.  Any of them, even a cold can put them into the hospital. We are constantly counting carbs for everything that they put into their mouths.  They can't just pick up a snack and eat it like most kids.  I have to poke their finger first and then give them insulin to cover the carbs in whatever they are eating.   It's the difference between them feeling good and feeling like crap.

 Site changes every 3 days, provided a site doesn't fall out or go bad earlier then that.  Think of it as getting poked with a large, long needle every 3 days.  It's not pleasant. It doesn't matter what is going on, those sites must be changed. Then there is the smell of insulin on your hands afterwards.  Believe me, insulin smells horrible! Oh yeah, and I almost forgot sensor changes every other site change and on every 7th day. Try keeping track of that! It's not easy.


We have to constantly worry about low blood sugars. Especially with Lovebug.  The CGM's help a lot but they aren't perfect.  Low blood sugars can lead to seizures and death pretty quickly. It is imperative that I am vigilant at all times about what the girls are doing and how they are acting.  Everything effects their blood sugar; excitement, stress, growth spurts; virtually anything you can think of and it will effect their blood sugar.  It can seriously be a headache everyday trying to figure out this "guessing game".  That's exactly what it is, a guessing game, because Type 1 isn't the same from day to day. It's very unpredictable.  It doesn't make sense to me and I can guarantee it's not going to make sense to you.  Yet another reason I have to be constantly on my toes. (and quite often would like to pull my hair out!)

Speaking of activities, try explaining to you child that they can't go to a friends house because their mom isn't comfortable with your "condition"  She is scared and doesn't want the responsibility.  It's hard to tell my girls they can't just go to a play date at a friends house.  Usually I suggest the friend come over here but that's not as much fun.  Lovebug, especially, yearns to be more independent but I struggle with letting her sooner then she needs to be.  She doesn't realize, yet, that she will have to live with Type 1 the rest of her life.

Then there is the toll it takes on the marriage.  A lot of marriages suffer when there is a diagnosis in the family and some don't make it.  Fortunately for us, diabetes has brought my husband and I closer together then I could have imagined. Let me tell you, it has not been easy.  My hubby and I have non-existent date nights.  They just do not happen.  We get very little time together as it is and at the end of the day we are usually pretty exhausted. You know nights away like many of you with "normal" kids get. They don't happen either. Very few people are willing to take 2 children with diabetes and get up in the middle of the night and check their blood sugar.  Those that I have that are willing, we always feel guilty asking.


I don't tell you this so you can feel sorry for us.  I don't want that.  But I do want you to know that having children with Type 1 Diabetes IS a BIG deal.  It's not a walk in the park.  They just don't get insulin and are better. (if only it were that simple).  I just want you to care.  Care to learn about the signs and symptoms. Care enough to help us bring awareness. Care enough to help us fight for a cure.