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.  :) 

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?

September 10

Many years ago September 10th didn't mean much to me.  Now it means a lot, in more way the one.

Ten years ago, on September 10th,  I went to a county fair to hear  Michael W. Smith in concert. (a Christian artist for those of you whom haven't heard of him)  It was awesome praise and worship music.  Perfect timing considering what would come to pass less then 12 hours later.  That night and the next day are days that I will never forget. They will be etched in my mind forever.

Fast forward 8 years and September 10th meant something else.  Something bittersweet.  It is Lovebug's pump start day.  It was in 2009 and just 5 short months after her diagnosis.  The very next week we walked in our 1st JDRF Walk to Cure Diabetes.  Needless to say, September 2009 was a really hard month for me.

Fast forward again another couple years to this year and we have yet another "milestone".  It was 5 months ago on the 10th the Princess was diagnosed.  And here we are again, exactly one week away from walking in our 3rd JDRF Walk to Cure Diabetes. But this year we aren't just walking for Lovebug.  We are walking for Princess too.

Add to the fact that Lovebug started Kindergarten last week and all the emotions that go along with sending a child with diabetes to school and I guess you could say I am a bit of an emotional roller coaster.  My moods swing all day long and its hard not just on me but on the whole family.  I try to stuff it in and not show it in front of the kids (and sometimes my hubby) but it doesn't always work because when Diabetes isn't cooperating and I can get easily frustrated.

So I take these couple weeks day to day and try to come to grips with Princess diagnosis as well as everything else life throws at me.  It's hard but we are surviving.  I love the quote my good friend Hallie had on her blog a few days back.

"It never gets easier. You just get better."

That could not be more true when it comes to diabetes....I know it won't every get easier but I am ready to get better!

Diving In

Nablopomo ~ Day 12

Today's prompt asked us if we like to dive right into things or do we like to get acclimated first?

I am a diver.  When it comes to learning something new or trying something new I tend to dive right in.
That's exactly what happened when Lovebug was diagnosed with Type 1.  I dove right into learning everything I could to take care of her the best that I could.

For me that meant taking all the training classes as soon as we could get into them. The more I knew about her diabetes care the more confident I was taking care of her.  We were literally at the endo' office every couple weeks that first summer.  

While I was learning about MDI, I started researching pumps and insulin pump therapy.  I quickly learned that would be SO much better for Lovebug and our family as a whole.  While you can be flexible on MDI, it wasn't flexible enough for us. I still felt tied down to a meal and snack schedule because that was better on Lovebug's blood sugar numbers. If I took her off of that schedule it would reek havoc on her blood sugar numbers.

Needless to say I learned everything I could about insulin pumps and which one might be a good fit for Lovebug.  I even took some of the online training "classes" just to get an idea of what I was doing before we even got the okay from our endo.  Armed with all the information in my hands I asked the endo about it and he agreed and we could put her on a pump right away.

So, about about 5 months after Lovebug was diagnosed, I found I didn't have much more to learn.  I mean I did but most of what I could learn had to come from actual experience or trial and error. You have to learn how each child's body reacts to everything from stress to exercise to swimming. It was then that the grieving process started for me and boy did the tears flow.

It has been two years since then and I am still grieving, just in a different stage then I was back then.  Of course I started the process all over again when Princess was diagnosed. I think that was part of what made her diagnosis that much harder for me.  I couldn't learn with her, I couldn't use that to cope. I had to immediately start with the grieving process and I just shut down for a few weeks.  Really didn't talk to anyone I didn't have to talk to.

Yesterday was 3 months since Princess diagnosis.  I can't say that I have totally let myself grieve over her diagnosis yet.  Life seems to have gotten in the way of this one. I have had moments where I break down and feel like I just can't take it anymore. But the girls and my husband need me and grieving sometimes feels like a hindsight.  I know that I need to let myself do it but sometimes, it's just hard to just slow down and think about it.  I just do it because I have to. It is what it is and I can't change it.  Maybe some part of me is just mad about it.  I have always been one to push my feelings aside and try to ignore them. Maybe that's what I am doing now?

Summertime

I't's been a couple weeks since I  blogged.  Summer busyness is here in all it's glory, right along with all the craziness the diabetes x2 brings to our life.

I have to admit that I haven't been in the best of moods lately.  Down in the dumps would be a pretty good description.  I am basically just doing what I need to to get by.  I feel like the fog from Princess diagnosis is starting to clear a little bit, some days.

I have been tweaking basal rates for both girls lately, which is driving me crazy. I wish I could just work on one at a time but for some reason they need to be tweaked at the same time.  They only way I can keep them straight is to download their pumps every couple days so I can look at everything on paper. And then pray that I remember what might have caused a particular high or low blood sugar.  Sometimes I am pretty sure my brain was not meant to hold all this information!

We have had some hiccups with Princess pump. Mostly with the sensors for the CGM. They have been a little wonkey lately. (then again Dexie hasn't been on her best behavior either!) I think that we just got a bad box of them since the new box I opened has been better.  But then last night it keep giving me the "Low Predicted" alarm when she wasn't low and no arrows going down.  Kinda frustrating in the middle of the night!  I seriously was up every hour last night between Lovebug's Dexie with ??? on her and Lovebug with a bg of 73 at 12am (an hour after I went to bed) It took her and hour and a half to get back up to 130 and I turned her basal off for a couple hours.  It was a little crazy. I am already compiling my list of pro's and con's between the girl's different pumps.  I am leaning towards liking one a bit better then the other, but I will save all of that for another post.  :)

Then there is just getting used to summer "hours"  I find some of my basal tweaks are just because the girls are going to bed later and getting up later so I have to push basal rates back by an hour or two.  And to think I will have to change it all back come September!  Gives the lazy days of summer a whole new meaning....

I promise I will try to be around more.  I love blogging. It's therapeutic for me.  I just need to force myself to find time to sit down and actually blog.  Now a days my free time is a bit limited and I usually end up doing stuff that needs to be done rather then stuff for fun.  Blogging really is much more fun then doing housework!

A Tough Conversation

I never thought there would be a time that I would hate diabetes more then I did at this moment....

Lovebug was getting herself ready for bed. She had just put on her pump shirt and asked me for some help because she couldn't get her site hooked back in.  I hooked it back in and then this conversation followed:

Lovebug: "Mommy, will I always have to wear a pump shirt to bed?"


Me: "No, you could always wear a pump pouch like Princess does."


Lovebug: "Maybe I will try a pouch again sometime. Will I always need my insulin pump though?"


Me: "Yeah, kiddo, you will. Unless when you grow up you want to go back to shots then that will be your decision because you will be a grown up."


Lovebug: "I'm STILL going to have diabetes when I grow up? It's not going to go away?" (I wish you could have hear the really sad voice she had when she said this.)


Me: (taking deep breath) "Yes, sweetheart, you will and no, it won't go away."  (gulp, and try to hold back tears)


Lovebug: (with a very sad look on her face) "I'm going to have diabetes for the rest of my life, aren't I?"  


Me: (taking another deep breath and reminding myself to breathe) "Yes, unless they find a cure kiddo." 


Lovebug: "That stinks!" (she gives me one of her great big bear hugs and tears stream down my face)


I could not have felt more sick at that moment.  To look my daughter in the eye and tell her that yes, you will have diabetes for the rest of your life.(unless we find a cure! and I did explain that to her) Only to have her look back and me, knowing she understood.  That was one of the toughest moments of my LIFE.

Moving Forward

It has been a month since Princess was diagnosed.  It has been a HUGE change in our lives.  I never would have thought that I would be taking care of TWO children with Type 1 diabetes.  I thought having one was hard!  Nope, two is much harder.

I feel like I have a handle on the diabetes though. I know what I am doing this time around, and that helps.  It annoys the heck out of me that I can't "tweek" anything because Princess is still on MDI. (Mulitple Daily Injections) The smallest dose of insulin I can give her is .5 units. I need smaller doses!  So, most of the time Princess has higher blood sugar numbers.  Her I:C ratio is 1:40 right now (which I think we need to change but I'm not going to mess with it until we have the insulin pump). So in order to dose her for food she has to have at least 20 carbs, even though if I give her 10 carbs it raises her blood sugar.  Needless to say I'm sure her A1C will be nice and high at her 1st follow up appointment in June.

For the most part we are muttering through getting used to all this. It has its good and bad days, as you would expect.  Just ours seem to be doubled.  Or if one kiddo is having a good day the other one isn't.  It is a never ending battle, times two!

On top of all of this I had a hard decision to make.  We had to decide about which insulin pump was right for Princess.  It was a tough one!  I'm sure most would assume that we would just put Princess on the same insulin pump the Lovebug is on, but that isn't the case.  While we LOVE the Animas Ping I simply do not like that Lovebug has to carry her CGM (Dexie) around with her too.  It drives me crazy and was a major factor in hesitating to put Lovebug on a CGM.  Of course once we did a trial with it, we immediately saw the benefits and were hooked.  If it wasn't for the wonderful benefits the CGM allows us, Lovebug simply would not have one.

So,  we took a serious look at the Medtronic Revel.  It has a CGM integrated into the pump.  I was hesitant at first but the more I learned about the pump and after talked to friends, I was convienced this was the right pump for Princess.

I did have my doubts about the CGM and senors that accompany the Revel.  The sensor/transmitter is much larger and I was afraid it would be a bit much on Princess's small frame.  I called my endo office and decided to do a trial with the Guardian System (as Medtronic calls it)  I have been nothing but impressed!  Which takes a lot!  Especially because I am a HUGE DexCom fan. There are features on the Guardian which I really like, and a few that I don't. Probably more because I am used to the DexCom.

One particular function that took some getting used to was the alarms.  You can set the high and low alarms on the Guardian (just like DexCom) but you can't shut one or the other off like you can on the DexCom. They are simply either on or off.  I do like the predictive alarms, especially for the lows.  We only had the predictive  low happen twice but both times Princess was still in the 120's when the CGM alarmed.  Therefore she never actually went low, like she might have had we just had the alarm telling us that she is already low.

I find the information gleemed from the Guardian is much more useful then the DexCom's graphs when you download the information from the DexCom.  The Guardian has it marked on the graph when you bolus.  The screen is also shaded from 6pm to 6am so you can immediately tell where the "over night" numbers were at.

We really had a great experience with it and we are very excited to be getting our own!  Our endo already ordered the Revel pump and CGM for Princess and it has already arrived!  We will be doing our pump training this coming week as well as starting our saline trial so we can get used to the new pump. Princess is very excited (as well as Mom and Dad!!) to be done with shots!  She keeps asking me when she will be done with shots and now we are counting down the days!  Then the week after we will be live with insulin!  It is all a little bittersweet for us but we are still happy to be moving to this "next stage". It will be a good one for the whole family.

Bitter Sweet Days

I feel like I have been neglecting my blog!  I wish I wasn't. I have so much I want to share but honestly, I just haven't had the time to sit down and write.  It is therapeutic though and I need to make time to sit down at the computer a little more often.

The last couple weeks seem to have gone by fast, but at the same time have seemed really long.  I still sometimes feel like I am in a dream...

Today we made a trip to the endo's office to start a trial run with the Medtronic CGM.  As I was sitting there getting everything "hooked up".  It was a little overwhelming.  I am relieved that we will have a CGM for a week. (maybe I will get a little more sleep now) and anxious to get the week over with so I know whether it is going to be a good fit for Princess or not. I am pretty sure it will be though.

While I am very grateful we are moving forward with the insulin pump and CGM already, it is a little bittersweet for me.  Princess has been fighting the shots a bit more lately, so the pump really can't come soon enough. Emotionally, I am not ready for this. It seems too soon. Almost like I am excepting all of it sooner then I did with Lovebug.  I know that isn't the case, I just know what I am doing this time around.  I know the pump is easier and better but I just can't get my brain wrapped around all of this yet.  My heart turns to mush just thinking about it.

I want to be happy, things are moving along like I wanted. I wanted to get her on a pump as soon as possible I prayed things would work out and they are.  I should be elated for the answer to pray.  I am, but at the same time, I'm not.

I didn't ask for this. I don't want another child with type 1, yet I can't change it. Complaining about it won't help.  Sometimes screaming or crying into a pillow does help, but only for a while.  I know this is my burden to carry I have to stop myself from asking why. I would drive myself insane if I did.  I am trying to except what has been given to me but I still want our old "normal" back. I didn't know that I could hurt this much.  Diabetes just sucks.

Bath Time

As I was getting  love bug out of the tub last night I was drying her off and realized I didn't have to "be careful" around any of her sites.  She was unhooked from Dexie and from her pump. Sites had been taken out to be changed and I decided to let her be "free" for a while. 

Then it hit me, she was the "old"  love bug again.  The one before diabetes.  I had a quick flash back to the way things used to be, simple and carefree.

The days when she didn't have to wear a pump pouch around her waist or have a pump site on her cute little bottom. When she wasn't hooked up to a machine to keep her alive. The days when I didn't worry about her so much.  Back when I didn't have to poke those cute little fingers 10 times a day. When I didn't have to watch everything she put into her little mouth.  When she didn't have Dexie on her arm all the time. Back when I only took her to the doctor for her well-child check-ups. When I didn't have to get up numerous times a night checking her bg or waking up with that sudden feeling that something is wrong. When I didn't worry every morning that she might not wake up because of a low blood sugar in the middle of the night. The days when I didn't have to sit and figure out if her carb ratio's are right or if I need to lower or raise her basal rate.  When I didn't wonder what caused that high or low blood sugar, the one that came out of the blue, then wonder if she is getting sick.  The days when every time she did get sick, I didn't have to wonder if it was going to end up with a hospital visit. 

Those sweet days when diabetes didn't stop us from going places and doing things.  When diabetes didn't interrupt our lives everyday and force us to change our plans.  Back when I didn't have to carry her "diabetes bag" with her supplies in it, everywhere we go, just in case.  When my hubby and I could go out and leave the kids with no worries of phone calls interrupting our evening. 

I held back tears. For the first time in over a year, I let myself remember what life was like before.  Before diabetes. It was so nice to hug her and not feel the pump pouch or Dexie on her arm.  For a moment, she was my diabetes free love bug.

Who knew bath time could bring on such emotions? 

A Day in the life of....Diabetes (featuring Love Bug)

Part of  Diabetes Blog Week!

Creeeeeek.  There's my wake up call, my noisy door. Mom's coming in to get my big sister up for school.  I have to get up with her because I hate missing out on anything.  I sit up looking very disheveled.  Mom calls me "crazy hair kiddo" when I wake up. I guess my hair must look pretty bad in the mornings.  I give her hugs and kisses then head downstairs for breakfast.  This morning mom has my favorite; pop tart and banana with glass of milk.  Mom gives my my favorite cup, the pink one.  Time to check my sugar. I'm 241 this morning and breakfast is 57 carbs this morning.  Mom says I'm a  little high.  I'm still learning what that means.

After breakfast Mom gets me into my normal routine.  I go to the bathroom, brush teeth, then get dressed.  Mom always has my clothes picked out for me. I tell her that I would like to wear my butterfly shirt, not my pink shirt. I like to get myself dressed, but I still need some help.  I like to try very hard not to ask Mommy for help, to the point of throwing a fit about it sometimes. I like to be independent!  Mom laughs at me struggling, being stubborn (just like Daddy, she says) not wanting to ask for help. I don't find it very amusing (that's a fancy word for funny. Did I mention that I LOVE Fancy Nancy!)

This morning I am going to bible study with Mommy.  I LOVE going to bible study.  Most of all I love playing in the Gym.  I love it that I get to play and have fun while Mommy learns about Jesus and how to be a better Mommy.  (at least that is what she tells me) My teachers, Miss Janet and Miss Veronica, are great.  They help me take care of my Diabetes too. They like to hear about how my sugar is.  They make sure I don't eat too much and watch out for low and high blood sugars. They also are really good at sneaking me my exercise snack before we go to the gym to play.

Mommy checks my sugar when we get there and lets Miss Janet know how I have been and if she needs to watch out for anything.  Mommy checks my sugar again when she picks me up.  I am a little high today. I was 241 when I got up and still 228 now.  Mommy gives me a dose of insulin with my meter and  sends me off.  This morning I had to tell Miss Janet that my tummy hurt.  I started screaming because it hurt so bad. I felt funny too. Miss Janet went and got Mommy.  Mommy checked my sugar and I was low, 56, I hear her say.  Mommy gives me some glucose tablets (watermelon ones are my favorite!) and a juice box. I felt much better after that.  I heard Mommy tell Miss Janet that lows scare her.  I don't like it when my Mommy is scared. 

Mommy picks me up and checks my sugar again, 181. That is right in range.  "Hooray!", says my Mommy.  "You are right on target".  Home again we go.  On Tuesday's we get a special treat for lunch, Lunchable's!
I'm so excited! Mom checks me again before I eat, I'm at 179.  My lunchable with milk is 35 carbs for lunch.

After lunch I lay down for nap time.  When I get up from nap I'm really whinny.  Mommy says I didn't take a long enough nap.  She checks my sugar and I am 281.  Mom sighs, a little high. I don't like it when she sighs. It makes me wonder if I did something wrong. I start to cry.  She sees how sad I am and tells me not to worry, it's not my fault.  I didn't do anything wrong.  Mommy is just upset with my diabetes.  I want fruit snack for a snack, but Mommy says no, my sugar is too high.  I throw a fit.  I want fruit snacks!!!  She makes up for it by giving me the next best thing, cucumber slices and a cheese stick.  The yellow cheese sticks (Colby jack my mom calls them) are my favorite.

It's a nice day out so Mom says we can go outside and play.  HOORAY!  I get my shoes on and head outside.  Today I want to play with sidewalk chalk.  I really like to draw.  I also get my bike out and ride bikes with my little sister until my big sister gets home from school.

At dinner time Mommy checks my sugar before I eat.   It is 278.  Mommy can't believe it's that high after running around outside. Dinner is 67 carbs, it's taco night!  The soft shells are my favorite but Mommy wishes I liked the hard ones, she says there are less carbs in those ones. 

After dinner I get my books out while Mommy cleans up the kitchen and helps big sister with her homework.  I love to "read:" books. Especially Fancy Nancy books!  I memorize them so I can read them to Mommy sometimes.  She really likes that and I like it too.

Tonight, I get to do something special. It's my turn to go for a walk with Daddy.  Mommy checks my sugar before I go, 221.  Not too bad, it is only an hour after dinner.  Off I go with my Daddy.  He takes me to the park by the river.  It is really close to our house and one of my favorite parks.  I like to ride my bike on the bike path and stand on the bridge and look for fish.

When we get back from our walk me and my sisters wrestle with my Daddy for a while.  At bedtime Mommy check my sugar, 301.  She give me a correction dose and tucks me and my sisters into bed.  I snuggle in for the night with my pink puppy and my bug bug blankie. 

At 11pm Mommy comes up to check my sugar.  It is higher, 392.  I don't even wake up, but Mommy says that I put my finger out for her in my sleep now.  I guess I am getting used to my Diabetes.  Mommy gets back up again at 2:30 am.  I am still high, but a little better at 298. Mommy tries to give me another correction dose but my insulin pump won't let her.  She doesn't want to wake me up to grab my pump out of my pouch so she lets me sleep.  She says that I get woke up enough at night lately that I don't need to get woke up anymore.

Mommy goes back to bed until her alarm goes off at 6am.  It's a short night for her and me. We are both really tired in the morning.  It is a new day though and maybe, just maybe, my sugar will cooperate today. (cooperate is a fancy word for being good).