If You Only Knew

This is a song/poem my husband wrote.  I love it wanted to share it with you. 

It's sunny, but it's rain'in

It's funny, but it's sad

It feels good, but it made me sick

I wanted to laugh, but I cried instead

Take your newspaper and read it

no one cares about it

I can't see anymore-- I can't scream loud enough-- now my chest hurts

maybe it's from the heart ache I feel, but how do I really care.

It's sunny, but it's rain'in

It's funny, but it's sad

It feels good, but it made me sick

I wanted to laugh, but I cried insteaddddd........

You wanted an answer, bu-----t

you complained about what I said!!

You don't have any class SO go away!

You don't have any gas to drive--so take a bus

Go far away so I don't see you anymore

It's sunny, but it's rain'in

It's funny, but it's sad

It feels good, but it made me sick

I wanted to laugh, but I cried instead

now the pain is here to stay

now did you hear about the pain

now the numbness has come

it seems to be my spurious friend

for now I'll smile fake as a clown

I'll cry no more, no one cares

I'll care no more like my all my trifling peers

but I'll pretend with a smug smile

It's sunny, but it's rain'in

It's funny, but it's sad

It feels good, but it made me sick

I wanted to laugh, but I cried instead

My Pumping Princess

I have been waiting for this day since diagnosis day, six very long weeks ago.

PUMP START DAY!!

I'm pretty sure the excitement started the night before!  When I gave Princess her last shot of Levemir she got estactic, clapping and cheering.  I wish I had a video recorder in my hand at the time to show you. It was PRICELESS! This morning she cheered again after receiving her last "pen shot" as she calls it. She was not the only one cheering at that point.  :)

Last shot of Humalog...a little blurry since Lovbug took the picture! 

She marched into the endo's office yesterday morning like a champ. She knew exactly what to do. She took her shoes and coat off and went over to the scale and then over to check her height.  She even sat right down and put her arm out to get her blood pressure checked.   I could hardly believe that she had gained 2 lbs and grew a half an inch since her diagnosis!  I hadn't even noticed that she had lost weight prior to her diagnosis but apparently she had!  I thought maybe it was from a growth spurt but the endo was pretty sure it was weight gained back.  On the other hand the .5 inch taller is a growth spurt! :)

Just a little arm hug! 

She did pretty good when it came to getting her site changed.  She wanted to sit down for a site in her tummy and she can't do that.  I need her to stand up. There was a bit of a struggle but we made it through.   I am pretty sure she was just being her normal stubborn self. :)  She was pretty happy when it was all done.  I am still amazed that she WANTS belly sites and that she doesn't even flinch when I put the site in!  She sure is one brave little girl!

All hooked up and pumping!!!

They did her A1c and it was higher, like I expected it to be.  It was 7.2 at diagnosis and is now 8.1. (yet another reason I am glad for the pump!)  Not bad for her age and I am okay with it, just I knew it would be up considering the amount of high blood sugars she has had since her diagnosis.  We really couldn't do a whole lot about it though because the smallest dose we could give while she was on MDI was 1/2 unit.

I was surprised when our CDE told us we would be pumping the Novolog instead of Humalog.  I guess that Novolog is a little more stable in insulin pumps then Humalog is.  Interesting....not a big deal to me though, they are both pretty much the same thing just made by different drug companies.  Lovebug pumps with Apidra and I might eventually change Princess over the that but since Apidra works much faster then Novolog I thought we would start out that way and then make the switch later.  When my head is a little clearer then it is now.

It is interesting to see the differences and similarities in the girls when it comes to their diabetes.  They are both similar in that they both have Dusk phenomenon, which happens a lot in younger kids. When it comes to carbs, Lovebug is much more sensitive.  I can't do a 15/15 fix for her to correct a low blood sugar.  I have do what I call a 8/20.  Give her 8 grams of carbs and wait 20 minutes.  Those 8 carbs will easily bump her up 15-20 points.  You give Princess a 15/15 fix and it works just the way it is supposed to. Lovebug started out with just one basal rate when she had her pump start.  Princess is starting out with 4 different basal rates!  Can you say C-R-A-Z-Y!

Since we came home from the endo office she has been high.  Like in the 400's high.  I gave 3 corrections yesterday and she still wouldn't come down lower then 250. Goodness gracious! This has been going on for a few days now. I just thought maybe the pump start would lower her back down.  I am going to give it a few days but I already think her basal rate needs to be bumped up just a bit.  I thought she needed a bit more Levemir before she started the pump too. I just decided to leave it and tweak basal rates instead of messing with the Levemir.

This morning she woke up at a nice 133.  Lovely.  Now here's to hoping she stays under 200 today. (I know, wishful thinking, right?)  I have to admit that I was THRILLED that it only took a few seconds to give her insulin rather then 5 minutes! Good bye hand written logs!!  Good bye pen needles!!  Good bye insulin cartridges!!  Good bye syringes!! (for now anyway!) Good bye 6-8 shots a day!!  Good riddance to you! The pump is SO much easier!!

Hello more free time!!  That is just what this mama of 2 D-kids needs right now. Anything to make it all just a little easier.

This and That

It has been one of those weeks already and it's only Tuesday.....

Sheesh.

I am excited about Princess's official pump start later this week. Princess is very excited to be done with shots and so am I.  She keeps asking me why she has her pump but is still getting shots. That's hard. Especially when she still cries when I give her shots and when she tells me point blank that she doesn't want a shot, AT ALL. (she isn't stubborn or anything....)

I admit that while the pump is easier and better for Princess, it is a constant reminder to me.  A reminder that I have ANOTHER child on an insulin pump. Not just one, two.  (I seriously hate saying that) It is a reminder of what was and now is.  It's a reminder of how different our lives were, just 6 short weeks ago.  It's a reminder that the little "machine" she wears around her waist......keeps her ALIVE.

Despite all that, I am anxious to get insulin in her pump so I can start "tweaking" her numbers. Princess's numbers really have been high and I know her A1C will be up from her diagnosis 6 weeks ago because of it.  But, there is only so much you can do to tweak things when you are on MDI and the smallest dose you can give is .5 units.  I am ready to give her more exact doses rather then rounding up or down when it is time to give a shot.

On a happier note, we did successfully change our first CGM Sensor change last night.  I was pretty proud of myself.  (not bragging here....;))  It went really well.  Princess really does have a little too much anticipation anxiety before so we didn't let the EMLA cream sit on her bottom as long has we had the past couple times.  We also had her lay down on the couch rather then stand up. I actually got it inserted with out it bleeding a whole lot either.  Last time I put one in at the Endo's office, it bleed A LOT.  I think I know the trick to getting no blood, but I must wait until another sensor change comes along in a couple days.

One top of all the pump stuff going on, Lovebug's last day of Preschool was yesterday.  It was hard.  I can't believe my baby is growing up.  I am just amazed at how much she has grown this year.  I am so thankful for great teachers who took such wonderful care of her while she was at school.

For some reason it is harder for me to watch my two d kids grown up then it is to watch my oldest (who is non d) grow up. (anyone else have that problem or am I the only one?)  I just love watching Peanut grown up, learn and try new things.  She is a wonderful, bright girl. It is just SO hard for me to accept that Lovebug and Princess are growing up. Not that I don't want them too, but growing up means giving more of their care over to other people. It's hard to know how well teachers and staff at school are going to take care of her. Will they do as good of a job as I would?  Are they going to be around staff as well as other children and parents who will be sympathetic and understanding?  I don't want anyone to look at them differently because of their diabetes or treat them differently.  I want them to know that they can do anything they want, despite diabetes.  I know there will be lots of challenges up ahead, and I try not to focus on them but I still think about them.  I just want what's best for my girls, just like any other mom would.  It is just SO HARD not to worry!

Mini - The Purple Pump

I know that Princess was only diagnosed 6 weeks ago, and while it seems like it was just yesterday it also seems like we have been dealing with this for a while now. Oh, wait....we HAVE been, for the past 2 YEARS!  I think that may feel like we had to wait FOREVER to get Princess on her pump.

Today we FINALLY got it in our hands!  Princess's precious purple pump! Whom we have lovingly named Mini - Princess's idea, not mine!  Mini has been sitting at the endo's office since last Friday patently waiting for us.  Well, more for Princess, but a little for me too!

Mini - The Purple Pump

We went to see one of our favorite people at our endo office, Miss Sally. The girls just adore her and that makes the trips to the endo office just a little more bearable.  Since we got a Medtronic Revel instead of another Animas Ping we decided to do some training, since some of the "lingo" is a little different between the two pump companies.

It training really well.  I figured most of it out pretty quickly. I'm sure it helps since I have "experience" with insulin pumps already!  (one of the positives to having a second diagnosis, I guess) Princess was super excited when she saw Mini.

When it came time to put her first site in, I knew what to do and I had Princess come over. I told her we were going to put her site in her arm.  OH MY GOODNESS!  I have never had quite as much drama from her at that moment as I did when I asked her if we could put her site in her arm.  She REFUSED!  She INSISTED on a belly site.  I wasn't sure a belly site would work, poor kid doesn't have much "fat" on her!  She is so tiny.
I asked Miss Sally if it looked like she could do a tummy site.  She looked at Princess and said it would be okay.  So, we put a tummy site in! I inserted it and she didn't flinch and no tears!!  She sure is my brave girl!!

Princess is VERY proud of her tummy site!

Princess really is doing remarkably well with all of this. Even though she doesn't like shots, she sure is on board with the pump and site changes!  I wish she was more comfortable with her sensor changes for her CGM but I am hoping she will get used to it.  She cries A LOT for those and yesterday was the first time I had inserted a sensor.  It broke my heart to see her big crocodile tears. I know that we don't HAVE to have the CGM but it does put my mind at ease.  I feel like I can breathe just a little now.  I feel like I have been holding my breathe since her diagnosis.  Huge sigh of relief.

For the next week we will be pumping with saline instead of insulin, so we can get some experience using the pump.  Makes me a little less nervous to be starting insulin next week. I feel like I will have a good handle on the pump by then. So we are pumping with Saline until next Thursday when we go live with insulin!  I am pretty excited (in a bittersweet kind of way) and Princess is too.

Truthfully

It's been one month since diabetes made a second appearance in our lives.  Princess diagnosis turned my world upside down, yet again.  Just when I was starting to be "accepting" and getting used to our "new normal" with Lovebug. Honestly, I should have known better, every time I get comfortable with something another "problem" or trial comes along.   Never in a million years would I have thought a second diagnosis would be right around the corner!

This second diagnosis has been MUCH harder then the first.  First of all - NO ONE should have to deal with this.  One diagnosis is enough!  Two is just....there really are now words (beyond belief, maybe?)

I know that shouldn't question why, but it happens.  I go there every once and a while. Not for long though. When I do I get angry, VERY angry.  I just don't understand.  What is it that makes ME (and my family) so STRONG that we were picked to carry this burden?  My shoulders carry enough, they really didn't need this too.  Apparently someone thinks I am capable!

I don't have the crutch of the "unknown" this time.  I know the realities.  I know the dangers.  I know the pain, anger and grief.  I have lived all of it the past two years since Lovebug's diagnosis.  My reality just plain stinks. I know what to expect, or at least I thought so.  It's just different this time.  I am just having a hard time putting it all into words.

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.

Saturday Snapshots

Diabetes Blog Week Day 6

Princess, Me and Lovebug

Rufus and Rufus

Princess with Lenny the Lion

Princess at Diagnosis

10 Things about Diabetes

Diabetes Blog Week Day 4

Yes, I left the words "I Hate" out of the title.  I know what the subject is but there has been a lot of "talk" about negativity lately. Especially when it comes to diabetes.  I have to admit, lately I have not seen the sunny side of things a whole lot.  Just having ANOTHER child diagnosed and having to go through this all over again makes it a little hard to stay positive all the time.

To be honest, I think that you have to get the negative out. If  I left all my negative thoughts and feelings bottled up inside and always put on a happy face for every one....I would be a hypocrite.  I can't put on a happy face all the time when it just isn't true.

Truth is this Type 1 diabetes is no fun AT ALL.  I don't see any positive in the disease itself. The havoc it creates in my daughters bodies.  The tole it takes on marriages.  The emotional tole it takes on the whole family. The cost of keeping my daughters ALIVE.  The hoops we have to go through to get new technology approved by the FDA. The tole it has taken on friendships. The rift it causes between people because of research. Truthfully, I  don't look at any of those things positively.

I have had some positive things happen in my life because of diabetes though. I have seen in the midst of suffering my true friends reach out and really be there for me, even if they don't understand what I am going through. I have made new friends who are there for me no mater what and love me unconditionally, despite the fact that right now I find it very hard to stay positive about anything.  I have seen my church family wrap their arms around us, support us and lift us up.  I have seen Lovebug reach out and help Princess understand what she is going through. (in the only way a 5 year old can!)  My love for my husband has only grown and our marriage has become stronger because of this experience.

Yes, there are many negative things about diabetes but there are some positive things too.  Both have shaped my life the past couple years since Lovebug was diagnosed (and now with Princess diagnosis) and both will continue to shape my life. It doesn't matter if you are a positive person with the glass half full all the time or a person who's glass is always half empty.  The positive and negative affect your life rather you want to admit it or not. I would be fooling myself and be doing a dis-service to others if I didn't talk about both aspects of diabetes.  So call me a "negative nelly" or a "positive patty"  I am always going to look at both sides of the picture.  It's what keeps me real and transparent and I will never make apologies for that.

Dear Rufus (the bear with diabetes)

Diabetes Blog Week: Day 2 Letter Writing Day

Four weeks ago you were given to Princess by Miss Sally.  I have to admit that I really didn't want you here.  We already have one Rufus and never wanted another one.  I never thought we would have another one, until one Sunday afternoon when I realized we would "welcoming" another Rufus into our family the next day.

The morning you entered our lives was a really hard one. You see were were at our Endo's office with Princess, not Lovebug.  It just wasn't supposed to be this way. We were not supposed to be in the VERY same room that we learned all about how to give shots and take care of Lovebug......with Princess.  

We knew you would be in the blue JDRF backpack that would be given to us. As soon as Miss Sally gave us that backpack, we opened it right up and pulled you out.  It took Princess only a couple seconds to notice you and her face lit up with one of the biggest smiles I had seen a while.  She gave you the BIGGEST hug ever.  Left me in tears.

Princess didn't let go of you the whole time we were at the Endo's office.  I was amazed at how she was immediately attached to you.  You were her best buddy, from the moment she laid eyes on you. You even had to be buckled into the car seat to keep you safe on the way home.

You have been there for Princess in ways I just can't be. You have taken shots for her and showed her how to be brave. That is something I am unable to do with shots, since I am still a wimp when it comes to me receiving one! You have comforted her each and every time she receives a shot, she squeezes you tight as I poke her yet again. Princess just loves to give you shots on your pink patch, sorry for that. We are working on rotating those shots!

She has held onto you tight many nights now. You have become her buddy, going just about everywhere that Princess goes. I have to admit that I would love to put a little purple tutu on you and make you look a tad bit more "girly" but Princess loves you just the way you are.

Thank you for being there.

Thank you for making that transition easier for Princess when she was diagnosed with diabetes just four short weeks ago.

Thank you for everything you are to her, in ways that just can't be.  If I could take diabetes away from her and give it to myself, I would in a heartbeat. But since I can't, I am glad she has you.

Thank you really just does not seem adequate enough.

Admiring Our Differences

Diabetes Blog Week: Day 1

Differences, they are what make us who we are. They make us unique.  Sometimes those differences are respected and other times, not so much.  We can learn a lot from each other, if we would all just show a little respect to one another.

I have learned a lot from other people who are different. Especially from those in the DOC.  While I tend to lean on other parents with kids with diabetes, I also learn a great deal from Adults with Type 1 who have lived it their whole lives. Two of my favorites are Kerri and Kelli.

Kerri blogs over at Six Until Me.  When I started reading her blog she was pregnant with Bsparl. I just loved reading about her pregnancy, the ups and downs and the struggles and victories of being pregnant have having  Type 1.  I was overjoyed for her when she gave birth to a healthy Bsparl. You see, when Lovebug was first diagnosed I was worried for her. Worried that no man would ever really love her for the beautiful girl she is, despite her diabetes. I worried that even if she did find love, she would have trouble having her own children. Reading Kerri's experiences of being pregnant and having a baby have given me a new perspective on this, and she adds some awesome humor in there too!! She has given me hope that my daughters can someday have a family of their own.

Then there is Kelly over at  Diabetesaliciousness.  I just love that she sees diabetes from all sides of the aisle.She has been there and lived it. She has lived the good, the bad and the ugly.  She brings a wonderful perspective with some humor thrown in! I just love that she reaches out to adults as well as kids with Type 1.  One of my  favorite posts of Kelli's is a letter she wrote to a little girl named Grace.  You should go and read it, it is really special.  I can only pray that my girls will have someone like Kelli to look up to and be in their corner as they grow up with Type 1.

Despite our differences, we can learn from each other.  Sometimes differences are just what we need to get us through and give us a little hope.  That is something I can use a whole lot of these days!

 

2nd Annual Diabetes Blog Week!

I debated on rather to do this this year.  I had a blast participating last year.  This year is different with Princess being newly diagnosed. I have so much on my mind I am finding a hard time putting it all into words. Maybe this is what I need to get myself going again.  I wasn't sure I could mettle through the topics or not, but I am going to try!

I am looking forward to the topics this year and sharing something different with you each and every day for the next week.  Be sure to check in each and every day to gain some new perspectives and maybe even learn something new!

Here is to the week ahead and one GREAT  Diabetes Blog week!

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.