Saturday, July 30, 2011

Not a Popularity Contest - Thank Goodness

This post probably will not win me any popularity contests with the PWD in the DOC and I'm just going to have to be ok with that.  Don't get me wrong --- I love PWD.  Really, I do!!  

I also love reading PWD blogs and getting a glimpse into how Nate's life will someday be . . . 

BUT . . . there are a few out there that have criticized the way the parents of CWD are raising these little ones.

The latest was a blog post which has now been taken down. Sadly, she is a nurse, a camp counselor, a mom, and a fellow Texan.  Those are 4 things that I wish she had considered before blasting parents of CWD and calling the students at the camp "pusses" which she later changed to "wusses".  After reading Wendy's post about the same person I have decided not to link to her blog and although I really wanted to call her out and link to the camp -- I won't.  I will say this . . . it is a very popular camp here in Texas and the fact that she posted from the camp during the 1st session of diabetes camp made me steaming mad.

Here's the deal --- it's not the 1st time I've read a PWD criticizing parents of children with diabetes.  I'm going to be quite honest with you ---- I don't give a rat's patootie if you had an a1c of 12.6, had to pee on a stick, wait 5 minutes to find out your bg, or use harpoon size injection needles.  That's just not what we do now.  As my friend Reyna always says --- when you know better - you do better. 

Why are we being criticized for making diabetes a little bit easier for our children?

Who cares if we use EMLA or ice packs and who cares if we don't.  Yes, we put our babies on insulin pumps and continuous glucose monitors --- are you telling me you wouldn't?

We check Nate's bg multiple times per night --- why does that bother you so much? He sleeps for 12 hours. That's 1/2 of his a1c and a heck of a long time to go without a bg check. Oh yea --- and he's 3.  He's growing at an unimaginable rate which makes his blood glucose levels CraZy.

I wish that people would just stop and think about things before they start to openly criticize a parent.  First, if you are not a parent then you have know idea just how hard being one is so please just shut it.  If you are a parent and a person with diabetes then how can you not put yourself in my place? I mean have you really not one time thought about your own child being diagnosed with type 1?  Would you not want the very best for your own child?  None of us are perfect.  We are all just trying to survive the everyday ups and downs of parenting a child with type 1 (and many of us have multiple children with T1 or other diseases/disorders) the very best we know how. 

My son, Nate was 14-months old when he was diagnosed with type 1 and although we have never used EMLA I am not opposed to it.  For six months after his diagnosis he was receiving 3 or 4 shots per day.  We were holding him down while he was SCREAMING, BEGGING, CRYING for us not to hurt him.  It was heartbreaking.  You cannot explain to a 1-year old that you are helping him live. He's now 3 and wears the OmniPod and Dexcom and yes he still occasionally cries about site changes but he is no WUSS!  Let me say that again . . . my son does cry but he is NO WUSS.

Just thinking about that post I read has me all fired up again --- how dare you call any child a puss or a wuss? What kind of person does that?  Much less, the children these parents have entrusted you to look after and guide through diabetes camp! 

Believe me if Nurse Mom from Texas  is still on the counselor list when it is time for Nate to go to camp we will be taking our son elsewhere.  Nate is way too wonderful to be brought down by that kind of negativity.  I truly hope the children at camp this session were able to enjoy themselves and not be made to feel like they are anything less than spectacular!

That is all.  Stepping down from my soap box now.

Keep calm and carry on -

Wednesday, July 27, 2011

Super Nate is in the House!

Nate is a super cute junior ambassador for The Diabetes Dude and this week Nate got a chance to represent The Dude, raise awareness for T1 and raise money for JDRF.  Monday night Nate got to throw out the 1st pitch at the Rough Riders game.

We decided to turn the event into a fundraiser for Team Super Nate and the JDRF so we invited all of our friends and family to come out and watch Nate toss out the 1st pitch with a portion of the ticket sales going to JDRF.

Nate cried on the mound --- he was a little nervous ---

So ---- you know ---- Jim actually threw out the 1st pitch ---- but we had SO MUCH FUN!!



















Sadly, the Rough Riders lost this one but we stayed to cheer until the bitter end.  Our seats were in the RR's bullpen area and Nate loved watching the players warm-up.  At the end of the game one of the players gave Nate one of his bats. 



When Nate woke up Tuesday morning the 1st words out of his mouth were "I'm in love with baseball".  So funny!

Thank you to all of our friends that came out n real life and in spirit to support Nate and JDRF.

 We had a blast!!


Wednesday, July 20, 2011

Emotions

There are so many emotions involved when one of you children is ill.  Seeing what I've seen Sophie go through in the last few weeks has really taken a toll on me emotionally.  Diabetes has already forced me to dig deep and find strength inside of me that I never knew that I had --- I wonder --- is there any left?

Sophie's diagnosis came less than a year after Nate's so I'm pretty sure I was still numb so I was not able to feel the emotions from another diagnosis.  I'm feeling them now.  Just like before I find it quite easy to put on a smile for my sweet girl but give me one stolen moment alone and I am a bawling mess.

The good news is I've been here before and I know I will find my way out.  It's dark but there is always light at the end of the tunnel and I'm pretty good at seeking it out.

As I sit here in the hospital with my daughter it has become clear how amazingly ok I am with Nate's type 1 diabetes.  Don't get me wrong, it took a long time to get here but here I am. Somewhere along the way I accepted the fact that Nate has type 1 and he IS going to be ok.  More than ok --- he is going to be amazing.  I think reading Phil Southerland's book, Not Dead Yet really helped me realize that there is so much Nate can accomplish despite having diabetes.  Yes, he may have to work a little harder, dig a little deeper and bolus a little more but I know he can and will.  In my eyes it has already made him so much stronger than any other 3 year old I know.  Just think how awesome he is going to be at 10, 16, 21 and so on.

I struggle with Sophie's dx a little more I think because of diabetes.  Let me explain.  Although diabetes can be a bitch!  I mean BI-ATCH!  I know that I can work my ass off and keep Nate in good health --- I'm not saying we don't have bad days, highs, lows or all the struggles that come along with T1 but after almost 2 years I feel like I have come to terms with the diagnosis and know that we will all be ok.  I'm guessing that right now Sophie's diagnosis is so hard because we are right in the middle of the trenches fighting as hard as we can to get her better.  The hardest part is there is NOTHING THAT I CAN DO. 

NOT ONE THING.

Her disease cannot be controlled by me.  As hard as I fight for her health her disease has a mind of it's own.  I know we preach that insulin is not a cure for T1 but we can work hard, not sleep, count carbs, weigh food and keep these kids as healthy as possible with all of our hard work and it just doesn't work that way for Sophie.  It makes me so mad!!!  And sad!!! And I think I'll go beat the hell out of a pillow now.

I truly hope this post doesn't offend anyone.  Please know that I know as well as anyone how hard T1 is and would never, ever want to make it seem easy.  It's not.  Period.  It's just that I feel like I (occasionally) can control Nate's health with all of the hard work we put into his D care.  Sadly, there is nothing I can do for my sweet Sophie to keep her healthy and strong and that makes me MAD AS HELL!

Okay --- going to beat pillow NOW.




O is for Outrage



As you may or may not know --- I have a lot going on right now.  I have a few little somebodies that really need their mommy right now.  So, I am going to link you over to one of my favorite writers, Jessica Apple from ASweetLife.  Click HERE to be directed to her post about this project.

Then be sure to click HERE to be directed to the International Diabetes Federation to send your post card to President Barack Obama.  It's so easy ---- I just did it ---- you can too!

To learn more about the CALL TO ACTION campaign please click HERE to read Wendy's post from Candy Hearts.


Sunday, July 17, 2011

More Poop on the Poop



I wonder if Sophie will really hate me if I started calling her the little stinker.  You know, if I went all anonymous so as not to embarrass my kids one day. I was trying to think of names --- Big Sister, Little Stinker and Super Sweet (referring only to his blood sugar not his 3-year old attitude). Ehhh .... I guess I'll just stick with Emma, Sophie and Nate for now.

Can you tell I'm running on E?  EMPTY. Need more coffee. STAT!




I've been trying to update on Facebook from my phone but thought I would log in here to give a quick update for those that don't Facebook.  Yea - Jim's in the shower so I stole the laptop ---- gotta make it quick.




Here's the poop . . .

We checked into Children's Medical Center of Dallas yesterday about 1:00 PM and they got her started pretty quickly on an IV of Nexium and steroids.  It took 2 tries on the IV which isn't terrible but good hell it's hard on the heart watching that happen.




We've met with nurses, techs, iterns, fellows and doctors all asking the same questions in different ways --- it gets a little exhausting but everyone has been so nice.  I'm amazingly very pleased with our stay so far which is a far cry from my thoughts on our experience when we were here with Nate.



Sophie has now had 2 days of IV steroids and is feeling a little better.  Her sed rate or ESR is currently 70.  Normal range is 3-13. This blood test measures the amount of inflammation in the body.




Her Hemoglobin is currently 7.6 and should be 12.  A low Hemoglobin is referred to as Anemia and can sometimes require a blood transfusion.  We are hoping her numbers come up so that we can avoid a blood transfusion.  I'm having issues wrapping my head around someone else's blood being transfused into my sweet Sophie which may sound odd but it is what it is.  We don't really have time to donate and give her ours which is what I would prefer to do.




Ok - - - I didn't get a chance to finish before Jim stole the computer back and now it's almost 9:00 PM.

Sophie had her procedure done today about 1:30 --- it took about 1.5 hours. Her doctor gave us the result of the endoscopy and colonoscopy ---

Endoscopy looks good - results came back completely normal.  The official results on the sheet I'm looking at: Grossly normal upper GI endoscopy with biopsies pending.


Colonoscopy showed the colon is completely inflamed.  The descending colon, transverse colon, ascending colon was swollen with ulcers.  The official result: Pancolitis.  My understanding is that Pancolitis is Ulcerative Colitis that includes the entire color (large intestine).  Biopsies were taken at the terminal ileum, cecum, ascending colon, transverse colon, ascending colon and rectosigmoid colon.

The doctor still thinks she presents more like Crohn's and because Jim's sister has Crohn's he is still leaning more towards Crohn's but we are waiting on the official biopsies.  Obviously, we are concerned either way but we are hoping that the dx remains Pancolitis.




We are still in the hospital for a few more days.  Sophie will continue to get steroids through IV and be monitored to make sure her hemoglobin returns to a good, normal range.




Thank you all --- everyone of you --- for all of the love, support, prayers, phone calls, texts, personal messages and good vibes.  They have meant so much to me and my family.  My Facebook wall is literally filled with support which I have found so comforting throughout this trying time.  Thank you - Thank you - Thank you ---- from the bottom of my heart ---- Thank you.



PS - it is now 9:00 AM and I came home for a quick shower and am headed back to the hospital momentarily.  I will update as I can.