Super Sweet Sophie - Walking for Sophie this time - CCFA

I know what you are thinking . . . Really, Laura - - - another walk?

I've struggled with this for a while. When Nate was diagnosed with type 1 diabetes the JDRF was there as soon as we got out of the hospital. The walk was just 2 weeks after his diagnosis and I needed to be around others . . . others that understood what I was feeling.

Less than a year later our Super Sweet Sophie was diagnosed with Ulcerative Colitis.   Another devastating blow to the Houston family. At that point I just picked up the pieces of my broken heart, smashed them back together and carried on.  What choice did I have?  My daughter needed me and I would not let her down. We started a treatment plan right away and Sophie almost immediately went into remission. I had heard that remission could last for months - even years and I was hopeful that would be the case for Sophie.

Sadly, that is not how it played out.  Sophie started having symptoms again in August so we started her back on steroids to give her some fast relief but again the relief would not last.  

The best way for me to describe Sophie's symptoms to you is for you to think about your little one having the worst stomach bug that they have ever had . . . EVER . . . with every symptom you can imagine. Vomiting, diarrhea, sever intestinal cramping, loss of appetite, lethargic, constant stomach pain . . . just to name a few off of the top of my head. And the worst part . . . it NEVER goes away. EVER.

Sophie's body weight has dropped from the 50th percentile down to the 5th percentile and she has repeatedly been forced to endure harsh rounds of steroids to help her little body from hurting so much.  Last week she made a wish . . . her wish was for her tummy not to hurt anymore.  What a heartbreaking wish for a 5 year old little girl.  Most girls her age are wishing for the latest Barbie doll or Disney DVD but Sophie just wants her UC to go away.

Heartbreaking.

Last year I threw myself into raising money for JDRF and with the help of my friends and family we were able to raise $12,000.

But what about Sophie?  She needs a cure too.

So, this year we are participating in the 2011 Take Steps for Crohn's and Colitis.  I am looking forward to raising money and awareness for Crohn's and Colitis but I am also looking forward to meeting families like ours living with UC in a small child.  

I don't have the energy or the friend base left after just raising so much for JDRF to raise $12,000 this year but I am thinking about alternating between the 2 charities each year.  We will still walk for each every year but maybe really fund-raise for just one a year.  Good grief . . . does anyone have any suggestions on balancing it all?  Do you have more than one charity that you raise funds for each year or do you switch every other year.  I would love to hear some thoughts/suggestions. 

I have found a wonderful online community for diabetes but I am lacking the UC support that I so desperately need. I'm hoping that becoming active in our local CCFA chapter will help me find what I am needing/lacking.

I'm aware that times are hard --- money is tight --- and oh yea . . . I was just begging you for money 6-months ago but if you would like to donate to Super Sweet Sophie our fund-raising page link is below and we would really appreciate any amount you can donate.  Also, even if you don't donate we would love for you to walk with us on May 14th --- There will be food, music, kid's activities and just an all around very family friendly event!!  It should be fun!  :)

http://online.ccfa.org/goto/SuperSweetSophie

Diabetes - In Real Life

This post is way over due.  Way over due.
I met Tracy from The Superhero and the Princess in real life (IRL) back in early February.

I was standing on my tip toes and Tracy was bending her knees!

Tracy and I met online shortly after Nate's dx in 2009.  Her son, the Superhero was dx at 18-months.  She had been where I was and was always there to encourage me when diabetes got me down.  We  connected through our common bond and became fast friends.  She took the time to chat with my by phone, answer texts and always had encouraging words for me as we were starting our pumping journey.  I feel like I've known her forever.

The funny thing is - - - I'd never actually met her before her whirlwind trip to Texas.  We hooked up for lunch in a small town about 90 miles away from our house.  I was so excited to meet Tracy and family ---- there was no nervousness or any apprehensions about meeting someone IRL that I had met online.  It felt like I was about to go to lunch with my best friend or my sister (I don't actually have a sister - just a stinky brother).

We got to the restaurant 1st and grabbed a table. As soon as Tracy and family pulled up I was out of  my seat and on my feet to give Tracy a big hug!  She's much taller than I thought she was - - - she was probably thinking ---- that Laura is a lot shorter than I thought she was!! 

We chatted throughout lunch which wasn't easy with 5 kids between us but again it just felt like we were eating with and chatting with close friends.   The thing that struck me as odd was that when I went to hug and chat with the Superhero and the Princess they were both super shy and kind of hid behind their mom.  Tracy and I were laughing because we feel like we know each others children so well but the fact is they've never even seen me before! I'm sure they were thinking ---- who's the CrAzY woman trying to hug me --- save me, Mom!!!

Isn't it funny how well we all know one another?  Yet, most of us have never met IRL. I've made some wonderful friends through the DOC. I feel so close to so many people that I otherwise would never have had the wonderful opportunity of knowing.

Before finding friends in the DOC I thought meeting people online was kind of creepy.  Please don't judge me - - - just hear me out!  The only thing I really knew about people meeting online was what I watched on Dateline (To Catch a Predator) - - - and that ain't the kind of meeting I wanted any part of!  I'd never been in a chat room, or on Twitter and I was just really starting to feel out Facebook and connect with people that I had at one time already known.  So, for me now to feel so close to people that I've never met IRL is quite the turn of events in my life.

Diabetes has given me several gifts one of which is friendship.  I have friends all over the WORLD that lift me up, understand my feelings and are holding my hand every step of the way.  What an amazing gift - right?

I've met some pretty amazing people IRL that I would have otherwise never crossed paths with if it were not for Nate's T1 dx.  Locally there are many - - - Joanne, Jessica, Heather and Becky just to name a few.   I live within 15 minutes of each of them (all different directions) but I don't know that our paths would have ever crossed without diabetes.  My life is so much better for knowing each of them and each of you!

Mommy Guilt, Exhaustion and WTF?!

It's Wednesday!  Woot - that's the day after Tuesday.  And  . . . the day after Emma's 7th birthday.
So, since we are starting with Emma's birthday ---- let's talk about Mommy Guilt.
I've got it.  It sucks.

Last months Sophie turned 5 and Emma's b-day was yesterday.  We've done a joint b-day party for them every year since Sophie's 1st b-day.  They are so fun - - - I have to admit - - - I've always been that mom that goes a little over the top (not WAY over the top) when planning parties.  I love party planning and these are my 2 favorite girls so - you know - I go with it!  We've had huge princes parties with Belle, Cinderella and Jasmine in attendance, we've celebrated at Disney World, a big Barbie and the Diamond Castle dance party and Pump - Pump - Pump it up parties!

Guess what kind of party they got this year ---- can you guess?  Ummm - yea - NO Party.  Nothing - not even a family party.  I couldn't even get my shit together enough to pick out a restaurant to take them to this weekend to celebrate with my parents.  Finally, my dad just chose a spot because we had a coupon from the Passport book (love the Passport book)!  Seriously?

I wanted to do something - but it just didn't happen.  I'm so sad about it.  The girls haven't even mentioned it.  Have they really not noticed?

I thought about doing a slumber party - how hard can that be - right?  Wrong.  The very thought of it threw me into a tailspin.

Sleep around here is precious - I get very little and the thought of inviting little people over here all night to NOT sleep - no thanks!  So, again that makes me so sad!  My girls are missing out on things because I'm just too tired to deal with it.

What makes it even worse is how guilty I feel about how much time and energy I put into the JDRF walk last year.  I busted my butt, worked day and night, planning, making shirts, raising money and  hosting fund-raisers and I couldn't put a little party together for my girls.  WTF is wrong with me?

Is it depression or just exhaustion?  I really don't know.  It's something!

To make things worse yesterday Emma said "Mommy, I know your favorite place in the whole world!"
"Your bed!"

WTF?

I try to catch naps when Jim is home and I think that Emma just thinks I'm one big, fat, lazy mommy!  Ugh!
Shoot me now!


Parties Past . . .

Emma 3 - Sophie 1

Sweet SophieBelle

Emma 4 - Sophie 2 - Nate in my tummy!

B-day with Cinderella - AWESOME!

The Royal Family - Sophie 3 - Emma 5

 

One Rockin' Princess Dance Party!

Obviously - 4 and 6 here!  :)

Super Fun Pump It Up Party!!

I think I just need some sleep.  Real sleep - like 1 night of uninterrupted sleep. Ok - maybe 2 or 3 nights of uninterrupted sleep, a 4 hour massage, followed by a facial and a couple of days of drinking Pina Coladas on the beach!  Yep - I'm pretty sure that would cure me!

A Play Date Picture Post

If you are on Facebook than you know that I hosted a T1 and Sibs play date today.

O M G! It was so fun. Oh yea - and the kids had fun too. I love all my D-Mama pals - new and old!! The kids had a blast and each and every one of them pouted when it was time to leave --- I pouted too!!

Quick introductions ----

In attendance today:

Joanne, Fred (he's cool like that), Elise (3) and Mattias (5-months)

Jessica, Liam (4) and Peyton (1)

Heather, Parker (4) and Avery (2)

Becky, Hudson (5) and Sophie (3)

Me, Sophie (5) and Nate (2)

So, yep - we had 10 kiddos total.  5 of which have T1D - 3 pumpers (2 OmniPod and 1 Pink Ping) and 2 MDI.  Liam was running a little HIGH and Nate was running a little LOW but you would not know it by looking at any of the kiddos!! 

Nate and Peyton

Liam (Both Elise and Sophie have a little crush on this cutie)

Parker, Elise and Sophie

Nate

Sophie

Elise, Nate, Becky, Sophie and Sophie

 This picture is so funny --- Nate loved Becky and even went and got a chair so he could sit by her! Then he kept bossing her around telling her how to color his Scooby Doo coloring book!  She was SO sweet and did everything he told her to do.  :)

Tea Party in Sophie's Room

Parker, Nate, Avery, Liam and Elise

SO CUTE!

Jo and Heather in the background

OMG - Jessica and I were laughing SO hard!!!

Peyton say AHHH!

Jess and Nate

Jo and Mattias

I didn't get a picture of Hudson - how did that happen?  But - he's a super cutie just like the rest of the sweet boys that were here today.  

Diabetes brought us all together (bleck!) BUT - I'm so lucky to be surrounded by such wonderful ladies (& Fred) and all of their wonderful children.  And . . . my favorite part of this post of pics is that unless you know who has T1 and who does not . . . you can't tell by looking at the pictures. 

Andrea . . . You are the lucky winner!!

Thanks everyone for playing along with us!
We enjoyed all of the comments and checking out everyone's test strip guesses.

1394 was the closest guess to the actual total number of test strips in the jar so Andrea wins some of our new Spring Pod Magnets.

Ok, Ok - I know it's not like winning the Publisher's Clearing House or anything but we hope you enjoy them!!

Andrea's son, Cale had a terrible allergic reaction to the OmniPod adhesive and is no longer able to pump with the pod.  When Andrea found out about our family losing our health insurance they reached out and offered all of Cale's unused pods to Nate.  It was an amazing - AMAZING - thing to do.  We will be forever grateful to Andrea and her sweet family for sending us Cale's pods.  No amount of ornapods or pod magnets will ever be enough to thank you, Andrea and family!! 



Here are the pics I took while counting . . .

I counted out the 1,300 and then had a few left in the jar (less than 100) so I waited until Monday night before posting to count the last strips.  So, the total number of test strips in the jar was 1,382!

It seems like there should be more but looking back over Nate's PDM we've cut back on testing since we've had DexCom.  We still test anywhere between 7 - 10 times per day but there are some days that we test less and sadly some days where we test more!  Oh and don't forget not every test strip can make it into the jar.  Just this afternoon I found one in Nate's bed and another in one of my shoes.  Huh?  Seriously, they turn up everywhere!!

Andrea, shoot me an email with your address and I'll ship your prize ASAP.  :)

Super Nate Running on OmniPod for 1 Year

Super Nate Runs On OmniPod!

 
1 year ago today I posted Pumping, Good Grief and Hope - if you have time you should go back and take a look. We've come a long way. Nate and Liam started pumping with the Pod on the same day. They both look so little and oh so very brave!

Liam and Nate - 3/1/2010

1 Year pumping with the OmniPod!

Wow!

12-Months of Podding

How did a year slip by so quickly?

For a super fantastic review of the OmniPod Insulin Management system - please check out Lorraine's review here.  I would love to write a fabulous review but there's no need --- Lorraine did an outstanding job so I'm just going to use hers.  Thanks, Lorraine!

Speaking of Lorraine . . . she and Caleb have provided an amazing amount of support, knowledge, and kindness. I'm not sure we would be where we are today without their paving the way and sharing their knowledge.  Thank you, Lorraine and Caleb for all that you have done but thank you most of all for your friendship and support!

Jessica and I both had an uphill battle getting the OmniPod on our 2 sweet boys.  We dealt with opposition around every corner it seemed.  The doctors, the nurses, even other pumpers tried to convince us that this was not the right choice.  We held firm in our belief that we, as mothers know what is right for our children and I have not regretted our choice - - - not even once!  I am BEYOND grateful to have gone through this journey with Jessica and Liam.  We've made quite a team over the past year!!  Although our friendship extends beyond diabetes and podding I know that it is those 2 things that brought us together and I am thankful every day to have Jessica by my side in this journey!!

Team Super Nate and Team Liam! 

Pumping with the OmniPod is by far the best thing we have done for Nate's D care.  Our life before the OmniPod was pure hell. The agony of multiple daily injections and NPH was almost more than I could stand. The OmniPod changed everything for us - everything! For more on how the OmniPod helped us reclaim our lives - please read OmniPod, OmniPod Oh How I Love Thee.

Everyone told us that beginning the pump would be like being diagnosed all over again.  Our experience was the complete opposite!  I fell in love with the OmniPod the moment I stuck it on Nate's little bum.  It was an easy transition for us and I cannot imagine caring for Nate any other way. Nate was 20-months old when we started pumping so I was already dealing with irregular blood sugars - - - a lot of highs and a lot of lows so switching to a pump and dealing with tweaking basals was not that challenging for us.  I was already used to all of the crazy numbers.  I wish I could tell you something negative about the OmniPod but I just can't do it.

I honestly believe that upon diagnosis they should send the parents home with an insulin pump and a case of wine ---- wouldn't that make the blow of the dx much more manageable!?

I didn't really plan out this post the way I should have --- I don't really have anything profound to say.  So, for Nate's Pod Anniversary Jim and I decided to count all of the test strips in our test strip jar.

Yep - that's right!  We put all of Nate's used test strips in the above jar and we decided to count them! Every. Single. One.

Can you guess how many are in there?

Here's a little hint:
We've been putting them in this jar since October.

One drop of blood for every strip in the jar.  Pictures like that make the reality of what I do every day sink in and yet Nate doesn't even flinch.  He says 'No ouch, Mama - no ouch!'  I guess he's just used to it because he always says no ouch when I ask him if it hurts.

So, can you guess how many test strips are in the jar??

Leave me a comment with your guess and the person closest to the actual amount will win a few of our super fabulous Pod Magnets.

Check out some of our latest designs:

. . . and because every year on the day we celebrate Nate's 1-year OmniPod Anniversary we will also celebrate a day of HOPE! Here are our HOPE pictures for 2011 . . . 

Big Strong Nate runs on OmniPod!!