Wednesday, February 29, 2012

Keep Calm and Fight Crohn's





Today Jim and I took Super Sweet Sophie to Children's hospital for her 3rd colonoscopy and endoscopy in as many years.  Yea - she's 6 and this is just another day in the life.  SUCH A TROOPER!

I know everyone thinks their kids are amazing and fantastic and beautiful and perfect but seriously my kid really is amazing and fantastic and beautiful and perfect!  Sophie is a ROCK STAR.  

Sunday we started a low residue diet with a little Ex-Lax on the side until Tuesday when we went to an all clear liquid diet combined with 32-oz of Miralax in 3 hours followed with an Ex-Lax chaser.  That's right the girl didn't have anything but clear liquids all day Tuesday!  She didn't complain once.  I fasted with her and I was freaking hungry!!  We had juice, water, sweet tea, a popsicle and some chicken broth and that's it!  

We started the Miralax at 2p and had it complete a little after 5p.  That's really hard for an adult to do but sweet Sophie managed to get it done with little complaint.  She certainly didn't enjoy it but she did it and I think she is just the bravest little girl I know!



So, back to today . . . we arrived at Children's starving from lack of food but also starving for answers! Sophie has been on steroids for 2 years on and off and for 9-months straight without being able to get off without having severe UC symptoms.  She's been on Aziathiaprine for 9-months with various other drugs in the mix along the way.  All with no success.  We decided to do the scopes today because even on the steroids right now she is losing A LOT of blood each time she goes to the restroom.  Her blood work all looks good so we needed to figure out what is going on inside her sweet little body.





After the scope was done we met with Sophie's wonderful doctor and he showed us the the pictures of her colon.  The inflamed area has moved from just the left side of her colon to the entire colon in a classic Crohn's Disease pattern.  Her diagnosis has officially become Crohn's instead of Ulcerative Colitis.  This is something that although we thought would happen eventually was still a very hard pill to swallow.  

You can read about the differences between UC and CD here.  



Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like.  We need to change that. 

At this point in our journey we feel like and Sophie's doctor feels like the only thing that will bring her some relief is to start her on Remicade.  






We will get the results of the biopsies next week as well as the result of a TB test that she had to take before starting Remicade.  We are hoping that the Remicade is the answer we have been looking for but we are also scared at the same time.  It's a big drug to give to such a little girl and the warnings and side effects frankly scare the hell out of us. 

Jim and I came together as parents today and made the decision that this is the course of action we need to take, this is what is best for Sophie, and we will have faith that everything will turn out the way it is supposed to turn out.  As parents we are often faced with tough decisions and we can only do what we feel is best ---- not ever really knowing what the correct answer is or should be ---- this is certainly one of those times for us.  


Keep Calm and Fight Crohn's . . . 

Sunday, February 19, 2012

1 in 885

It has been 885 days since Nate was diagnosed with type 1 diabetes.  That's almost 2.5 years.  In that time I have only spent ONE night away from him.

Yep - - - I finally did it.

Or I should really say ---- We finally did it.

My Mom and Dad (GaGa and Poppa) kept Nate overnight for the 1st time since his diagnosis on Friday night. I really wasn't that nervous.  My mom has been hesitant but I knew she could do it.  She's been helping me with him long enough that I knew she would rock it.

Nate hasn't been wearing his DexCom but he agreed to wear it this weekend so that he could spend the night with GaGa and Poppa (a privilege only his sisters had experienced until this weekend). We did a pod change before we headed over so that was out of the way.  Then we were good to go!  I've never seen Nate so excited!!

Ok - - - I was pretty excited too.  I somehow in 2.5 years had forgotten that it is normal to be away from your children.  It is normal to spend a night away.  It is normal to really, really want a break.  It is normal to really, really need a break.

I'm not going to lie --- it was pretty damn nice!  I've been doing this on my own for a long time now. I needed the break.  Hell, I'm already looking forward to the next break.  Hello - Mom are you listening??  :)

Speaking of my mom --- She totally rocked it.  I stuck around for a while but could tell I wasn't really needed as they were sitting down for dinner.  I normally bolus and temp basal by quite a bit after a pod change but I was too nervous to do that and leave him so he ended up going HIGH after dinner.  My mom  rocked the correction before bedtime and by 10:30 he was back in range and sleeping like a little angel.  <--- Really the only time he's an angel.

The next morning as I was rolling over and then falling back asleep after pushing the snooze button my mom was pre-bolusing for pancakes and again totally rocking the SWAG for SIX pancakes with whipped cream!

When I picked the littles up around 10:30 on Saturday morning he was in range and ready for his morning snack.  Nicely done, GaGa!  Nicely done!






** Disclaimer **

I did have a few nights away from Nate and the girls in January of 2010 but it doesn't really count because I was having my uterus removed and Nate stayed with his father. That is all.  :)

Monday, February 13, 2012

Broken

I've been writing this post in my head for weeks.  It's no easy task.
Tonight I've been staring at the white Blogger screen for quite sometime.

My marriage has been broken for quite sometime.

Was it broken before diabetes?  Probably so.

Did diabetes do more damage?  Who knows?

 I certainly am not going to blame diabetes because that feels a little bit like blaming Nate or his broken pancreas.  Sophie's diagnosis wasn't easy for us either.  We made choices.  We handled everything separately.  I grieved alone most of the time.  And let's not kid ourselves --- there is grief.  Well, there certainly was for me.

Is this where we finally disconnected?  Hard to say for sure.  I'm just going to say our marriage has been broken for a while, we've been living separately for years and finally on January 25, 2012 we officially filed for divorce.

Without turning my blog into the Real Housewives of Collin County . . . I'll just say this is not an amicable divorce and it isn't pretty and it could drag out for a while. I will not blog about the details of our divorce, or the craziness that has transpired or even the accusations that are being thrown around (and trust me the drama so far would be getting top ratings!).  I believe that in the best interest of our children I will refrain from 'blogging it out' here.

I will however be blogging about starting over, being a single mom to 3 littles, being a single mom of 2 children that have special medical needs, and finding my way in the world on my own 2 feet all while being scared to death as to what lies ahead.  I will look to the wonderful men and women who have done this before me to help guide me and encourage me each step of the way.

The end of a marriage is never an easy time.  It's stressful, sad and scary.  For me specifically, it is all of those things and more.

I've been a stay at home mom for 8 years.  EIGHT YEARS.  What in the heck am I going to do now?

I know I am not the only stay at home mom that has had to re-enter the work force after years of staying home wiping butts, washing dishes and shaping little lives.   The difference is my mind is really mushy.  The whole not sleeping for more that 2 or 3 hours at a time has taken its toll on me and I really do not know how one goes to work and functions properly on that kind of sleep.  I know it can be done.  There are moms and dads doing it now but I'm not going to lie --- I'm  pretty scared.  

I've been with Nate everyday since his diagnoses 2 1/2 years ago.  He goes to school for only 3 hours a day, 3 days a week.  During those 3 hours he's at school his nurse texts me at least 3 times. I am terrified to leave Nate.  He's only 3.  I'm not ready to hand over his care to anyone else.  I know I'm not telling most of my readers anything here but it is MY job to keep him alive --- 24 hours a day, 7 days a week.  I'm scared.  I cannot fathom leaving him for 8-10 hours a day.  The very thought of it causes a wave of nausea, tears well up in my eyes and I actually have to remind myself to breathe.  His bg was 38 today and he was running around like a crazy man.  He has a look.  I saw it and checked.  NO ONE else knows that look.  NO ONE else would have checked.  How do you teach someone everything that I do?  It seems impossible.

Sophie's health has me worried too.  It's been almost 2 years since her diagnosis and she's never been in remission.  She's on steroids, immune suppression drugs and we are looking into an infusion drug that could have some pretty strong side-effects.  She's already missed over a week of school this year because of her UC.  I can't imagine not being there for her when she needs me.  No one can love her through these things like her mama can.

Emma, Emma my sweet Emma.  She is my rock.  She is so stoic and beautiful.  She seems to handle everything in stride but I know that she is just like her mommy.  She's so sensitive and internalizes everything.   I know this divorce is hard on her, I know she feels like she always comes last.  I know she is always silently waiting on what her diagnosis will be.  That was hard to write. It's hard to think about.  She's such a sweet girl.  I love being her mommy. I love dropping her off at school every morning and seeing her face light up every afternoon when she sees me pull up to the carpool line.  I'm not ready for so many changes!

For the time being I'm still living in our house with the kids.  Being a single mom isn't really the scary part ---- I've been doing all of this alone here for years now.  The difference is that although I felt alone most of the time I was still able to stay home with the kids, shuttle them to and from doctors appointments, drop them off at school, rage bolus Nate to combat crazy highs, SWAG the macaroni and cheese for lunch and head off lows by just knowing that look he gets.  I've been able to --- yep, I'm going to admit it here . . . catch a nap every once in a while when he's at school.  There are nights that I'm up every hour or two and there are days where I just absolutely hit a brick wall and cannot do one more thing.

There are a lot of scary things in my future . . . where will we live, what will we drive, who will care for Nate, what if Sophie gets worse, who will hire an ass-dragging D Mom, how can I possibly function on 2 hours of sleep, how will I buy groceries, will Sophie's medications be covered . . . the list goes on and on and on and on.  I'm taking them all one at a time.  I'll keep you posted along the way.  I'm always very transparent here and looking forward to starting over and sharing my journey.

I know a lot of people have emailed and reached out over the past month or so and I would like to apologize for not responding as I normally do.  I am still a fierce advocate for Type 1, OmniPod, JDRF, Crohn's and Colitis and the CCFA.  I've just had to take a little time and focus on me and my children.