I can't believe that tomorrow is Sophie's 5th round of Remicade.  I'm pretty sure I haven't blogged about Sophie since . . . .The Shit that is Crohn's.  If you haven't read that one.  Do it.  I just read it again and it made me cry.  I hate to cry alone.

As you can see from the above pictures Sophie is a little trooper when it comes to infusion day. She doesn't like getting the IV inserted (who does?) but the nurses and child life specialist help keep her distracted during insertion.  It takes about 4 hours and she usually plays Wii, watches movies, plays with the iPad and sometimes sleeps.  They still give her Tylenol and Benedryl before the infusion to counteract any reaction she might have.  Those 2 combined are enough to knock me on my behind!

All in all the Remicade is helping Sophie with her Crohn's symptoms.  It was truly a miracle how quickly it began to work in the hospital.  Amazing.  She improved within a day.

She has completely normal poops now and has also stopped bleeding.  Her labs have been slower to improve which is frustrating.  Her hemoglobin continues to stay a bit low and her inflammation although improved is still a bit concerning. We tried to go 7 weeks between infusions and that didn't work so we are going to stick with 6 and see how that goes this time.  The problem that we have now is she has terrible stomach pain.  Her gut just hurts.  A lot.  We started a new medication (took her off of Nexium) called Cyproheptadine (4 MG).  She has been on it for about 4 weeks -- it's supposed to help with the pain but I haven't seen a huge improvement but I'm willing to give it a little bit more time.  She can't do anything for a long period of time.  If we swim, she will swim for a bit but them wants to go inside and get in bed. It's the same story for just about any activity that we try to do.  She just doesn't feel great and it hurts this momma's heart.

I'm looking forward to meeting with her doctor tomorrow to get her thoughts on the continued belly pain.  They always do a blood draw so I'm going to ask them to run another Celiac screening just to rule that out.  Otherwise I'm at a loss.

All in all she is SO much better but just not quite 100% yet.  With each day we continue to have hope that the next process will improve her quality of life.  Forever Hopeful.

Keep calm and Hope on . . .

School starts next week for my littles.  I've been counting down the days ---- truth!  Does that make me a bad mom ---- maybe?!  Or just a really tired one!  As excited as I am about back to school I'm just as scared and nervous.  I was doing fine until I started filling out all of the medical forms --- yes, the same ones that I filled out last year.  The diabetes ones are exhausting ----

Medication Request Forms
Diabetes Management Plan
Insulin Pump Physician Orders
Authorization for Administration of Diabetes Management and Care Services by Unlicensed Diabetes Care Assistant ---- what the what??
Section 504

The list seems to go on and on . . .


I find the 504 pretty easy --- cut and dry.  You will allow this and will not do this.  The management plan is the one that is so hard.  I find it incredibly difficult to plan out how to treat diabetes! When does diabetes ever stick to the given plan?

Here is what I have come up with for Super Nate:

Diabetes Management (Care Plan) for Nate
Our basic plan for care.

Diabetes Cheat Sheet
I have these laminated and hanging on the wall of any area Nate will be in during school

Section 504
Nate attends a public pre-school within our school district so he qualifies for a Section 504

Lanyard Tags
These are hanging on Nate's diabetes bag that goes with him everywhere
Huge thanks to Heidi at D-Tales for these.  HUGE HIT!!

Section 504 Information
I created this document to hand out at our last OmniPod meet and greet



I could not have done any of this without these great bloggers ---- Mommy bloggers are the best!  Thank you, Ladies for blazing the trail and making it so much easier for the rest of us.  

Thank you all so much for entering to win the Quick Sticks drawing, Facebooking about it, Tweeting about it and liking the Quick Sticks Facebook page.  I hope you all also checked out the Quick Sticks website and signed up for a free sample of Quick Sticks.  Most importantly I hope you or your kiddos will love them as much as Nate does!




I let Random.org pick the winner this morning.


And the winner is . . . . 




Entry #4


Alexis Nicole from Chronicles of D-Boy and Ribbon




Thank you all again for entering and check back next month because Quick Sticks is going to allow me to give away another Quick Sticks package including the following items:


Here's what you will WIN:


A box of Sour Apple Quick Sticks
A box of Watermelon Quick Sticks
(12 Sticks per Box)
A Quick Sticks Drawstring Bag
A Quick Sticks T Shirt
A Quick Sticks Wrist Band



Congratulations, Alexis!!



See you all (hopefully) again next month!

It has been a long time since I've given anything away so I thought (probably out loud to myself), what the heck, Laura Leigh ---- let's give something away!  So, I asked my good friends at Quick Sticks if I could give away their product and they were kind enough to say YES!

The above picture was taken a few weeks ago while I was working with the awesome Quick Sticks team at Camp Sweeney. They let me tell Nate's story and help give away goodies!

I think I've posted on Facebook a couple of times about how much Nate loves these but nothing is ever official until it's on THE BLOG!

So . . . Hey . . . Nate loves these!




LOVES THEM!  And . . . so do both girls!



Here's the deets:

•   Gluten Free
•   230% of recommended daily Vitamin C
•   10 Grams of CARBS per stick
•   Mother and Kid approved!
•   Durable packaging
•   No water needed! Pour right into your mouth

Here's what you will WIN:


A box of Sour Apple Quick Sticks
A box of Watermelon Quick Sticks
(12 Sticks per Box)
A Quick Sticks Drawstring Bag
A Quick Sticks T Shirt
A Quick Sticks Wrist Band



Here's the Rules:

If you are a faithful follower of HWHAP then you may have been wondering where I've been lately but then again maybe not so much.  Maybe you could care less.  Or if you are on Facebook you probably know exactly where I have been because I post there like every 5 minutes.





That's funny ---- Right?

Anyway when I started this blog it was an outlet for me to discuss the wide array of emotions I was going through after Nate was diagnosed with type 1 diabetes and then Sophie with Crohn's disease.  I'm never afraid to keep it real and let people know exactly how I am feeling.  I have certainly been through some tough times over the past couple of years.  I am not sure that I have handled any of it with dignity or grace but at the time I really didn't care ---- survival was my only goal.

Reading back over some of my posts I still feel every bit of the sadness, anger and frustration that I was feeling at the time that each post was written.  I remember vividly the sadness, the feeling of loss, frustration and anger.  At times I did allow myself to get wrapped up in each and every one of those emotions.



I truly believe I went from being what I like to describe as a full-time, stay-at-home, want-to-be-perfect mom to a D-mom and then a D/C-Mom.  I was no longer a woman, a wife, a daughter, a sister or a friend.  All I could be at the time was a mom to 2 chronically ill children (we won't even talk about how bad I feel for Ms. Emma).  I felt overwhelmed and sad ---- some days I still do but for the most part something has changed over the last 6-months or so.  I am still a stay at home mom and a D/C-mom but I have found me again.  I am no longer trying to be the perfect mom, the perfect D-mom or perfect C-mom . . . is there really such thing?  I am just me . . . a woman, a daughter, a sister, and a friend.  I am funny, silly, sarcastic (I actually speak sarcasm fluently), kind of bitchy, and rather snarky.  I have found that getting away from my littles occasionally is actually good for my mothering abilities . . . when I don't escape often enough I can lose my shit FAST!



In March I started running and working out again.  It is my all about me time.  I love to run --- it clears my mind and lets me leave diabetes and Crohn's behind when I know my littles are in the capable hands of someone that I trust.  I am back down to my pre-Emma pregnancy weight and it feels really, really good.  I've also started reading again which I was passionate about before Nate's diagnosis.  After his dx I felt too overwhelmed and exhausted to let myself escape in a book.  Not any more!  I can't believe I am going to admit this but I read all three 50 Shades of Grey books (go ahead and laugh) and am now reading a funny book by Chelsea Handler given to me by a friend (or maybe it was a loaner --- not sure --- will have to check on that?).

I think through my experiences with 2 life changing diagnoses I have learned empathy, compassion and understanding.  I've never wanted sympathy ever and I don't believe that others do either so I try to help others in need, even if it is just an understanding nod or compassionate look.  I never want anyone to think that because his or her child doesn't require the same amount of care that mine do that their child's illness is any less important to me. It's not.  I want to help! I want to understand! I want to be there!

Well, except for this one post I read recently by some woman that went on and on and on about how stoic and strong she was because she was able to get through some random surgery her son had to have and then he ate a flower or a rock or something and she freaked out ---- it was weird and I had no sympathy or emapthy for her whatsoever.  It was the most ridiculous thing I'd read in a while.  To her I did actually want to shout . . . HEY ---- COME OVER HERE AND WALK A MILE IN MY FLIP-FLOPS, DRAMA MAMA!

I know I should be more empathetic of the rock mom but geeeez can you imagine her living my bloody and crappy life?  She would crumble FO SHO.  I could actually link to 100 diagnosis stories that are 100X worse than what that woman went through and each and every one of the mom's I have read about were stoic and graceful through the most horrifying diagnosis stories --- most much worse than what I have gone through.  

How did I get off on that?  Clearly needed to get that off of my chest.

I read this recently on a blog I came across recently and loved it . . . 


Don’t judge me. You couldn’t handle half what I’ve been through. As a matter of fact, most would crumble just watching my life play out. There’s a reason I do what I do. There’s a reason I am who I am. Until you live my story, please just pay attention to your own.

--- Stolen from Diary of a Sick Girl.

So, back to me.  That's what it's all about . . . in my mind anyway.

I am still devoted to my children, dedicated to caring for their needs and I will never stop hoping for a cure.



I will allow myself the breaks that I need to keep my sanity and not allow one ounce of guilt to seep into my mind while I am taking said breaks --- whether it be running, working out, hanging out with my girlfriends or even escaping to the solitude of my closet to enjoy a glass of wine in peace (yes, that makes me a closet drinker!).



I feel like I have survived ---- I am still surviving --- my life isn't any easier all of the sudden it's just that I have accepted that this is my life.  I've embraced my new normal and I am no longer angry about it.  Don't get me wrong I can still get mad at diabetes and Crohn's when I am in the midst of dealing with either one but I think I have finally learned to live by the words that I post here so often . . .

Keep Calm and Carry On.

The Houston Family will be there . . . will you?

Click for the Diabetes Hero - Sunday 5/20 Link List.
Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??


Click for the Diabetes Creativity Wildcard Link List.
 Creativity comes in all shapes and forms, so take this where ever it leads you.  Write a diabetes poem.  Create some D-Art.  Record a vlog.  Write a diabetes song parody.  Scrapbook, collage, sew, knit, crochet . . . . use your favorite creative outlet to create a diabetes project!




It's kind of a combo or 2 for the price of one deal . . . 


Obviously, it goes without saying that Nate is my Diabetes Hero and I've written about that many, many times.  I honestly do not think I could have diabetes ----- I'm a total wimp!  He is so totally amazing and strong and awesome and brave and super adorable!


See ---- total diabetes hero.


For the creativity part I thought I would share this video I made back in 2010 not even a year after Nate's diagnosis.  If I made one today which I should have done for this post but didn't have the time.  It would be to a much more upbeat song --- maybe . . . The Fighter by Gym Class Heroes or something bad ass like that.