Most of you know that Nate starts kindergarten this year.  I've known it was coming and made all of the preparations I know to make.  Last week I was overly stressed about completing Nate's 504 meeting and training the staff on how to care for him.  I was literally in tears for days and poured my heart out to my friend, Shay.  I told her how hard it is to navigate all of this alone and that I was feeling completely overwhelmed.  Not many friends understand, really understand what it takes to care for Nate.  Truthfully, only another parent with a T1 child can know the stress and fear that I have about sending Nate to school and trusting that someone else will keep him alive.

The next morning as I prepared for my meetings and got cleaned up for the day I heard the front door open and in walked Shay!  She came over to go with me to the training and to the 504 meetings for both Sophie and Nate.  I had been quietly crying that morning and was seriously thinking to myself --- I just cannot do this -- is it too late to look into homeschooling?  I know Shay would do anything for me, Ian and for my children but I was blown away by this seemingly small gesture.  Having someone by your side during a difficult time always makes it a bit easier and this was no exception.

She stayed with me through the training and the 504 meetings which lasted over 3 hours all together.  The training went great and I'm feeling good about our school nurse and her back up which is the office manager (whose son happens to have T1).  In the 504 meeting we met with the nurse, the VP, the school counselor, the PE coach (also the head of all specials teachers), both of Sophie's teachers and Nate's kinder teacher.  It was almost like we were old friends! They wanted to know all about Nate and Sophie, both of their diagnosis stories, but mostly they wanted to know what they needed to know and what they needed to do to keep them both safe and healthy.  We laughed, we cried and we put plans in place.  Shay chimed in and gave her opinion and most importantly helped me keep my composure in a very important yet emotional meeting.

Shay knows what I do for all of my babies, she knows I don't sleep, she knows about Crohn's and diabetes and she knows how passionate I am about both.  She's done research on her own about T1 and CD and is pretty knowledgeable but I think even she was emotionally exhausted after the training and meetings.  She now has even more of an understanding of how much has to be done to prepare a school to keep both of these sweet babies safe.

I'm so lucky to have Shay in my life!

On Friday she posted the following message to me on FB:

That seems like a million years ago.

It's done.
I'm divorced.
It was awful.

I can't even blog about it --- it was that bad.
People change.
I don't even know him anymore.

It doesn't matter now.

I'm free.
I'm happy.
I smile a lot.

The children are fine.
They smile a lot too.
They are totally amazing.


The children and I moved out of our home last November and moved in with my parents for a short time.  I could not appreciate them more for allowing us to invade their home with our craziness.  We are beyond blessed to have them.

In January we moved out and moved forward.  We have a wonderful new life now.  I won't pretend it hasn't been hard at times. There are certainly challenges.   There are so many adjustments.  The kids had to change schools, make new friends and move to a new city. You know what, except for the school part - I had to do that too.  Trying to make new friends at 40 kind of blows!

I was left with a mountain of debt, no house, and a gigantic IRS lien and no job.  My credit was better so nearly everything was in my name and X decided to let me keep all the debt.
Thank you, X!

I'm completely starting over at the fabulous age of FORTY!

Deep breath - I can do this.  Oh hell yes - - - I am doing this.

Nate still has diabetes.  Sophie still has Crohn's.  Emma is still the best big sister ever.  That stuff hasn't changed.  I will continue to blog about the ups and downs of living with Crohn's and Diabetes, vent about the frustrations and tell a few funny stories along the way.

Oh ya . . . I have some news.

I met someone.

He's pretty special.
He makes my heart happy.
He is completely amazing!





Actually, I've known him for over 20 years (ok, 25 to be exact).


He's been a friend through thick and thin.
He's seen me through all of my ups and downs.
He loves my crazy minis and has embraced them as his own.


When something is right, really right . . . you know it.  As our friendship developed into something more we both felt it.  It just felt so right.  There were times that we both tried to deny it but everything kept leading us back to each other.  You can't turn off or deny something so strong.






So here we are both of us starting over again together.

It is fun.
It is challenging.
It is completely amazing.

I love it.
I love him.
I love my life.

His name is . . . . Ian.  Typing that made me smile.

Ian has 2 nieces that have Type 1 (Hi Krysta and Samantha!!)
He has totally embraced life with diabetes and Crohn's amd shows absolutely no fear of either one.

He's mastered Type 1, Pod changes, and is able to recognize highs and lows in Nate.  They are best buds!!

He was there last year when Sophie was in the hospital.
He visits her during her Remicade infusions

She thinks he's pretty special:



We all think he's pretty special.

OK, OK . . . enough gushing over Ian.
I just wanted to introduce my readers to Ian and his sweet, precious girls, Lexi and London.
They will all be popping up in the blog from time to time so I thought an explanation was in order.

If we're friends on Facebook this is all old news to you so please feel free to disregard.  :)

Nate starting podding with the new, smaller Omnipod 6 weeks ago and although I don't know if I would say it was worth the wait (3.5 years for us) I am certainly enjoying most of the new features!

Of course, we received the pods the day before we left on vacation but no PDM.  I was less than thrilled! And obviously while we were on vacation our PDM malfunctioned. I had a mild panic attack.

All in all it tuned out fine and as soon as we got back I slapped the smaller pod on and we haven't looked back!   Nate couldn't care less about the size or any of the other features but I am quite happy with it.  I won't do a review here as I've read many others on different blogs

The one thing that I did struggle with is the Insulin on Board (IOB) feature.  I don't like it.  We went from MDI to the pod so I have never had the IOB calculated for me for meal boluses.  Nate stayed high for days! ---- I wish there was a way to turn it off.  I changed a few settings including insulin duration and have found ways to work around it so we are no longer dealing with IOB issues.  To be honest, I often don't use the bg to calculate the bolus because I don't want the IOB in the next bolus or correction. Nate is a snacker, he eats all day long so when it calculates his IOB it just doesn't give him enough insulin.  I'm sure there is a better way to work this out so if you have suggestions I am happy to hear them.  Current;y, this is what is working for us. YDMV.





Could Insulet have handled the switch over for existing customers better ---- Oh my stars, YES!

But at the end of the day we have the new system and I'm very pleased.


I just wanted to let everyone know that we did finally get the smaller pod and all is right in my our diabetic world again!

On March 20th, 2010 I wrote a post titled OmniPod, OmniPod . . . Oh how I love thee!  Nate had been pumping with the OmniPod for exactly 20 days.  Yes, on March 1, 2010 we became fiercely loyal and outspoken customers of Insulet, the makers of the OmniPod.  My most popular posts all have to do with OmniPod and the number one and number two search topics that lead people to Houston We Have a Problem  . . . you guessed it . . .  OmniPod and OmniPod for Toddlers.  True Story.  As a matter of fact, I have an entire section on HWHAP dedicated to my most popular OmniPod posts.

I believe anyone that knows me or has read HWHAP knows how much we love the OmniPod insulin pump that Nate wears.  We fought hard to get it and have helped countless other families with toddlers navigate their way through hospitals and doctors that tried to discourage them from putting their tiny tots on this pump.  I love helping others by sharing Nate's story!!

I've plastered pictures of Nate's bum all over this blog for the greater good of young pumpers and OmniPod has directed parents of little ones here for years.

I have been . . .

Fiercely loyal.

Fiercely outspoken.

And now I am . . .

Fiercely disappointed.

This past December, Insulet announced that the long awaited approval from the FDA had been granted for The New, The Improved, The Smaller OmniPod!!   If you follow the link to that post written in May of 2010 you will see that at that time I was super excited and super naive about the smaller pod that we had been promised!



Almost 3 years later I am sitting here STILL WAITING with no idea at all when Nate will be able to start using that new, improved, smaller pod.  They are being released to new customers right now and as of today I still have no answer from Insulet as to when we will be upgraded.  I emailed our sales rep and asked about our conversion and expressed my disappointment with the lack of communication.   I wanted some answers . . . I want a conversion date.

The response I got was super friendly as usual but was the standard answer that I think all existing patients are hearing . . .

' . . . no true conversion date for existing patients . . . only the HOPE that it will be soon."


BOO!

Our DME company, Byrum told me that they have to use all of their current inventory before they can start talking to anyone about upgrading to the new system.  I heard the words . . . late summer . . . maybe August from them.

BOO!

I won't lie --- it is not fun seeing all the Facebook posts & pictures and blog posts from new customers  that are already using the new smaller pod and we have no idea when we will even know when we will get the new system.

I understand --- I do.  I know they have to work through the existing inventory and not take a loss but for the 1st time since we started this journey I am extremely disappointed with Insulet's customer service.  I am not alone in my disappointement.  The grumblings on social media are not nice --- the existing patients are restless.  That might be putting it nicely!

Read more from existing patients here:

This is Caleb has ben waiting 6 years!
Sweet Grace has been waiting 3 years just like us!


And for some reviews on the new system by new patients or 'cut the cord' patients:

Sweetly Voiced - Melissa 
Sarah Kaye (FKA Sugabetic)


Will I remain loyal ---- yes!
Will I remain outspoken ---- always!
Will I discourage people from going with this system ---- never!

I have seen comments from customers looking at the system now questioning if OmniPod's customer service will be ok.  Let me assure you as a new patient you are going to get fantastic customer service.  Sadly for us, the existing patient we feel forgotten.


And because it's been a while since you've seen one of these . . . here ya go:



Most likely the last one ever because he's almost 5 and will most certainly want to strangle me one day for posting his butt shots on here for the last 3 years!  Oh and yep ---- rocking two pods in this shot --- pod change day! You're welcome!


Keep calm and OmniPod on . . .

Separation anxiety in children is totally normal and to be expected.  Both of my girls went through it at a young age when they started pre-school.  It was hard to leave them there crying but I knew once they were done with the tears they would have a wonderful time.

Nate never really went through a separation anxiety time --- when he started pre-school he was totally fine.  I on the other hand was a complete wreck.  Diabetes makes everything harder!  Nate started school when her was 3 years old at a school that had a full time nurse and an excellent staff willing to step-up, learn and help in any way that they could.  All was going so well . . .

Then . . .

In November we moved out of the only home he had ever known and in with my parents.  Jim kept the house.  By early December Nate became my little shadow and by mid-December he would not leave my side.  Not even for school.  One day he went to school and the next day I drove up to the building and he refused to get out of my truck.  Refused!  I'm talking screaming, crying, kicking, hitting, holding on to the seat for dear life kind of refused.  I had to pull out of carpool and drag him out of the truck and into the school (of course I was in my yoga pants that I had slept in and no bra --- doesn't it always happen that way?).  His nurse and his teacher were there helping me get him inside with encouraging words.  That was the beginning of the end.  He refused to participate in class.  He sat on the floor with his coat on for most of the morning and refused to participate with the class.

After that day he got sick, missed class for a few days and then it was time for winter break.  In January I went out of town and he stayed with my mom.  He refused to go to school and I told her it would be far to traumatic for her and Nate if she tried to take him.  While I was gone his home health care nurse came on her regularly scheduled day to help my mom and he refused to stay with her.  She's been with us for over a year so this was shocking!  My mom snuck out while the nurse had him distracted but before long he realized she was gone and threw such a fit that our sweet nurse was actually scared for his safety and called my mom to ask her to return.

These fits although completely normal for children that have gone through major life changes as we have are not normal for Nate and most importantly they are not safe.  While throwing these fits he refuses to let anyone check his blood sugar and with the crying, kicking, hitting, and screaming we have no idea what his blood sugar is doing ---- is it crashing from all of the activity or is sky rocketing from the adrenaline?  His nurse was so concerned one day she had the glucagon out and ready to use.  She actually thought he might be having a seizure.  Yep, it's that bad.

Sadly, I was forced to withdraw him from school last month.

It is hard for most people to understand the concern that I have.  I cannot tell you how many people have offered the standard advice of just leaving him and letting him cry it out.  He'll soon enough be over it.  Although, I do believe it is sound advice for most children . . . we are dealing with more.  I left Sophie and I left Emma . . . they indeed cried for a few minutes and then went on about their day.  Two  problems with Nate:

1.  These fits have lasted up to an hour

2. Diabetes

He is deliberately controlling the one thing that he knows will make me stay or make me return.  If no one can check his bg then we are in a life or death situation and this is not ok.

As a parent I am frustrated.  As a D-Mom I am terrified.

Frustrated because ---- well, clearly this is a frustrating situation!!  Terrified because he is putting himself in danger and  . . . . He's FOUR YEARS OLD and he knows . . . he knows that diabetes is the thing that he can use to have the upper hand. Yikes!


I started this post a month or so ago and since then I have left him with his nurse longer each time and the fits are shorter each time.  He still screams and cries and begs me not to leave every single time.  I sit down with him and tell him that it is ok to be mad and it is ok to be sad but we do not hit, we do not kick and not letting Ms. Nurse check his blood sugar is not ok and not safe.  I always reassure him that I will always come back home to him. We are making slow progress but it is still completely freaking exhausting. 

I feel like we have stepped back 3.5 years.  From the time Nate was diagnosed at 14-months until he started school at 3 we were together ALL OF THE TIME.  There was no one else that would or could keep him.  Now that there are people that can and will keep him he is refusing.  He will stay with me, my mom, Jim and Ian.  (Ian? . . . ya . . . you'll meet him in another post.)

At our endo appointment last week I asked for help (so very rare for me) and the doctor suggested we start with the endocrinology therapist on staff at Children's Dallas.  That was the 1st call I made upon my return home and I am still awaiting a call back but am very hopeful they he/she will be able to help. 

I signed Nate up for gymnastics and am looking at other fun things like t-ball and soccer but the mere mention of his gymnastics class on Monday has him in tears.  

I am at a loss. 

It is so stressful that It's giving me anxiety.  And . . . sadly, I just give in ---- it's just easier to stay then to deal with the stress of the fits.  I am already dreading his gymnastics class tomorrow and want to cancel.

Unable to keep calm or carry on (right now) . . . 

After almost 3.5 years of Super Nate having T1D I rarely have diabetes rage anymore.  I know that is hard to believe but it is totally true ----- there are days that totally suck but we pretty much just roll with it.

Low ---------------- Carb It Up
High ---------------- Rage Bolus
Pod Alarm -------- Change It
Sensor Failure ---- Change That Too
Carb Count? -------SWAG It

Ok, I may not really be that easy going when it comes to T1D but I have chilled A LOT.  I've learned not to sweat it because it ends up just causing me and Nate more stress.  I don't weigh, I don't measure, I don't freak out when he's high, or overreact when he is low, I don't get mad when a pod screams or a sensor fails < ----- I used to do all of those things!!

There really are still hard days and I do complain occasionally but for the most part I don't let it get me down.  I have lots of support and the wonderful people in my life now are stepping up and learning how to care for Nate and I am letting them.  That helps a lot with the stress.

I still don't sleep at night ---- that sucks big time but that doesn't cause rage.  I haven't slept in 3.5 years --- that's just my normal.

Back to the reason I started this post . . . . so, I am cruising along not really raging about T1d and then BAM! Out of the blue Nate has decided to grow up! He's started to be an independent little boy who wants to play outside, ride his bike around the neighborhood, roller skate, and gulp . . . hang out with friends! What the What . . . he's only 4!! Okay . . . 4.5 but still!







The girls have made several new neighborhood friends so they come and go as they please and are in and out of certain houses on our street.  One of the houses is across the street and another is just next door.  I feel totally safe with this situation and love that the girls have made new friends that live so close.








Then the dreaded question came from the man child . . .


Can I go with Sophie over to [insert neighbor child's name here] house to play Wii?


Oh ...................... Fuuuuuuuuuuuuuuuuuuuuudddddggggggggggggge.  If you know me at all you totally know that I didn't really say FUDGE.


I was not expecting that!

After the question was asked I stood there for what seemed like an eternity trying to formulate an answer that was not going to make him resent having T1D.  Not an easy thing to do especially since all of my resentment that I had finally let go of came flooding back.

 In that instant I remembered all of the parties we had attended where I would stand and watch the other children drink juice boxes, eat pizza and cake and be completely carefree about what they were doing.  I remembered the resentment I felt for those parents that were standing against the wall chatting and laughing without worrying about the activity level of their child. I resented them for not worrying about whether or not their child's blood sugar would drop and mostly because they weren't having to check blood sugars and stress about all the food that was about to be consumed ---- the carb counts, whether to extend the bolus or give it up front, whether to back off on the insulin due to the activity.  All the craziness that we deal with came back in an instant ---- just like that I was resenting diabetes again.

It seems like with everything else diabetes related my emotions seem to ebb and flow.  I really have let go of so much of the anger and resentment but I now know that as Nate grows up there will always be new experiences, new adventures and new hurdles & with diabetes in the mix all of those will come with new emotions.

I know that there will be a time when Nate is able to run around the neighborhood, play at the neighbor's house, or even go on a bike ride without me but not now. Not Yet. We are not quite ready for that at his age.  He is just now verbalizing his lows which he still sometimes mistakes with highs. He thinks Danimals have 121 carbs and applesauce has 600 carbs.  I have no idea where those numbers come from --- I think he's just being a silly boy! He can check his own blood sugar but has no idea yet what to do with the number he sees on the PDM.  We will get there . . . I know we will but we are not there quite yet.

So, for now we have an open invitation to the neighborhood children to play & snack at our house where Nate can continue to explore his independence while I keep a (secret) watchful eye on him and am able to check his blood sugar so quickly that most of time the other children don't even notice.  I'm good like that YO!

Right now he is content with hanging outside and at our house but I know the time will come when I will have to let go a little bit more.  Until then diabetes rage is back in check.  We will cross that bridge when we come to it.

Oh and for how I answered his question about playing at the neighbor's house . . . I actually let him go. I did a quick bg check, he was at a safe number so off he and Sophie went.  I knew that dinner was almost ready and they would not be able to stay long.  I've never finished making dinner quite so fast.  Within 15 minutes I was texting the neighbor to send the minions home for dinner.  He got to experience a little bit of  independence and I only experienced mild heart failure.

Keeping calm most some of the time . . . and always carrying on . . .

7 years ago today I was in the hospital giving birth to my beautiful and brave daughter, Sophia Elizabeth.  It is always on my children's birthdays that I stop and take the time to actually think about the little miracles that they are . . .



I was in labor all day . . . . she was finally delivered at 4:27 pm . . . . funny how the memory of the pain disappears as soon as your sweet baby is placed into your arms!

I takes 2 people to create a life but only a woman, a mother experiences carrying a child for 9 months.  Only a mother feels a life growing inside, only a mother feels the flutter of the 1st kick, only a mother wakes up 13 times per night to pee, only a mother experiences the excruciating pain and absolute joy of childbirth.

I'm not going to lie I hated being pregnant ----- yep, I did not glow AT ALL.  I was pretty miserable the entire 9 months.  I usually started begging my OB to get the baby out ASAP around 35 weeks and I wasn't kidding.  But that being said I would do it again 100 times for the joy that each one of my children brings me.

So, 7 years ago today Sophie was born and each year on this day we celebrate her life with cake, balloons, gifts and wonderful memories.  However, today this seventh anniversary of her birth I am sitting here without her. I'm trying to distract myself by staying extremely busy thus my 1st blog post in a very, very long time.  My tears streak and stain my face right now as I sit here missing her beautiful smile.  I know that she is having fun with her daddy.  They are roller skating which she loves but my heart hurts and no distraction in the world can replace spending the day with my daughter on her special day.

It is me that gave birth to her, it is me that was there for her 1st word, 1st step.  It was me that got up each night with her as a new born.  It was me that was there when she was diagnosed with Crohn's ---- it is me that sits with her every 6 weeks at her Remicade treatments.  Call me selfish all you want but I think the courts have it wrong with this one . . . . she should be with me today.

I missed her last night when I went to bed ---- I usually wait until they are all asleep and decorate the kitchen, put the cake on the table for birthday breakfast and place her gifts around her spot at the table.

I missed her when I woke up ---- I missed seeing her run to the kitchen, I missed eating cake at 7am, I missed seeing the joy in her eyes as we sing happy birthday and I missed her sweet, sweet kisses.



Divorce is hard. I know that. I'm living it. Being away from my children is hard always. Being away from them on Christmas (yep, that happened) and birthdays is excruciating.

So, today on the 7th anniversary of Sophia's birth I want you all to know how amazingly strong, brave, sweet, beautiful and fierce she really is ----- Her 7 year old self has been through more than my 40 year old self can imagine and she does it all with grace, strength and remains sweet and charming throughout  every single thing that stupid Crohn's throws her way.  She is truly the bravest little girl that I know.  I do not take hero status lightly and I am telling you right now . . . she is my hero.  My beautiful, sweet, little hero.



Happy Birthday, Sweet Sophie Doodle.  Your mommy loves you to the moon and back and back and back and . . . .




Trying hard to keep calm and carry on . . .