Thursday, September 1, 2016

The End of Remicade

From Facebook Post 8/31/16:

Last night we got the word from Sophie's doctor that her body has built up antibodies to the Remicade. 
In July we had hoped that a tummy bug from Disney had thrown her out of remission but when she got sick again 4 weeks later we knew it was something else. Last night our suspicions were sadly confirmed. Now we will begin a new journey seeking remission for the Doodle. 
I'll be speaking with her doctor today about Humira. In the meantime she begins another round of steroids. 40mg of prednisone. Aw LORT! #SteroidSophie 😬
Thank you so much for all of your kind and encouraging words on my post yesterday. They were read and they were felt ❤️.

Tuesday, August 30, 2016

Empty Cup

From Facebook post 8/30/2016:

I used to have this cute little blog called Houston We Have a Problem, it was my way of kicking, screaming, crying, and venting without actually doing all of those things all of the time! It got me through some really dark days after Nate's Type One Diabetes diagnosis and then again after Sophie's Crohn's Disease diagnosis. And a few days in between! 
I love to write and express myself through that outlet. I found as I moved further away from the diagnoses and found happiness in other aspects of my life I needed HWHAP less and less. Or maybe more accurately there were fewer things to write about and words did not come quite as easily. Also, Facebook has become a miniature blog of sorts where I can share, vent, and overshare! 
I often share about the kids and what is going on with each of them and the toll that each disease has taken on each child in our family. Lately though, I have shared a bit more about the toll that they have taken/are taking on me. Diabetes is ever challenging but after nearly 7 years it does fade into the background a little bit and becomes more like breathing or blinking on most days. There are of course, days that if diabetes was a person I would punch that person in the face but most days I just breathe. 
Sophie was in remission for a good stretch with a few set backs here and there but Remicade has been good to her for 4.5 years. When Crohn's disease fades into the background you move forward as quickly as you can and separate yourself from the hell that it can be during times of non-remission. 
In October of last year Sophie experienced a setback and we had some tough weeks or was it a month? Crohn's Disease is not pretty, there is no way to put a pretty bow on it, and package it up. It is horrible. It is messy. It is mean. It is exhausting. --In October I let myself slip back into the place I had been after her diagnosis. I was on mom-autopilot dealing with everything the best I could at the time. What that meant for me is that I put myself last in every way possible. Even with the very things that I know I need daily to get through it all. And we did it --- we got through it. But what was the toll on the family? I was once again a shell of the mom I know that I can be.
Fast forward to March 2016 when I had to go to the doctor for allergies and an ankle injury. Allergies? Why were those back? I was sick again for the 3rd time in a short period and felt worn down physically and emotionally. It all hit me when I stepped on the scale and the nurse causally read off the numbers. Ummm - what? I was sick, worn down, tired, AND had gained 20 pounds! I would love to say how did I get here? But I knew. I had stopped working out like I love to do, I had stopped running which I love, I was not being consistent with my Plexus products at all. I was running on fumes and let myself slip so far backwards. 
I had to sit down and really think about what was going on. I had to make a commitment to myself. I had to commit to begin working on putting myself first. As a mom that feels so overwhelming, it feels impossible, and it feels pretty selfish at times too! Right? The reality is that we can't take care of others if we don't take care of ourselves! What good am I to my children, to my husband, to my friends, to my family if I am an 'empty cup'?
Line. Drawn. -----> In the sand! 
I started back. Right then and there.
With exercising (like I should), running, eating right, and Plexus. 
By convention (June) I was back! I felt better, had more energy, I was happier, healthier and down 20lbs. I was a new person. Again. 
Now we are facing our next storm. The Remicade is not working like it should. We are facing the awful reality that it is time to explore new options to get her back into remission. We are facing all of it together. I am vowing to myself, to my family, and to my friends that I will not pour from that empty cup. There will be tough days but I will find the time to take care of Sophie, the other littles, the husband and myself. 
Surviving motherhood on lots of love, compassion, forgiveness, and Plexus! 

Sophie's 10th B-day Party - 2/2/16

Convention - June 2016

Thursday, May 26, 2016

Big Little Girls

I spent the day with these 2 littles but they are not so little anymore! And they would for sure never hug on each other like this anymore either! We had their 10-year and 12-year well visits today.  ‪#‎HowDidWeGetHere‬
Emma is now almost 5'5" -- what? She just found out she made AP math for 7th grade and is excited to start tennis too! This girl is a reader!! We had to stop and Barnes and Noble today because she has already read all of those books that I got her for her birthday!! ‪#‎DidNotGetAnyOfThisFromMe‬
Sophie is 4'5" and is still playing catch up from years on steroids due to her CD. The good news is that she is growing steadily now! She's a bit underweight but nothing to worry about at all - she eats like a horse! She tested for EXPO but did not get in, she is disappointed but she is excited now to get to MS (she will only be in 5th next year) so she can test for AP classes like her big sister. She's not competitive at all --sarcastic font! ‪#‎AgainDidNotGetItFromMe‬ --She loves playing the guitar, gymnastics and giving me all kids of attitude.
We had a great day shopping and lunching! I miss my babies but love watching them grow into such smart, funny, and strong young women! Momming is so weird -- joyful and painful and so full of lessons that I never thought such little people could teach.  

Sunday, March 6, 2016

The Post about a Village - A Repost from Facebook (2015)

From 2015:

I am so humbled & blessed to have such wonderful friends & family. I am one lucky not-single-single momma. 
I feel so fortunate to have a wonderful man in my life that treats & cares for my children as if they are his very own. He got them up & helped get them going this morning (as per usual --- I'm not a morning person!!). 
I'm also blessed beyond measure to have wonderful parents that step in at a moments notice to help out with these sweet littles. 
There really are no words to describe my sister-wife & greatest friend ever, Shay A Bosma. She has never let me down & today she stepped into one of my most precious roles without even blinking an eye. 
I have sick littles & it is Remicade day for Sophie. The X couldn't help so I had to call upon my village for help. 
It was a true juggling act trying to get Emma & Nate to the doctor by 9:30 & Sophie to the hospital by 10:30. 
Shay met me at the doctor's office IN PLANO & took Sophie to the hospital for her infusion (after a pit-stop at Chick-Fil-A of course). Once I was done at the doctor my mom met me & took Emma & Nate back to her house for some snuggles & TLC. 
I made it to the hospital just after Sophie got her IV. It's the 1st time I wasn't with her & she did great.  ‪#‎LittleButFierce‬
Thank you to all the people that make up our village or any village. You are all appreciated far more than you will ever know. 

Tuesday, March 1, 2016

#OmniPod 6 Years and Counting

March 1st 2010 - A day of hope and the date that #SuperNate started pumping with the OmniPod Insulin Pump.  Six year y'all!  I say this every year but where did another year go?

3/1/2010 - 20 Months

We are still loving the OmniPod and are so excited about the future plans of the company! You can read about Insulet's artificial pancreas system that will use the innovative and differentiated OmniPod platform, the latest DexCom Continuous Glucose Monitoring (CGM) technology and the algorithm licensed from Mode AGC.  For all of the exciting information click here

Did you read that?  So exciting - right?  ArtificialPancreas anything excites me big time!

Just last night during Nate's pod change (which he is still not a fan of) he said he wished we only had to change a pod once a year.  That would be nice.  Although we do love the OmniPod,  pod change nights can often still be traumatic, sad, and overwhelming for both of us.  It doesn't really hurt, I think it is just the anxiety and build up of the entire situation even though we try to keep it light and easy.

He stresses big time.  Which is hard for this momma to see.  I used to be able to change his pod while he was sleeping but he usually wakes up now and an is extremely agitated and angry.  So, although he wants me to do it while he is sleeping I rarely do because his reaction is usually much worse than when he is actually awake.

I have found that keeping him really involved in the pod change does help.  He likes to have the control so I happily follow his lead on how much he wants to participate each time.

Last night he wanted independence so after we prepared the pod together he went to his room and did the rest.  It was a no muss and no fuss kind of night.  Well, until he went to sleep, his blood sugar sky rocketed, I was up all night chasing highs, got a little too aggressive, then spent the wee hours of the morning changing lows.  Just another day with diabetes - Right?

#NODATA --- Just like my brain today!

Super Nate then ...

Super Nate now:

Wednesday, February 24, 2016

How did I get here?

I shared this recently on Facebook and because I want to start sharing and pouring more into my blog for myself and for others I thought I would add it here as well.  

I originally posted this on 01/07/16:

The 1st picture came up today in my Facebook memories. 

I remember this day 3 years ago like it was yesterday. All three of my children were sick and it was miserable. I was a single mom with no job, I had recently moved out of the only home they had ever known and moved in with my parents, and I had not worked since the birth of my oldest daughter, Emma in 2004. I had no idea how I was going to cover the copays for all three of them, not to mention the cost of the prescriptions that they would need. I vividly remember thinking “How did I get here?”.

I had been happily married to a very successful mortgage banker, I quit working when we had our 1st child and never looked back. We had 2 homes, boats, jet skis, and fancy cars. Life was good!
But in 2009 my youngest, my son, Nate was diagnosed with Type One Diabetes at the age of 14-months old. He was hospitalized for a week but our lives were changed forever. I was completely overwhelmed with 3 children and a baby with T1D. Less than a year later, my middle little, Sophia was diagnosed with Crohn’s Disease. She was a very sick little girl spending time in and out of the hospital. My life had been turned upside down. Having 3 children, 2 of which have serious chronic medical conditions is hard. It was hard on me and it was hard on my marriage.
After a very tumultuous and lengthy divorce I was suddenly left without a place to live. I got the truck and the kiddos but he got the house. I definitely got the better end of the deal but I was terrified. I was fortunate to have loving parents to take us in but I knew we could not stay there long. And with 2 chronically ill children that required so much time from me I was not sure how or where I would look for a full time job.
A few short months after this picture was taken, my friend, ShayBosma introduced me to Plexus. We both had great weight loss success and a ton of other health benefits. She signed up as an ambassador and a short time later I followed suit. I had no idea what a blessing Plexus would be to me and to my family at that time. I was able to work Plexus into the nooks and crannies of my life … sitting in carpool, waiting on kids at gymnastics, waiting out high and low blood sugars while Nate was in kindergarten and the endless hours in the hospital while Sophie received her Remicade treatments!!
I became so passionate about helping others feel as good as I did that it was easy to share with friends, with family and on Facebook!! Best job ever! In 2015 I became an Emerald Ambassador with Plexus Worldwide!! In June I picked up my free #PlexusLexus and in September we went on a free trip to #Maui for our #EmeraldExtravaganza (where I got to marry the very handsome love of my life, Ian Ivory!!!). I am beyond thankful to tell you that I now make enough money to never have to worry about a copay EVER again. That may not sound that great but if you have ever been in that position you absolutely know how horrifying it is.
I still have that Yukon XL that I got in the D-I-V-O-R-C-E but I’m not going to lie ---- driving around in my Plexus Lexus is a lot more fun! #PlexusProblems

Friday, February 19, 2016

The Post about the cutest Cheerleader ever #GymcatCheer

WOWOWOWOWOWOWOWOW - Our daughter Lexi and her cheer teams are killing it this year.  Yes, I said TEAMS.  She is on 2 teams this year (and this year only) - Junior 2 and Senior 3.  Both teams are doing so well - - - we are spending every weekend watching cheer competitions and she is collecting trophies and jackets! She is so passionate about cheer and it really shines through in each and every performance.  I love watching all of her sass on the stage!

Some of my favorite pics from this season:

And these . . .

And then there is this:

Oh wait . . . and this one:

Yikes - - - that is her on the left ---- way up in the air.

This weekend we have a big one in Dallas!  The NCA all star competition.  Stay tuned for updates and pictures!

& Ian :)

Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

Powered by Blogger.

Grab my button!

Check out these AWESOME
D-rent Blogs . . .


My Blog List

Search This Blog


Subscribe via email

Enter your email address:

Delivered by FeedBurner

asweetgrace" />

Subscribe Now: standard