Fa. la. la. la. laaaaa.... enough is enough.

Possible Blog Post Titles/Topics

 

Hospital Vacation:  

It was kinda like a special night away from home... except I spent it with a sick kid, slept on 5 inches of a bed, and wore puke-covered clothes for 10 hours straight.

 

The Feral Third:

Taken from a text I sent my friend Wayne, with regard to the thought of a "hypothetical" third Grimes-Sebulsky child... "Um. Yeah. At this point… it would be raised by wolves... or Harper... I’m not sure which would be worse..."

 

If you want him come and get him....

Taken from another text I sent out to close friends and family after debating whether or not to leave one of two -hysterical, fit-throwing children in the buggy at the store. "If anyone wants Saul... he'll be at the Hamburg Target, up front near the checkout... he's the obnoxious, screaming toddler in the middle of the meltdown… be prepared… it’s worse than Chernobyl… and he’s all yours for the taking." Apparently Mom was not amused.

 

35. 103. 101.

(No... those are not lucky lottery numbers). Last Sunday when I was the only "functioning" human in our house... I had a toddler with a BG of 35, a preschooler with a temperature of 103 and an out-of- commission-fevered husband whose temp checked in at 101.

 

WWJD?

Load up the sick, drop them off at the ER, and then quickly drive away or open a bottle of wine, partake of the entire contents, surrounded by the sick and needy.

 

2013

You will be better. I will be better. We will all be better in 2013.  

Oh you know... Just a Monday Ramble.

I’m not sure if it was Mabel’s passing, crappy weather, or just a stint of the “blah’s” whatever the case- last week can best be summed up as “ugh.” I ended Friday night in the fetal position on the recliner… okay okay… not really… but the thought was tempting.

I had zero energy. Zero creativity.  I had 2 nights of sleeping through Saul’s 3 a.m. BG checks. Friday morning Saul was in DKA. I don’t have it confirmed by a medical professional- but I also don’t need the confirmation because I saw it with my own eyes.

According to the MySentry he ran in the 400 for at least 6 hours… whatever the cause - (kinked tubing? old insulin?) who knows… I nearly passed out when his ketone check was 3.3.

He was a beast. Oh… friends… when he’s high… he’s such a beast. And now that he’s learning to verbalize (which is what I've been wanting all along) … I find dealing with his highs and lows way more emotional (for me) -  instead of just screaming or crying… He actually uses angry, hateful words…. On Friday morning as I was attempting to pump fluids and insulin in him - he was swatting at me screaming “NO MOMMY! NO MOMMY!”  

It was all I could do... to keep myself from envisioning a “future me” wrangling a “future” 17 year old man-boy to the ground and forcing him to comply to my treatment demands… “Oh you’re gonna get this insulin punk… whether you want it or not … cause… “ I’M YOUR MAMA… and you don’t MESS WITH YOUR MAMA!!!!”””

I know it’s difficult when you’re diabetic and you go through these hypo and hyper episodes… I’ve heard/read about and witnessed (not just with Solly) so many T1’s not being fully aware of the behaviors they are exhibiting during highs and lows…. It still doesn’t make it any easier for me. During 2 of Saul’s “hyper” episodes last week I bolused a correction of insulin gave him fluids and then left him lying by himself in his crib… because that’s what he was demanding. Every offer to hold him, carry him, cuddle him, move him to the couch, recliner to watch TV or sit quietly was met with “NOOOOO!!!!” “ME BED!!!!!!!!” “NO MOMMY!!! NO MOMMY!!!” So I would patiently wait outside his bedroom door for Bruce Banner to make his appearance again and for The Hulk to disappear so that we could once again resume our daily lives.

I won’t lie… I would much rather treat lows than highs…. Even though the lows are scarier… a bit more dangerous… def. more urgent… treating highs is just flat out exhausting.

Our house continues to seem quieter with Mabel’s absence. 

While I know Saul’s DAD is not pet and will not be a pet… it has given us all something to look forward to, think about and anticipate.  Sebulsky and I have been trying to out-do each other on the clever scale… thinking up names for our DAD. Most service dogs are given “special names” sometimes related to their line of work. A lot of the great ones have already been used…. “Siren” “Radar” “Meter” “BG” “Tracker.” Jeff came up with one that we both really loved… but Saul has trouble saying it… so we put it on a “maybe” list. However- out of the blue this afternoon - I thought up the bestest name ever. Sebulsky has since confirmed that I am currently in 1^st place and we do, indeed have a “winner.” Since the boys are sleeping I can’t get Saul to practice saying it… so we’ll have to wait and see how it comes out of little Sollys mouth first before declaring success. Meanwhile, Harper insists on calling the dog “Leslie.” I’m not sure where she heard that name- or why she likes it… but she’s renamed all her stuffed animals that, and the random 3 hour pet turtle we kept in the yard a few weeks ago, and she anticipates naming her “future bird” Leslie… All I can think about is that crazy white-haired guy who used to make those stupid movies with O.J. Simpson… wasn’t his name Leslie?

Oh… and back to Harper… Saul (much to Sebulsky’s dismay and disapproval) calls her “Sissy” actually it’s more like “Tissy” which I think is cute… Jeff… not so much so. During Saul’s last site change (after the 2^nd change out in 24 hours) he started crying and then demanding “NO TISSY DO IT” “TISSY DO IT” when it came to inserting the needle. I asked Harper if she wanted to try and she said… “ah… I better just hold his hand.” Which she did… and then wiped the little drops of blood from his old site with a tissue, then gave his 25 hugs and kisses, then sat with him on the couch and watched and episode of “Little Einstein’s” she’s seen 35 times. While she is a bit rotten, a little mischievous, a lot manipulative and way to smart for her own good…. Most of the time she’s a pretty good “Tissy.”

 

I’ve officially rambled way more than publically allowed.

So… here’s to a better week…

I hope we can all find more laughter than tears and more smiles than frowns.

 

 

 

Well on second thought....

So I woke up this morning refreshed, rejuvenated and ready to roll. Despite the recent inconsistency in blood sugar levels, inability to make contact with UK for pump adjustments AND coming to the realization last night at 10:30 pm THAT $&$*@^& we only have 2 reservoirs left?!?... 2 left?!?...what do we do?!? what do we do?!? what do we do?!? only 2 left!?!?,................Saul slept like a champ and (according to MySentry and 3 BG checks) kept constant, stable "in-range" numbers throughout the entire night.

I celebrated the occasion with an updated FB status.

On top of successful numbers and sleep.... a frantic text to Jennifer (our wonderful-faithful Medtronic nurse) late last night was returned with the response "Fed-Ex'ing you first thing tomorrow morning." This definitely helped ease my mind and allowed me to sleep more soundly. 

I was actually thinking about buying a lottery ticket after phoning Medtronic this morning. I called in regards to Saul's delayed shipment of medical supplies.  When they told me "don't worry... we're shipping you some emergency supplies till your insurance authorizes our reques I allowed myself to let out another huge sigh of relief.

In between calls and texts Saul kept fussing and twice brought me packs of his emergency skittles. Glancing at the MySentry screen and seeing a SG reading of 141 AND being told to wait 2 hours after eating before doing a BG check- I rationalized his behavior as "sneaky" and "just wanting a little candy."

So we ran. We played. We had fun. At 10 I declared time for a morning snack. I sit down to check him and he's 36. 36!!!!! To date that’s the lowest number I've seen on a meter reading. *sigh* forget that lotto ticket. He presented no symptoms. His request for skittles had been an hour before reading. He apparently "felt" himself going low- I ignored his request the result is he plummeted.

A year from now - I pray - we never see numbers so low- because his DAD will catch them as I hadn't... and for the record his CGM was reading 115 (two arrows down) at the time of his BG check.

It's been the second time here recently I've misread his attempt to communicate with me.Last night after putting him to bed we listened to him cry for at least half an hour. His pre-bed BG check was spot on. MySentry reading 150. I peeked in once.We told ourselves he was mad because we hadn't given in to him wanting to take a drink to bed.

I finally caved. Walked in to find he had pulled out his insertion set (which had just been changed) and was bleeding... the tiny steel needle jabbing him repeatedly on his thigh. That poor boy had laid there in the dark crying the whole time. I said Saul... "why didn't you call for Mommy!" "Why didn't you yell pump!" (that’s what he usually yells when his pump falls out or he hears a CGM alert. He just kept saying "ouchie" "ouchie." It. broke. my. heart. However watching Harper jump into "I'll save you nurse status" late at night is quite amusing....anything to avoid sleep- although last night I think she really was concerned. 

We continue to battle highs and lows and attempt to curb Saul's desire to "graze" I seriously considered getting locks on our accordion folding doors yesterday to prevent him for getting into the pantry. I am trying to get to a point where there are no visible signs of food. Lord help us when he's able to actually open the fridge door.

Yesterday though sad- I had to laugh - when he came to me wanting something to eat and I said... lets go play cars...the look on his face was priceless... kinda a mix between "what the?"and "woman you gotta be kidding me.... get me a snack already."

The irony is... as I try harder and harder to cook low-carb healthy meals...I find myself desperately attempting to shove as many carbs as possible down my throat... when the kids aren't looking. I think I might have actually experienced some carb withdrawal symptoms a few days ago. Which speaking of I'm gonna go ahead and end this now so I can cram down a bag of sugar free cookies while the boys are napping.

Hey... whatever it takes to survive right?

I'll leave you with some adorable pics of the sweetest boy I know (I took these pics 5 min before his 36 BG reading) as you can see... he is not presenting hypoglycemic symptoms at the time... especially for a BG reading of 36.  This my friends is not a good sign and why I will soon be asking for your help in acquiring a DAD.

1/2 a year looks 1/2 full

6 things I’ve learned in 6 months.

1.       It does get easier.

2.       If carb counting was an Olympic sport… I’m pretty sure I’d get a medal.

3.       Diabetes is totally random, makes no sense and never will… so hate the “Big D” and move on with life.

4.       The CGM is the bane of my existence.

5.       Managing diabetes may actually be easier than potty-training.

6.       Saul’s got the best friends and family in the whole world.

Don't worry... you got this girl.

I have written and re-written and written and re-written this post at least 8 times.

I type. I Read. I Delete. The thing is... when I see the words on the screen they look so permanent... so damaging… and so not how I want the story to end.

Some people call it serendipity, some folks call it coincidence… maybe it was just chance…

But during one of the 8 times I was in writing-rewriting mode, I stumbled across this read on another blog.

In some ways- reading this article only complicated my thoughts. It’s part of the reason why I’ve resisted writing about her, and the recent changes in behavior and attitude… dare I use the word “regression.”

It's just that... she’s always been “so good” “so bright” and “so easy” (I suppose I often take all that for granted).

On the flip side however, she's also always been “independent” “stubborn” and “strong-minded.” It's not like I didn’t see these difficult days ahead.

But really... if 4 is like this… then how will we I ever survive 14?

Parenting a diabetic toddler is challenging… but at least there are guidelines, management tools and support groups.  I got nothing when it comes to Harper.

At my wits end today… I escaped to the bathroom for a few glorious seconds of uninterrupted quiet. I thought to myself… how in the world did I end up with this complex, zealous, CRAZY- awesome but exhausting kid?

Then I looked in the mirror.

(The “awesome” comes from Dad… for everything else I’ll accept responsibility).

Friday "Filler" {scratch that} Saturday "Sickies"

Written on Friday, June 22 1:00 pm

So I really wanted to sit down and continue with the riveting saga from yesterday… an ode to clean clothes and fresh linens… or even start a new post about our overly exciting errand adventures this morning… nothing like dragging along 2 cranky kids to 4 different “non-kid friendly” establishments…

Yet each time I’ve attempted to sit down for more than 5 seconds someone or something from somewhere is requiring my attention.

So we’ll see how far I get with this one today.

Grandma (to EH & Solly) Mom Sebulsky (to me) got us this really cool “money counting” jar thingy a few years ago. 



"The counting money jar thingy"

I’m a sucker for “As Seen On TV” crap… especially around the holidays and I gotta say… her gift has been uber cool and def. used. Harper (and now Saul) love sticking coins in it especially cause they get to watch it “add all up.” and it shows them the total. I keep it sitting out in the laundry room and we’ve been randomly putting coins in it for a while.  Harper knows it’s our “shared” bank so generally when she finds any money she runs to her own piggy bank… which is why I was surprised to glance over and see we’d reached a whopping $50 while in the midst of my “washing spree” the other day.

Although it says $50.00 we actually came home with $51.74. The little money counting dude who lives in the lid musta made an error.

I figured we better go ahead and cash it in… especially since we’ve got a busy weekend ahead of us.

Saul ready to roll...

Harper so excited she was actually "taking pictures" of our her money jar

I knew Harper was excited about going to the bank for $$.... until she got out and saw this massive spider... then I witnessed "real" excitment. Unfortunately we didn't have our bug jar with us in the van. She was very disapointed by that.

She begged me to pour the coffee out of my coffee mug and use it as a "bug holder. I agreed to take 500 pics with my phone instead.

One of "Mommy's old kids" who helped us at the bank. Thanks Ashley!! I miss you!!

And as if spotting a giant amazon spider and walking out with $50 cash wasn't enough.... Ashley hooked us up with some sucker action!

* Stopped writing/adding a ridiculous amount of pictures on Friday, June 22 1:00 pm (coincidently to answer that previous question)... this is how far I got… lol

I’ll add in a little “Mom of the Year” stuff for your enjoyment… I stopped here because I got tired of yelling screaming at Harper to GO TO SLEEP. I think I might have even added a whispered “freaking” in between the YELLED “TO” and “SLEEP” several times. She tried napping on two different couches in two different locations and on 2 different recliners before she ended up on the floor.... finally after suggesting to lock her in the closet or tie her to the train table I just gave up and pacified her by saying screaming …. Just go in the playroom… get a stack of books and DON’T TALK TO ME FOR 15 MINUTES!!!!!! She was good and quiet for all of 35 seconds.

She was sooo sooo sooo sooo sooo excited that she couldn’t sleep… couldn’t rest… couldn’t nap… couldn’t STOP TALKING TO ME ABOUT IT… our “special girls only night out Margret Dean.”

She had already picked out her dress, shoes and panties… combed her hair (a huge feat for her) and decided what she’d have for dinner and snack later at the movies.  She’d been preparing for this night for DAYS....

Here she is with her "Brave app" which is actually REALLY cool... cause it reads the story to you... which means... maybe I'll get a free 3-4 minutes of peace.

… anticipating the pure joy of

1. Seeing MD

2. Talking and playing with MD

3. Eating & playing at Chic-fil-A with MD

and finally…

4. Going to the “real fe-at-er to see Brave with MD”

The night started off perfect with plenty of giggling, singing and scary story telling on our way to Lex.

Harper non-stop talking

MD non-stop talking

We continued the excitement with nuggets and the good ole indoor playground

Thanks Britt for the pic! btw... we cracked up at the little dude in the background

… even made it to the movies on time with twizzlers and popcorn in hand…..

MD, EH & Merida

And through the first half hour of the movie….

and.

then.

She got a little weird… whispering to me during the movie “Mom… I need an icecube for my head.” Of course I laughed her off and was like… “huh?... all the while shoving another twizzler down her gullet.” A few minutes later she wanted to sit on my lap… (this was the real tell-tell sign) this was followed by “Mom I gotta go potty” and then “Mom my head realllllllllly hurts” and then “Mom my belly feels weird” at which point I started texting Sebulsky to say {… umm... get ready to come save me from a nightmarish vomit-diarrhea disaster that inevitably will take place ANY… FREAKING… SECOND…}

but.

She cried when I told her Jeff was coming and said… just let me close my eyes and stay with MD in the movie… which she did… and slept… through a good ¾ of the movie… that I continued to watch and enjoy… (another crowning “MOTY moment.”)

Suffice to say we made it safely home (to a plagued house of illness nonetheless) with little buddy running a 101 temp – nice, whiney and clingy… and Harper checking in at 102.4

Two sick sad Sebulsky's

Sebulsky &  I dosed them kiddos up, covered the house with as many towels and sheets as possible and promptly put them both to bed.

Fortunately we made it through the night… sans bodily explosions.

Unfortunately we haven’t been so lucky through the day today.

Harper is devastated because our Cincinnati outing has been postponed…

However between bouts of running to the potty and sipping on ice-pops we’ve managed to squeeze in a few good games of Candy Land.

I’m off to run YET another load of laundry… folks I’m telling ya… I live an exciting life

Oh… and please keep your fingers crossed and say a little prayer for Saul… he can’t afford to get this… and if he does… someone please supply me with ample weaponry… i.e. plenty of insulin, Lysol, and diapers… oh and several boxes of wine for my sanity.

Sweet Solly with his Super Powers

EH and I are working on a story...

Once upon a time in a land far, far away there lived a little boy who had magical powers.

He was born during a time when many people were bitter and sour, angry and hateful, when people argued over silly things and often only thought of themselves. Before he was born his Mom and Dad sometimes wondered if they should bring a tiny, sweet boy into such an unpleasant world, but seeing as they really wanted a baby they decided it would be best.

At first everyone thought the little boy was like all other little boys… he played, and laughed and jumped and climbed but deep down his Mom and Dad knew there was something special about him. He was different from other kids.

Soon after the little boy turned one a terrible thing happened. He suddenly became very ill. He was rushed to the hospital and the doctor there looked at him and said…. “I think I know what’s wrong… I’m afraid I have to tell you… this boy is… too sweet.” He’s got too much sugar in him… his blood is like syrup… it’s making him very ill and we’ve got to work fast to get the sweetness out of him before it kills him.”

The boys Mom and Dad cried. They were so sad. How could it be? How could there be such a sweet boy at a time when everyone else was so bitter and harsh?

The doctor sent the little boy home and told his Mom and Dad the treatment… they had to remove the sweetness from him. So they took the little boy home to rest and worked hard to take care of him.

People from everywhere started hearing the story of this sweet little boy.  They started calling… and asking questions and wanting to know things like… how did it happen? How did he get so sweet? Is he still sweet? Can he still eat sweets?

As the little boys Mom and Dad talked about him and his sweetness and showed pictures of him and his sweetness an amazing thing started to happen.

It was then that the sweet little boy’s magical powers took hold. Almost immediately his sweetness had an incredible effect on individuals. People he’d never met, folks he’d only seen maybe once or twice… started feeling just a wee bit sweeter themselves. This pleasant, lovable, amazing little boy was using his “sweet powers” to make others become just a tiny bit kinder… a wee bit nicer.

At first his Mom refused to believe it. How could her itty bitty little boy have such a big effect on so many people…. But day after day she received calls and messages, notes and stories.  She saw the effect of his magical sweet powers and could not resist… she started to smile more, and she noticed others smiling more. 

And just like that people everywhere started doing nice things and nicer things… random acts of kindness… all because of one sweet boy.

EH is working on the accompanying pictures.... to be posted soon. haha.

 

Mount Saint Harper

Saul’s diagnosis has been hard on everyone in the family… and for different reasons. Jeff has overcome a lifelong fear of needles. I have quickly relearned basic math skills.  I’m still not sure how Mom is handling the day to day…  it appears she’s channeling her stress, aggression, fear and frustration into cleaning every inch of my house… which for me is turning out to be pretty sweet.

Harper on the other hand… is having a really difficult time.

It was easy when Saul first came home because she had missed him while he was in the hospital.  Once he was home however, she quickly realized life had changed. In many ways her small three year old world has been turned upside down.

We used to let both kids wander the house with Sippy cups drinking at their leisure, till their hearts (or bladders) were content- we no longer do this.

We used to allow both kids to “graze” typical toddler/preschool eating behaviors- we’re trying to stop this.

We used to let Harper to eat at her “special table” while the rest of us sat at the dining room table- she can’t do this anymore.

We used allow Harper to “be excused” before the rest of us were finished eating- she has to stay at the table now.  

On weekend mornings we used to get up, hang out, cuddle in bed, cuddle on the couch. On regular school days we used to get up watch Mickey, get dressed… now it’s a rushed, regimented routine of glucose checks, weighing food, feeding Saul, giving insulin.

Last night was the catalyst… Mount Saint Harper erupted… it was disruptive. violent. and damaging. She took most of it out on me screaming that she didn’t like me. that she wanted to throw me in the trash.  she wanted me to just leave. Mom tried talking to her. Jeff tried talking to her- nothing seemed to work. Fed up and stressed out I eventually forced her to bed… tears and all. As I attempted to tuck in flying arms and legs she said “Mommy I just wish you loved me like you love Saul.”

The past two weeks for me has been nothing but pure survival. In all my frantic rushing, and fixing, and checking, and stressing I totally forgot about Harper. Sure I tried to talk to her and explain what was happening, and sure she could repeat everything back to me.… but what I hadn’t allowed her to do was vent… to express her emotions… to talk about her feelings, fears, and frustrations with all this.

Thank goodness we as parents are allowed to make mistakes and fix the errors of our ways. Thank goodness today was a new day.