Tuesday, August 15, 2017

Knowledge is power

How can I know so much about my tiny man's challenges,  and still be so stupid?? 

This is the question that I kept mulling over this morning at 2am. 

I'm a firm believer in arming yourself with as much knowledge as you can get your hands on.  And in nearly every situation,  when we are faced with a new diagnosis or treatment plan, I will ask every therapist I know, (which after 8yrs is getting to be quite a list.) and GOOGLE the bee-geebers out of it.  

(I say,  "nearly every situation,  because I don't recommend googling and self diagnosing) ;-) 

In cases though, like Isaiah's, when it comes to sensory processing things,  knowledge is power, knowledge is rest, knowledge can make all the difference in learning to speak or self-soothe. 

Isaiah is not allowed outside alone.  He knows this,  we've talked about it,  he's aware.  But it calls to him.  The open air,  the allergies,  the trampoline! Sometimes it's just too much for a 7yr old to resist.  So last night while I was making plates of Sloppy Joes and trying to get everyone to the table he dashed outside,  and in his haste and stealth he fell.  Now,  there were no tears,  no panic,  he just came to the dinner table, leaving a crime scene behind him.  While I rushed through my closet grabbing clothes and shoes daddy had him re-enact the scenario,  (since he can't verbally explain what happened) and Abi begged to be the comforter and the pressure keeper.  I grabbed a picture while we waited for David to grab extra paper towels. 
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At the hospital they were great.  Took care of us immediately, and we ended up with 8 stitches a big bandaid and 4 glow in the dark stickers.  
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He only scared us one time,  when they had to use a giant needle and he went limp and his eyes rolled back for a few seconds.  But otherwise he was a rockstar! 
We filled out a thank you page for their staff who were great!
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McD's on the way home,  and then to bed.  Or so I thought. 
We put him to bed at 11:30 which of course woke everyone up and they all wanted to see his battle scar and stickers.  At 2am, David heard him crying. ALL of the brothers had gone to sleep,  and left him awake, alone.  :-( 

Here's my stupidity part.  
He doesn't respond in the "typical way" to pain,  so he doesn't feel it. SO DUMB!!!! Of course he feels it,  his body is screaming with signs.  He's holding every breath,  so it comes out every 5 or 6 seconds with a
"Kayhhhh" sound.  When we put him in bed with us,  he scoots his head under David's arm and his legs under my legs.  With his good hand he's scratching at an invisible bump in the bed.  And he's blinking,  blinking,  blinking.  
I got him some advil and we went back to giving his little body lots of pressure and about 3am he dozed off. And I laid here,  angry at myself for missing his signals.

We're going to be doing lots of sensory therapy today.  
And I'm going to be googling more about it over quiet time.

Sunday, August 13, 2017

Pain

Pain.
Noun. physical suffering or discomfort caused by illness or injury.

It seems pretty straightforward.

We feel it,  we respond In a way that will keep us from feeling it again.

"In its simplest form, the pain circuit in the body can be described as follows: pain stimulates pain receptors, and this stimulus is transferred via specialised nerves to the spinal cord and from there to the brain" Health 24

But what happens if we don't feel it? Or our brains don't respond in a "typical" fashion?

One of our children has a seizure when he experiences pain,  another giggles uncontrollably.

We were sitting at the table,  enjoying lunch after church with family.
The kids are all outside on the playground,  when Jazzy (8yrs) came in asking for a drink.  Immediately I think, "I'm pretty sure she had TWO EYES when I let her out to play.... 🤔 Something is definately amiss here.
Then right behind her,  Gabe, (the big brother, 9yrs) who is ALSO missing an eye!  🤕
Between the two of them we have a matched set of swollen and typical eyes.   Medicine administered, showers given,  and drinks of water later we realized that she was actually stung 4 more times.
They never cried or were sad, and actually "showed off" their pirate style to Uncle Timothy.

Learning to navigate in a world where "typical" doesn't apply is a challenge for all of us, but we're learning together.

Thursday, January 19, 2017

What will you choose?

Some days I have to CHOOSE Gratefulness.
In spite of the glaring reasons to be humbled by His goodness, sometimes it's hard. 
The pain is deep,  it's personal, it's lasting.
Does that mean that I can't cry?
Or that grieving isn't a necessary step?
Will God take it personally if I acknowledge that there are days that would take the wind out of any sail?

These questions are obviously rhetorical. He is a big GOD. His shoulders are broader. He is not driven by ego.

But there I was,  rifling through a broken day, littered with tiny shards of hope.  Those last shreds of "maybe".  The realization that something was gone for us, MUST be followed with,  but something new is starting.   The hole that it leaves will have new hopes rush in to fill the empty and repair the broken.   For that process to begin I needed a new focus.
That's when I remembered, I was part of a de-cluttering challenge on Facebook and I still had the laundry room to go through. 
Down to the "pit of despair" I went with my 6 black trash bags, and started purging the welcome boxes. (That's what I call the boxes we pull out when we get a new placement)
We are at our legal limit, (8 in the state of Colorado) and unless God does a miracle,  we are finished adding to our family until our oldest turns 18.  

Today was a day of letting go. 

 
Tiny pink and blue onesies, footie pajamas, little socks with slip-proof rubber paw prints, and tiny towels with built in hoods.
With each item puked from the boxes,  I remembered the babies that have worn them, the friends who donated them, and the years of my life that I have spent caring for little ones of many races, ages, and backgrounds. 


This is the end of a season and the beginning of a new one.

I am so blessed.  


I am so grateful. 

The book on top of the donate bags is part of the Face-book challenge.  2 bags made it outside before I grabbed this picture. 


Trey and Abi were keeping me company and we decided Trey should model an old pair of his jeans.  He's such a good sport.  We thought he looked very hobbit-like.

God is so good, He's so good to me. 

Saturday, November 5, 2016

Dear Ms Visor

Yesterday we recieved an e-mail from a Ms Super Visor, about our new case worker.
In 8 yrs this has never happened before. And just in case this letter makes it's rounds back to the dept, I would just like to say,  more supervisors should reach out to the families!  It wouldn't take long to copy and paste a little "checking-in" and I KNOW other families would appreciate it! 

Anyway,  for posterity sake,  and for my friends who go by the name S. Worker,  We appreciate you.

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Ms. Story,

I am S. Worker's supervisor.  She has listed you as a resource for me to obtain feedback from on how she has been doing this year.  If you could send me information on what you think her strengths are, any areas she struggles with and any additional information you would like to provide.  I don’t include the names of who provides feedback.  I try to generalize the information.

 

Let me know if you have questions and thank you for taking the time to respond to this, it is very much appreciated.

 

Thanks!
Ms Super Visor

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Good morning!  

Thank you for taking the time to reach out to Ms Worker's families!  

We have worked with 4 other counties in the last 8 yrs and this is the first time we've ever heard from a supervisor! 

Ms Worker has been a pleasure to work with!  She was only recently assigned our case, unfortunately it has gone from a straightforward case to an interesting one with DNA testing and parents who don't speak each other's languages!  She seems to have taken it all in stride.  We have had several occasions to call her, and she has always been very responsive.  If she doesn't know the answer,  she will tell you,  "I don't know,  but I'll get back to you." AND SHE DOES!  :-D 

Please,  feel free to use our names.  We have seen the "burn out" that can happen, and want her to know we appreciate all her efforts on our little person's behalf. 

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At this point,  for the sake of keeping things real,  I'll disclose the fact that I forgot to sign my name!
After all that. 
The baby started crying,  someone was making someone else scream, and a diaper needed changing,  and I FORGOT MY OWN NAME
It's the thought that counts. 
Right?

Wednesday, October 26, 2016

Together again

When Daddy and the boys came home last night,  there was lots of noise and excitement.
(You can imagine)
This sweet big brother saw our little man, so happy,  but completely overwhelmed, under the table and crawled under there with him. 
Of course I ran to get my phone,  and the moment was almost over when i got back,  but I wanted to document it. 
Fostering/Adopting has changed us all.
But mostly for the better.  ;-)
We all watch movies,  read books,  grill our therapists for every bit of information, every "thing" that might help. But when it comes down to it,  being loved in a way you can accept,  and at a time you can accept it,  is what we've learned best.  When the lights go out and the door closes  Isaiah will holler, "I lub you too mom!" And it means everything!

Saturday, April 9, 2016

Breakfast Of Fat Champions

Good morning!! 

You ever had one of those mornings where you can't decide what to make? 
You want hashbrowns, but they take too long. 
You know you need the protein in eggs, but scrambled??? Again???
A really good sausage gravy is definitely on the list, but you JUST had biscuits and gravy the day before.  (ok, maybe that last one is just me)

THIS IS THE CASSEROLE FOR YOU!!!

To start you'll need a real quality sausage gray.  My Mother-in-law makes THE BEST gravy and she shared her secret with me.  Make it all in the same pan!!  Its amazing, and it never fails me. So, here goes.

Take the 2lbs of sausage and brown it. Make sure you've broken up all the big pieces.
DON'T DRAIN IT!!!  Add the 2c of flour right to the meat and stir the bee-jeebers out of it.  The flour soaks up any grease and it'll be amazing.
Then add the milk.  I estimate 3 cups, but you want enough milk to cover the meat and flour mix PLUS a little.  Let it all come to a boil again, and POOF!!!  Perfect gravy!!!! 

Now, back to the casserole.

I layer the ingredients in a buttered 11x13 pan, and it will FILL IT!

1 lg bag of tater tots. (I buy the seasoned, but any will work)
One dozen eggs.  I read somewhere that you should beat your eggs just until there is bubbles around the edges of the bowl, and they are a buttery yellow color.
Then gravy over the whole thing. it will sink in a bit, but trust me. YUM
To top it all off I grated a block of medium cheddar cheese.

Pop that puppy in the oven at 350* for 40min. and try to distract yourself from the amazing smell wafting through the kitchen. 
(If you use the cooking time to clean up your kitchen and set the table, your momma will be so proud of you!!)

Be careful when you take that sucker out of the oven, it's heavy and now it's bubbling and the cheese, and gravy, and the sausage... Mmmmmmmm mesmerizing and deadly!


Wednesday, March 16, 2016

Sleep Study

Funny

Crazy

Tenderhearted

Silly

FAS-like

Absent minded

Appreciative

Timid

Single minded

All these things describe Gabriel, but none of them explain him. 

He has a 2yr old mentality. A 15min attention span. A 3yr old vocabulary. And a 18mo old grasp of following directions.  Once a week he wakes up in a mess.  He has holes in his mouth where he has bitten through, and his eyes don't track.  He makes 1-2 goals every 6mo, WHICH IS PROGRESS!! 

For the last 4yrs we have been trying to get him a diagnosis.  The specialty clinics all have waiting lists of 6-18months.  So, needless to say, we had all our hopes pinned on this study.  
(spoiler alert) It doesn't end with a diagnosis and confetti! ;-) 

                                     The rest of my Frappe was literally the highlight of his morning. 
                                     I promised him, just before he went to sleep that I would save some
                                     for him, and it was the first thing he said when he woke up. :-D 

                                                        
                                            They didn't have a room ready for us upstairs after the CT scan,
                                            so we waited downstairs in the main lobby, for 2hrs. 
                                            Whew! 

                                                        
                                          Once we got upstairs to our room, the real fun started! 
                                          It took this sweet nurse over an hour to place each little
                                          electrode and then blow dry the glue, the smell... 
                                          YUCK, and pass the Advil! 

                                     The "magic straw" in his hand was a topic of lively discussion. 
                                     Mostly "I hate this. And, "Can we take it out?" 

                                   I went to the dollar store on the way to the hospital and loaded up
                                   on coloring books, silly putty, books to read, and dinosaurs.
                                   Guess which was the only thing he was interested in. ;-) 
              

48hrs in this little room, with the magic straw, and helmet of glue, and on the last morning the Dr came in to talk to David.  (He came up and switched out after the first day.) 
The results of the scan were un-impressive, and the sleep study showed nothing exciting. 
Our Dr said, "While it's obvious that there is something going on neurologically with Gabe, the technology just simply doesn't exist yet for us to see what it is, or how to treat it." 

The good news?  

Gabriel still talks about the hospital as the best time of his life.  He got mom's special coffee.  He had his OWN pizza and choc cake.  And he got to play x-box, right from his bed!