• The Diagnosis
  • Twin Timeline
  • Us

Mama Laughs

~ Aspiring to be a Proverbs 31 woman includes laughing at the days to come. I'm starting by laughing at myself. Join me!

Mama Laughs

Monthly Archives: October 2015

A Halloween to Remember

30 Friday Oct 2015

Posted by Mama Laughs in Uncategorized

≈ 6 Comments

We’ve had 3 very interesting Halloween celebrations the past 3 years.  In 2013, the babies were new, tiny, and in the NICU still.  (How cute are these little dudes!) Big brother was Buzz Lightyear, and mostly had his fun without me, as I tended to the babies a couple of hours away.

DSC_0001 DSC_0013

2014, we were in a new-ish town, and L was in the PICU with daddy standing near.  I was home, big brother was Spider man, and N and L both sort of dressed up.  But we were split up, and due to not wanting to risk having N in the chilly air, we didn’t trick or treat at all.

image DSC_0747

2015 is weirder yet.  In addition to 7 hours in a van, we’ve spent the day doing paperwork, interviewing about family history, talking with a geneticist, and topped it off with bloodwork for a party of 4. (Big brother thankfully, escaped that part).  While I’m not obsessed with Halloween, or how it gets celebrated, I think this 3 year run is a good insight in to how our routine isn’t normal.

One of the questions I get the most when someone reaches out to me, especially if it is a pregnant or new mom, is how this is all impacting our 4 year old.  Often, they too have a healthy older child, and are so frightened by how adding special needs and all of the demands that come with it in to the family will change the dynamic.

And it does.  K should be walking the sidewalk on Halloween, with his biggest concern being the belly ache he’s getting from too much candy.  In fact, exactly that happened in 2012!

DSC_0864

But “should” and “typical” aren’t a reality for us very often.  I’m not sure how he’ll remember this, or the prior Halloweens.  He’ll likely remember being Optimus Prime.  He might remember that he missed his class party because we had to spend the day at a hospital.  He might remember that for the 2nd year in a row he didn’t go trick or treating.  But I’m hoping he’ll remember that one way or another, we spent this one together and he was happy.  That while we were at that hospital, we saw kids, staff, and family dressed up to make someone else smile. That L smiled while he told him 3 Little Pigs.  That he was a good helper.  That the lab nurse gave him a sucker for being a good brother.  That maybe, just maybe, the real treat is in making someone else have a day worth remembering. And that fun doesn’t have to be normal.

Pictures from today:

L was patient of the day!

 

K was a trooper and made the best of a long day.

 

N and daddy were resting behind L.

 

Lean “MEAN” Ninja Team!


And my crew being heroic at the house!

  
  
  

Being L

22 Thursday Oct 2015

Posted by Mama Laughs in Uncategorized

≈ 11 Comments

Our sassy pal from Sunday evening isn’t himself.  L occasionally drops seemingly unrelated clues to tell us something is up with him.   Sunday he was fussy and sad in the afternoon. That’s not like him.  Starting Monday, his urine output was low, and it has dropped each day since.  His temperature has been hovering lower and lower, and we’re working hard to keep him warm.   Monday night be vomited.  Tuesday he had a couple of seizures.

Flashback:

This is very similar to how things started last fall.  I spent 3 weeks taking him to the Dr, ER, and to get blood work, and everything consistently came back fine until he eventually crashed, and completely stopped eating.  So we drove an hour to a nearby mid range hospital, but were immediately sent on to a Children’s hospital two hours away.  (If you were following us then, you might also recall that N had a seizure and joined us that night, and also earned a trip to Children’s.  We’re a weird family!)

 

That was a 10 day stay at Riley, with what was eventually determined to be a virus.  He came home on an NG tube and hasn’t had a bottle since.  Within 10 days of coming home from that stay – he had a bad seizure on  October 25th that caused aspiration, leading to a PICU stay in St Louis that lasted another couple of weeks, and included being on the ventilator, and getting a blood transfusion. 

 

And it started with being cold, and not peeing. 

Back to current day:

L is currently cold, and not peeing.

We’ve learned to handle a lot, and be patient.  We aren’t ignoring it.  We just know that our baseline for L isn’t the norm.  Yesterday he finally reached a point where his heart rate was hovering too low, so we took him in to the ER for another opinion.  His chest xray came back clear and he had great oxygen levels, so no signs of aspiration from Monday’s event.  His blood work was hard-earned – but also came back clean.  No signs of infection.  His heart rate was hovering in the 50’s -60’s most of the evening, with an occasional dip to the high 40’s.  His temperature bottomed out around 91.  And he continues to withhold urine.  Despite all of the above nothing is “wrong” currently that we can do anything about.  We need to keep him warm, push fluids, and watch him closely.  We were on the fence about his bladder function, so they were going to do a scan to see if a bed side straight cath would be beneficial.  He must have heard that threat, because as they brought the ultrasound in, he peed!   The urine also showed no signs of infection or function issues.

So we went home!

He’s still cold, and barely peeing.  His heart rate hovered around 70 today, and he had a bit more spark in him.  We’ll continue to watch him closely, and hope he comes out of this soon.  All of these things are part of L being L.

Until someone tells me otherwise, I’m going to start referring to this as autonomic dysfunction.  I have some fellow Liss moms to thank for the terminology, and a friend/DR for helping confirm it isn’t a bad theory.  It is my belief that neurological activity (seizures for example) disrupts L’s systems, and we see the effects of that until he settles back in to his own baseline.  (Temp instability, heart rate, bladder function, digestion, lethargy, etc).  History tells us to worry about aspiration during these episodes.  He is more prone to vomit, and less able to protect his air ways.

But so far, he is holding strong.  In his own way.  And being strong is part of being L too.

image

Sitting Pretty

02 Friday Oct 2015

Posted by Mama Laughs in Uncategorized

≈ 7 Comments

Not so long ago…the boys could only handle being in their hi-lo Leckey Squiggles Chairs for shorter stints.  L couldn’t sit upright in his chair without the help of a collar.  N wouldn’t keep his head at midline.  They have both made great strides in their head control!  Check it out!

L is shown below, sitting up so big.  No collar!  But he is smiling about the toy he threw in the floor.  🙂 N is all smiles too.  I’m so proud of these two!

  
  

Visit us on Facebook!

Visit us on Facebook!

Search

Archives

  • May 2021
  • April 2021
  • March 2020
  • November 2019
  • October 2019
  • September 2019
  • August 2019
  • July 2019
  • April 2019
  • March 2019
  • September 2018
  • May 2018
  • September 2017
  • February 2017
  • October 2016
  • September 2016
  • August 2016
  • July 2016
  • June 2016
  • May 2016
  • April 2016
  • March 2016
  • February 2016
  • January 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015
  • July 2015
  • June 2015
  • May 2015
  • April 2015
  • March 2015
  • February 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • July 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • February 2014
  • January 2014
  • December 2013
  • November 2013
  • October 2013
  • September 2013
  • August 2013
  • July 2013
  • June 2013
  • May 2013
  • April 2013
  • March 2013
  • February 2013
  • January 2013
  • December 2012
  • November 2012
  • October 2012
  • September 2012
  • August 2012
  • July 2012
  • June 2012
  • May 2012
  • April 2012
  • March 2012
  • February 2012
  • January 2012
  • December 2011
  • November 2011
  • October 2011
  • September 2011
  • August 2011
  • July 2011
  • June 2011
  • May 2011
  • April 2011
  • March 2011
  • February 2011
  • January 2011
  • December 2010
  • November 2010
  • October 2010
  • September 2010
  • August 2010

Catching up!

Check these out…

#motherhood #twoifbyfaith #pictureday #ironic #twinbabynames absent csp acc ACTH activity table balance birthday C25K choose life Clubhouse Climber collie CPA dandy walker display art Easter egg hunt echo ekg failed nst First Birthday Part gender reveal green easter eggs rule happybirthdaytwins herochallenge ikea illness infantile spasms in utero diagnosis It is well kids recipes Kura latt life list lissencephaly mamalaughs medical abortion mini pizzas Mod Monkey monthly mothers day craft mri results mysterylaundry NICU non stress test no termination nst onesie stickers Pinterest pizza casserole potty training prayer prayer calendar pregnant PT second opinion Seizures shamrock shakes sneaky veggie sneaky veggies sneaky veggy special needs seating special tomato chairs spinach cupcakes Step 2 suckers are great distractions superhero therapy toddler art wall toddler boy room torticollis twins twoifbyfaith wilbarger protocol zucchini tots

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 430 other subscribers

Recent Posts

  • Landon’s Service
  • Celebration of Landon
  • Mom Alarms
  • Landon: Long Hill
  • Diagnosis Anniversary – A Girl on a Mission

Archives

  • May 2021
  • April 2021
  • March 2020
  • November 2019
  • October 2019
  • September 2019
  • August 2019
  • July 2019
  • April 2019
  • March 2019
  • September 2018
  • May 2018
  • September 2017
  • February 2017
  • October 2016
  • September 2016
  • August 2016
  • July 2016
  • June 2016
  • May 2016
  • April 2016
  • March 2016
  • February 2016
  • January 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015
  • July 2015
  • June 2015
  • May 2015
  • April 2015
  • March 2015
  • February 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • July 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • February 2014
  • January 2014
  • December 2013
  • November 2013
  • October 2013
  • September 2013
  • August 2013
  • July 2013
  • June 2013
  • May 2013
  • April 2013
  • March 2013
  • February 2013
  • January 2013
  • December 2012
  • November 2012
  • October 2012
  • September 2012
  • August 2012
  • July 2012
  • June 2012
  • May 2012
  • April 2012
  • March 2012
  • February 2012
  • January 2012
  • December 2011
  • November 2011
  • October 2011
  • September 2011
  • August 2011
  • July 2011
  • June 2011
  • May 2011
  • April 2011
  • March 2011
  • February 2011
  • January 2011
  • December 2010
  • November 2010
  • October 2010
  • September 2010
  • August 2010

Categories

  • Baby
  • Echos
  • family
  • Flight School
  • genetics
  • illness
  • K Noms
  • Letters
  • life list
  • Lissencephaly
  • Milestones
  • Monthly
  • Notes to self
  • Nursery
  • Pinterest
  • Prayer
  • pregnant
  • Pulmonary Stenosis
  • Quiz
  • Random
  • Recipes
  • Seizures
  • Special Needs Mom
  • therapy
  • Throwback
  • travel
  • tuba1a
  • twins
  • Uncategorized
  • Wordless

Stats!

wordpress stats

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 430 other subscribers

Two If By Faith

Two If By Faith

Catch up!

Search Amazon

Check out these popular toys

Blog Stats

  • 563,566 hits

Search

  • Follow Following
    • Mama Laughs
    • Join 418 other followers
    • Already have a WordPress.com account? Log in now.
    • Mama Laughs
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...