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Category Archives: Lissencephaly

A Super First Birthday

02 Thursday Oct 2014

Posted by Mama Laughs in Lissencephaly

≈ 6 Comments

Tags

birthday, lissencephaly, superhero, twins

We celebrated the boys’ first birthday on September 20th with some very special family and friends.

 

We enjoyed cupcakes and ice cream, while the twins LOVED some cool whip!

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We helped them get a taste, and then they dove right in!  In fact, they got seconds, and thirds!

 

We opened presents.  The boys received clothes, toys, diapers, therapy items, and money to purchase more therapy items; all of which we were very thankful for.   The birthday boys were very lucky to have so many great helpers!

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My presents.

My presents.

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The costume gives him super strength.

The costume gives him super strength.

<3

❤

 

Happy birthday Landon!  I give you a kiss!

Happy birthday Landon! I give you a kiss!

 

We wanted to include the boys in an activity they enjoy (getting rides in their chairs) and let the kids show off their superhero costumes.  So what better way than a superhero parade!

 

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And wouldn’t you know it, every good superhero parade turns in to a photo shoot!

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And we had to include Landon and Nolan’s favorite activities; snuggling and smiling!

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And no party is complete without a cramped, awkward photo with around 30 people on a set of stairs.  (I’m really pulling for this to become a tradition every time we have a get together…you’ve been warned.)

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It was a celebration befitting of heroes.  Thanks to your participation in the hero challenge, we were also able to display a running slide show of some of the awesome, thoughtful, kind things that have been done this year in Landon and Nolan’s honor.  It was wonderful to see, and wonderful to share.  So THANK YOU for making that possible.  In fact, the ripple effects of that are still rolling in.  I’ll share some of the specifics of that soon.

We were surrounded by many of the very people who have helped us find strength this year.  They’ve traveled hours numerous times to visit, help, cry, and laugh.  They’ve gone through the shock of the diagnosis with us, held our hands, dried our tears, kept our then 2 year old when we had to focus on the newborns and the unknown.  They’ve paced the NICU, rocked our babies, washed our bottles, washed our clothes, and cooked our meals.

We were surrounded in spirit by many more.  Some sent cards and gifts, some from the heart, and others from the pits 🙂 and many more sent encouragement and well wishes.  They’ve shared our burden, lightened our load, and held us up in so many ways.  And one year later, the support crew only grows.  Never faltering.  So we celebrated a super first birthday, and we thank you for a super first year.

 

 

 

 

 

 

 

 

 

 

 

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A Haven of Smiles

23 Tuesday Sep 2014

Posted by Mama Laughs in Lissencephaly

≈ 3 Comments

Tags

lissencephaly

The boys and I are settled in for the night at the Haven House. We get started bright and early tomorrow at Children’s.

We start at 7:00 with follow-up EEGs, and move on to vision appointments, and neurology follow ups. We hope to wrap up by 4:00 and still get home in time for dinner.  Sounds easy enough, right?

 

Here are some photos of our new stroller!  What we lost in ease of transition (baby carriers are sooo easy to snap in and out of the old one) we gained in high fashion, better off-road capability, and storage.  There are other perks to this one too, but for now, I’m just glad they are cozy in it.

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This place is similar to a Ronald McDonald house.  We have a nice room, and I’ve had a warm meal.  I paid less for a room with no tv.  Lucky for you, that means nothing distracted me from this party!

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I’ll put updates out there sometime soon regarding how tomorrow goes.  I’m not expecting big changes in their EEG, because we are still seeing spasms, even the occasional long one.  I’m hoping their background noise has lessened.

I’m anxious to see if we can do any better visual assessments.  The boys have been awake more lately, especially Nolan.   So we have that going for us.

Both boys have the sniffles, and Landon has been struggling with feeds the last few days.  Some of his more recent choking events have been down right scary.  We’ll talk about all of that tomorrow, as well as the potential breakout of Enterovirus D 68 locally that I hope to learn more about once more details become available.

Until then…we better get some rest!

 

 

Like brother like…brother

16 Monday Jun 2014

Posted by Mama Laughs in Lissencephaly, Seizures, Uncategorized

≈ 2 Comments

Second verse, same as the first…

I am back at children’s, but with Nolan this time.

Last night, during his bed time bottle I felt Nolan make an odd movement in my arms. It caught the attention of myself and Mima and sure enough a second movement followed.

I took him to a spot where I could let him spread out and make another video on my phone. It was different than Landon’s, and less frequent, but it still had the signs we are learning to watch for. A quick tensing with a slower release. An unnatural movement, usually repeated in a cluster.

Mima and I counted about 7 spasms in 10 minutes. Not quite as startling as Landon’s quick onset, but concerning nonetheless.

I called children’s again this morning and sent Nolans video. They were less sure than with Landon, but it was concerning enough to merit an overnight EEG for Nolan too.

So here we are.

Nolan is doing well. I have hit the button plenty to mark potential seizure activity. I won’t have official feedback until tomorrow. He is eating better than normal, and resting now. Such a trooper, and I know Landon would be proud. I sure am.

In the meantime, it is amazing the peace I feel compared to when similar news broke only 5 long days ago.

I was listening to Mandisa again on the way down and these words struck me:

So I’ll learn to love these days
Life along the way
In the middle of the crazy
God your love is so amazing
Through the ups and downs
You’re the only hope I’ve found
The Lord you meet me in the madness

And today, I feel met in the madness.

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