Thursday, May 23, 2013

Anxiety -To Medicate or Not To Medicate

Last October, Dasha and Lily went to the Down syndrome Guru in Indy otherwise known as Dr. Luis Escobar at his Down syndrome clinic.  The clinic is a way to incorporate all of the specialists a child who has Down syndrome may need to see on a yearly basis.  It can include seeing Escobar, Orthopedics, ENT, Cardiology, Gastroenterology, Ophthalmology, Audiology, Speech, OT, & PT.  It usually involves getting blood work and may include tests as well.  We see a few of these specialists, but not all because we usually go on our own to most of Lily's doctors.  Even so, it still took 3 1/2 hrs to get everything checked off that needed to be done.

We once again addressed Lily's ever present anxiety with Dr. Escobar.  A lot of Lily's anxieties seem to go hand and hand with her sensory processing issues.  She's also had a lot of medical procedures and surgeries to warrant some of her anxiety.  After Lily dislocated her hip last January (2012), her anxiety levels skyrocketed.  She had to be put on Valium the entire time she wore her full-body spica cast just to cope with lying in a bed 24/7 for four full months with a 10 lb cast pinning her down.  After her cast was removed, we weaned her off of Valium and her anxiety stayed high.  Where things like brushing her hair and teeth were pretty unpleasant experiences beforehand, they quickly became "flip out" sessions.  She'd kick, yell and flail her arms in complete fight or flight mode.  The usual counting to 10 no longer worked.  She also didn't want to go anywhere new and doctor's offices were the worst place to take her.  We even had to give her a squirt of Valium just to get her into an SUV we rented last summer for a trip because she was so terrified to get into an unfamiliar vehicle.  Of course, within 1 minute of being in the SUV, she calmed down and went back to playing on her iPad as if nothing crazy had just happened.  Interestingly, we never had another issue getting her into the rental the rest of the trip, but that initial exposure to something unfamiliar turned her into a Tasmanian Devil.

Escobar has been trying to get us to try an anti-anxiety medication for a few years, but I've always balked.  We've also had a few doctors try to put Reagan & Kaelan on anti-anxiety meds as well, but I've read about serious negative side-effects especially with teenagers that I've had anxiety myself just thinking about giving my boys anti-anxiety drugs.  But after dealing with constant high level anxiety for 4 months, we became desperate.  Lily just wasn't functioning very well anywhere.  We made the decision to do a trial run after her Down syndrome clinic visit in October.  Lily was put on 25 mg of Zoloft once a day.  We crush the pill and stick it in her yogurt every morning at breakfast.

Now seven months later, I'm happy to report, we've gotten our Lily back.  By that I mean she's able to enjoy life again without anxiety ruling her every move or thought.  She's come out of her shell quite a bit instead of shutting down ignoring everyone while obsessively playing her iPad just to cope.  One thing I've learned through this is that when you have intense anxiety with that constant fight or flight sensation coursing through your body constantly, your brain shuts down.  Your frontal lobe stops working.  That in turn makes it almost impossible to learn, make calm decisions, be reasoned with or to think things through clearly.  For Lily, it's the little things that we notice the most that have improved.  I can now brush Lily's teeth without being kicked or hit.  I can brush her hair without her crying hysterically.  She doesn't love having either done and I do still have to count to 10, but at least she's fairly calm the whole time.  The school also says she is doing well.  She's more willing to participate in activities and last month she even participated in the 2nd grade musical without freaking out about the crowd of parents.  It was amazing.


At her check up today with Dr. Escobar, Lily stood on a scale at the doctor's office to be weighed (before the only way to get her weight was for one of us usually had to pick her up, stand on the scale with her, put her down, get back on scale to weigh ourselves and then subtract our weight from the big total just to get her weight) and she even shockingly let Dr. Escobar listen to her heart with his stethoscope.  Our jaws pretty much dropped when she gave him a high 5, answered a few of his questions and willingly walked over to him when he asked her to look at a toy (giraffe reflex tester) he was holding.  Now I'm not saying she's cured.  She still has anxiety. She still has autistic tendencies.  She still gets upset with unfamiliar things and people.  What we see is her reaction is less intense and she is quicker to calm.  We are able to talk her through many things that start to trigger her anxiety.  She has kept many of her coping strategies as well like her iPad, sensory quirks (hands over ears, ticks, flipping her washcloths) and all of her musical toddler toys.  In the long run, we are hoping that she is cognitively able to process her fears better because we have lessened the physical symptoms and for her to feel safe, calmer and happier.  So if you are contemplating, fretting about or just starting down the road of anti-anxiety medicines, I wanted to share our own personal experience which has been extremely positive. 


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Monday, May 20, 2013

Lily's Song



Matt was inspired to write this song by our beautiful daughter Lily.  :)

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Friday, May 17, 2013

Flashback Friday

Circa summer of 2000
Riley is 5 1/2. Reagan & Kaelan are 3 1/2
I know it's grainy, but seriously how cute are they?!?!
I could just eat them up.....


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Thursday, May 16, 2013

A Plethora of Pictures

I headed up to Chicago with my 2 little sidekicks, Lily & Leo, for the day last Saturday partly to let Lily see her favorite cousin's house since we hadn't visited in 3 1/2 years and Lily was pretty much convinced "Chicago" was really my parent's house here in Indy since that is where she always saw Ava.  I also made the trip to give my hair a much needed mini-makeover.  Matt was taking the rest to the Indianapolis Motor Speedway here at home, so Leo came along for the ride with me.  Once I got my hair beautified, we headed over to "Chocolate Park."  That's what my sister calls the little park right next to the sinfully fragrant Blommer Chocolate Factory (think brownies baking in the oven smell..YUM!). I think Leo kept looking around for a cupcake to magically appear while we were at the park because he became kinda crabby near the end and I knew he was hungry since he'd barely eaten anything all day.   As we were walking back to my sister's house, we stopped at the brand new Dunkin Doughnuts store near my sister's house to keep the peace.

A year ago my little Lil was just getting her full-body spica cast removed and at that point was unable to walk.  Now look at her go....

I smell chocolate.  Where's the cake?!?! 

Leo can barely tolerate swinging unless his foot touches the ground.  He slowly pushes himself back and forth with his foot.  He will freak out if you try to give him a big push.  This is an example of his Sensory Processing Disorder.

Lily also has Sensory Processing Disorder, but she is on the other side of spectrum.  She loves to swing the higher the better and particularly loves spinning in sensory swings.  Look at that face.  :)

Leo and his cousin Ava.  They were born 7 weeks apart.


#citygirl

Cousin Charlotte.  Love her! 

Lily in her happy place...getting a hug from Ava.

My new do...albeit windblown
#itwillalwaysbethesearstowertome

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We went to see Grumpa at work a few weeks ago.  Leo was on Grumpa's lap the entire time checking out Grumpa's clutter.  It was very sweet especially because Leo hasn't willing sat on Grumpa's lap since he was a bitty baby.  


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Dasha all of a sudden looking so much older.  I still can't believe she's 10.

 Izzy too!

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 Izzy went on a field trip with her class to a dairy farm.  Matt got to chaperone and took this cute picture

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As I mentioned, while I was in Chicago, Matt took these guys to the track. #gasolineally

Kissing the yard of bricks at IMS

Where my family prefers to spend the month of May in Indy.

The Pagoda at the Indianapolis Motor Speedway. 
 #thegreatestspectacleinracing

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We got 4 free tickets from Down Syndrome of Indiana (donated by the Pacers) to a Pacer's game and Matt took Riley, Dasha and Izzy.  Dasha loved the Dippin Dots.

#nosebleedsection ;)

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Another lovely sign of spring is our Red Horsechestnut blooming.


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Friday, May 10, 2013

Flashback Friday - Meeting Izzy For The First Time

I flew down to Guatemala City in early March of '07 with another mom, Tera, who was also adopting a little girl when Izzy was 3 months old.  It was a short visit, but I loved every second I got to spend with Izzy.  We mostly stayed in the hotel room and got to know each other.  I fed her bottles, gave her a couple of baths and played dress-up with some of Lily's baby clothes.  We snuggled in bed, I sang her songs and Skyped with Daddy.  We also had quite a few photo shoots evidenced below.  She was a such a sweetheart. The next time I got to hold her was 4 months later when she came home when she was 7 months old.











The Westin had gorgeous flower arrangements everywhere.  This picture was taken in the lobby.

Izzy and Emma



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Thursday, May 9, 2013

A Little Bit of This and A Little Bit of That

Reagan got braces about a month ago and the first 2 weeks were pretty rough on him.  He has a lot of sensory issues and is especially orally defensive so it was quite the adjustment for him, but he's bounced back and is finally smiling again.
He really is such a sweet great kid.
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Leo brought me two pieces of the little plastic cake you see in the picture below.  I asked him if he was telling me he wanted cake and laughed.  He quickly ran over to his "letter table" and was very excitedly jumping up and down and squealing.  So I walked over and saw the word "cook."  It was the first time he's ever used that kind of communication with me.  Blew me away.  Now we read his collages very carefully to see if he's trying to tell us something.
In case you were wondering, he had a panCAKE for breakfast and a dumpCAKE for a snack that day.

His "letter table" has turned into Leo's version of a bizarre word find puzzle.  It almost looks like a piece of artwork, doesn't it?  I rollerblade a lot so I guess Leo has been studying my skates.  I love the different types of letters used to spell it too.
How many words can you find in the picture???
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Lily is really getting around well, but still prefers to be upstairs playing Goldilocks with everyone's beds, but is in her room the majority of the time.  We are excited because she just started walking up and down the stairs holding the rail by herself again.  This was a skill she'd mastered just before she dislocated her hip last year.  She has regained a lot of her strength, but her confidence is still somewhat low at times so we continue to have to push her to do most physical activities.  Her legs are still different lengths and her Orthopedic surgeon is monitoring that for now.  He's hopeful her legs will even out as she grows.  She also had a check up with him last month and he is going to leave the steel plate in her hip for at least another 6 months.  He is very happy and optimistic with her progress and he doesn't foresee any future issues with her hip. 

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My sister, Susie, came down from Chicago for a visit and stopped by with her two girls, Ava & Charlotte.  The girls were thrilled especially Lily (who is obsessed with Ava and Charlotte).




Lily gazing adoringly at Ava
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Leo lovin' his new bungee sensory chair from Target ($30).  It's awesome!!
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I just love spring!






My fru fru kitty with his plume tail was zipping all around the yard while I was taking pictures.


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