Life is a Journey

My son, Alex, is 3 1/2 years old. He was diagnosed with Mowat-Wilson Syndrome at 5 days old. My son, Aaron, is highly active, extremely creatively bright. My daughter, Sydney, is verbal, talented, and snarkily beautiful. I have so many thoughts about life.... they don't hear me now.... maybe they will someday. :)

Tuesday, January 24, 2012

Slacker me, overachiever him

No matter what I feel like, my days always move forward.  Moms, you know what I mean!  Just when I feel confident about our schedule, a loop is thrown.

Tuesday during PT,  D and I worked hard getting little man to look up, crawl up.  When the ledge is 1 to 1 1/2 inches, he scales it like it's no big deal.  You add another 1/2 inch and he just stops.  The left arm goes up, his mouth goes up, but his right arm is "stuck".  Something to work on!
He also tried the Kid Walk again.  Again, not sold on this walker.   D also suggested to take Alex out of the jumpersaucer.  She said to try to get him more standing time where he can't bounce.  AGGGG.  He loves jumping!

Wednesday, M and K came to check up on the Beaner.  He sat up for them on his own!  We discussed "prepping" Alex for his PT sessions by giving him jump time before we go as well as joint compressions.   The idea of new toys was broached, but K suggested that we probably need to teach Alex how to interact with his toys.  He loves to dig in his boxes- whether it's the noise or the movement.  But simple cause and effect toys need to be shown to him many times.  We need to help him repeatedly in order for him to get it....  Also, to "play" with the toys, not just make them go.   The trampoline he received for Christmas was used as an example.... does he know to jump on it?  Does he know what it is for?  Has he watched anyone use it before?  We let Aaron jump.... then bounced his toys on it.... finally putting Alex back onto the trampoline.  A couple times, he did bend his knees and initiate a jumping movement.

After a painstakingly slow dinner, Alex proceeded to throw up right before bed.

Thursday, we saw Dr. K.  The morning had been completely chaotic with Sydney and Aaron refusing to cooperate.  By the time we got there to be adjusted, my nerve level was very high.  Dr. K reminded me that he might be in need of a break, and myself as well.  The stress of the week (starting with holiday Monday, horrible session with AG and Syd on Tuesday) was bearing down hard right in the middle of my back.  Just thinking about it makes my body tighten up even now.  So, we didn't make it to Speech/Aqua/OT.  Boo me.  On the bright side, Alex took a 3 hour nap.

Friday, I was woken at 3 am with Aaron throwing up in the middle of the bedroom floor.  So, Alex may have had the flu!  At 6:45, Aaron threw up again prompting me to call him in sick for the day.  Now my concern was, how do I get Alex to his Toddler Class with Aaron at home.  I emailed his teacher, S., and she said someone could take him for the morning.  So, swimsuit in hand, I took Alex to IDC.... without me.  

G was so excited to share that as long as she held his forearm, Alex would hold onto the shakers better.  The left hand the entire time, the right hand would at least wrap around.  He also took a nose dive out of the cube chair to army crawl to the big drum and tried to crawl up it!  Too funny, as that is exactly what D is wanting him to do.  She said she pulled him back and made him do it again!  LOL.  Love his teachers.

Saturday and Sunday.... Andy says Alex is broken...  He is just overall fussy.  Not himself.  Perhaps still not feeling tip top.  He ate lots of popcorn and chex mix at the Bingo Night and did some fantastic pointing and touching of the Bingo Cards... 

NEW SKILLS- 1.  Pushing away the food/arm/cup/bowl if it has food he doesn't want
2. Initiating steps on his own, without weight shifting.
3.  Grabbing his toy bucket and pulling/pushing to move it out of the way so he can get a toy.

Maybe.... the therapeutic listening is helping.... ;)

1 comment:

  1. Hang in there! It's okay if you need to miss a scheduled event and take a nap, the world will keep spinning and Alex is doing awesome! I promise, listen to your body and heart, it's okay to take a breather. LOVE YOU!