New Things. Who says the brain can’t improve?!?!

Wow.  I don’t know what happened the last few weeks.  We have been so busy.  Busy fighting off colds too.  I was worried that it was going to take Santana down but he has been holding him self VERY well.  He had to go on oxygen a few times but not for long.  His cough sounds really bad yet his 02 is still 92-97% and he NEVER hits 97%… not even with oxygen… so he is fighting right through it!  Sunday when we were not feeling well we just stayed in bed and cuddled all day.  I needed that… HE needed that.

Opening Day! Go Diamond Jaxx!

My Little Lefty Up to Bat

So besides being sick, we have been VERY busy with Baseball.  It is hard dragging this kiddos around.  I was so thankful James made it to the last game because it was hard pushing Santana and then chasing my run away around.  But let me tell you!  Santana had AMAZING eyes this last Weds. night!  They are kinda hard to see cause we were under the field lights so the camera was shading his face.  But as you can see….the top is a before picture and the bottoms are his eyes working together!  I was so happy to see this because his hips and back were looking VERY bad all day… so this was VERY uplifting!

See how his eyes go different directions? This is due to his Cortical Vision Impairment

Look how handsome when his eyes are together... WORKING!

Following my snapping fingers!

Still Alert while putting him to bed. Every time the orange light came on my camera he made this face. =D

He had a rough week… besides the coughing and vomiting… but he was super agitated at the beginning of the week and did NOT like sitting on the bolster.  But then on Thursday  at Hippo Therapy, he did AMAZING on the horse.  He was MUCH more relaxed!  He didn’t cry till the very end and either way it was the end.  So awesome.  So then his OT came and she wanted to work with citrus and smelling and stuff. Oh… and with Whip cream… yum.  So we decided to take it a step further and let him taste it.  We squeezed it on a toothette and it wasn’t just juice… there was some chunks too.  And the video says it all.  You can say what you want… BUT I SEE HIM PUSHING IT TO THE BACK OF HIS MOUTH!  I think he would have done MUCH better if he hasn’t been extra junky and fighting this cold off.  I wish I would have started the video from the beginning!  He was VERY alert to the first smell.  His face was so funny.  He did an amazing job.  I want to get another swallow study but I want to practice more.  Any suggestions for those who had kids that had to learn to eat again?  Pudding maybe?  A year ago when we did the swallow study, his tongue did NOT move that much… or at all.  In fact… 2 months ago he could not do this.  I am really sad my new speech therapist who brought so many new ideas to the table left us to work with a school.  =(  We miss her.  I am just hoping he can keep improving in this department.

Forgot to mention... He held his head and pushed his elbows solo! She had her hands there in case he fell but barely touching. I didn't believe her until she showed me! PS.. we had to do the sucker or he would just fall asleep.

Not much else going on.  Just lots of baseball.  Jetts team is AWESOME.  These boys can hit!  Can’t wait until we get to the more competitive age.  =/  Maybe…
March is Cerebral Palsy Awareness Month!  Extra thoughts and prayers for Santana and all his buddies who strive to make life the best it can be!

3 Comments

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  By Liz, Kalair's mom, March 5, 2010 @ 11:15 am

  Yay, Santana! Yes pudding is a great idea. Chocolate pudding and pumpkin pie (no crust) were the two things Kalair managed to swallow on more than one occasion long after she had lost her swallow and she would get choked on her own saliva much more than Santana does. I had to stop eating chocolate pudding in front of Kalair because she loved it so much and always thought it was for her when she saw it, silly girl. And the first time she swallowed her taste of pumpkin pie I freaked out thinking I would be suctioning it back out of her lungs later but she really did swallow it. After that she always got atleast one bite of pumpkin pie for Thanksgiving. I let you know if I can think of anything else that consistency that might work. (((HUGS)))

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  By Jami Poore, March 5, 2010 @ 7:46 pm

  Great moving your tongue Santana!!! AWESOME. You keep working at that buddy!! Linz~ is that crackling noise Santana?? His secretions maybe, I couldn’t figure it out at first, but thought maybe thats what it was. I would most definitely get a swallow study done before you start feeding him. His tongue and oral motor looks so much better, but just on the precaution side, I would want to make sure he can clear his airway, be protective of it, and not aspirate. Santana you rock, keep it up, we love YOU buddy. Izak sends knuckles!!!! TONS and TONS of love hugs and prayers,, God Bless,,
  Jami Poore (Izak’s mommy)

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  By Lindsey... Santana's Mommy, March 5, 2010 @ 7:55 pm

  It doesn’t help that Santana was sick. Is sick. WE have been sick for a week now… THICK secretions and puke and everything else. He sounded like that BEFORE we started. But I had NEVER ever seen his tongue move like this. EVER. Maybe giving him the sucker as much as we have been has sparked some interest. wish I would have done it a long time ago…

  Mmmmmm pumpkin pie sounds good right about now.

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