February 28th, 2009

Carver's day for pictures.

This is my favorite thing to do in the highchair.  I only get to do it until my food is ready.  Bang, Bang, BANG!

No Mom, I'm not the one throwing toys off my tray....

I'm getting to be such a big boy in my Rifton chair.  It helps me sit good and sitting is good for me.

Why am I so happy?  Did you notice the cannula?  Mom says that I've been satting so good that I get to have my cannula off for a couple of hours while I play.  This makes me really happy!  I do not like my cannula.

February 25th, 2009

It's been a busy week.  Monday we met with Speech Therapy and one of our Audiologists.  We really feel like Carver is responding to sound.  We have several sounds that we are working on right now.

Shhh, Shhh, Shhh - Sound with a rattle shaking

Ssssoft - Sound while stroking a soft toy

Mmmm - Sound after taking a bite of food

Ahhhh - Sound while touching spoon to bottom lip before taking a bite of food

Rrroll - Sound while rolling a ball

Pat, Pat, Pat - Sound while hitting a drum

We feel like Carver has a pretty good map on his CI.  They are getting good feedback on all of the mapped electrodes.  Carver appears to be responding to the above 5 sounds.  We'll continue to watch for response to these sounds.  We'll see the Speech Therapist and Audiologist again tomorrow.

Tuesday, we met with our Vision Therapist.  Kinnick continues to respond very well to light.  However, we have noticed lately that her left eye has quit growing.  I'm not sure what this means, but I know it's not a good sign.  She's also acting like she's having a lot of pain in this eye.  We see the eye specialist in MI next month.  We're also working on getting an appointment with a new low vision specialist within the next couple of weeks.  Carver is still a hit/miss with the lights.  Some days are really good and others, he just doesn't act interested.  I do think he can see things, it's just not clear how much he sees and from what part of the eye.  I don't think he sees straight forward.  I think he sees from the side of his eye.  I'm hoping the low vision specialist will be able to shed some light on this.

Today, we had treadmill training and OT.  Kinnick is still doing really good on the treadmill.  She's even walking sideways and backwards on the treadmill - the show-off.  Carver is doing about the same.  He just really lacks the trunk control to coordinate walking.  He spent quite a bit of time with his OT working on things to improve trunk control.

Today was also K&C's last Synagis (shot to avoid RSV) of the season.  Thank God!  I feel so bad having to put them through all of the shots.  They always get a weight check prior to the shots.  Kinnick now weighs 18 lbs 4 oz!!  Yippie!  Carver weighs 20 lbs 1.5 oz!!  Both of them gained weight.

Kinnick got a new dress.  Today was such a nice day, so she got to wear her new dress for fun.

Kinnick standing at her exersaucer.  She has no problem standing while holding things, but it makes her really nervous.  Touching things isn't her favorite thing to do.

Kinnick - always a lady.  

Just so cute!

And... these are Kinnick's funny little pony tails.  They just crack me up!

I guess it was Kinnick's day for pictures.  We'll try to get some of Carver tomorrow.  He was exhausted after treadmill training and OT today.

February 20th, 2009 Cats and Dogs

My cute little Cats and Dogs.  They're so cute and irresistible when they're all cleaned up in their cute little towels.

February 12, 2009

We met with a developmental specialist last week.  She really didn't have anything new to add.  She agreed with Carver's Spastic Quadriparesis CP diagnosis, and felt like we had everyone

on board that needed to be on board with the exception of an Orthopedic doctor.  I guess when you have CP, it is important to have your bones monitored to make sure they develop correctly.  Right now, she felt like Carver's hips, legs, and back were doing ok, but said they need to be closely monitored.  So, one more Doctor to add to the growing list.   He has a lot of tightness in his lower back, legs, right arm, and neck.  She recommended OT and PT once a month.  We were already getting PT once a week and OT Once a month.  So, we'll be adding more OT.  She was pretty pleased with Kinnicks progress, but recommended OT and PT once a week for her tactile defensiveness.  The tactile defensiveness interferes with her feeds and crawling.  So, overall, no new findings.  She doesn't need to see them again for a year, and she is writing a recommendation for Carver to go to the CP clinic.  I haven't decided at what point we want to start the CP clinic.  The only person/doctor at the clinic that we don't already see is the Orthopedic Doctor.  I may just book a 1:1 with this doctor and wait another year before going.

We had a really good day at Treadmill training yesterday.  Carver helped a little more with his walking and Kinnick is breezing through her training.   Our OT came to the training and worked with both children after they got off the treadmill.  I really felt like things went well.  Carver got a really good workout and seemed to have a lot of fun.

Kinnick is sick again.  She had a 102 temp last night and her lungs are really junky today.  We started an antibiotic again tonight.  Hopefully things will start looking better tomorrow.

February 6th, 2009 - Kinnick's new Gait Trainer

Kinnick's new Gait Trainer arrived today!

Kinnick was so excited about her new toy.  She couldn't wait for us to put it together.

Ok, so on this picture, you're going to have to look past the messy hair, milk mess on the shirt and the leaky Mic-Key.  We finished putting the walker together and stood Kinnick up to the walker.  She grabbed the handles and took off.  She walked all over the house.  It was like she had been doing it forever.  We were amazed that she would even touch the handles.  She has such terrible tactile issues.  It's the craziest thing.  I don't think she'll need the gait trainer long, at all.  The nice thing about Kinnick's gait trainer is that it came with a harness system that can be added.  Carver can use the gait trainer with the harness.  We aren't going to put Carver in it until we finish treadmill training.  I want the PT to set it all up.

We didn't have quite enough money for the Stander we wanted for Carver.  However, the funding committee met and agreed to let us use Kinnick's leftover money to pay the rest of Carver's bill for his Stander.  The Stander should be getting ordered any day.  He's still a little too short for the Stander we picked.  He's only 30 inches tall now and the minimum height for the Stander is 32 inches.  This is something that will be used for quite a while, so we wanted a nice comfortable one.  We're hoping we can find a way to make it work.

February 4th, 2009 Treadmill Training

Kinnick and Carver had Treadmill Training again this afternoon.  I thought I would post a couple of pictures of how the Treadmill Training is done...

This is a picture of Carver getting strapped in and ready to walk.  They each walk for no more then 10 minutes.

The PT helps them walk by forcing a heel to toe movement.  After walking for 10 minutes, we take them to the gym and work on different types of walking activities to reinforce the walking motion.  Kinnick no longer uses the harness and does just fine on the Treadmill with just torso support from myself or the PT.  Carver still likes to let the harness do most of the work, but will help move his feet left/right.  He just wants to walk on his toes.  He was casted yesterday for his new DAFOs.  We should get them in about 3 weeks.