Kinnick's first shoes

Kinnick's new Jumping Jacks shoes.  They are supposed to help with ankle support when she's on her feet.   They added padding under the tongue because she has such narrow feet.  Without the padding, the eyelets touch when you tie the shoes.  Great idea - I had no idea this would do the trick.

April 23rd, 2009

It was sooo nice out today.  We hung Kinnick and Carver's new swings under the deck and sat outside for an hour.  Kinnick and Carver just melted into their swings and fought back falling asleep.  

April 18th, 2009

Well, Kinnick and Carver are still sick.  This cold just doesn't want to go away.

This morning Carver quit breathing - turned purple and the whole 9 yards.  It scared the crap out of us.  Thank God for the monitor.  He alarms a lot when he sleeps, but quickly goes back up in the upper 90's.  This morning, he alarmed and the numbers just kept dropping.  His eyes were wide open, but he just wasn't breathing.  We shook him and patted on his chest to see if he just had some junk stuck (due to the cold).  Once we picked him up, he took a couple of small breaths.  I turned up his oxygen and he finally started breathing normally.   I have no idea what it was all about.  Later in the day during his nap, he desatted in the low 80's and his heart rate dropped into the 40's.   We're keeping a close eye on him.  I'm wondering if he just has a sinus infection.  

I can't wait for summer.  I'm done with these colds.  However, we are very thankful that we have not been to the hospital this winter.

April 11th, 2009

I'm sorry that it's been a while.  Kinnick and Carver got their synagis shots and then caught colds.  So, they're both sick right now.  Nothing exciting has been going on. 

April 4th, 2009 Kinnick is clapping!

Ok, some good news and some bad news.

First the good news... Kinnick finally learned how to clap her hands.  We've been trying to get her to clap her hands FOREVER.  Today, we were reviewing, Where are your ears?, Where is you nose? (She just learned these over the past couple of weeks), and I threw in, Can you clap?  She just clapped.  I'm so excited, I keep asking her to clap and pat-a-cake.  I'm so proud of her.

Now for the bad news.... One of Kinnick's contacts came out today.  I can't get it back in her eye for the life of me.  I have nobody here to help, so she's roaming the house with 1 contact.  These contacts aren't like your normal contacts.  They are really thick - especially in the middle.  They don't stay on your finger.  They roll around like a ball - I'm not kidding.  So, you have to hold all of her limbs down, hold her head still, pry her eye open with one hand and put this forever moving object in her 1/2 opened eye.   Oh, and it can't take more then 30 seconds or you have to stop and wet the lens.   If you drop it (which I did many, many, times), you have to wash it.  I kept dropping it in her hair.  It takes more then 2 hands to do all of this.  I'm hoping this gets better real soon.  She can leave the contacts in for several days or a week, but they strongly discourage it because it can cause cornea issues that would prevent her from being able to wear contacts in the future.  So, since it is a daily thing, maybe Kinnick will get used to it and just let us put them in without restraining her.

April 3rd, 2009

Kinnick got new contacts to try today.  Her right eye is at +21, her left eye is at  +23.  This isn't the final set of contacts.  She's trying them until the final test results come back.  They did a sonogram on her eyes today to see what's going on deep in the eye.  They should be able to tell me if the retinas are fully attached.  They should also be able to tell me her visual acuity.   We couldn't have gotten the contacts at a better time.  Kinnick has started throwing her glasses.  I'm not sure where this came from.  Every since we tried on the first set of contacts, she's started throwing her glasses.  The only reason that I can think of is that she was able to see better with the contacts.  Since the glasses were off when she tried the contacts, I'm guessing that she believes that she should be able to see better without the glasses.  She wore the new contacts for 6 hrs today.  She handled them very well.  She didn't even rub them out of her eyes.  She's actually acting like she's seeing more.  She used to just run into things.  Now, she stops when she gets to something and just looks at the item in front of her.  We're hoping that the final pair will be ordered on Monday.  The final pair will have a pseudo iris in the lens.  In addition, Dr. Park may be able to color match Kinnick's actual eye color and have the contacts special made so that both eyes match.  Right now, Kinnick's eyes look completely different due to all of the surgeries and everything that had to be removed to save any vision possible.

I scheduled an appointment to discuss getting Carver's second CI.  He's doing so good with the first CI.  He's listening and making new noises.  

April 1st, 2009 Carver's new stander

Carver finally got his new stander.  I'm so excited.  I was afraid that it would be too big.  He was supposed to be 32in tall to use it.  Well, he is only 30in tall, and it works just fine!  It's so easy to use and very comfortable.  We love it and Carver seems to like it, too.  He spends about 20 minutes in it - twice a day.  It has a nice play tray, so he's entertained while he gets some really good weight on his hips/legs.  I'm hoping he will start standing a little better.  We noticed a change when we used the leg splints, then we noticed more change with the DAFO's.  We're hoping this will do the trick.

Kinnick and Carver got approved for another synagis shot (RSV).  The season was extended, so they ordered another dose.  This meant another weight check.  Kinnick gained 1 lb 2 oz!!  She now weighs 19 lb 6 oz.  Carver gained 1/2 lb.  He now weighs 20 lb 9 oz.  

Carver is getting so many teeth all at once.  This makes him a little crabby.  He's started sticking his tongue out.  I think he's trying to feel his teeth.  It's driving me crazy.  Every time I look at him, his tongue is hanging out.  Crazy guy.  I try to tuck it back in and he just laughs.