Needed Prayers for Jane

I received some really sad news today.  One of my fabulous nurses that we've grown to love and accept into our family was diagnosed with stage 3 breast cancer.  She will see the surgeon tomorrow to discuss the plan of action.  I am so saddened.  She is such a wonderful person and is so good to Kinnick and Carver.  I can't imagine not having her here with them.  Please pray that the cancer was caught in time and that it can successfully be removed with little or no pain and suffering.  Please pray for her peace of mind.  I know this has really shocked her and her family.  She is a fighter and is always insistent on beating the odds.  She has helped so many.  I hate for her to have to go through something like this.

Jane, you are in our thoughts and prayers.  Please get better soon.

April 30th, 2009

So... You all know how upset I was over the possibility of Carver having to wait to get his second Cochlear Implant later in life.  Well, I sat down last night and composed an email to his Surgeon/ENT.  Today, to my surprise, I found the following response waiting in my email...

"Dr. Kryzer wanted me to thank you for the information you sent.  He says
there is no reason not to implant Carver within the next 4-6 weeks.  He does
want to speak to his pulmonary physician again.  He is reviewing his surgery
schedule now to see who can be moved and when he can get this scheduled.
Any questions let me know."

So, the surgery is a GO!!  

April 28th, 2009

I don't even know how to start this post...

I had the WORST ever appointment with our Surgeon/ENT today.  When we got there, they had us scheduled wrong and then tried to blame me for the scheduling mishap.  They had us down to see SLP, but the appt was specifically scheduled to see the Doctor about scheduling Carver's second CI.  Then we waited nearly an hour to see the doctor.  I booked another appointment 1 1/2 hours after this appt, so I didn't have a lot of spare time.  Once we got in to see the doctor, he says that he heard good things about Carver's progress and that he's on board with the second CI.  HOWEVER, he wants to talk to his colleages about whether or not it makes sense to proceed with Carver's second implant or wait until he is older.  I asked what had changed and really nothing had changed.  Shouldn't he have talked to his colleagues before agreeing to do bilateral implants?  He even got it approved through insurance for bilateral.  He had also given me the timeframe for the second implant.. 3-6 months after the first.  Now, he wants to talk to his colleagues about it??  What the heck!!  If I would have know this was going to be an issue, I could have gone out of state and had both done at the same time.  I'm so pissed right now that I waited this long and now the Doctor is trying to back out of something he agreed to do.  I could understand if we weren't seeing any progress, but we are.  Also, he said in the beginning that we would implant regardless of progress.  I'm so angry right now.  He also made a couple comments about how difficult it would be to map bilaterally???  What????  So, why did he take us on to begin with?  I'm concerned that his staff doesn't know how to map a CI at this point.  I've had my doubts in the past, now I'm seriously concerned.  I'm so frustrated, I don't know what to do.  

April 26th, 2009

Kinnick is all over the place, now.  She can stand up to just about anything.   We've started holding one of her hands, instead of two when we're walking with her.  We're trying to teach her to use her own balance to walk.  At first, she just got mad and sat down.  Now, she's taking a few "drunkin" steps.  Hopefully, walking with one hand will be simple in another week.

Carver is making progress with his neck control.  He still loses control of his head pretty easily, but he's sitting for at least 5 seconds, now.  This is pretty good since this is the first time that the time has been measurable.  You have to start somewhere.  We're pretty pleased with his 5 seconds.  His CI doesn't come off as much as it did.  He isn't relying on something to support his head 100% if the time.  He's showing more interest in his toys.  My guess is that it's because he can hear things now.  I put him in the exercsaucer today and he seemed to enjoy it.  He rested his head a lot, but managed to swivel around and hit the toys.  They are baby steps, but steps none the less.  Progress at any rate is good.  Oh, and he gives the best hugs.  When you pick him up and put him over your shoulder, you are almost guaranteed a nice squeeze.  It's so cute.

Oh, the many places you might find Kinnick's glasses

Since we lost one of Kinnick's contacts, she's back in her glasses until the new contact arrives.  They're special order, so they take a while.  Keeping her glasses on has become quite a challenge.  Prior to the contacts, she left her glasses alone.  We really weren't having a problem.  

Now....

You might find them on the exersaucer.

Or, hanging on the highchair.

Under the swing.

In a random place on the floor.

On her play table.

Somewhere on the changing table.

In a toy box.

If you're lucky, you'll find them on her face.

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.