Friday, January 30, 2009

January 30th, 2009

Kinnick and Carver did more treadmill training this past Wednesday.  Kinnick walked 9 minutes on the treadmill with us holding her torso.  She doesn't like the harness.  She's doing really good with her walking - just needs to work on her balance.  Carver walked 10 minutes with the harness.    He's still trying to walk on his toes.  He gets molded for his DAFO's on Tuesday.  

Kinnick and Carver's OT worked with Kinnick - trying to teach her to side step.  She also helped Kinnick walk from the great room to the kitchen by feeling the furniture all the way to the highchair in the kitchen.  Kinnick seems to be doing a little better about touching things while walking.  She's pretty picky about what she'll touch.  Kinnick's PT is also working with Kinnick to teach her how to get from sitting to standing.  I don't think it will take her long to figure it out.  She really wants to pull herself up.  We're still working with teaching Carver to sit without help.  He still really struggles, but is doing a little better.  

Kinnick and Carver got their synagis shots again on Wednesday.   They always get weighed before getting their shots.  Kinnick gained 4 oz.  She now weighs 17 lb 14 oz.  Carver gained 2 oz.  He now weighs 20 lb .05 oz.  He finally hit 20 lbs.    

We're still working to get off pureed foods.   Colds don't help.  Anytime they get colds, the eating goes down hill.  In addition, the fact that they are quickly approaching 2 years old doesn't help.  Those terrible twos.   Right now, they're eating pretty good for us.  We are still breaking up puffs and mixing them into their pureed foods.  We are putting 8 puffs in Carver's fruits and vegetables.  Kinnick is getting 4 puffs in hers.  We're hoping that if we gradually increase the crushed puffs that they'll get used to eating foods with a little more texture and consistency and will graduate to a little chunkier baby food.  So far, it's going pretty good.   In fact, Nurse Marci fed Carver 1/2 of a baby cookie the other day - not crushed.  He loved it.  He just gets carried away and we freak out and dig the cookie back out of his mouth.  He still gags a lot.

We see a developmental specialist on Thursday.  I can't wait to see what she has to say and to hear her suggestions.

I contacted a new eye doctor this past week that specializes in low vision and the blind.  He is new to Wichita and comes from Michigan.  In fact, at one point he worked at William Beaumont Hospital - where we travel several times a year to see Dr. Micheal Trace.  I'm excited to meet with him.  Prior to meeting him, I'm going to have a phone interview with him.  Our phone interview is scheduled for Wednesday afternoon.   He's supposed to be able to fit babies with contact lenses that have a built in iris replacement and a yellow color or tint that can help make lights more crisp.  Kinnick really struggles with light sensitivity and if she has light perception, it would be fabulous if we could make the lights more crisp.  If you've ever driven at night and the lights were blurry, this yellow color or tint that they add to the lenses makes the blurred light more crisp.   He's also supposed to be able to tell me K&C's actual visual acuity.  This is something no other eye doctor has committed to being able to do.  Because he is able to determine their visual acuity, he should be able to fit them with the best possible lenses and should be able to recommend the best rehabilitation program for them to optimize the vision they have.  I'm not sure how much he knows about CVI (cortical vision impairment), but he works with stroke patients and traumatic brain injury patients, so my hope is that he knows a lot about CVI.  Perhaps he can offer a rehabilitation program for Carver to help with his CVI.

Saturday, January 24, 2009

Pictures from our trip to Jamaica

Finally, a few pictures of our get-a-way to Jamaica.  Bob and I got married in Jamaica.  This was our first trip back.  The disposable water camera didn't work well at all.  In fact, the majority of the pictures either didn't turn out or were so fuzzy, you couldn't see what was in the picture.  They were very disappointing.  So, this is about all I could find.   They're not great and any picture of me in a swimsuit was quickly booted!

We took a trip into the jungle to do some zip lining.  It was a blast.  This is just a picture on our way into the jungle.  Unfortunately, none of the zip line pics turned out.

This is a picture of the vehicle we had to ride in to get up into the jungle.

We took a trip to Rick's cafe in Negril.  This is where locals go to do cliff diving.  We stayed for the sunset.

If you look way up in the tree, you can see where this local dove from.  Bob jumped from a 50 foot cliff.  I was too chicken.  I don't do heights well.

This is a picture from the beach at our resort.  We stayed at the Riu Montego Bay.

This is a picture of a snorkel outing.  It reminds me of "Lost as Sea".

It's interesting to see how the Jamaicans really live.  This is a typical home or neighborhood.

Here are some more of their homes.  This is how the majority of the Jamaicans live.

Who does this look like?  Chris Rock?  This was our bartender.  

This is a another picture from the beach at the resort.

Another picture from the beach.  We spent a day kayaking and paddle boating.  You could also go sailing.  All of this was included in the "All inclusive" package at the hotel.

This is a picture of the pool area on the resort.

This is just a picture taken while walking around the resort.

This is a picture of the view from our room.  We didn't pay for an ocean view, but we could still see the ocean.

Thursday, January 22, 2009

January 22nd, 2009

I guess it's been a while since I updated.  So, let's see...  

Carver got a new map for his CI.  I really think he's hearing us with his CI on.  If we sit behind him and say Shhhhhh, he laughs consistently.  We try to make sure that we aren't blowing on him.  At first, we thought maybe that was what he was laughing at.  We are definitely not blowing on him, so we feel like it is a positive response.  He also laughs when we laugh.  It's really cute.  We have 2 different audiologists and 2 different speech therapists working with him.  One set in our home and one set in the office.  We see 1 of each every week.

Treadmill training has been a little rough.  K&C have both had colds the past couple of weeks and this makes them a little crabby.  Carver cried throughout his entire walk on the treadmill (all 4 minutes).  Kinnick didn't like being restrained, so she cried through about 50% of her walk (8 minutes).  Next week, they're going to just hold her torso while she walks on the treadmill.  Hopefully she'll like it better.  Both of them are doing really good.  Carver just doesn't put enough weight on his legs, so he's hunched over the entire walk - letting the harness do most of the work.  He also walks on his tip toes.  So, we have an appt to get him fitted for DAFO's.  These are little boot like braces that will help support his ankles and will help keep his feet flat so he can't walk on his toes.  Once we get them, I'll take pictures.  They are molded to fit him and are shipped off to be made, so I'm not sure how long it will take.   Our gait trainer (medical walker w/harness system) should be ordered by the end of the week.  We're excited to get this.  It's basically the same system used for treadmill training.  We'll be able to work with K&C at home.

Kinnick is really trying to find ways to be more mobile.  She now sits on her bottom and turns in circles - kicking her heels on the floor all of the way around in a circle.  I found her kneeling at the rail of her bed, hanging onto the top part of the rail one night.  Last night I found her sitting in her bed with both legs through the holes between the slats.  She was sitting up - legs dangling out of the bed and she was chewing on the upper part of the rail.  This means that she is able to pull herself up.  So, I think she'll figure out how to get places really soon.

Carver is still rolling all over the place.  His neck control continues to improve.  I finally picked out a stander for Carver.  We're getting the Tristander 45.  It's a "tumble forms" stander.  It has lots of padding.  The only bad thing is that he's supposed to be 32 in. tall to use it.  He's only around 30 in. right now.  I'm not sure how well it will work prior to being 32 in.  I have the funding and don't want to lose it.  I could order a different stander that fits him now, but it just doesn't seem right for the long term.   These things cost around $3,500.00, so it's not something that you just throw away and buy another one in 6 months.

Work is going good.  I'm just getting back into the swing of things.  My days go much faster.  I'm adjusting and think part time is going to work out just fine.

I finally took my pictures to be developed.  They'll be back tomorrow, so I'll try to get them posted by the weekend.

Tuesday, January 13, 2009

January 13th, 2009

Sorry, no pictures, yet.  I just wanted to give a quick update.

I went back to work yesterday.  It's nice to get a shower and be out of the house by 7:00am.  I'm adjusting to less time at home to do my other full time job - ordering meds, supplies, making appts, keeping track of insurance, cleaning, and etc.  My nurses are making the transition very easy for me.  I don't worry about the babies, at all.  I know they are in very good hands while I'm at work.

Shortly before Christmas, I ordered a baby walker for Kinnick.  My PT didn't recommend it, I just all of a sudden decided that Kinnick needed one.  I'm so glad that I got it.  She's always sat in one place and just felt around for toys to play with.  Now, she's all over my kitchen exploring things.  She touches the blinds, the oven, the cabinets, the chairs, and anything else she comes across.  She can't wait to get moving when we put her in the walker.  She immediately takes off.  At first, she kinda hopped in it to get around.  She really didn't know what to do to get it going.  Now, she digs her little heals into the floor and goes right/left/right/left.  We hooked a portable O2 tank to the back of her walker, so she doesn't have O2 tubing in her way.  She's definately figured out left/right.  She was having a hard time figuring this out before the walker.  Now, she's also hanging onto our hands (or we hang onto her trunk) and free walking all over the house.  She can't do it without our help, but this is a big change from where we were before the walker.  We start a treadmill class tomorrow.  The treadmill class was supposed to teach her left/right.  Now, I'm not sure whether she needs it or not.

Carver sat in the exersaucer today and actually held his head up pretty good and played with his toys.  He's starting to put a lot more weight on his legs.  He still buckles at his knees quite a bit, but this is a change from a month ago.  A month ago he wouldn't even attempt to put weight on his legs.  He's doing the treadmill training with Kinnick.  He seems to understand right/left, he just can't hold himself up.  The treadmill training uses a harness system that suspends the child above the treadmill.  The suspension covers most of the torso - going up the chest and under their crotch.  It has quite a bit of support, so it shouldn't have any problem holding them above the treadmill.  We'll do the treadmill training for 3 months unless we aren't seeing any benefit from it.

Carver sees his Audiologist tomorrow.  He'll get new maps for his CI.  Most likely the new maps will just be to increase volume.  I'm not sure how many map changes it will take before we are at normal volume.  I'll have to ask that question tomorrow.  

That's all for now.  I'll try to get my pics developed so I can post a few. 

Sunday, January 11, 2009

January 11th, 2009

We're back from our much needed time away.  We had a great time.  While we were away, Kinnick managed to break her BARD button.  I have no idea how she does it.  It's all solid plastic.  We were told it would easily last a year.  Well, it lasted about 4-5 months.  I guess this is better then the 4 days the Mic-Key buttons were lasting.   I swear she must have battery acid in her stomach in order to eat through these things.  She's using a back-up Mic-Key until the new BARD comes in.   My nurses put the first back-up Mic-Key in on Tuesday.  Well, by Friday she was on her second back-up Mic-Key.  I'm hoping the new BARD is here by Monday or Tuesday.  I don't have anymore back-ups other then Carver's back-up.  Crazy kid.  Other then that, everything went smooth.  Thank you Tonya (my sister), Nurse Marci, and Nurse Jane.  The were all quite the team while we were away.  With these 3 people, there is no worries while you're away.  All of them treat our kids like their own.

There really isn't anything new going on.  K&C are both still on their O2 continuously.  It's difficult to wean in the winter months.  Kinnick is on 3/4 lt while Carver is on 1/8 lt.  

I did find out that I am able to get my medical card for both kids based on disability.   They don't qualify for SSI, but they do qualify for the medical card.  I don't even have to pay a co-pay.  It's based on their income.  Since they have no income, I don't have to pay anything.  What a relief!

I head back to work tomorrow - part time.  Bob starts a new job tomorrow.  He was laid off in December.  He's still in the car business.  He's just not selling Hondas anymore.  He's the New Car Sales Manager for Brandon Steven Subaru.  So, if you're in the market for a new car, ask for Bob - he'll make sure you get a good deal.  

That's all for now.  I'll post pictures of the trip soon.

Saturday, January 3, 2009

January 3rd, 2009

Kinnick, Kinnick, Kinnick..... Now that she has learned to sit up, that's all she wants to do.  We put her to bed and when we check on her she's up playing.

Caught in the act....

Oh, Hi Mom, I was just tending to my baby doll.....

Carver sporting the green bandanna Nurse Marci gave him.  Thank you Marci.

Thursday, January 1, 2009

January 1st, 2009

I hope everyone had a Happy New Year!

Kinnick and Carver rang in the new year with synagis shots.  This meant a weight check.  Carver lost weight.  He has something against weighing 20 lbs.  He weighs 19 lbs 11 oz.  Kinnick stayed the same at 17 lbs 10 oz.  She had been sick and didn't eat anything for 2 weeks.  We were lucky that she didn't lose any more then she did.  She was getting tube fed just formula.  

Carver is managing to get around without crawling.  He just rolls and scoots.  The other day, we found him under the little play table..

Here's a picture of the "Gangster" hat that I promised.  It's not very attractive, but it really helps hold the CI in place.  When going in public, we just put the bandanna on top of the "Gangster" hat.  I'm still waiting on my Pilot Caps.  They're supposed to be here next week.   If the Pilot Caps don't work, I'll just invest in some colored "Gangster" hats and more bandannas.