Today

Janet & Kylee are in New Orleans visiting with Kyle's brother and sister in law (Lance & Katrina) & getting their first look at not only New Orleans - but Mardi Gras!!!

Got this photo today - looks like Kylee's having a ball!!!



At the Miller house - we did some measuring of Tim's area today & put the measurements into a program that Darwin just bought. We plan on re-doing his apartment area this summer.

His bathroom is entirely too small & is having some plumbing issues. Plus the whole area is done in paneling & is very dated. His bedroom door doesn't stay shut & the closet was made with an old water pipe - so sufice it to say - it is in need of some work.

Amie was excited to help - she grabbed her toy tape measure - came down with us & happened to see Christopher's boots. So - she measured lots of things, as she clumped around in Chris's boots!! It was priceless!

Oh & we got some nice 1st person sentences from her too! She typically talks in a 3rd person style (Amie got shower, or Amie get Daddy).

Today - she said, "Amie measure Daddy" & immmediately followed it with, "I measure my Daddy" So not only did she have a 1st person sentence - she realized that she had said it in the wrong style to begin with!!

Exciting stuff!!

What does love mean - out of the mouth of babes!

Descriptions of love given by a group of 4 to 8 year-olds when asked:
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“What Does Love Mean?”
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When my grandmother got arthritis, she couldn't bend over and paint her toenails anymore.So my grandfather does it for her all the time, even when his hands got arthritis too. That's love.'
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Rebecca- age 8
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'When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.
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'Billy - age 4
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'Love is when a girl puts on perfume and a boy puts on shaving cologne and they go out and smell each other.'
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Karl - age 5
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'Love is when you go out to eat and give somebody most of your French fries without making them give you any of theirs.'
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Chrissie - age 6
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'Love is what makes you smile when you're tired.'
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Terri - age 4
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'Love is when my mommy makes coffee for my daddy and she takes a sip before giving it to him,to make sure the taste is OK.'
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Danny - age 7
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'Love is when you kiss all the time. Then when you get tired of kissing, you still want to be togetherand you talk more. My Mommy and Daddy are like that. They look gross when they kiss'
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Emily - age 8
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'Love is what's in the room with you at Christmas if you stop opening presents and listen.'
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Bobby - age 7
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'If you want to learn to love better, you should start with a friend who you hate.'
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Nikka - age 6
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'Love is when you tell a guy you like his shirt, then he wears it everyday.'
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Noelle - age 7
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'Love is like a little old woman and a little old man who are still friends even after they know each other so well.'
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Tommy - age 6
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'During my piano recital, I was on a stage and I was scared. I looked at all the people watching me and saw my daddy waving and smiling. He was the only one doing that. I wasn't scared anymore.'
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Cindy - age 8
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'My mommy loves me more than anybody You don't see anyone else kissing me to sleep at night.'
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Clare - age 6
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'Love is when Mommy gives Daddy the best piece of chicken.'
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Elaine-age 5
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'Love is when Mommy sees Daddy smelly and sweaty and still says he is handsomer than Robert Redford.'
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Chris - age 7
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'Love is when your puppy licks your face even after you left him alone all day.'
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Mary Ann - age 4
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'I know my older sister loves me because she gives me all her old clothes and has to go out and buy new ones.'
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Lauren - age 4
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'When you love somebody, your eyelashes go up and down and little stars come out of you.'
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Karen - age 7
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'You really shouldn't say 'I love you' unless you mean it. But if you mean it, you should say it a lot.People forget.'
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Jessica - age 8

16p11.2

I had a very nice talk with a mom of a little boy with the same genetic syndrome that Amie has this weekend!

First a little background on a little known syndrome: 16p11.2. This is a depiction of the 16th chromosome. There two "arms" on each paired chromosome - the "p" arm and the "q" arm.

That is the official diagram explaining where the 11.2 gene section is located on the "p" arm - if you understand it -- then you certainly didn't need this kindergarten explanation - you can help me out with the explanation next time!!

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Anyway - since this genetic syndrom is so new - it is just called by it's deletion area for now: "16p11.2" - the 11.2 area of the p arm of the 16th chromosome is missing.

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There have been very few journal articles written on this deletion to date - although I am told by our genetic counselor that the lab is working on an article right now.

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So - to the reason I am blogging this evening!

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I spoke to a Mom today that has a 19 month old little boy that was diagnosed with the same syndrome! What are his symptoms?

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paralysed vocal cord - so does Amie

speech delay - so does Amie

feeding difficulties & on thickeners - Amie just got off of thickeners in October!

difficulty with growth - so does Amie

heart defect - so does Amie (although his is a different defect)

sensory issues - his are more pronounced than Amie's (she gets scared easily)

reflux (gerd) - so does Amie

some tone issues - Amie is under-developed on her upper body - his is more one sided over the other

spina-bifida occulta - as far as we know Amie does not have this (Tim does though - weird huh!)

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I am going to send her a letter - her family is really struggling financially with all of the medical and therapy issues that they are dealing with - so please put little "JD" in your thoughts and prayers!

Hamburglar!!

The other day at work - we were talking about jobs we had done earlier in our life.

My first "official" job (after corn detasseling, babysitting, newspaper delivery & laundry for a hotel) - was at McDonald's on Cunningham Avenue in Urbana. I got that job as soon as I turned 16 & that summer they needed a Hamburlgar & a Big Mac for a few promotional appearances!

I played the hamburlar at the store a few times & had a great time!

Although looking back, it was pretty gross - because I actually pretended to steal kids's hamburgers from them with the gloves I was wearing! If someone had grabbed at my kids food - with dirty gloves that have probably never been washed - I would scream. But back in "the day" we didn't know or think about how gross that was!!

We also visited one of the local hospitals - for the life of me - I don't remember if it was Carle or Mercy (now Covenant). Just remember being there. Look how funny everyone is dressed!! This would have been the summer of 1980! Love those glasses! They look just like everyone's that had glasses back then!

I also played the Big Mac part once for the Labor Day parade!! That was a LONG HOT walk in that costume!!

Peek-a-boo

We got a new camcorder - old one finally died! Here's a little edit Darwin was able to do with it! I think this is going to be a fun little system!

Skating!

Each year in December the hospital hosts a skating party for all employees children at a local skating rink!

This year the date of the party was BITER cold and bad blowing weather - so the party got postponed to February!

The pictures below are not great - but then again the combination of:

a. Amie in motion
b. Mommy in motion
c. Amie on skates
d. Mommy on skates
e. using a cell phone as a camera

Is not horribly conducive for fabulous pictures taking - so keep that in mind as you peruse through these images!




She's just gotten them on! They now tighten down the wheels so they don't move much at all & the kids do more walking on the skates then rolling! What a great idea - didn't do that when the boys first went skating!!


These three are out on the skating floor. Dark & full of motion!

I think she had a good time! We went with Aunt Janet & Kylee! Kylee had a ball! She met several of her friends from school & skating rings around us!

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I noticed that this activity did wear her out quicker than most. For the first time I saw a noticable difference as she began to wear out. She slowed way down, wanted to sit often & bent over and put her hands on her knees.

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Just made me think that the aortic stenosis may have been more noticable or bothersome to her tonight. Not sure, it was a new activity..

Images of Amie's Heart!

I got Amie's heart images - so here are some:

This first image is of her aortic valve - it's hard to capture a still image from the moving echo clips - but the above image is what is called the para-sternal short axis view.

Here is the close up of the aortic valve. A normal aortic valve would not have the thick white band running through the top third of the image. This is the "leaflet" of her valve that is thickened and "stenotic".

This is a diagram and echo image of a normal looking aortic valve - that kind of helps show what it should look like.

This view is the apical 4 chamber view. Looking at it from this direction - the top of the image - that is a little grayed out is the right and left atriums, the bottom part of this image is the right and left ventricles. This is kind of a cool looking image.

These two images are two different wave forms that they have measured to determine the velocity and pressure gradient of the aortic valve.

The velocity they are measuring here is about 413.7 centimeters of pressure per second.

Normal is around 100 centimeters per second.

Pressure gradient is the other thing they measure - her pressure gradient is at about 43.

Normal is less than 25.

So you can see - we're probably looking at her needing something done sooner than later. And in fact if this chart is acurate - she is above both of the "severe" parameters:

Update on the update

Vicky is home from hospital & returned to school today - eating still slow and limited, but seems to be doing well.

Tim is home from the hospital today, no change in meds, just worked on behavior through therapy. Hope some soaked in.

Marcus is no longer at Betty's. We cleaned out the bedroom, cigarettes, empty beer cans - it is best that he is not there any longer. I truly hope they put him in the Lincoln Challenge - I think he's a good kid, just in a bad cycle right now.

There's a new temporary young man named Richard. He is only there temporarily, which is good, because he and Tim would be at odds pretty quickly.

And Amie's cold is much better!

Updates

Several updates - everyone has been asking how all the kids are doing at Betty's house - so here's the run down:

Victoria had surgery last week & actually is doing better then they expected, although she is being a bit picky in what she will eat - so she didn't get home until yesterday. She came through surgery really good! If the surgery is successful - she will not throw up all the time like she had been doing. They basically wrapped the top of her stomach around the base of the esophogus to keep the food in her stomach better.

Tim (Betty's Tim) is still in the psych hospital. Within the first couple of days he had been able to sneak an entire second breakfast - which in our opinion was good - because then they got to see how sneaky he is and how obsessed he is with food. It sounds like he might be coming home some time this week. We are hopeful that they have a good plan to help him with his obsessions and sneaking.

Marcus - where to start! Marcus has become the chronic run-away. He came home last week while Betty was in Peoria & brought three girls home & went straight to the basement with them. The babysitter was beside herself & called Betty who called me. By the time I got there, the girls were just leaving & the babysitter was shaking. He had started screaming at Tim & then cussing Tim and the babysitter out. I'm sure I didn't get through to him that if his goal is to get out of the system & be on his own - he can't behave that way.

Well he stayed at Betty's for about two days & then ran again (this was after the counselor told him that he couldn't go). He has been gone from Wednesday until last night! He showed up just before Betty got home with Vicky from the hospital. My Chris was there waiting to babysit Vicky for a few hours. Betty got home within a half an hour of Marcus arriving. Marcus picked the lock to get into the basement even!

Long story sort of short - he was removed from Betty's and taken to another home. In his room there were multiple dirty dishes hidden, cigarettes, a full ashtray, an empty alcohol bottle, broken glass & three holes in the walls!!

Betty has stated she is not going to take another teenager! I don't blame her! I actually think that placing Marcus in the Lincoln Challenge (as they threatened him with) would have been a very good place for him to go. It would teach him discipline and self-worth! Two things that I think alot of kids in the system lack!!

Our house - Amie is feeling better! She even told her teacher that she felt better yesterday!!

Our little biker!!

How to spend a Saturday....

There was a HUGE auction in Knoxville today & a small one in Galesburg....we hit both of them!

The best find of the whole day was this beautiful little pink bike with training wheels!! And it was a whole $5!!

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Amie is in 7th Heaven!!! She took off on this little bike like a little pro!

She could even turn corners! She took a couple of spills - but got right back up and at it!

This was her "Move It" demand that she kept giving to Daddy!! I guess he was in her way!!

EXCUSE ME!!??

Excuse Me - something doesn't look quite right!!!

It seems that while Chris had her the other day -- she was refusing to take her nap! This I knew. By the time I got home to "rescue him" around 4:30 - she was still awake & he told me that he had gone up there several times. She was out of bed on more then one occassion & she was still talking!

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Great!!

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So - fastforward two nights & I go to take her to bed, and something just doesn't look right - but what is it.

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Then I realize that her canopy is broken (I hadn't gotten a canopy cover - so it's just the bars).

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Can you see where the curve is now pointed downward??

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And upon closer inspection - there is a cross bar missing!

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So I said, "Amie LeAnn - what happened to your bed?"

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"Amie bwoke" she tells me.

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I said, "Amie broke her bed?"

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"Yah" she says.

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"Where is the other bar?"

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She points under her bed & says, "Amie hide"!!

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SERIOUSLY!!
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YUP! There it is - hidden under the bed!

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It seems that our little Curious George was hanging from the bar like Curious George!!

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:)

Make A Wish Meeting

Tonight the Miller's were visited by Amie's wish granters!

The two ladies had 15 & 5 years experience granting kids's wishes!

The first thing we talked about was the concern we had when we were first asked if we minded Amie's name getting turned in for a wish to be granted. This is evidently a common concern that people have when they first hear that a child is being granted a wish through make a wish - and one of the things they are trying to do is get the word out that Make a Wish is NOT just for terminal kids!

It's for any kid that has a life threatening condition - Amie's heart is what puts her in this category.
So our wish granters came to the house & they brought Amie a gift! They brought her a Dora tea set - breakable even! We talked to Amie about how careful she needs to be with her new tea set - although she calls it "Amie Coffee" :) They also brought her a stuffed Mickey Mouse & a train! She had a great time playing with these things.

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And she especially adored the Mickey Mouse! She kept hugging him - which lead right into what they were suggesting for her wish - a Disney trip.

But we learned so much more! Evidently - Make a Wish works with a group called "Give Kids the World" - this is a special village for Make a Wish kids! And it is so incredible - they have a star wishing area, and so many kid specific activities.
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This is something that we would never be able to give her - I guess there are meals with characters and everything!

I am so appreciative of this awesome opportunity that Amie is going to experience! Everyone's heard of Make A Wish before - but I don't know anyone that volunteers for them. I am strongly considering investigating volunteering for them in the future!

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We are probably not going to take her on this trip until fall or next spring. We do not want to do it during the summer & since we probably have at least a few years before she will have to have any procedures for her heart - we have some time!

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I'll keep you updated on the progress of this exciting trip!

Cardiology Update!

Today was Amie's 6 month cardiology appointment. This was the first appointment with her new cardiologist. The one that had followed her since birth moved away!

Dr. Hasselman was a nice guy & sat and talked and answered questions - so that's always a big plus in my book!

Here's Miss Amie waiting to go back!



She had an EKG - they don't do that every 6 months, but every other one or so. She really did REMARKABLY well! She only wiggled a little & they got a good exam!

Taking the stickies off wasn't that much fun!!



Amie gets an echo every six months & I have to tell you - speaking from experience! These sonographers are extremely PATIENT!
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She did INCREDIBLY good this time! There have been times that we've struggled the entire echo! This time, she wiggled and moved her arm around and rolled up on her side and onto her back - but didn't throw a fit of any kind & was compliant when we rolled her back (at least for a few seconds at a time!)

Dr. Hasselman's remarks were:

* We go another 6 months and return for an echo

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* Pressure gradients are slightly up again - but not convinced it's actual vs. technique (the pressure gradients are hand measured by outlining a waveform - so even the same person doing it can get small changes from time to time)

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* She can do any activities she wants at this age, but in a few years she may need to do an excersise evaluation before entering anything too competitive

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* The one thing he said that made me a bit nervous - I asked him if he was on the same timing that we probably had a good 7-10 years before she would need to be ballooned (the aortic valve) & he said, "I don't use time tables, it's possible that she may need ballooned in six months - or in another couple of years". So that made me think that he is on a shorter time table than what we had hoped.

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* On a very positive note - he said that they got a better look at the arch this time & it looks good!!

And this was to send a picture to Daddy of her red tongue! The bribery that they used for her was this red Kool-aid drink - pure sugar!!! And quite a bit of red messes to go around!!

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P.S. - I've requested a CD burned of her echo - I'll post some on here!! They are really cool!

Phil say it ain't so!!!

Phil Says "Six More Weeks of Winter!"

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Phil's official forecast as read February 2nd, 2009 at sunrise at Gobbler's Knob:

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Hear Ye Hear Ye

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On Gobbler's Knob this glorious Groundhog Day, February 2nd, 2009

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Punxsutawney Phil, Seer of Seers, Prognosticator of all Prognosticators

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Awoke to the call of President Bill Cooper

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And greeted his handlers, Ben Hughes and John Griffiths

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After casting a joyful eye towards thousands of his faithful followers,

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Phil proclaimed that his beloved Pittsburgh Steelers were World Champions one more time

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And a bright sky above me

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Showed my shadow beside me.

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So 6 more weeks of winter it will be.

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Courtesy of groundhog.org

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I say - you are wrong Phil!!!

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Please be wrong Phil!!

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Please - pretty please!!

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With sugar on top!!

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(worth a try - huh!!??)