Kate and The Tridas Center Yesterday Kris and I took Kate to The Tridas Center.

It was exciting because we might finally get some answers as to her delays. It was scary for the same reason. Something about blissfully living in ignorance.

We got there 30 minutes early (ours was the first appointment of the day), which was about 7:30 AM. Neither Kris nor I had slept the night before, but it didn't seem to matter.

Dr. Tridas and Nurse Julie met us...Julie taking Kate away to play and observe and Dr. Tridas meeting with us to hear all about Kate. Thankfully, we had about 2 hours to tell him her life story. Kris supplied him with the technical/medical details and I told him what we were looking for, help.

This was really just a first step, a basic evaluation of Kate (and probably us) so not much came of it. He did say she was not autistic and that she didn't have Pervasive Developmental Disorder (PDD). Both very good things.

That gives us hope that Kate will be able to live a pretty normal life...even if we can't. :)

So we await the next steps...

Labels: family, kate

  ¶ 2/10/2010 10:31:00 AM   2 Comments Links to this post

  Random Things: Volume #13 A brief respite for me...I get to work remotely this week.

Admittedly I have gotten into the habit, finally, of traveling, so it's a little strange to be home (never thought I would say that). There is no shortage of respect from me for those who travel all the time. It's a hard life.

OBIEE Performance
Our Usage Tracking reports are a tad slow and I've been looking into the logs trying to decipher them. Unlike the database which has a multitude of resources, OBIEE has hardly any. Christian did point me to this Mark Rittman article, which is good, but not great (not because the author is lacking...there just isn't that much to go on). rnm1978 suggested MOS, but I don't have access right now...besides, it seems to be having problems again anyway.

While I'm on the subject of performance and rnm1978, I should link up to this article which highlights 3 recent posts by Cary Millsap. All 3 are excellent reads and require your immediate attention.

Kate
The reason I am home this week is so that I can go to a Doctor's visit with Kate. We finally found a place where they might be able to help diagnose her. Most of her doctors have been more concerned with keeping her alive (healthy) and haven't worried too much about her developmental delays (still not talking...but she can sign "daddy"). Anyway, the place is called The Tridas Center and we're excited/nervous. Excited about finding her better help and nervous about the possibilities (more specifically, what a diagnosis would mean).

Labels: kate, obiee, random

  ¶ 2/08/2010 03:49:00 PM   8 Comments Links to this post

  Kate is 5! Wow.

It's really hard to believe.

It feels like she has been here for about 3 million years...in a good way of course.

Kate continues to impress and delight us each and every day naturally. This has been a good year for her...I believe just one pneumonia induced hospital stay, and that was all the way back in February.

In January she began her Human Growth Hormone (HGH) treatments, this December, she managed to make the growth charts for the very first time.

This picture was taken yesterday...as today I'm in the great state of Alabama (where apparently you cannot buy beer on Sunday...after a day of travel I was really looking forward to that beer, no worries though). Sucks I can't be there but that's life.

Her mother has kept her healthy and happy. She uses the Bush Doctrine to keep her minor illnesses from turning into hospital stays. What Kris has done for Kate is nothing short of amazing.

This summer Kate attended the Blossom School for the Deaf, where we believe she had a great time. Does she sign? No...well, she knows "all done" and "more." I think she knows "Daddy" but she puts my thumb on my head.

She started back at her school from last year this fall and things have changed for the better there. Teachers have assistants now so it's no longer 18-1.

(Yes, this is all over the place...)

She's begun to point at things. She makes a "funny face" which she learned from Yo Gabba Gabba.

What else?

I don't know, my brain is not working too well tonight. I'll leave it at that.

Labels: family, kate

  ¶ 12/13/2009 11:32:00 PM   2 Comments Links to this post

  Losing A Job: The Aftermath So I've got a little experience in "losing" my job. Laid off, furloughed, rehired, resigned (and walked out), new job, laid off.

Of course I didn't lose one of those jobs...I know right where they are. I just can't or won't go back to them.

Fortunately for me, I've made a lot of good friends online. Very supportive friends. It makes "losing" a job that much easier.

Of course there's more to it...the effect it has on the family.

Kate...she doesn't understand yet. She just smiles and laughs and makes everything go away.

LC, however, is starting to grasp it. He doesn't say anything to me, but he does say stuff to his mother.

"Are we going to have to move back to Gainesville?"

"Is poppa going to pay our bills for us?"

You know...fun stuff like that.

Strangely, not to long ago he was always asking me to fire myself so I could be home all the time (it's the only way I get a vacation these days).

And then there's the wife, the lovely woman who agreed to marry me (yikes!) and has supported me through all of this. Without her, I could not have made it as far as I have.

When we met, we were polar opposites. I was a bit on the timid side and she...well, she doesn't have much of a filter. A perfect match!

Over time I have found my voice and she has muted hers (only a little). We're meeting somewhere in the middle (at least that's what I tell myself).

Kris does not work. She held LC in her hands and told me she didn't want to go back to work. I couldn't argue. Although she did work briefly but was let go because LC had an ear infection and needed medical attention. We didn't fight it. She's a stay-at-home mom, and we like it that way. She's been able to help Kate out with doctor visits, physical therapy, speech therapy, HGH injections...the list goes on and on.

Since she doesn't work, she feels, at times, out of control. When I "lose" my job, that feeling is heightened.

Not really sure what the point of this was...it's not to feel sorry for me, that's for sure. Just a warning to those out there in a similar situation. It doesn't effect just you...it effects your entire family (I haven't even mentioned my parents, or Kris' parents).

The only advice I can give to help alleviate this is:
1. Have enough money in the bank to weather the storm
2. ...OK, just 1.

Labels: family, humility, kate, kris, LC, work

  ¶ 11/05/2009 11:38:00 PM   3 Comments Links to this post

  Blame Drew's Cancer If you haven't heard of it, go here. I hadn't heard the story until Jake mentioned it to me.

Here's the short of it, this guy, Drew, finds out he has Hodgkins Lymphoma, Stage 3. Instead of feeling sorry for himself, he starts this...well, movement. The essence of the movement is to blame everything on his cancer. If you use Twitter, tell us what happened, and then use the hashtag #blamedrewscancer.

The example provided: I lost my keys today. #blamedrewscancer

Simple huh?

It will eventually show up on BlameDrewsCancer.com (some fancy technology thing).

Check out Blame-a-Thon as well.

When Drew beats Cancer we hope to have sponsors that will donate a dollar for every participant to our partner, LIVESTRONG.

It reminded me of myself post Kate incident. I'd jokingly try to get away with all kinds of stuff saying something to the effect of, "But my daughter is in the hospital, she almost died."

I'm pretty sure I didn't use that until she was actually home though and well on her way to recovery. I'm also pretty sure I used it for quite some time at work after that. Apparently it didn't work too well for me. :)

Labels: kate

  ¶ 8/25/2009 12:44:00 AM   0 Comments Links to this post

  Kate: Summer Wrap-up Is summer over already?

It is for Kate. She's been going to camp at the Blossom Montessori School for the Deaf for the past 8 weeks or so (no, I don't know exactly, I'm Dad).

The teachers there are awesome and have really taken to Kate. Who wouldn't take to this beautiful little girl though?



It's very, very difficult to get a picture of Kate. She either closes her eyes as soon as she sees the camera or she turns away, thus, the blur.

Sadly, Friday is her last day. We were hoping to put her in school there full-time this fall, but that's not going to happen. There had been a small chance we could get her in on the McKay Scholarship, but it looks like she has to go to public school for one more year to qualify. Neither Kris or I are happy about this, but the McKay Scholarship will cover (most of) her educational costs for the next 17 years. You do what you have to do.

As I mentioned at the beginning of the summer, one of the biggest benefits of Kate attending Blossom was that I would get to spend more time with her; the school is right across the street from where I currently work.

The first hour of my mornings have been spent listening to song #6, an old DJ Laz song, over and over and over and over and over. She won't let me change the song. As soon as I do, she starts to "fly away" (I need to get video of this) and signing (her version anyway) "more." In no uncertain terms, she's pissed.

Once in a while I get to pick her up as well. I get a much better reception that Mom does, which is only natural. By the time I get home, my face is tired...from smiling so much. Awesome doesn't really do much to describe it.

Today I had to go pick up her car seat because my mom forget to grab it when she picked her up (a day off for Mom). As I walked over, I ran into one of her teachers who was leaving. She made me promise to bring Kate over during the year so that she could see her, as she (the teacher) wouldn't be at school on Friday.

We began to talk about how wonderful Kate is and I said,

Kris and I have struggled with the word, but technically, Kate is retarded (physically delayed, possibly mental...). If I have to be retarded, I hope I can be retarded like Kate.

Or something like that. Point is, you would be hard pressed to find a happier child than Kate.

The teacher later commented, "As soon as Kate walked into the door, she walked into my heart."

If I weren't so manly, I would have cried. ;)

Labels: kate

  ¶ 8/06/2009 10:03:00 PM   13 Comments Links to this post

  Kate: The TV Star A couple of weeks ago a colleague of mine said she was enrolling her girls in the school across the street from work.

School? What school?

It's the Blossom Montessori School for the Deaf.

Your girls aren't deaf.

No they aren't, but they've opened up the summer program to all children.

Interesting. All I could think about was I might get to drive Kate to school. WIN! My friend later brought over some paperwork and I passed that on to Kris.

The next day, Kris called and was thoroughly impressed. They knew what apraxia was, unlike her local public school.

Kate has been in the ELP program for about a year and a half. ELP stands for Early Learning Program. It's designed for kids who, for one reason or another, have fallen behind. I think it falls between regular classes and Special Education (think Down's Syndrome).

Anyway, they recently provided us with her year-end report. It's not required though because the end of the year is really December. On the report, they crossed out (literally) the December date and hand-wrote the current date (June something). On top of that injustice (pun intended), they stated that Kate had made no progress since the last review.

Seriously, why would you do that? Why would you even entertain the idea of making @ktjustice mad? Mad is an understatement actually.


Needless to say, we signed Kate up for Blossom.

Kate signs, a little bit. Please, More, All Done. I don't think we pursued that hard because of her hands. She's been in school for 2 weeks now and seems to enjoy it. I think she signed Daddy this evening (poor Mommy).

Today they took a field trip to the Clearwater Aquarium and lo and behold, a news crew was there!


(I was having problems getting this to display, so just click-through if it doesn't show up).

Kate shows up at 1:02...with her back to everone else...standing, while everyone else is sitting.

Labels: kate

  ¶ 6/24/2009 09:48:00 PM   0 Comments Links to this post

  Kate It's been a week of flashbacks.

Tuesday was the 2 year "anniversary" of Kate's near death experience. I am blessed with something of a short term memory problem, but Kris is not. She remembers everything. Naturally that's no good for me because I can not deny anything I've done, for all time.

On Sunday, we argued about something trivial before I finally realized what it was really about.

Anyway, Kate is doing superb. Still not talking...even as I try to get her to say "shit" for "chet" as her first word (WIN!). I even posited on Twitter that it was feasible using the SOUNDEX function but alas, I was wrong:

SQL>SELECT *
  2  FROM dual
  3  WHERE SOUNDEX( 'SHIT' ) = 'CHET';

no rows selected

She's also been on Human Growth Hormone (HGH or steroids for some) since January which has produced a shoe size up 2 1/2 sizes. I think she's getting taller too as her head is about even with the kitchen counter too.

We took her to her first Ray's game this weekend. She didn't mind the noise (she's had problems with loud venues in the past) and even got up with the Ray's cheerleaders and danced. We left in the 5th (because I was exhausted from carrying/holding/chasing her) and she cried the entire way home (40 minutes) because she was pissed that we left. As painful as that was, we would just remember when she was silent which made it easier to tolerate.

So I leave you with this Shakespearean poem that Kris sent me today:

You are called plain Kate,
And bonny Kate and sometimes Kate the curst;
But Kate, the prettiest Kate in Christendom
Kate of Kate Hall, my super-dainty Kate,
For dainties are all Kates, and therefore, Kate,
Take this of me, Kate of my consolation.

The Taming of the Shrew, 2. 1

Labels: kate

  ¶ 4/23/2009 01:23:00 PM   6 Comments Links to this post

  Kate's Hand Doctor I've mentioned before that Kate has syndactyly (I never seem to spell that correctly). In other words, webbed fingers and toes.

For those that don't know what it looks like:

[ link ]

Kate's was very similar except that her final 3 fingers, on her left hand, were joined in a similar fashion. I use to call her The Penguin (Batman Returns) for fun. More to help us deal with it that her because she probably won't care...she's just that happy of a child.

She had Complex Complete Syndactyly, meaning that the bones from each of her digits (fingers) were fused at the tip and the there was no break in the skin. (Her hands really did look like The Penguin).

The point of all this was that Kris sent me a CNN link today about Hand Camp gives kids a chance to play -- away from stares. The guy that runs it, Dr. Paul Dell, is the man who performed Kate's first 2 surgeries, separating her last 3 digits. The website for the organization is Hands To Love. Dr. Dell is the Division Chief, Hand, Upper Extremity and Microsurgery at the University of Florida and also a founding member of American Society of Reconstructive Microsurgery.

Dr. Dell is a very good man. When we consulted with him I specifically said, "I just want her to be able to wear a wedding ring." That was my very first thought when I first saw her hand, "how can she wear a wedding ring?" In his surgery notes, he made specific mention of that concern. I couldn't have been happier. Kate will never be "perfect" but she's perfect to me and Kris and that is all that really matters.

So take a gander at his site and at the slides on CNN. Very moving and very worthwhile stuff.

Labels: kate

  ¶ 4/06/2009 08:54:00 PM   3 Comments Links to this post

  Random Things No Oracle stuff here, just feel like writing.

Kate
Kate, my little monster, decided to go to the hospital again. Penuemonia (yes, I spelled it wrong, that's how we say it around here). Last week her lungs were beautiful, probably the best doc has ever seen them. Her head was another matter, not a single black spot to be found. Diagnosis: sinus infection. Apparently it traveled down to her lungs. Hopefully it will be a short stay.

Words
"Publicly?" Why do I want to spell it "Publically?" Pub-lick-lee.

Kris and Little Chet
Kris let Little Chet watch Terminator 2 last night. Seriously? I watched most of it with him and there really isn't that much gore. A lot of bullets flying, but it's 2 robots shooting at each other right? I came down to check on him during the final scene of the movie when the Terminator is put into the super hot molten stuff. He was crying. He didn't want the Terminator to die.

Coaching Baseball
I've been "coaching" Little Chet's 5-6 year old baseball team. It's coach pitch the first 5 then bring out the tee. Hands down the best stress reliever of all time. I get to yell at a bunch of kids for and hour and a half. Is there a better way to live? I don't think so.

Me Yelling, neigh, Screaming

"Come on! Hustle of my field!"

"Quit playing in the dirt!"

"That's why you wear a cup!"

"I'll hit you with this tennis ball if you walk off that field again!"

"No wrestling!"

I think the parents enjoy the show I put on...at least I hope they do.

Thanks for listening.

Labels: baseball, funny, humility, kate, LC

  ¶ 3/24/2009 09:04:00 PM   2 Comments Links to this post

  Kate Update: Day 684 Previously in The Saga of Kate, we had her tested for Smith-Lemli-Opitz syndrome (SLOS) and her tests came back negative today. The name along with the bit that Kris told me about scared the crap out of me so I never bothered to look it up. Below are a couple of the definitions I found.

emedicine:

Smith-Lemli-Opitz syndrome (SLOS) is a multiple congenital anomalies/mental retardation (MCA/MR) syndrome caused by a defect in cholesterol synthesis. SLOS is an autosomal recessive genetic condition caused by deficiency of the enzyme 3 beta-hydroxysterol-delta 7-reductase (7-dehydrocholesterol-delta 7-reductase [DHCR7] EC 1.3.1.21), the final enzyme in the sterol synthetic pathway that converts 7-dehydrocholesterol (7DHC) to cholesterol.

Affected individuals usually have low plasma cholesterol levels and invariably have elevated levels of cholesterol precursors, including 7DHC. Severely affected individuals (those with the condition formerly referred to as SLOS type II) have multiple congenital malformations and are often miscarried or stillborn or die in the first weeks of life. Dysmorphic facial features, microcephaly, second- and third-toe syndactyly, other malformations, and MR are typical. Mildly affected individuals may have only subtle dysmorphic features and learning and behavioral disabilities.

Here's another definition from the NIH's Genetics Home Reference:

Smith-Lemli-Opitz syndrome is a developmental disorder that affects many parts of the body. This condition is characterized by distinctive facial features, small head size (microcephaly), intellectual disability or learning problems, and behavioral problems. Many affected children have the characteristic features of autism, a developmental condition that affects communication and social interaction. Malformations of the heart, lungs, kidneys, gastrointestinal tract, and genitalia are also common. Infants with Smith-Lemli-Opitz syndrome have weak muscle tone (hypotonia), experience feeding difficulties, and tend to grow more slowly than other infants. Most affected individuals have fused second and third toes (syndactyly), and some have extra fingers or toes (polydactyly).

The signs and symptoms of Smith-Lemli-Opitz syndrome vary widely. Mildly affected individuals may have only minor physical abnormalities with learning and behavioral problems. Severe cases can be life-threatening and involve profound intellectual disability and major physical abnormalities.

The first one is for the medically proficient. The second is for me.

Great news for us needless to say. She continues to disprove all of medical science. (I still believe she's the next evolution of the human race.)

In other news, she's been getting her Human Growth Hormone treatments for 6 or 7 weeks now. One shot every day (I've given her exactly zero treatments). She's non-plussed by it. No crying, no wimpering, nothing. Lah lah lah. She could care less.

According to measurements last week, she's already grown 3/4 of an inch so far (I still can't tell). She continues to eat like a horse. Her favorite food of late are Cheetos (Chester Cheetah!).

And she's still an absolute joy. Kate's taken to climbing the stairs now because she wants me to throw her onto the bed (a good 4 feet of air). She's never climbed the stairs without one of us prodding her.

She's also very spoiled. She's just so darn cute and still looks like a baby or toddler, maybe 2 now? She's going on 4 1/2.

The other day at school the teacher gave her a tray to carry to the table. She looked up at the teacher, grinned, and dropped (threw) the tray. We've instructed the teacher to be more firm with her (because we're not) so she scolds her. Then the lunch lady jumps in and says, "She's just a baby!" So it's difficult for anyone to scold this little girl. I feel bad for her future husband already.

I'll leave you with the queen on her throne (Dora couch) and some basketball with grandpa:

Labels: kate

  ¶ 3/05/2009 09:28:00 PM   4 Comments Links to this post

  Kate Update: Day 648

  1  SELECT 
  TRUNC( SYSDATE - TO_DATE( '04/21/2007', 'MM/DD/YYYY' ) ) kate_counter
  2* FROM DUAL
SQL>/

KATE_COUNTER
------------
         648

Kris posted this on Facebook here, but just in case you can't access it I'm reproducing the note in full here:

well, as part of the new year, we (kate + me) began with follow-ups w/ her genetics DR. and neurologist.

we had a report sent from the radiologist that read "normal", for kate's MRI back in october. today her neurologist saw her and i brought the scans...we reviewed them together and while it does state "normal", it appears that the "GYRI" or the "wavy" parts of the brain structure are normal, but, they are not as "full" or "filled out" as a perfectly normal brain...it is still considered within normal parameters, but still smaller...her head is of normal size though...anyway, he feels this could be playing a part in her speech and motor delay issues...it is most probably caused by a lack of oxygenation at some point...

he explained that childrens' brains do recover and grow, but there is still this, for lack of a better word, immaturity in the fullness of the brain...her ventricles were also mildly enlarged, but within normal range...he showed me a scan of a "normally full" brain scan, and kate's is ever so slightly less full.

i wish i had a picture to show you, but pretend you dissect a cranium by lifting the top off and looking down, well, the brain doesn't entirely fill the skull....mind you, ever so slightly.

anyway, my heart kinda sank, but he was very impressed in her abilities to understand and comprehend complex tasks...she "acts" like a "normal" child by following directions...he wants to repeat a scan in october of this year to follow up on the growth...so yes, there is a very slight hint of brain damage, but one can not say for sure when this occurred...my best guess is 2.5 years of literally struggling to breathe...she can catch up, as kids brains are able to repair themselves, but it is a small hint as to what is going on...

secondly, her geneticist, is running a test for a disorder that does not allow a body to process cholesterol...( a key ingredient in brain growth), anyway, one of the hallmarks is small stature, and delays, but most prominently, syndactyly, most specifically, a mild syndactyly of the 2nd and 3rd toes...we will have results in about 3 weeks, as it has been sent to the Mayo Clinic...it is called Smith-Lemli-Optiz syndrome...it is rare and there are VERY severe forms, as well as very mild, barely perceptible forms....so, if you "google" it, don't fall out of your chair!

i guess i can't give up until i get the answers...deep inside of me i know there is something going on...i have always had a sense, even before she was born. anyway, there is the update...i know we will get this all figured out. BTW, i have taken up riding my bike to relax during the day when they are at school, unfortunately today, i can't get out to blow off some steam!

update
When I got home I was able to talk to Kris. The short of it, Kate has brain damage. Now, it's minimal as pointed out by the fact that the Radiologist didn't pick up it, but the Neurologist saw it right away. After seeing the MRI myself, you can see a small amount of space between her brain and her skull. Apparently that's indicative of brain damage.

What does that mean? Nothing really. We sort of knew all along. For both of us (her hearing, me reading) it hit pretty hard. I can't remember that last time I felt that way...and I can't explain why. Nothing has changed. We'll still love Kate, we'll still work with her (well, Kris will, I get to play!), she's just going to be slower than everyone else.

Which conveniently brings me to the theory I have about Kate.

Kate is a glimpse of the evolution of the human race. Her lifespan is double, perhaps triple that of you or I. The only downside is that development is slower (like a fine wine right?), which means she won't leave home until she's about 40. As a colleague pointed out though, that's not so unusual these days. ;)

Labels: family, humility, kate

  ¶ 1/28/2009 05:09:00 PM   5 Comments Links to this post

  Need Part Time Work? My little monster Kate has suggested that she may need Growth Hormones to catch up. She turned 4 years old last Saturday (12/13) and she's a tad on the small side.

The doctor said that she was small for her gestational age (36 weeks, 17 inches long). She's been growing, despite the steroids (inhibit growth) she took most of her first two and a half years, just very slowly. She needs to catch up.

Kris was told by the doctor that this could cost anywhere from 15 to 20K per year. Naturally insurance doesn't cover it. But we will appeal.

Seriously, Kate's not getting college money or wedding money from me.

Being salaried, I can't earn any more money at work. So I'm asking all 12 of my usual readers if they have any work or know of anyone looking for a fairly rounded Oracle type like me. Strong developer skills, juniorish DBA skills, strong (if rusty) ApEx skills. I'll even throw a little Java in there (keyword, little).

Twenty to thirty hours a month if possible.

Any leads you could throw me would be great too. I'm actually very delightful in person. Especially if I can tell the tales of woe in regards to Kate (don't think I won't pull out the sympathy card). ;)

Labels: humility, jobs, kate

  ¶ 12/21/2008 10:47:00 PM   4 Comments Links to this post

  Baby Kate: Day 576 See the previous posts about Kate here:
http://www.oraclenerd.com/labels/kate.html

So it's been 576 days since Kate kicked the reaper in the nuts and told him to eff off. We hadn't had a single visit to the hospital...until this week. Pneumonia got to her, and the latest version of the flu (I asked my wife if it was the bird flu). At first, it was old hat. We did this all the time. I think we averaged at least 1 hospital stay every 3 months for the first 2.5 years of Kate's life.

After about a day I was unhappy. Texted Kris and said, "I don't like this anymore." She responded with, "neither do i."

Honestly I can't do a darn thing without Kris. Little Chet is lucky he made it to school...on time. He's lucky he was clean. People kept asking me questions and I'd just have this blank look on my face...ummm...ask Kris? Are you going to sign up for Little League? I don't know. Are you going to coach? I don't know. What are your plans for Thanksgiving? I don't know.

Point is, it ain't regular for Kate to go into the hospital now. Yes, I was comforted by the fact that our Pulmonologist had 35 other kids admitted into the hospital. That made the situation a little easier to swallow. But (thankfully) it is the exception now and no longer the rule that Kate goes into the hospital.

Speaking of Kate...she's stalking me right now in her red Minnie Mouse PJs (there must be a break in Spongebob). She is growing. Up to 32.5 lbs and 35.43 inches tall. Big-time midget, but she's my midget. No talking from her other than this primal grunting (not sure where she gets that from). There's no better personality in the world either...I get no kisses. Mom, she gets kisses. Dad, hell no. "Hey Dad, kiss my ear!"

"No, besa me en la boca!"

Yeah right.

The smile from that little monster gets no better. She can light up a room.

We've learned from recent visits with the neurologist, that there is a higher incidence of Syndactyly and "Slow Development" of children born to mothers with gestational diabetes. Strangely, we had never heard that before. Doesn't really matter though. Hands can be fixed...doesn't really matter anymore. If she's happy, I'm happy...we're happy.

Labels: family, kate

  ¶ 11/16/2008 07:53:00 PM   5 Comments Links to this post

  Baby Kate - Day 361 It's amazingly almost been a year to the day. Saturday, the 19th will be the "anniversary." Kate turned 40 months on Sunday. What a long strange trip it's been...

A quick recap: my wife (Kris) and I took our almost 2.5 year old daughter to get her tonsils and addenoids removed. She stood on the gurney and waved to us like a little princess.

Next day (morning actually), she was put on a respirator and later in the afternoon, she crashed, twice. Her heart rate was 5 or something. The second time the doctor came out and said he couldn't do anymore and the hospital chaplain showed up.

She spent the next 2 weeks on an oscillator (short quick bursts of air, about 300 per minute because her lungs couldn't handle a normal breathing rate), one week on a ventilator and finally came off of that. She was addicted to pain meds and had to be weaned off via methadone, my 2 year old addict!

Fortunately she made a full recovery. The only lasting scar was on her head; basically, her sat in her own spit for 2 weeks (oscillator, they couldn't move her head as they normally do). She now has a bald spot behind her left ear...she partly on her way to looking like her father! I know she would be OK when I saw this picture:



That gleam in her eye was back.

In August, she walked for the first time, in October, she walked into our bedroom for the first time.

She still doesn't talk, but I can't say I really care. It would be nice to hear her thoughts, but I don't need to, I'm sure I'll get enough of her in the near future.

In January she started school. They have a class for developmentally delayed children, I think it's called Early Learning Progam. She cried the first couple of weeks when Kris dropped her off, but it is less and less frequent now. She now takes the bus to and from school which leaves Kris a few hours to herself finally.

From all indications she is doing very well. She loves other kids (though she may pinch a little too much). We haven't received a negative report.

She's also great at impersonating an 18 month old. We still don't have to pay for her Disney tickets because she doesn't look 3 yet. That's a huge bonus. Which reminds me, she grown 4 inches in the past year (maybe 5?).

She continues to be the source of much joy. She has one of the best demeanors I've ever seen, especially considering all that she's been through. Her smile lights up the room.

Kris has finally agreed to consider [voluntary] surgery. Kate's hands still need a bit of work. After last year, we were perfectly happy with letting her make the decision when she turned 18. We wanted nothing to do with some sort of "voluntary" procedures.

This post feels very disjointed. I apologize for that.

I just wanted to say thank you again to everyone who has supported us.

Labels: family, kate

  ¶ 4/14/2008 03:43:00 PM   2 Comments Links to this post

  Vacation? I've been on "vacation" since April 4th. Of course I was sick and slept most of the day. On Sunday, I took the family to Disney World. Last year my parents bought us annual passes to the Magic Kingdom so that we could all go together to get away.

I am an only child. My parents and I never had vacations, we just moved somewhere (8 times). If we did go somewhere, it was to my parents home town town for a week or two to visit Grandma and Grandpa.

Now, here's what I consider a vacation, sitting on a beach drinking Corona's with my beautiful wife (no kids) staring at the ocean. Yes, this is the Corona ads you've probably seen. Quiet. No work. Perfect.

I love the kids, but they are harder "work" than work. On "vacation," I am the pack mule. I carry everything and everyone. A friend at work has shared this story about Man's Stages of Life, I'm in the donkey phase...

I'll say it again because I don't believe my sense of humor always comes out correctly (I'm rarely serious), I love my family, my kids, but a break it is not.

Disney H5N1?

We did have a great time despite all of us coming down with the Disney version of the bird flu. Imagine a virus made up of viri (sp?) from 100 countries...that's what we all have. I'm hacking right now. I took a half day on Thursday and spent the following day with Kate at home. She slept most of the day. Kris and Little Chet spent the day at Disney's Hollywood Studios. Saturday we came home because Little Chet finally caught it. Now we're resting.

Upcoming

• Little Chet gets a tooth pulled tomorrow


• Pick up new Dell XPS laptop tomorrow (woohoo!)


• Go back to work (woohoo?)


• I'll be doing my first Application Express presentation for the Suncoast Oracle Users Group, SOUG. Actually, it's my first IT related presentation. If you can make it, please come by and laugh. More information about the presentation can be found here.

Labels: apex, kate, vacation, work

  ¶ 4/13/2008 12:41:00 PM   2 Comments Links to this post

  Night of the Walking Kate Since the birth of Kate in December of 2004, things have been rather difficult. First she had to be rescucitated and when they went to bathe her, we discovered she had syndactyly. While still in the hospital, she had a "seizure" and was sent to a Level 1 NICU (Neo-Natal Intensive Care Unit). She was placed in a phenobarbital coma for essentially six weeks. Lo and behold she was just twitchy, Benign Sleep Myoclonus of Infancy. We almost AMA'd (against medical advice) her because they said she couldn't eat on her own. It's rather difficult when she's only ever been fed through a tube.

With all that, the syndactyly was trivial. She's already had two surgeries to fix one of her hands and she's got at least two more to go.

Earlier this year (April) we went to remove her tonsils and addenoids and put tubes in to prevent the ever present ear infections. She stood on top of the bed waving like a little princess as they wheeled her into the OR.

All went well with the surgery but afterwards it was obvious that she was having trouble breathing. No big deal, we planned on staying overnight. She'd also been diagnosed with asthma, had a bout of RSV and had numerous emergency room visits for her breathing difficulties.

Kris stayed with her and I went home. Around 4:30 in the morning I get a text from Kris, "She's crashing." Then another, "they're bringing in the crash cart!"

I got in the car and raced down to the hospital, not really knowing what to think.

By the time I got there, they had gotten her stabilized. Whew.

Later that afternoon, she coded, twice. The second time the doctor came out and said he had done all he could, that was just before the chaplain showed up...

Somehow she pulled through. We like to say she gave the reaper the finger, Kris suggested it and I thought it was the most appropriate visual. She's a tough little girl.

The next month was spent at the hospital recovering, and recover she did.

This past August, she finally walked:



She's done remarkably well since the surgery, minus the almost dying part. She no longer snores. She gets a cold and doesn't have to go to the hospital. She talks (well, her mother says she does but it's all gibberish to me, I can make out "Daddy" though). In short, wow!

(And finally to the point)
Last night, her brother "snuck" into our bed around 1:30 or so. I told him to go get his pillows because I wasn't sharing. He came back in (throwing the pillows on his mother) and said that Katie was standing at her door.

Me: What?

Me: You're dreaming right?

LC (Little Chet): Nope.

I went to get up and I see this tiny silhouette by the door. It's Kate.

I just started laughing. This was the first time she had ever done such a thing. So the four of us shared the bed last night. LC got kicked a lot by Kate (ah, sweet revenge) and I hardly slept, but it was well worth it. Probably one of my favorite moments of being a Dad.

I'll always remember The Night of the Walking Kate...

Labels: family, kate

  ¶ 10/04/2007 11:31:00 PM   5 Comments Links to this post