Tagged

I believe this is the first time I have been blog tagged. I plan on putting up another post at some point today and I thought I’d do this one first.

Seven Things I Want To Do Before I Die:

1) Be there when the Nashville Predators clinch the Stanley Cup (haha, haha, hah)

2) Go on a cruise to Alaska

3) Travel to Europe (Spain, France, Italy, and Greece to be specific) to see the Architecture

4) Learn to speak Japanese

5) Graduate from College with a Bachelors or Masters in something

6) Design and Build my own home on acreage (with the SU’s help of course)

7) Own my own successful company so I can be the boss.

Seven Things I Can Do

1) Find people on the internet using information freely available to the public (just ask the SU)

2) Hide the pictures that the SU needs in either C:Media\Documents\SU’s User Name\My Pictures or C:\Media\Pictures. *Wink* Love you Honey!!

3) Help the children with their Math homework, even if it means googling something to jog my memory.

4) Use Adobe Photoshop to create blog backgrounds and headers.

5) Absorb information and then 4 hours later come up with really great questions about it

6) Cook, Clean, and take care of the Pip Squeak

7) Play video games for hours on end

Seven Things I Can’t Do

1) Fix cars or do anything mechanical that requires me to use tools, except for hanging up pictures or putting together things that come with instructions

2) Keep the yard mowed on a regular basis

3) Interpret the barks of the Ferocious Puppy. I swear it would easier to care for her if I understood dog.

4) Motivate myself to do yard work

5) Speak in front of large groups of people (I just get so nervous!)

6) Be on time all the time

7) Find it funny when people joke about my family

Seven Things That Attact Me to the SU

1) Her fast witty humor

2) The way she can charm just about anyone into doing what she wants

3) She rubs my head sometimes and it just makes me relax and feel safe

4) She’s teaching me to say …. well…. I just cant…. well… ummm… NO!

5) The way she pushes me to be a better Dad, Husband, and man. (Jack Nicholson put it best in As Good As It Gets, “You make me want to be a better man)

6) The ability she has to just know when I need a kiss and a pat on the head to feel better.

7) The way she smiles at me when I’m taking care of the Pip Squeak and the way she looks at me when I wake up in the morning.

Seven Things That I Say Most Often

1) Dude!

2) Whatever!

3) Come on!

4) Lexi, Hush!

5) Whiskey, Tango, Foxtrot Over!

6) Move you idiot! (While driving of course)

7) Are you going to smile for Daddy? (to the Pip Squeak)

Seven Celebrities that I like Love

1) SU

2) Pip Squeak

3) The Gamer

4) The Artist

5) The Ferocious Puppy

6) The Miracle

7) Me, (is that wrong?)

Seven Favorite Foods

1) Pizza!! (Frozen, Fresh, Home-made, doesn’t really matter)

2) Chicken Fettucini Alfredo

3) Porcupine Meatballs

4) Skeebers

5) Nightmare Cake

6) SU’s Famous Spaghetti and Meatballs

7) Chicken Quesadillas and Rice

Seven People that I tag

1) The seven people who last clicked on my blog and whoever wants to do it.

To the person(s) responsible…

Thanks for leaving your left over pizza and salad on my desk. I really appreciated the fact that you left some pizza and salad for me. I love the fruit flies that are now buzzing around my desk, those are a nice touch. Next time can you at least leave me a drink and maybe some cleansing wipes so I can disinfect my workspace in a timely manner? I hope someone takes a dump on your desk and pees on your shoes!

Why I haven’t updated in over a month…

Well, to be quite honest, I’ve been very busy and haven’t felt the itch to do so. The Pip Squeak isn’t so Pip Squeak anymore. I was looking at pictures of her from a couple of days after she was born and then comparing them to how big she is now. I’d say she’s probably doubled in size. It’s really quite a startling contrast. She’s turning into a daddy’s girl, much to her mothers delight (can we get a Da-Da! Da-Da! in there?), she’s smiling really big now (for me first, haha take that SU), and I believe she cooed at me. I haven’t been able to get Pip Squeak to do that again yet but I’m trying. And then tonight she did something I haven’t seen her do before. I was watching the presidential debates and she turned and looked at the tv and actually watched it for a few minutes. John McCain was speaking and I said to the Pip Squeak, “What do you think about him?” She then proceeded to immediately scream at the top of her lungs and make a big frowny face. I just kind of laughed at that.

I’ve also been doing a lot of work on the computer. I decided to give Linux a try after getting frustrated with my computer rebooting every day multiple times when I was in the middle of something. I’m using Ubuntu 8.04 on a second drive and have a dual boot set up so the SU can still use the computer. She uses it a lot less now (unless I remember to reboot so it goes into windows after I’m done). I’m pleasantly surprised at Ubuntu but there are things that annoy the crap out of me. For instance, there is a Sopcast client for Linux but it was so confusing to try and set up that I tried a couple of times and gave up. After a random search today I was finally able to find a working version and actually got it working this afternoon. If there’s one thing I’ve learned about Linux is that sometimes you have to work really hard to get it to do what you want. Other than that, I’ve been able to replace all of my windows programs (minus a few) and I can pretty do much do everything I could in windows on Linux. One noted exception there is that there isn’t a Quicken type replacement for Linux yet. I’ve tried the most popular finance programs and weren’t impressed. Of course, the games I have don’t work either but I don’t do a whole lot of gaming on the computer anyway. I’ll just boot into windows when I have a hankering to play a game.

Even more good news

Pip Squeak failed the urine test for PA and MMA 3 times. She recently had a 4th test done and….

IT CAME BACK NEGATIVE!!

YAY!!!

Drum roll please…

And the results are in. The Pip Squeaks blood levels were slightly elevated, however, they are no where near the elevation level that babies who have MMA or PA are typically at. For instance, Pip Squeaks level was at 81 which is above the normal level of 50, however, babies who normally have it are at 350-400+. The doctors are going with a 80-90% that Pip Squeak has NEITHER!!!

Pip Squeak doesn’t exhibit the symptoms that the ones who typically have this do. She wakes us up when she has a wet or poopy diaper. She grunts when she tries to poop. She makes noise when she’s hungry. Lately, she’s been more awake than we’ve ever seen her and she’s even looking at us now. The doctors said that babies who have MMA or PA sleep ALL the time and make NO noise. They would sleep to death if the parents let them. Furthermore, babies who have this don’t eat and they LOSE weight. Pip Squeak weighed in at 6lbs 2 Oz today up from the 5 lbs 6oz from a couple of weeks ago.

This has probably been the best news we’ve received in a couple of weeks. It’s been sheer terror waiting for the results and not knowing one way or the other. We asked if there was a chance she was borderline and the doctors equated MMA and PA to diabetes, either you have it or you don’t there is no borderline.

Thank you all for your kind thoughts, well wishes and prayers. We have certainly been blessed by them.

(countdown to moving day is at 11 days!)

MMA and PA

(not mixed martial arts and the abbreviation for Pennsylvania)

What we know:

MMA=Methylmalonic Acidemia

PA=Propionic Acidemia

Both are rare Genetic Metabolic Disorders and can cause brain damage, mental retardation, physical handicaps, developmental delays, and a slew of other problems if left untreated. Both mean the person who has it has problems breaking down amino acids in protein and certain fats and they require an extremely low protein diet. Pip Squeak has failed the Newborn Screening test twice and the Urine test once which means she has an 80% chance of having PA. The one blood test we got back show normal levels of amino acids in her blood. They are testing her Urine again and we’re waiting for those results to come back.

What we don’t know:

Which one (or both) that Pip Squeak has. The remainder of the test results are still “Pending”.

What we think:

If it turns out that the Pip Squeak has one or both, or is a carrier for one or both, we are 99.999999% sure this is what caused The Miracle’s stroke and eventual death. Our doctors are waiting to see the results of the Pip Squeaks test and then will use a hair from the Miracle to test her DNA to see if she had it as well.

What it means:

We don’t know just yet.

Links:

http://www.pafoundation.com/

http://www.oaanews.org

http://www.oaanews.org/mma.htm

http://www.oaanews.org/pa.htm

We’ll let everybody know the results of the tests when they come in. We’ve been waiting for over a week now and its just killing me.

Overheard while shopping today

We were out getting the Artist and the Gamer new glasses today and the following conversation takes place after they get their glasses and they’re wearing them for the first time:

 

Artist: “Wow! There’s like bricks on that brown wall at Sears and I can actually see them! I thought it was just a brown wall!”

Gamer: “Yeah, its like our eyes have gone HD!”

Me: “Did she just say her eyes have gone HD?”

SU: “I believe so.”

Middle of the night update

I just got done feeding the Pip Squeak. As luck would have it (of course) she did a mega turd bomb on me in the middle of feeding her. It was up her diaper almost out of the top of it. All runny and dark. And, it STUNK! The SU was sound asleep so I had to manage this one on my own. During the middle of changing her she started peeing too, just my luck. I managed to get her all cleaned up and her diaper back on and then I tried to see if she was still hungry. Alas, the crapping her pants took just about all the remaining energy she had right out of her. So, she’s back in her bassinet resting comfortably now. I can scratch changing a really messy, stinky, poopy diaper off my lists of things to do as a dad now. Yay for me! Now its time to see if I can get some more sleep before she wakes us up again.

Guess what?

I have a baby in the other room as I’m typing this. IN MY HOUSE!!! Pip Squeak got her walking papers this morning and we finally made it home. She’s eating right now. We’re so excited and relieved that she’s home. We were curious to see how the Ferocious Puppy would react to her and the Puppy just sniffed and sniffed and sniffed and then finally attacked us like we had done well. We weren’t sure what to make of that. Now that we’ve gotten Lily out of her bassinet and ready to feed her the Puppy has watched her very carefully and attempts to lick her hands if she makes any kind of noise. We think those two will get along quite well and eventually get into some trouble together. We’re glad to be home, and glad that we won’t have to make any more trips to the NICU.

Pip Squeak, Almost ready to come home

That’s right folks! She’s almost ready to come home. We got moved to the Pediatric Hallway Friday evening. She’s been in the NICU for 5 weeks now and they said it was time for us to move and for us to get her ready to come home. She’s doing five feeds (of off the bottle now. If things continue to go well we’re looking at Wednesday (the earliest) to Friday (more likely) as the day she gets to come home.

The Neonatologist came in today to talk to us and it seems there’s been some confusion as to whether or not we’ll be allowed to take Pip Squeak home on caffeine and epo shots. He said he would be looking into it and would let us know what he finds out. He just seemed to think that it was odd that we had been told that. We’ll see what happens. Either way, we’ll probably be bringing her home this week.

Edit: The Neonatologist just came back in. We’re stopping the caffeine that she’s been on. The last apnea event happened on 07/14. He said its not an addictive kind of caffeine so there’s no need to ween her off. 35 weekers usually are old enough that they don’t have any apneas anymore. The Epo shots will continue for now but they are checking the Pip Squeak’s hermatacrit tonight and if its low they’ll up the Epo shots to everyday instead of Monday, Wednesday, Friday. He also said we should bring the car seat and base in for a car seat test. Things are happening fast and we’ll probably be out of here by Friday for sure.