Couch Potato???

This post is for anyone who thinks us Stanis' are couch potatoes!

When we last talked,Taylor had somehow lost his tube, ended up in the ER and thankfully got another (smaller) one in. So that was around May 8th... what have we been up to? Not couching it, oh no... we have been BUSY!

Mother's Day Breakfast

Taylor had three visits with our surgeon friend, who was able to put his regular sized tube back in after only two visits and in less than a week! HURRAY, he rocks so much! Go Dr Brennan!

On the 15th we had our usual visit from the nurse that is in charge of Taylor's home care. She and I don't always see eye to eye, and this time she came with an agenda. She decided that she would cut our hours by 2 hours a day. While I agree that Taylor is getting well enough that we don't need as much care, one of the purposes of his care was to provide him with care while I work. This can be pretty complicated to explain, but as a child with a G-tube and other complications, he does not generally qualify for regular means of child care. Consequently, Katie Becket (a program that funds Taylor's Medicaid Eligibility etc) is in place to help find care for kids like Taylor. This day was very frustrating.

After Taylor's last tube change appointment, I decided to call the Ped's office becaue Livi's cold was not only not better, it was getting worse. Both the kids started getting runny noses around the same time T's tube came out. While Taylor's sort of resolved, Livi's developed into a bad cough.



Turns out she had an infection in both ears! Bring on the pink stuff!!! If you aren't familiar with this yet, and you are a parent... this is your future!

Anyway, so we went on with life and antibiotics...


If you look closely at this one, you will see the poor drippy noses that we've been wiping!







So on Saturday the 17th, we loaded up the car and set out to hit the rummage sales HARD! I love these sales... you can find so many good deals, and it gets us out of the house. And no one cares if the kids cry, laugh, or make a mess! We found a neighborhood where there were over 30 homes having sales. It was AWESOME! We walked and walked and then...



we ate. We were exhausted, but had a super fun time.



So the noses started to clear up, and on Thursday the 22nd, we were scheduled to have Taylor's Botox redone. Jon took the day off to come with me, unfortunately... for the doctor... Taylor's PT thought that he didn't really need the Botox. So we cancelled the appointment!!! YEAH! Doesn't Taylor just rock? Instead, we ended up traveling down to Waukesha to visit our NICU nurse Sue.



We had a really good time! Especially the kids. We stayed up late, and we ate, and we played, and well.. just so much catching up!





Then we slept, well the kids did anyway. Daddy drove, and Mommy struggled to stay awake. Daddy took Friday off, so we were all super spoiled having Daddy home Thursday through Tuesday! On Friday Jon and I fixed up the old bike trailer that our neighbor gave us when we moved in and bought the kids bike helmets... pix to come...

we went for a ride and the kids really thought it was fun... after they got going. Putting on helmets and getting in wasn't really fun.
Meanwhile, the girly nose kept running...

So after work on Saturday, Jon tells me that he gave Livi Albuterol because she started wheezing... no good... Sunday morning I pull out the old stethoscope, and sure enough this child's right lung was squeaky like a mouse! I called her dr and...



yup, nebs! Poor kiddo.

So on Monday, Memorial Day, we went over to James and Kristi's for a small cookout after playing outside all morning... and discovering a couple holes in our pool :( It was so fun to hang out and the kids had an awesome time! Thanks for having us over!!!
I can't say how nice it is to have other adults around once in a while leaving us free to relax a bit!

Tuesday morning we got up bright and early for SURGERY! Taylor was scheduled to have his adenoids removed, and his tubes replaced.



He really liked the Versed! After the procedure we met him in Recovery. Everything went well in the surgery, and he PASSED his hearing exam!



He was super sleepy, and really angry! Who wouldn't be though?

After an hour or so, he was still sleepy, AND only sating around 89 :(
Soooooo...


After four hours, he was still not sating very well... so a chest x-ray was done, and pnuemonia was diagnosed... we were admitted to the PACU for observation. By the time we arrived to the room, he was sating 96! The child was HUNGRY!!! So after a few hours of observation, we went home on... see pic above... the pink stuff... well his is actually white, but you get the idea. AND prednisone! sigh...

AND we were all exhuasted!



This morning I took Livi back to the Dr to check on things... guess what... you are going to be shocked... she has ...

PNEUMONIA too!

Shocking! I bet the Dr wishes the nurse had listened to me better last Sunday! So double strength Zithromax... here we come!

Take a moment to give us some health! We need it!

The kids are doing well, considering!

Taylor and Alivya playing in the back yard.

TWiP and Twitter

First, another link to This Week in Photography. They are giving away a Drobo (a back up device that would be extremely useful), plus they are a great photography podcast that is getting better as they go along.

http://www.twipphoto.com

Second, if you would like a peak inside the madness that is my mind you can follow me on Twitter, which is a sort of blog/IM service. You can either subscribe to my feed in an RSS feed or join Twitter yourself and jump into the conversation. I am also planing on adding it the sidebar. Warning, Twitter can be a real black hole if you let it be.

http://twitter.com/jonstanis

G Tube

Every now and then I am asked to talk about what residual complications we have from the kids prematurity. Generally speaking, I would say that we have very few, however there are some. This is why the mission of the March of Dimes continues to be so important to us. No child should suffer the short or long term complications of premature birth.

There are two different types of complications that our kids continue to battle; there are the direct complications and the more indirect complications. Alivya, for example, has few direct complications. In fact, the only one I can think of is that she continues to lag behind on the growth chart. It is something that her doctor mentions each time we see her, but she has not recommended anything special to do about it. So I assume that her growth pattern isn't very alarming.

I would say that Alivya's continuing complications are more of the indirect nature. In my opinion, Livi lacks the social skills that normal two year olds have. I believe very much that this is at least partially, a complication resulting from the immuno precautions we took in their first two years. It seems to me that even though babies don't really knowingly participate in social situations during their first two years, they gain a ton of social experiences from watching the interactions that others have with them and the people around them. So I think what we are seeing now in group situations is a fear that may not have been so prominent if she had experienced more group activities when they were younger. I doubt this is a permanent deficiency, but it is something that we are working on with her. There is shy, and there is fear. I really believe that Alivya gets scared of larger groups of kids and/or adults.



Now Taylor, on the other hand, is doing rather well with the group situation. I think this is partially because he got more of his father's passive personality. Anyway, he continues to have more direct complications of his premature birth. Above is a photo Jon and I took of some of Taylor's old feeding tubes. The long one is called a G/J Tube. The long part is guided through the stomach and down into the small intestine using a radiology technique called floroscopy. Radioactive dye and xray helps the radiologist determine if the tube is placed properly. Taylor used this type of tube between October 2006 and August 2007. During this period he experienced frequent projectile vomiting, sometimes four and five times per day. The advantage of the G/J tube is that the food bypasses the stomach altogether. This ensured that Taylor would not be able to vomit, and contributed to his successful growth during that first year.

The other tube pictured is a more simple form called a G-tube. This tube is much shorter since it only needs to go through the skin and into the stomach. The large bulb at the bottom of this tube is an inflatable balloon, which keeps the tube in place. Both types of tube work like this.

On Thursday morning we woke to find that Taylor's G-tube (the smaller one) had somehow been removed, and the channel from Taylor's skin to into his stomach, was already halfway closed. Although I was really worried that we might have to take him into surgery to reopen the channel, we ended up only having to go to the ER. There a surgeon was able to place a temporary tube that is half the size of his usual tube. Consequently, he will have to make at least two appointments to try to enlarge the channel by placing larger and larger tubing in the channel. We have no idea really how the tube became dislodged, but since the balloon at the bottom was completely intact, I have to believe that it was either caught on something or someone... but it must have happened after 7pm when Jon fed him, and 10pm when we moved him back to his own bed just before we went to bed. If we had noticed it right away, we could have replaced it ourselves without difficulty.

So Thursday was a busy busy day. Taylor and I also had an appointment with his Ear Nose, and Throat doctor. It turns out that one of his tubes is dislodged and crusted shut. Since this will be his second set of tubes, and his research has indicated that children who require multiple sets of tubes tend to benefit from having their adenoids removed. So sometime in the next week or two he will be having his ear tubes replaced and a partial adenoidectomy. Since he will be asleep, they are also going to be doing a conductive hearing test to make sure that all his failed hearing tests have in fact been related to the fluid not a conductive issue.

So these are a couple of the examples of the continuing complications that we are dealing with.

A conversation with Taylor

Nothing like a cute movie to bring the crowds...

Loved

So its a good thing that I don't judge how well loved we are based on our reader comments;) Maybe everyone else is busy putting together mother's day surprises and just can't take time to post a comment... or maybe you have all switched to readers, like us, where commenting is really super inconvenient... what ever keeps you away, once in a while drop a line so we feel a purpose for writing.

Anyway, we have been really busy working on the photos from the March for Babies walk. They look super, I am really excited to finally get them in the mail, hopefully this week yet.

I have also been working on mother's day surprises... since some of our mothers actually read our blog... I think so anyway... I won't say anymore about that. And lastly, we ordered some more prints to add to our Studio portfolio. Overall, I am really pleased with them, but there were a few (7) that ended up being a "learning experience". Thankfully they were all shots that we were sort of experimenting with in the first place, so nothing important was messed up. I would like to take a moment to thank a number of our friends and family who have allowed us to "play" with their images. Breaking into this business is tough work, but every photo shoot is an opportunity to gain ground... so big THANK YOU... you all know who you are!

Without further adu... since I know you all read to hear about the kiddies...
Alivya has had a couple of really adorable conversations with herself and various inanimate objects (remotes, crayons, blocks, etc) Most of these consist of some short sentences. Tanya said this morning she was having one of these and said something to the effect of "oh, you're all done? Good then". Too cute! Potty training still evades me. I can't exactly put my finger on it, but there is something about it that just freaks me out! Any pointers, fellow moms? Twin mommy's? HELP!

We've finally had a couple really nice days, so the kids got to enjoy the sunshine and their outdoor toys. Taylor discovered that going under the screen of our new gazebo is so much easier than zipping and unzipping... there are advantages to being small. Last night we had dinner outside. I am not sure it was Livi's cup of tea, but Taylor had a ball.

Livi has undeniably learned the word "NO", and expresses her new verbiage with enthusiasm often! It kills me when I use it on her now, she looks up at us like, "only I can use that term!" It's pretty classic. Likewise, Taylor is starting to pick up on it too. He doesn't use it as often, but in key moments he can pull it out as good as she can! Taylor is also working on his repetition stage... I often say things like, "don't play with that Taylor!" and hear back "don't pay with dat Tayr!" Yesterday he came up to me and I looked at him and said, "Whats up bud?" and he got right in my face and said "whats up bud?" You really learn to listen to yourself more when you have two year olds!

Jon and I have been trudging, begrudgingly through hours of whinny, screaming pouts and tantrums. So much so, that I am surprised that we've still got our feet firmly planted... so last week Jon says to me "they are acting SOOOO ..... two!" In some ways we just have to laugh, because everyone always talks about this, but as a parent, it hits you like a meteor just fell out of the sky. One day you have these perfect tiny angel beings that bring joy and laughter to your life. The next day you have two year olds! Screaming, crying, whining about EVERYTHING! Taylor: dacker (cracker) Dad: you have a cracker! Taylor: Daaaaackerrrrrrrr!! Daaaaaackerrrrrrr! [while pulling on your finger with intent]

See even when you give them what they say they want, they are not happy. So in conclusion, parents of two year olds are SCREWED, just hunker down and pray that three comes soon... not that it necessarily gets sunnier on that side...

:)

Mother's Day... May 11th

For those men who do not have calenders which will remind them, Mother's Day is May 11th... which is a week from Sunday! Go buy your mothers some flowers, and your wives a nice gift from their wish list on Amazon...

Mommy has needs...


In other news, its still cold here... we all have SEVERE cabin fever. The terrible twos are in full force, and Livi refuses to eat just about every single night. Toast which she calls "breakfast", "crackers" (but she actually means cookies) and "strawburries" are the only acceptable foods. Taylor the food monster prefers "puffs", unflavored puffed popcorn, but will shovel anything and everything into his little mouth. Most of it he eventually chews and swallows, but this depends upon his skill at said food. He did pretty well with steak this evening... YES I said STEAK... At almost three weeks past nasty stomach illness, see vomit village and buckets of vomit in our archives, he is still down a full pound, but not for lack of trying. I truly believe that he spends all of his calories trying to dissolve the he** out of undissolvable foods! Consequently, he also spends around eight hours of the day happily stuffing his face at the table. While I am super stoked to be reporting his continued interest in solid "table" foods, I will be very happy when some day we can have a normal meal... by this I mean, a meal in which all four of us consume the same foods in a reasonable amount of time... yes I think 3 hours per meal is a bit over kill when we are talking about one course!

I have also decided that "toddler" beds, are a big marketing farce as no kid actually wants to sleep in their "big" beds. Ours, and just about every other kid we know, has decided to x the old toddler bed for really "BIG" kid beds... two twins now inhabit what I still refer to as "the nursery", however inappropriate the term has become.

"Outside" and "Shovel" are terms we hear daily now, after spending a splendid warm weekend outdoors just two weeks ago! This unfortunate freeze has broken both of their little hearts... all Livi wants is her "wings". However fun the swings are, I am not sure that social services will understand my explaining the ensuing frostbite... "mam, all I wanted to do was give her wings!"

With that, remember to buy gifts for your wives and mothers... May 11th! ;)

March for Babies 2008 Pictures

Setting up in the morning.


The Pavilion/Theater from the top of the hill.


Setting up the grill.


The radio station arrives.


More than one...


If I had a hammer, I'd hammer in the morning...


They said the biggest team was going to be 15, I count 31.


The walk begins.


My lovely wife and the March of Dimes event manager.


The hot dogs were good.


The first of the walkers retuning to the pavilion.


Hurry up! It's fricking cold.




"You come here often?"


Dogs march too.


Cheater!


These bike buggies were everywhere.




Picking up bottles after the walk.


Cheering them home.


My wife does not like her picture taken, but I think she is cute.


One of the little reasons we are doing this.


The mini golf course set up.


See you next year!

March for Babies

After working so hard for the past six months to plan the Fox Valley annual March of Dimes fund raising walk, this year debuting as "March for Babies" (formerly Walk America). I think I should at the very least put one last plug on our blog. Yes, this is one of things that have occupied my precious blog time...

Anyway, March for Babies 2008, will take place this Saturday in the Fox Valley. Team Stanis unfortunately has shrunk this year, to merely Jon and I :( We have officially collected only $55 this year... Last year we had seven members and collected $540.

Well, needless to say, we have a ton of catching up to do between now, and well... Thursday morning when funds are due...

So, If you would be so inclined, my March for Babies page is located here... please pledge for our babies who benefited greatly from the research funded by the March of Dimes, and who you come here to read about. Your pledge can be as little as $1 or as much as you would like.

Also pledge for all the other babies like ours born early after complicated pregnancies, and for all healthy babies... because the research funded by March of Dimes directly impacts ALL pregnancies. And visit Grant's Mom, who, like us, also "Marches" for many reasons!

When I started supporting the March of Dimes as my charity of choice, I struggled with one question, Why this charity, and not one of the thousands of other charities out there? I think donating time and money to any charity is important, our family benefited in so many ways by this particular charity, that I can't imagine being so involved in another one at this point. So if not our charity of choice, please pick at least one to donate a little piece of your hard earned cash to... I know it can be hard to give a little back, there is always something else it could go to, but every little penny counts!

Thanks in advance to all who choose to support Team Stanis, and a special thank you to those of you who already have! Your pennies make a difference... impatiently, patiently waiting for our little nephew "Q"...

I am getting really good at this linking business... ;)

Vomit Village or Poopy Palace?

These days are so hard to tell... one day we're all about vomit, then next four is all about poop! Yeah, not nice clean formed ones that stay in the diapers, but the big STINKY wet ones that mush out from all sides... And they never happen during the day time...nope night is the best time to get watery diarrhea. That way, we can squirm around in it making sure that it does leak out all sides, rub some on the bed, the carpet, the stuffed friends, even dribble some chunks out the back end...

Oh yeah, fun times at the Stanis house of keep me the H-E ** out of there!"

Surprise

Sunday was Jon's mother's 60th birthday. To celebrate, we conjured up a fake seminar and asked her to babysit for us. We told her that our regular sitter was out of town, which was a total lie since she agreed to sit for us while we took K out to dinner. My brother in laws and their spouses made plans to arrive on Friday night. So Saturday morning when K arrived to "babysit" she was greeted with a huge surprise. She was very happy and very surprised. I can't think of a better gift.

We had a really great weekend. The kids were able to spend time with their uncles and their Grandma (although that is not unusual, she tries to come for dinner at least weekly) They also got to spend some time with their Aunt Sonja, Aunt Melissa though, wasn't able to make the trip. So we talked with her online for a little bit. It was sad when everyone left, but a little time together is better than none at all.

Thanks everyone for helping us make this big surprise such a success!

Sun

Doesn't it feel like just a few days ago I was blogging about a sunny 63 degree day?

Hmmm, oh that's because I did blog about a sunny warm day just a few days ago...

What the H is up with this weather???

I wanted to post a picture of the enormous snowflakes that are falling outside our window, but I can't seem to capture one... Yesterday morning we woke up to snow cover, and if it keeps on, we'll see more today. I don't see how anyone's tulips are going to survive this.

Development

So over the past two years Jon and I have become something near experts on abnormal child development. Today marks the twins official due date, and the day in which their age, adjusted for prematurity, would be 2. Most text books and developmental guides suggest that by the age of 2, premature children will have "caught up" developmentally speaking. Personally, I have a lot of issues with the term "caught up", but I read some where (you will have to forgive my poor memory, cause I can't remember the initial source) that its not so much that preemies "catch up" but that by the age of 2 human development actually slows down a great deal. A good example of this is clothing sizes. Clothing for infants can be purchased using a scale of newborn, 0-3 months, 3-6 months, 6-9 months, 12 months (9-12), 18 months (12-18) and 24 months (18-24). Suddenly, at 24 months, or two years, sizes change to 2T, 3T, 4T etc. This being because kids stop growing as fast as they did during the first years of their life. Can you imagine how big we all would be if our weights multiplied by 12 every two years?

Anyway, so when the kids turned two, on their real birthday (Dec 30), the doctors and therapists suddenly stop adjusting for prematurity... meaning that they sort of suddenly become three months older. This little change causes big rifts in their "developmental progress" since it looks like they just plummeted off the developmental cliff. So as I am sitting hear today, realizing that this would be their second birthday if Taylor had chosen to wait and come when he was supposed to, well I am noticing that they really are doing quite well.

Since January, Taylor has made remarkable progress. Standing independently, walking, taking on the stairs, picking up objects while trying to stand independently, eating, crackers, purees, chunky purees, macaroni and cheese!!! There are not words to express how much teritory we've crossed in a very short period of time. Taylor's words are coming along, and although he doesn't always come up with the right word for the situation, he can usually communicate his need/desire. Taylor will spend hours sitting on the floor playing an appliance cord. They are his favorite. He likes to plug them into his toys and pretend. He also likes to take things apart... like our remote controls for the TV or his food grinder. He is really into stacking toys, and mixing "stuff".

Livi has made her own progress too, she has become very expressive. She repeats absolutely everything. She has shown an acute interest in the TV, which some would argue is bad, but we let her watch some PBS kids everyday, and well, she is starting to show signs of understanding the alphabet and counting. She is beginning to learn her colors and shapes, and communicates some of her desires so clearly that I struggle to remember how it was before. She can run now and is working on getting herself up on all the big furniture in the house. Livi loves to color in her coloring books. She even tries to color in the shapes. Of course her coloring is just a bunch of curvy scribbles, but the majority are massed inside the shapes in the books. Where do they learn this stuff? She likes to sing and dance, and really likes Elmo (not the tickle me one though) and COOKIE monster. She likes her hair to put up in a "pony" or at least a "ret" meaning barret, and she hates having her head wet.

I love to watch them play together. Sometimes they sit at their art table next to each other, and although I have no clue what they are saying, I could just listen all day. I love it when they push each other in their wagon or walk together. Even just standing together peering out the window at our neighborhood "irdies" (birds) For a few moments most days, our life actually feels " normal".

Anniversary

Yesterday was my parent's 29th Wedding anniversary.

Not a day goes by that I don't think about Daddy, and especially now, as the year anniversary of his death looms near.

I am not really sure how or when Daddy and I became so close, but I knew that his leaving this world would not be easy for me. Jon and I actually talked about that a lot during the last years of his life, and though I often asked what I would do when he was gone, neither of us had any answers to this question. Nearly a year later, I still don't have an answer to that question. I guess I may never have that.

Lots of things remind me of Dad, some make me cry, some actually make me laugh, but most just simply remind me that he was here. And on his anniversary, I am remembering how he always got mom plants. Poinsettias at Christmas and Easter Lilly near their anniversary.

Just because we can't forget, I think Mom's table needs some lillies this year too.

Happy Spring

So we all woke up feeling much better this morning. The kids ate like little piggies...which is good since they haven't eaten much in last few days.

Yesterday I was really depressed that the weather was SOOOOO super nice, and I was stuck in house feeling like crap... so today, I am so going to make up for it. 63 degrees is calling my name, we are head outdoors!

Buckets of Vomit

It all started on Tuesday, when Alivya, who had a great morning, woke up from her nap vomiting everything that she had eaten that day. She had a pretty healthy breakfast too, so it was REALLY GROSS! Luckily, it all happened before Tanya left for the day. We cleaned her up in the bath, then Tanya took care of the grossness that lay in the bed... Thanks Tanya!!!

Livi went on to vomit several times that evening, and laid around lazily for several hours until bed. Tuesday was a better day, until around 11:20pm, when she began vomiting again. We all thought that she was a little backed up in the poo poo department, so Jon went to Walgreens to get some Glycerin. We gave her the meds, and in an hour or so, she pooped! Poor thing she was a little backed up, but that turned out not to be her whole problem. Wednesday when pretty good, and we thought things were getting better. Thursday they had their last Synagis injection to prevent RSV. Yeah, unfortunately, Livi ended up vomiting yet again. We decided to call the Pediatrician's office, and they said there was a GI bug going around. If she was not better by Saturday, we should call back.

So Friday had been going really well. No vomiting, that is until we were finishing up painting at Tanya's. Taylor started vomiting, and didn't stop for at least an hour. We put the kids to bed and decided to order carry out. It was fine going in... but it really sucked coming back out an hour later. I spent all night vomiting. Jon was such a trooper though, between me and Taylor, he kept everything under control, and waited behind me as I attempted to bring up all my in-erds. He got up with Taylor at 6 this morning, who was screaming "APPLESAUCE" in his bedroom. Me, well I was still vomiting, stomach acid... nasty stuff.

I called my mom at 7:20am when I realized that we were in no position to handle our kids under the conditions... which only got worse as Taylor vomited, then Alivya, and then, Daddy.

My poor mom just kept saying, "I better not be next..."


Prior to our sudden onset of nasty GI illness... I was going to post about Alivya's anniversary, which happens to be today. On this day two years ago, we made our final
trip to Sinai Medical Center in Milwaukee, where we walked past the new jungle themed mural for the last time, carrying our tiny 5 pound baby girl in her enormous infant car seat. Her little eyes, still immature from her untimely birth, rolled around in her eye sockets, she still took only 2 ounces of formula per feeding. She came home with no monitors, no oxygen, special extremely expensive formula (that could not be found locally), and on many meds... but was very healthy.




From the infirmary... Wishing no one else,

Buckets of Vomit!

Dacker? Dacker? Dacker?

This word has been our children's favorite word fro well over six months. The letter C has not been an easy letter for them to learn, and thus gave rise to "broden", "doat", and the ever famous "dacker". Its the first word they say when they get up, the last word they say when they lay down for nap, the first word after nap, and usually the last word at bed time. And of course, they don't just say the word, they actually want a cracker, morning; noon; and night...

Now before Friday, this was pretty frustrating for us because we would give each of them a cracker, and find bits of Taylor's all over the house. He would suck on them or lick the salt off, then abandon them where ever. Sometimes Livi would pick them up and eat them, but not always. And it never failed that Taylor would be back pulling your finger asking for another. So Friday, they were running around sucking on ritz crackers, when we looked up at Taylor who was shoving the last tiny bit of cracker into his mouth. He looks up at us and grins, and says "more dacker?!" Yes folks, he ATE the cracker. He ATE the WHOLE CRACKER. He bit off bits, chewed them up, and SWALLOWED them down!

Jon and I looked at him in complete amazement, and then, he ate another!!!! For those of you who maybe don't know Taylor, he has had a complete oral aversion since his discharge from the NICU in June 2006. We have sustained him on continuous and bolus tube feedings which until January of this year he was still vomiting out daily. Since January, he started eating more baby food, it started with one small number 2 jar, then two, then a big number 3, then two, then sometimes three... it is simply amazing.

Now we have a grinder that purees everything that we eat, so we mix it with a jar of baby food for him. In a typical day, we feed him by tube only one time. He is taking about 2/3rds of his required calories by mouth!!! This is so exciting that I can hardly contain myself!

Blogs and repitition, or Jonathan venting...

Anyone else notice how much some blogs tend to repeat the same thing over and over again, especially how-to blogs? I just watched a video on photography and the top 10 tips for portraits. For some reason I keep thinking there is going to be something new in these. There never is. Rule of thirds, be prepared, take lots of photos. Also, there is not enough info to go around so every blog about a specific topic covers the exact same thing. Is some ways it is important to be reminded of things, but not all the fricking time. I subscribe to learn new things, not be told the same thing over and over again.

Feels like I am looking at a magazine rack in the checkout aisle where Cosmo, Seventeen, or Women Weekly magazine always have the 10,000 hottest looks, 50,000 new ways to have sex, and the greatest diet in the world that is finally going to get you to lose that weight. Like the magazines, I read the title of the blog post and more often then not move on to the next one.

Some Pictures

Here is a sampling of pictures we have rcently taken.

First, from our trip to Minnesota, Sonja wanted some portraits.





We also took some images of Ruby, a baby with Down Syndrome, for our brochure for the Walk America fund raiser where we will be taking group photos.

The Color Purple

Everyday we marvel at the many things that our brilliant little children have picked up. Recently, we have been working on shapes, colors, and numbers with Alivya. Mostly because she seems to be interested in learning them. She also sings a very interesting version of the ABC's and the Monkey song... anyway, we have managed to teach her two colors... pink and purple... I suspect this is because they make up the majority of her wardrobe. Its so fun when she points at something and declares it to be "purple"? She looks at us for praise. Unfortunately though, now she points at EVERYTHING and declares "PURPLE!!!" She is cute enough that we could allow her to think colors change to her will, but then she'd end up like her father, arguing about what is red and what is green... sorry dear!

Taylor's chord obsession has gotten out of control. This afternoon he found the chord to the stereo, removed it and promptly plugged it into an outlet in the other room. So smart. He also finds great humor in unplugging our Mac, and plugging it back in. There is something super fun about these new magnetic Mac chords!!

I guess we'll end this post in Livi fasion...

Buh bye

Do you have a Wii-Man?

Hello,
My name is Julie, and I have a "Wii-Man". Previously known as a "Cube-Man", "64-Man", and always a "Gamer-Man". If for some reason you don't believe me, you should look back in the archives of this blog. You will find many, many reviews of games; pleas for games; oh and some drooling; over the Wii well before it came out! Yes, I have a "Wii-Man", my man belongs to Nintendo. He knows ages ahead of time what new games are coming out, his wish list is never ending, and even working 45 hours a week and having twins, not to mention our own business, he still finds many moments for gaming. To suggest that this will ever change is absurd, but I am continually amazed at his ability to fit it in.

Tonight I have fed this monster. Yes, he is the proud owner of SmashBrothers for the Wii... when will the insanity end???

NEVER!!!

Anyone else need to join my gamers-aholic anonymous group?

Glasses

Its refreshing to know that there are at least three people alive out there, I will be sure to send Will Smith a note. (The movie, by the way, wasn't too bad. A bit confusing at times, but that maybe simply do to the fact that I live in a "hole". I never heard of the movie, so when we started watching it, I was like what are we watching? Sweet clueless Julie!) Anyway, I feel better babbling on here knowing that at least two other people will read it.

So yesterday Tanya says to me, "where are Alivya's glasses?" I say, "I would guess upstairs where ever Jon took them off last (Sunday) night." She says, "Cause I didn't find them in her case." I say, "yeah, Jon's never really found her case." So not thinking anything of it, she goes upstairs looking for them. She finally discovers them under their blankets on the bed, in four pieces. It seems my children thought they would work better for Livi if they had no ear pieces on them.

So Livi will be without glasses for a little while. She has a follow up eye appointment in April, so it really doesn't make sense for us to buy new glasses when the script could change in a month. I think she will be deeply saddened. She likes her glasses. And what will Taylor do without something to rip off his sister's face?

Anyone ALIVE out there?

Just thought we would ask... we thought a post of Taylor, yes I said Taylor, eating Chili was sure to get some feedback! Clearly, we were mistaken. Tay is a lean, mean, eating machine these days. Today he ate two jars of food for breakfast, two jars for lunch, plus two tablespoons of Livi's Chili and a tablespoon of Pediasure in a cup, and who knows what he'll eat for dinner! The kid is eating us out of house and home! While we are all very excited about his new comfort with everything pureed, we would like to see him drink more (anything) and learn to chew so that we can kill the puree. Baby steps they tell us. I am beginning to forget what that means.

In other Taylor news, he is a walking machine too. He started taking steps mid January, and has improved immensely in a very short period of time. We still have the walker and gait trainer to help him build stamina, but by all definitions, he walks. I can't really put into words how nice it is to see the two of them interacting together like two "normal" toddlers. They chase each other around, talk to each other and of course steal each other's toys and trinkets. I love to listen to the sound of their giggling off in the distance that is our house, and I simply can't wait for the warm weather to come around. We need freedom from the confines of this house!!!

Both kiddos are becoming very expressive. They learn dozens of new words everyday, and seem to be forming simple phrases on their own. Livi knows if she says please, that she is more likely to get something that she wants. She also is starting to imitate song and dance, which is incredibly adorable. This afternoon she sang her version of the ABCs while making the Twinkle Twinkle signs. Too cute. She loves to sit at the piano and sing too. She has very emotional conversations, most of which we don't understand, but the few words that we do get sometimes make us wonder. She is starting to understand colors and numbers too.

Their favorite toy right now is the blue vacuum that they got for Christmas. They spend hours just running it along the floors, I wish they were not so afraid of the real one...! Livi loves to read, all day long, and Taylor loves chords. He can spot a chord from a mile away, and he'll get it, just try to stop him. They both refer to the computer as "baby" I am not sure why. But they come up and look at the screen and squeal "baby!" Their favorite person is Daddy. And even thought everyone who walks through the front door is called "daddy" no one is a substitute for their poor Daddy. Who is feeling a bit under weather today, and even as he naps here on the couch can't get away. The kids have been running up to him going "Dada, dada,!!" and pushing spoonfuls of imaginary food into his lifeless face. A moment I really wished I had the camera sitting here with me.

So if anyone is actually ALIVE and reading this, maybe you could drop us a little note... we're not feeling the love these days.

Taylor Eating Chili

Part of our trip to Minnesota a couple of weeks ago.

This Week in Photography

I am posting this for two reasons. One, because I shamelessly want to win the free year subscription to Lynda.com, a online training sight. Two, because I love TWiP. This week in photography is a new podcast from the creators and contributors of This Week in Tech, This Week in Media, MacBreak, MacBreak Weekly, and a ton of other great podcasts. They are the core of my podcast listening library. I love this show because it is a knowledgeable as other photography podcasts, but with the production quality of the TWiT/Pixel Corps networks. Here is the link.

http://www.twipphoto.com

Riley

Sending our thoughts to Riley for a speedy recovery!

360 Posts

So there are two really good reasons why I do not sign up for those challenges to post every day... Taylor and Alivya. There are a whole host of other not as good reasons too. So my apologies for the long silence. Things are, as usual, crazy here. Taylor started walking about two weeks ago, yes I have been waiting for a video to divulge the good news. But I have a sick feeling that its a long way from being posted. I know, I should just learn how to do these things for myself, but then what would Jon do??? ;)

So between two, two year olds, chasing each other all over the house, and work, MOD (yes, somehow I became captain of not one, but Two teams this year, oh and the planning committee), J&J Studios, and normal housewife stuff, I just don't have time for much else.

Both kids are soaring in their vocabulary, I am absolutely amazed by the words they have learned, the ones they repeat (oh no!), and how much they are comprehending of those words. Yesterday Tanya was reading Livi one of her favorite books, Mr Brown Can Moo, Can You?, and before she finished the sentences, Livi did it for her. She new all the ending words on each page, and with enthusiasm. It was really cool. Taylor's pronunciation is not as good as Livi's but he tries! Livi has very serious conversations with Taylor, they hug each other, talk baby, and make big gestures. Too funny. They love to interact. Right now they are fighting the napping concept that I thrive on. Alivya has been sleeping and napping in her toddler bed for about a month now, and Taylor has been napping in his for just over a week. Somehow we need to get them to sleep in their toddler beds at the same time in the same room. Now there is the challenge. So far they both get out and play, never napping. I keep thinking that its better to do this at nap time, but now I am starting think that we should just try it one night and see what happens. SUICIDE, right?

Any thoughts here would be welcomed.

Also, we are thinking that Livi is ready to start potty training. I took out the potty about two months ago and left it out for exploration. They are both really comfortable playing with it and sitting on it with their clothes on. Livi has been pulling at her pants saying "Poopy" for about two weeks now. Usually she is just wet, but needing a change. I am just not sure where to go from here. To date, I have been pretty comfortable with all aspects of parenting. I had little trouble weaning the bottle, the nook, or any other benchmarks of toddler hood. This rattles me a bit. Why? I have no clue. Again, any suggestions welcomed!

So look for a video... soon... I hope...

Lego

Today is the 50th anniversary of Lego. Check out Google.



Anyone that knows me knows that I am a lego nut. When I was younger all I asked for for any birthday/ Christmas was Legos. Thats it! No transformers (though we did have a few), no G.I. Joe, no Teenage Mutant Ninja Turtles, no comics, nothing... Just Legos. I think they had a lot to do with who I am today, especially my profession as a Mechanical Engineer, and Lego is definitely the company above all others that I would want to work for. I still remember the birthday I got the entire M-Tron collection, boy those are some great sets, and still the best "car" that Lego ever made.



Looking at Boing Boing today I saw that Lego has fianally unleased the ultimate Lego/Star Wars fan set ever. In a word...

WANT!



The Millennium Falcon

At $500 and over 5,000 peices (compared the the Star Destroyers 3,000) this is the biggest Lego set ever created. It is beautiful.

J&J Studios

We just did a sight update over at www.JandJ-Studios.com. Added gallery's, testimonials, easier navigation, and a new look. Go check it out, and please tell us if there is anything you notice that looks weird. I have looked at on 2 computers with 3 different browsers and it looks OK in all of them so far, but you never know.

Job Scams

Having a resume online causes me to get occasional spam from different Internet scam sites. Here is a website for one I received today. I love how terrible the English is.

http://www.norway-network.com.my/

I have no idea how these work, but they must because they are still around.

A few years ago we were going to sell our car and got an e-mail from someone who said they were in Canada. Turns out it was another type of scam where they send you a check and you send some amount back because the check they sent is to big. Then the check they sent bounces 2 weeks later. Great stuff.

You can always figures these guys out by the terrible English they have online, and it is very humorous.

On Doctors

GI last Monday... all goood
Physical Rehab last Thursday... all good
Pediatrician this past Monday... all good

Six doctor appointments, three nurse only visits, one really long road trip... and now... we all have a cold!


Greeeeeeaaaaat!

Thumbs UP

From GI

will see Physical medicine for more Botox tomorrow, and Synagis...

and the Ped on Monday...


Taylor is 25lbs 6oz and 34in tall!!! BIG boy! And stood all by himself last Saturday for about 10 seconds!

Thunderstorm

There is a thunderstorm outside right now, and it's January! That is F&$#ed up!

In a Year

We celebrated our kids second birthday this New Year, and I must admit, its been dificult. Its hard to reflect back on their birth and remember how much termoile it all caused. The questions about would they or wouldn't they, the immediate understanding that we had as parents touching our tiny babies, but being blinded by the love that we held for them. This is not to say that we didn't understand or realize how sick they were, but that deep inside it didn't matter because to us, they were our children. They were the babies that we had dreamed about and patiently (or impatiently) waited for. Albeit they're birth did not go as we expected, they didn't look like the babies we imagined, and yes we grieved the loss of being the first to hold, bath, feed, and care for our children, but standing there at the side of the clear plastic incubaters, none of this mattered at all.

Today, it is difficult for most people to see that there ever was such a sittuation. Those of us who have trained eyes can spot obvious delays in each of them, but to John Doe on the street, they would never imagine what a struggle each and every day since their birth has been. I spend a lot of time trying to wrap my mind around this, but having lived all of these moments, I simply can't put myself in those shoes.

Still, if I had it to do over, I would make all of the same decisions given the same sittuations. I love my kids. I love playing Santa on Christmas eve, I love waking up to thier giggles and gleaful squeals, even after this morning when I walked in their room to find half of the border torn off the walls! I guess they don't favor the jungle theme.

So these are pictures of the kids from early January last year, compared to the Santa pictures just a few posts back... so much has changed!

Q Bert

$#@&!

My bother Tom and his wife Melissa have started a blog about their baby, code named Q-Bert. Check it out at http://babyqbert.blogspot.com/ and see how those crazy Californians do it.

Moving

To the basement!!!

We have been busy all day moving my desk (which turned out to be the easiest part of the move given how much c**p I have come to own) to the basement. NO MORE cute little PAWS carrying off important documents, dangerous (to 2 year olds) implements, or knocking off everything that is three inches from the edge!

Maybe I can finally get some serious work done on my book too! Sorry kiddos and kitties, you've ALL been evicted!!!

Thank you Josh and Tanya and Laura for all of your help today!

Thank you George for the best scanner ever... ok of the three that I have tried anyway. I love this little skinny machine!!! Who knew an image could be scanned without white ghostly lines appearing across the entire thing??? (Definitely not HP!)

We had a great Christmas, the kiddos received so many new cool toys, overwhelming to them and me :) They also are the proud owners of some very hip outfits! Pictures to follow all year long! As indicated above, I made out pretty good this year too! Thanks to all our "santas", I am going to learn how to put pictures on SD cards from my computer... so I can display them on my new digital frame. The kids are also going to enjoy portable entertainment on our many trips to Milwaukee, ala Portable DVD player, and the GPS that the kids so generously bought us on Black Friday will be sure to get us there on time! Jon got some toys of his own, but I think I will let him share later. We were exhausted, but we had such a nice time visiting with Jon's brothers (and their wives/fetus'). Both the kids surprised us by repeating all of their names during their short visit, and although Casey took some time to warm up to, they actually allowed everyone to hold and play with them. Brave! We enjoyed watching our family open the gifts that we had for them too. I always hope that they love it as much as I think they will.

Christmas will definitely not be the same next year, but looking forward to Thanksgiving! You simply can't deny us our baby fix Tom and Melissa ;)

So for most people this week is about getting back to "normal", in someways it is for us too... "normal" being chaos! Tanya graciously cleaned and straightened up my house after the Christmas hurricane passed, and assisted me in preparing three batches of fondant cake covering for the big Birthday Bash planned for New Years Day. I still have to pick up birthday presents for the kids, but I have been simply too busy preparing three batches of butter cream frosting and six cakes (well three double layered!) The point is, the "end" of Christmas signifies a whole busy season for the Stanis'! If my monstrosity (the lego cake) turns out, I will post pics soon. Cross your fingers and say a few extra prayers! I have spent too much time planning for this to fall through!

Merry Christmas, Happy Holidays, Happy Birthday- Taylor and Alivya at 2:27 and 2:30pm today, and Me in three days... Happy Birthday to us! Ok, I seriously need to go to bed now! Good night.

The Fat Man in the Red Suit

Did not make Taylor happy...


And Alivya was very shy...

But was still very cute.

Off

To see the big man with the red hat!!!

Drowning in Vomit

Although vomiting has been a "normal" part of our lives since around August of 2006... todays vomit is different. I woke up listening to Taylor attempt to vomit in his crib at 7. While dressing him, I had to stop twice to let him try to recover. There was nothing in his tummy at this moment, so there was nothing to vomit. During his first morning feed, he vomited more than four times small amounts of mucus and stuff... During his second morning feed Terra held him the whole time, gently rocking. He made it 236ml, then... well you know... We laid him down for a nap, and got him up around noon. He was up for only about twenty minutes and attempted to vomit three times. We decided to lay him down again. He is running a very low grade fever, but does not have a runny nose or any respiratory symptoms. Livi is doing fine... actually she even ate the da*n raviollis that we have been trying to get her to eat for three days.

So Diagnosis?

Stomach flu?

I need a stiff drink!!!

I'm going to be an AUNTIE... again...

Yesterday was a really great day! Jon and I found out that we are going to be an auntie and uncle or a "blood uncle" as Jon calls it!



CONGRATULATIONS TOM AND MELISSA!!!!


In other news, Taylor ate a WHOLE jar of Mango baby food in one sitting yesterday, then at dinner, he ate 3/4s of a jar of sweet potatoes. This morning he finished the sweet potatoes and ate half a jar of apples and sweet potatoes!!! Who is this kid???