Blowing Bubbles

We went to my mom's for Christmas, we had a good time. Fun visiting with family, good food, and a few presents. We had a pretty good sized snow storm blow through here starting at about 2am on Christmas Eve, and we weren't sure we'd make it but we did. Evan was not him self, and we thought it was because of all of the activity, lack of baby proof play areas, and being away from home, but when we got home it didn't take long to realize something else was up...he still has his ear infection. New antibiotics, and he's feeling much better already, eating better and is much more himself.

Evan with uncle Jason, he LOVED riding on his shoulders

Evan got a tent and tunnel from Grandma and Grandpa, his favorite new toy. He says "bye bye" and pulls the two sides of the entrance together.

and giggles while crawling back and forth through the tunnel. He also likes moving the tunnel around the room. I think he thinks it's cool that he can move something so big.

Love this picture

Last but not least, the real reason for this post. Evan learned how to blow bubbles this morning. He thought it was the coolest thing ever, and didn't want me to stop helping him do it, or wait for me to dip the wand in between blows. I thought it was too cute. Did I mention that I love this age? I came home from work today and he ran to the door, got a big smile when he saw me and then said "up up". He was wearing ONE of his new Diego boots, and it was on the wrong foot. I soon learned from Stephan that he was insisting on putting on his own boots, and that's how he wanted it....OK. I asked Evan where his other boot was and started looking for it, told him he needs 2 boots. He said "two (pause) OK". He sat with me this morning while Stephan was taking a shower. He just sat and snuggled with me, and we rocked. Somehow it seems more special to me now, he's choosing to do that. He could hop down and any moment and be off to do lord knows what, but he chose to sit, and snuggle and rock with me. I LOVE it. I called home from work and sang "If you're happy and you know it clap your hands", and Evan played the game with me over the phone. I love this age.

It's a girl?

I bet that gave my parents a heart attack right there. No We're not expecting a baby. We did however get Becky's "baby" today. That would be the piano she told me about within one week of meeting her at the University of Minnesota.

This piano has quite a story behind it and I'm sure you've heard all too many stories about things like pianos....

So here it is. This piano was bought by Becky's great grandmother for her grandmother to learn on. It is an 1890 Steinway piano and it sounds BEAUTIFUL. This piano lived at Becky's parent's house for quite a few years and had some souvenirs from a much younger Kimberlee and a few other nicks. About 2 and a half years ago Becky's grandmother had decided to give the piano to Becky. My parents had offered to pay for the move of the piano as a gift. We had arranged to have it moved by a professional mover with us supplying the help. It sounded like a great deal until the piano mover showed up on the wrong day when our help wasn't available. It was decided that there was enough help available to move the piano without grabbing my parents, Becky and me. On this unfortunate day the piano was dropped on it's face and broke quite a few pieces.

We heard of a wonderful piano repair man through the grape vine and had him pick up the piano and set to work refinishing and repairing the piano. It's been a couple of years in the making but the piano has finished it's trip and is in our living room now. Some people may ask why did it take two years. To that I would answer that the person repairing/refinishing the piano was more artsy and less like an accountant. That being said I would MUCH rather have an artsy person working on this piano who cares more about the look/feel and sound than have a person who would care about the seconds spent on each individual part.

I guess what I can say in bold type good things take time. This piano looks brand new and I don't think we could be happier.

Evan is already trying his hardest to get to play the piano and I'm hoping that continues when it comes time for piano lessons. I know I'm looking forward to learning to play it and I bet Becky is just chomping at the bit because the piano showed up literally 3 minutes before she had to head out for work today. I don't think I could blame her if she woke us up this morning at 2 or 3 AM to play it...I know I would have a hard time waiting too.

Bad Mommy

I was thinking today how we've been doing all this talking about Evan's eating, and I had yet to take a video of this HUGE accomplishment. How could I!

Too cool huh! He has two spoons because I had originally given him yogurt and a marinara sauce baby food to choose from, he ended up just wanting to mix the two and dump the bowl of baby food into the yogurt cup, so I took the bowl away, but left him with his two spoons. I guess baby's don't care about their food mixing like we do. Probably pretty silly of me to give him two, ...note to self, don't give Evan two spoons.

Twelve Ounces & Three months

Twelve ounces! Over the past week Evan has started amoxicillin and is feeling better. We know better than to give him high fat foods, and he's been an eating machine. We haven't used his feeding tube AT ALL for the past 4 days, and during the past week he's put on 12 oz! He still has a long way to go to be a professional eater. I'd say his skills are probably close to a 8-9month olds. He's primarily drinking his milk, some juice (VRUIT, if anyone's wondering), and yogurt, we LOVE yogurt. He's spoon feeding himself almost everything, and his skills with solids are improving. We used to have to scoop around the chunks in yogurt, now they go down. Toast is also the "In" thing the past couple of days, and he's swallowing some of that too. I'd say most of it, goes in, gets chewed and then gets spit back out, but he's not gagging on those little fine crumbs that come with toast, and that's HUGE. His teachers at ECFE thought he looked like he was "pudging up" this week.....I'm so proud. He's still too light for my liking, but as one of my coworkers said "yeah, well you probably won't be happy until he's a linebacker"....they're probably right. For now I'm happy we're eating, growing, playing, developing....life is good.

I called Evan's GI doctor's office today....I'm starting to think were actually on the path to getting rid of this tube....FINALLY. I wanted to know when they thought it could come out (his GI doc is 3 hours from here, and we don't see him all that often). They said nothing could go through the tube for 3 months, no meds nothing. Well, Evan has been taking his tylenol, amoxicillin etc by mouth for the last few days as well. I hope the next three months go like the last 4 days have *crossing fingers and toes*, if so, the tube is coming out, and the party's at our house! I'm trying to stay a bit grounded in all of this too, I know that this entire journey has been ups and downs with a slow general trend in the up direction....for the most part....some set backs are bigger than others I guess. But a girl can hope right? I feel like I can....hope, that is, for this tube to come out, and I couldn't always say that.

In other news we're busy trying to redo the office. My dad made us an awesome oak book shelf to hang on the wall, which I'm staining tonight. We're painting the walls a fresh new color, stephan made some curtains, and we're sorting through things. I can't wait till it's done. The office has been pretty much unusable for way to long now. It's time it gets straightened out.

Hope you're all having a great holiday season.

Bentleyville

Last night we went to Bentleyville's tour of lights. It was Evan, my dad, and my first time, Stephan's been there before. I must say I thought it was pretty darn cool that our community puts up this even for free admission. All they ask is for free will donations. There were all sorts of characters to meet, and Evan thought they were really neat, he had big smiles for all of Santa's reighndeer, and Mr. and Mrs. Frosty. Santa was there so you

could get your picture taken with him, but the line was quite long, so we opted out of that one. Fire pits were burning hot so you could make your own smores. There was complimentary cookies, coffee and hot chocolate. Evan HAD to hold on to his cookie the WHOLE way through Bentleyville. We had to alternate hands with his mittens....at least it wasn't TOO cold out.

There was also an ice rink outside. I pushed Evan along on the ice, he was all smiles, we didn't catch the greatest picture of them. We were pushing across the ice to get to the car on our way home, notice Evan STILL has not parted with the precious cookie. You might have to take another look at the pictures blown up in order to see Evan's smiles well.

One of Evan's favorite words lately is "waaow", a version of wow that makes you instantly think of the turtles from finding nemo when he says it. He was asleep when we first got to Bentleyville, and he woke up to see all the sparkley lights, and what did he say his whole way through Bentleyville "Waaaow", too cute.

There were some really cool displays. My favorites were the tunnel with all the lights just thick above your heads, and the displays that really looked like the William A Irving ship, and the Canal with the Lift bridge. I can not immagine all of the work and planning that goes into this event, and it's running from mid Nov, through the end of Dec, everyday. Thank you volunteers! We had a great time.

PS. The hat my dad is wearing is complementary of my little sister (she made it for me a few years ago) it's the only extra hat I had that would fit him : ) The pictures are in reverse order, they start with the end of the night and work towards the beginning.

TOO COOL!

I can not begin to tell you how cool it is to spoon feed your kid. He's pointing to foods he wants, opening his mouth, using his lips to remove it from the spoon, and swallowing, amazing. Still love the sound of him sucking and swallowing....I know, I'm a total geek right. He's also started chewing on things more...some goes down, most gets spit back out, but still, he's practicing chewing...very cool.

So if that's cool, wanna know what's WAY too cool? Evan feeding himself with a spoon! He's been practicing off and on, but tonight (granted it was messy and not all of it went in him, but the majority did) Evan used his own spoon to feed himself TWO, yep TWO tubs of yogurt AND maybe 1/4th of a jar of baby food. I know, you're all floored right, wish you were here to witness the big event....too cool.

Obviously today was a good day with eating, we've had a good amount of stress over this whole thing lately. First we had some really bad days of eating until we realized that I stupidly brought home whole milk lactaid for Evan. He only started to stop vomiting when we switched him to pregestimil which has 50% pre-digested fats. All I can say for myself is I was worried about him gaining weight and thought..."hey, whole milk = more calories", you think I'd know better. We switched to 1% and eating picked back up. That and he's either teething, or has a cold which didn't help either, but the last few days have been great eating days, and well, that = less stressing in this house. Evan's been down to 10ml of coconut oil and 1 7oz bottle while he sleeps at night through his tube for the last bit here, that's it....Go baby GO GO!

Other than that Evan's great. He likes legos, trying to dress himself, wearing any type of shoes that are too big, drawing.
His favorite games are to play "git you" where we chase him and then he chases us around the house. Being tossed on the bed and jumping he says "redy, redy" when he wants to do either, we toss him on 3 and he giggles hysterically.
He's wanting to be more of a big boy, insisted on using a step stool to wash his hands, and HAS to brush his teeth when we do.
Don't be fooled if you find him laying on the floor like he may have just fallen.....he probably put himself there to trick you and see if you'd come give him a hug. I've told Evan that this isn't neccessary and he can just come and ask for a hug any time he likes, but he sure does like to see what new people will do when he tries it on them.
He's talking on the phone now....and has a toy cell phone from uncle mark that is one of his favorite toys. He runs around the house saying "hello" while holding it to his ear. He said hello when the phone ran a couple of days ago too.
He's climbing a lot more....I gotta say, I just love this age, he's so lovable, and loving, cute and the development is awesome.
Aunt Mary if you read this blog, Evan's favorite book right now is the dirt on my shirt book you gave him, and his favorite stuffed animal is the prayer teddy I'm pretty sure came form you. He HAS to bring it to bed with him, or he melts down.

Child of mine

We've had a lot of up and down days lately, but a couple of times during the past couple of days I've been feeling very lucky to be this boy's mom. He's so funny, full of life, smart, loving (he still hugs and snuggles, I hope that never goes away!)/, and just plain ole amazes me all the time. Enjoy the new pictures : )

We were trying to get a picture of Evans tatoo laden face courtesy of the fruit roll up I gave him (not realizing it had tatoo properties).

I know it's late, but here's Evan in his halloween costume.

Who doesn't LOVE that smile?!

Sometimes he looks so grown up to me.

Recently Evan climbed up onto the couch, grabbed his sippy cup (he almost always has a remote, walks around holding it to his ear and says "hello"), and positioned himself like this.

It reminded Stephan of this picture. Stephan placed the remote and Dr. Pepper in this picture however : )

It's extremely difficult to get Evan to look at the camera for pictures lately. He's always more interested in something else, and usually wants to get down and go, go, go.


Most pictures of him on his own have some sort of motion in them.

Since we were doing some then and now. Here's Evan last november.

and tonight, he has some chocolate on his face, we'll excuse him : )

He thought it was too cool to wear daddy's safety goggles. I thought he was too cute in them!

He kept trying to touch his eye, was learning about glasses.

too funny. One of Evan's jokes lately is that he'll come up to you and say "joke", and then start laughing, you can't help but laugh with him.

Evan's been more interested in toys since he's been eating by mouth more, I came home to find him like this about 2-3 weeks ago.

He's been carrying around a bear lately, he holds it too his face and says "ohhh, ohhh" while hugging it. I think it's because we always said "ohhh" like isn't that nice and soo cute when he'd pick them up. Love the bear.

Who wouldn't want to listen to baby giggles.

Evan's obviously ticklish, but you'll also get giggles by chasing him around the house and saying "I'm gonna git you". He requests this game by saying "git you, git you". He LOVES riding on dogs, and thinks it's hillarious, the dogs......they don't think it's as great as he does, but they don't object too much either. After we let him ride Paggy sue the first time, he kept walking up to her, putting his hands on her back, raising one leg and saying "up, up, up". Began to question what I started when I saw that! He also LOVES being tossed onto the bed. We count to three and then toss him. He'll request that game by saying "three, wee".

National prematurity awareness day

I recieved an email from the march of dimes today. It notified me that today was National Prematurity awareness day. It also gave an update on some statistics regarding prematurity. Like our nation recieves a grade of a D. We as a country have a higher rate of premature births than most other developed countries. Every year 1/2 a million babies are born prematurely in this country alone. Research, education, support, awareness, all things that have helped to progress the treatment and improve outcomes and survivability of countless medical tradgedies that people face. Had Evan not been born early, I may never have had the understanding of what the March of Dimes mission is, the impact they're having already, nor their goals for the future. Blogging mom's of premature infants were asked to write about this topic today to raise awareness, and so I sat down to write my post.

People who have been reading this blog, and who started with us in the begining know much of the impact of Evan being born early had on our family. You may or may not remember that at 1 1/2 days of life Evan's lungs were showing enough strength the doctors were willing to give him a try on the CPAP machine, and pulled out his ventilator tube. He did well for 1 1/2 hours, then his breathing became very labored, a lung bleed was found, and he was placed back on the ventilator. Evan was born crying, 4 times I heard his crys that sounded more like a kitten's meow, but with my son's fiest infused. He wasn't supposed to be able to do that (try to tell Evan he can't do something). None of us could breath with out a lubricating substance called surfactant. Evan was born too early for his body to know to produce it. Even though he was born crying, even though he had the ventilator to help his weak body breath, it wouldn't have mattered if the March of Dimes and research funded by them hadn't developed surfactant. He had recieved 2 doses of surfactant prior to the lung bleed. 3's the max he could get. By that evening the ventilator could not help Evan enough to breath, a nurse litterally had to stand over him with a bag blowing air into his lungs, and that was declining in its effectiveness as well. Evan's doctor told us they would try the last dose of surfactant, but that if it didn't work, .....well, we wouldn't be here today now would we. This is just one example of how the March of Dimes and the research funded by them has helped Evan. So I thank the March of Dimes for their research, for my son's life, and yes I will try to spread their message. I've created a band in Evan's honor, you can link to it by clicking on the image below. If donations are made using a mastercard they will be matched through the end of the year up to $225,000.

This is not just about premature births. The March of Dimes is fighting for healthy pregnancies, and good outcomes for all babies. They've lead the way with newborn screenings for treatable conditions that could otherwise be detrimental. They work to educate pregnant mothers how to have the healthiest pregnancy possible. If you're interested in some of the other things the March of Dimes has done over the years look at this timeline www.marchofdimes.com/789_19318.asp

I guess we all have something, battles to fight in our lives. We all have been touched in one way or another by different events that occur along our journey. When something impacts us so deeply we are moved to try to take action. We heal by trying to help others, and fight back at that which has caused us pain. HOPE for a better tomorrow is a WONDERfUL thing!

Breathe

So it's been a long time since I've posted about Evan, his eating, vomiting etc. I guess it's just one of those things. I feel everyone knows we've been having trouble, and it's definitely not usually the highlight of our day. Usually I'd rather talk about the more fun stuff, but today I have some exciting news to share. Evan has been eating on his own (well, minimal help on a few scattered days) during the daytime for the past 2 weeks!! During the first couple of days he dropped from 21lbs 9oz to 21lbs even, but he's held steady there since, on his own. Overall he's gradually increasing the amounts he's taking. I can not describe to you all the feelings that are going with this. Yes, there's excitement....my heart soars and I nearly cry when I hear him suck and swallow...happily, drinking....it's the best thing since.......well, nothing tops it at the moment. I stress.....every parent wants what's best for their kid.....for so long we've been trying every trick we could come up with to get him to gain weight, maintain weight, stop puking......calculations, endless trials and errors, it's been a HUGE part of our life. Now I'm supposed to just stop feeding him, let him take control, and I watch the clock...how much has he taken so far, ....it's not enough...he's having bigger eating days, and slower days (I'm assured "normal" kids do the same. We weigh him, he lost that first 9oz....I have to tell my self, breathe, this is normal, he has to learn hunger, and what he has to do to fix it. He's not going to eat 100% what he needs to right away.....breathe, trust your child, he has the skills now, he's ready.....breathe, don't panic, don't start feeding through the tube again....breathe.
He's still getting a night time drip with a significant portion of his calories, 50ml/hour of 30cal/oz for 10hours, and he's still getting his 10ml of coconut oil, we still need to help him burp through the tube, and during the day, on occasion, we've had to give him some pedialye or water, just to help catch up on hydration....he feels better, and then eats better after being good and hydrated. He's definitely drinking more than eating, textures are still a big hang up, if he gets something that doesn't feel right in his mouth...he still gags some to get it out. He's definitely getting more opinionated about what he will and will not eat....if he likes it, down the hatch willingly....takes one look at something and if he thinks he won't like it it's not getting near him. Hence, I went on a crazy shopping spree.....kept grabbing things off the shelf thinking...maybe he'd like this, or this or this. Stephan says I should just offer him one or two things, let him focus on them, he'll eat better. I try, I'm not very good at that. If he doesn't seem to want to eat something....off I go to get him another choice....probably need to cut that out.

We're seeing some really cool changes with this though.
His attention span is so much better, he's playing with his toys more, and reading books with us way more often, and for longer periods of time.
He's eating solids off of a spoon....for me (he's always done it better for Stephan, and sometimes not at all for me), happily, willingly, opening his mouth....sometimes even pointing at the jar and saying 'doyousee" when he wants more.
He's started telling us when he's hungry....a couple of days ago he dug his bib out of the laundry basket (clean, just not folded), and tried to fasten it around his neck, brought it to me, and left it on when I put it there, then went to where his highchair table was, pointed to it and said his 'doyousee' again, put him in, and he ate! He's going to the cabinet, asking us to open the door, picking out something he wants, and taking one (gold fish, puff, sugar wafer, whatever) out and walking around sucking and gnawing on it.
We accidentally programed his pump wrong two days ago.....forgot to clear the dose delivered on it so he only got 80mls and it shut off, dumb thing doesn't beep when the dose is delivered....we woke up to Evan crying like something was wrong, at 5am....found the bag full of food....he was hungry! We made him a bottle of juice and milk, he drank some of each about 5-6oz total, and went back to bed....WOW.....I know, sounds simple, sounds NORMAL, I could cry, pee my pants and dance a jig all at once, while at the same time some one should get me a stiff drink be cause holy crap he just missed all that food on his night time drip......don't panic....breath.
Last night after I went to work (leave here about 4:30pm) Evan ate 1 1/2 oreo cakesters, 3/4jar of baby food 1/4-1/2 container of yogurt, a good 8 or so oz of milk with carnation instant breakfast in it, and a couple of oz of juice. Before I left he'd drank about 5-6oz juice 5-6 oz of milk with carnation instant breakfast, and only taken about 10-20 bites of baby food/yogurt etc total. Today was one of the biggest days of eating, on a bad day he's not eating nearly as much, but like I said the trend is up.
He's not vomiting! Only a couple of gags here and there with foods that have textures he's not comfortable with yet, but even then it's like 10-15mls total max....spit ups! yeah! It's like something is clicking neurologically with him, he can eat things by mouth that we could never dream of giving him down the tube, beacuse instant vomiting would insue, I can't explain it, I just know it's happening.

SO, today our OT said we needed to cut back his night time drip. I freaked, practically started shaking, my hands went to my face instantly and I started shaking my head no. We've tried taking him off the tube a few times in the past keep in mind....and he just went almost 48hours on like 10oz of food total....didn't go well. All that went through my mind was....he's not ready, it's only been 2 weeks, I'm scared....he's too little already....look at my kid...he's too dang skinny....he's going to loose weight......he needs more time, to get better at this, more consistent, eat more solids.....cut back his night time drip.....it's too soon (all thoughts going through my head). The ironic thing is that usually she's the one encouraging patience, reminding us we need to go slower than we think, keeping us sane, and reminding us we are making progress when it seems like there's none. Usually I'm the one pushing that next first step.....now she's saying go, and everything in me is....not saying no...but like I said, there's a lot of emotion with all of this. I thought, OK, we could cut back an hour, and I could just increase the rate by a little bit every hour to make up the difference, and then he'd still have more time to be hungry because it's stopping an hour earlier ....right? She didn't like that idea...."no, you need to cut back and not up the rate". AHHH

Tonight Evan's drip just stopped about 10 min ago...close to 3am.....I'm scared, but singing my mantra....have faith, believe in your child, he can do this, give him a chance.
If not, we will still be ok, we'll up the tube feeds, and it'll be ok, but there's all the excitement too, I want him to succeed, just stressed, because I don't want to screw things up, and I seem to have a million ways in my head that we could do that.......breathe.

Bookie!

Last night there was nothing unusual about when we laid Evan down to sleep, other than he SHOULD have been exhausted because he didn't get his full naps and daylights savings time. He SHOULD have fallen right asleep, instead we heard him talking to himself for a LONG time, we wondered what he was up to, but just figured he'd be out soon, and if we went to him, he'd be up to play. Well, about 2hours after we laid him down, we heard a thud....??? OK, time to go check what's going on in there. This is what we found.

BUSTED!

Evan had about 6 books in his bed off of his bookshelf. He was very nice to them, no torn pages, but they'd definitely been flipped through.

He'd reach for more and say "booky", and bring it into his crib, flip through the pages saying "open" and then begin random gibberish.

He'd say to me "dousese, booky, mama" Evan for do you see see. Too funny, Too cute.....Guess we need to move his bed from the book shelf huh?!

Learning how to dress himself...Evan put on one of mom's shirts and ran around the house proudly wearing it.

Putting moms "shoos" on, they're black muk luks and are hard to see in this picture next to the black rug.

Evan loves opening and closing doors lately, here's what happens when we take the garbage out of the cabinet.

Evan's always on the move now, making it difficult to get a good picture (just ask grandma). He runs around the house saying "Go Go Go" and "walk walk", but Evan's version of the word walk sounds a bit more like a four letter word we'd really prefer him not to know....need to work on those W's!


He loves to go outside, and will say "outside" and PUSH on the door with both hands and grunt!

Yeah! Outside!

Just cute. Helping mom and dad cover the roses for winter.

Help Please

Some of our best friends in the world are trying to win a trip to Tahiti. They submitted an awesome video that you can vote for once per day now through 10/28/09 at this link
http://investinyourlove.com/contest-entries.aspx?vid=NTA4OQ==

By voting for them they will hopefully make the final 10, and then be reviewed by expert judges. Please consider doing this small thing to help some of our good friends win an awesome vacation.
Thanks
Becky and Stephan

Videos, and Pictures

Roses from my garden. Had to pick the top flowers before they could open properly because of the snow we received.

Paggy Sue, looking at another bug on the wall. Not that we have a lot of bugs in the house, she just finds them EXTREMELY amusing. She'll stare at them for 1/2 hour, and woe to the bug that gets too close to her, then a chase ensues with lots of biting at the air, and eventually either a dead or lost bug.

This is How Maggie makes herself taller. Pag looks amused doesn't she!

First snow of this year, Oct, 9

The first video is from about 1 month ago, Stephan was trying to entertain Evan while he was being tube fed, he sometimes gets sick of having to hold still while being fed. The second video is of Evan playing his new game, he loves opening and closing doors, he also knocks on them, and will say "knock, knock" while he's doing it, and when he opens the door he will often say "hi" to us. Obviously he can not turn the nob on the door, so if it latches, he gets a bit distraught. The last video is of Evan playing peek a boo with a blanket while being tube fed, again, he was fussy because he was bored. He's saying ooooh, because Stephan and I always say "ooh, there he is". P laying catch with a ball is also a good distraction, and a lot of fun. Sorry for the dark videos.