Just bad luck?

So this morning I suspected Dylie's little infection friend was back... Bah! I could have been making it up, but on the chance I might be right I decided that we wanted to nip it in the bud before she got uncomfortable. Especially since last night was night #2 of actually not waking up at 3 in the morning... She is just getting out of the habit that I suspect being uncomfortable last time got her in.

Anyway, we saw a different doctor in the office today, the cousin's Porter and Jonah's Pediatrician actually. While she was there he though he would check, why not? I am not sure if I mentioned this last time but the last doctor (who wasn't her primary doctor either...) just cleaned her up and pushed on her bladder to get a 'sample'. So when we went in last Monday to make sure it was gone I told her Primary nurse that and we were able to get a catch without cathing her... Good right? I suppose the only time being truly incontinent will ever come in handy.

So today the not-primary nurse went to get her primary nurse to see if we coud recreate the magic. Funny enough, the other way didn't work. For a minute I thought we making have to cath, but then the nurse told me to tell her a joke. Haha! So I tickle her and sure enough! Trickle trickle!

When the doctor came back in he said he did know about Dylan before he saw her... she was a talk in the office a few weeks ago. Ready for slight TMI? Dylie grew out a rare-ish kind of bacteria. Not the normal bacteria that they typically see in girls infections (You know.. the poo kind, it's a proximity thing...) He said maybe 1 in 50 grow out this kind. She was on the right stuff before, and she was supposedly clear of it last Monday... BUT it's back! He said he will chalk it up to bad luck this time but if she gets another they might think preventative. (They don't usually do preventative meds unless tests comes back showing reflux, which Dylan's was negative.)

ANYWAY... she's on antibiotics that are apparently 10x stronger. Bah! Good thing she's super cute!

What?!

No one has ever brought you a treat like this?


Sorry, she's taken. I will not share. I am rude like that... This would be the final result of the new pan that Jessica was trying out on us! It's a brownie with a hidden Reeses Peanut Butter cup inside... heated up in the microwave with melted peanut buttery topping, topped with a scoop of ice cream and drizzled with a lovely dripping of home made fudge! It looks super tasty and all here, but I still don't think the pictures does it justice. It was sooo good! Rich though... I couldn't finish but the boys did a fine job.

Also this evening, I think I pretty much solidified that the only person who will ever play Rummikub with me is my dear mother. We need to set up a match sometime mom...

Before the dessert the kids and I ran out to Shane and Traci's because my dad was coming to town and bringing the kiddos a present. He made them each a toy, her a rocking chair and him a town car. I think Duncan thinks they are both his though... and that's fine for now. After we got home I brought them in from the car and you should have seen the look on his face! He was so excited that we got to bring them home. He though they belonged at Abbi's house. He kept climbing in and out of the chair, it was pretty cute. Picture of the chair momentarily.. unless you've already peeked ahead (Traci!!).

So we found out last week that Dylan's PT Pat is packing up her dishrags and leaving town! What? I know! Booo! She got a great opportunity in Canada doing similar work in a great NICU environment. So... not sure when our last week with her will be but I need to take some pictures as I can't see us visiting her in Canada anytime soon. (It's cold there!) We are sure going to miss her, she has been with Dylan since the NICU! I still remember the first time we met Pat, she had all 2.5 lbs of Dylan sitting up in her isolette and she was trying to get Dylie to suck on her pinkie!

Last week while Pat was over she had Dylan on her belly pushing up with her arms and Dylan actually shifted her hip a little. As if to (eventually) crawl! It was great! We are seeing so many improvements in Dylan lately, we are so proud of her. She has even been eating her solid foods a little faster for me. I no longer put in a spoonful and walk away... it only take a few seconds for her to work it out and swallow it down. Yay! We have been trying solids twice a day for a couple of weeks and maybe the practice is paying off!

Have I mentioned that my son doesn't like noodles? This presents a serious problem... have you ever met a kid that doesn't like Mac and Cheese? Now you have... Ramon noodles? Yup, those either. No Raviolis, no spaghetti... it's a serious problem! Jessica assures me that bread and cheese sustain life, I think Duncan's going to challenge that to see if it's true.

The only picture we got of Dylie in the chair, it's a cel phone picture though... who forgets their camera anyway?


He does actually ride the car the right way... but this is pretty fun too. He was going from the chair to the car, chair to the car.

And here's a play by play of the chair...

"uhhhh..."

"Mmmmm..."

"Whoa...."

"Ahhhhh..."

And a chillin' Duncan:

Steve with a chillin' Dylan on Friday night.

Tulips, who needs pictures of tulips?

We had a fmaily adventure yesterday! Bob's step-mom Rae is in town from Nebraska and we all went to the Tulip Festival at Thanksgiving Point. It was basically a big walk with lots of flowers... but Duncan loved it! He loves walks, I should really go walking more, but it takes effort to maintain this figure (and that effort includes no walking and lots of eating!).

I was worried about how Duncan would do without being able to get down for his morning nap but he did great! We finished the walk around noon and then went to a little deli out there for lunch. I had a Rueben, I love me Ruebens! However, this Kraut was more Kraut then Sour, but the meat was tasty. Duncan even lasted through lunch with no complaints. He did fall asleep about 7 minutes into the ride home though!

Dylan only complained when I woke her up to move her form the car to the stroller, then she was awake and along for the ride. No complaints for food or anything! Good kids! I brought the little greaseballs home (sun block) and we all took a family nap, which is what I intend to recreate as soon as I am done typing this! Duncan was all up for a bath last night after dinner at mom's but Dylie's little greasey noggin had to wait for daddy in the shower this morning.

It was so fun, we really need to do the adventure thing again, I think the kids really had a blast. And sorry Aunt Jane - my mom has all the exciting pictures of tulips! I am not all about flower pictures, do I seem like I would be? Ha!

Duncan had a hard time deciding if the pellets were for him or the fish. We had to keep stopping him from eating them. I gave up and handed it all back to Abbi who was enjoying it a bit more. Duncan was fine with watching the fish from Grandpa Bob's height!


Abbi and Rae feeding the fish


They were gross fish too... reminded me of Japan when we went to the Imperial Palace and those nasty beggars were everywhere. Although, in Japan they also had turtles in the water to balance out the ugly fishedness.


Cheeeese! Abbi ended up wanting Duncan out of the picture and I have another picture of him looking at her like "Who do you think you are?"

The crowd except mom and me(and Dylie!) who were off snapping.

Gooses! Geeeses! These little guys were not afraid of people at all. There was a crowd of 20 about 5 feet from them and they really couldn't have cared less. A thoughtful honk from the mom or dad once or twice but no biggie. So cute!

Ohhhh cuuuuute.

We are going back to mom's tonight for a Barbeque, and then Jess and Steve are coming over tomorrow. Jessica got some new pan that will let you make brownies with filling. I love having friends who like to cook! I will be the test subject for any new pan, any time!

Matthew has to run down to Powell tomorrow to finish up some things on the Houseboat. He missed the 'work party' last weekend but I guess there are a couple of things left to get done so off he goes. He will leave really early in the morning to get there early, work for a few hours and then come back. Silly little houseboat. Bah! I need to try and gear up for Powell though, it's the only vacation we get!

Well - Dylan decided 5:30 was a great time to wake up and be chipper this morning so I think I am going to try and get some sleep, we shall see how it goes. Wish me luck!

Can't get enough of her!

On Saturday I just couldn't get enough of Dylan, I mean... everything she did was just super cute. Every look she did, sound she made... I just couldn't help myself. I mean normally I love the gal, a lot... but seriously... I took some pictures to proove it. Bet you won't be able to get enough of her either!

In fact, they are all so cute, I can't even narrow it down to choosing one or two pictures! I think I did pretty good though, there were like 30... and I am not kidding. (Course some were with the back of Duncan's head and his finger in her mouth... nice! CHOMP!)










Right? Totally! I have a follow up Dr's appointment for Dylan this afternoon to make sure her little infection is gone. Hopefully it will be quick, at least it's her regular doctor.

Duncan has this new snuggling thing that we just adore. He will hug, not only you... but any random pillow or blanket that's around. Like he knows that's what they are for. He walked into his room, saw a blanket on the floor, flopped down and started snuggling with it, rolling over and over while hugging it. First thing he does when we get him on the couch, snuggle with a couch cushion! Random... But super cute! Hey, as long as he reserves some of those snuggles for me right?!

Duncan rediscovered the egg chair the other day. Every once and a while he falls back in love with it. We have these squishy pillows that I picked up while we were in Japan and he collected them in the chair, climbed in and flopped himself around to chill. So cute, his whole body was on but his legs were hanging off. Don't ask me where his pants are... he crawls out of them, or we just left them off after a nap. He looks comfy!




Here's Dylie Snuggling with Aunt Beth on Friday, apprently the show was completely entertaining from a 1 year old's point of view.


Cookie day... Duncan was on one, I told you! Matthew even told him that he was afraid that I was making up the bad attitude but Duncan prooved him wrong. Are we mean for taking crying pictures? I even have a video. The naughtiness is rather rare at this point so I just have to capture it, I envision a cute crying scrapbook page!


"My dad is mocking me! That's making it even worse! Waaaahhhh!"


But then they both chilled out with dad for a show.

PS on this house cleaning Monday... I HATE when you put the laundry in the washer, start it but end up forgetting to put the lid down. ARRGH!

What's the Plural of Diagnosis, take two!

I met many of you who read the blog through the experiences I've had with Dylan so I definately owe you a little update! We meet new people every week too... and for you, here's the whole story of our little pickle.

Dylan was born at almost 31 weeks gestation weighing a very petite 2lbs 9 oz, she was 14.5 inches long. Through the normal preemie course, nurses tried to put a feeding tube up her nose and found that there wasn't any room. As a result of that, her nose became inflamed and closed off and she had to be intubated. They did a cat scan and found that her nares were small(Pyriform Aperture Stenosis). Also as a result of the scan, they found a single central incisor which can be an indication of Holoprosencephaly (HPE). At this time, they ordered an MRI to confirm, but that came back inconclusive due to her prematurity.

We did genetic testing and found that Dylan's missing a part of her 7th chromosome, the Sonic the Hedgehog gene (yes, it's named after that Sonic). It's a pretty important gene that is in charge of lower spine, kidneys and brain. While still in the NICU they scanned her kidneys which are fine, and her back, which was not. Turns out she has a mild form of Spina Bifida. She has Sacral Dysgenesis which means some bones of her sacrum are missing (3 of the 5) and Sacral Agenesis, which means what she has left isn't formed properly. The bones kind of split like they didn't come together right. She also had a tethered cord which means that her spinal cord was tied down at the bottom which can cause stress and damage to the spinal cord as she grows. These back problems indicate bowel and bladder control problems which were confirmed recently with a bladder study.

She was in the NICU 89 days, half of it spent at Primary Children's which was where she had the Pyriform Aperture Stenosis repair. She was the smallest baby that the ENT had performed that surgery on. After that, but while still in the hospital she got spinal meningitis. It was a rough little road to home, but she made it!

In June 2008 she got extremely sick with what we later found out was a bad infection. They did an MRI and found a nasty cyst on her spine, a result of the malformation. While she was there they repeated the MRI of her brain and also did a 3d cat scan of her skull to check on her sutures. They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. Those 3D cat scans are very cool, I need to get those images on a disk to have forever. Not everyone gets to see their skull right? In August of 2008, after a month of IV antibiotics at home through a PICC, they decided to go in and resect the cyst tissue and untether her spinal cord.

On her very first birthday she got her 4th and hopefully final in-patient surgery, a Cranioplasty to correct her forehead. This surgery had her in the hospital another 6 days! It's healed up almost perfectly although there are a few places that will require some adjustment later. You can hardly see the traces of the jagged incision that went from ear to ear accross the top of her head.

Dylan also has a common heart defect that affects kids with chromosome abnormalities, an ASD. Some close on their own, however, her's is rather large so they expect that she will have to get it repaired with an out-patient surgery. Our next appointment with the Cardiologist isn't until she's 3.5! We will know more then.

We got the results of the repeat MRI in September 2008, this was a shocker! We found out that our little gal doesn't have a forebrain. This very important part of the brain controls a lot of your reasoning, personality, cause and effect, among many other things. In her case there is no seperation between the two hemispheres of her brain which is what HPE is all about. The good news is that the Neurologist told us that if someone saw her scans and then met her they wouldn't know it was the same baby. So she's doing great. That's the amazing thing about brains, a lot of time the unused parts try to make up for what's missing so you just never know. At 18 months she's developmentally at about 6 months, but at only 12 lbs, she just seems like a normal little baby!

With this MRI we also found that she has very small optic nerves but her eye sight doesn't seem to be impacted which is good. And, she has no Olfactory Tracts, so she might not have a sense of smell, we won't be able to confirm this for a few years though!

Dylan's not an eater so she got a 'button' in May of 2008 but she actually started nursing in October. Recently we have been adding some solid foods to the mix and she seems to get better at eating from week to week.

We also get to visit my cousin Trina at her office every couple of months because Dylan has Thyroid and Pituitary problems. We are giving her daily shots to help her be stronger and maybe even grow a little beyond her current 12 pounds!

We have a cheet sheet that makes going to Doctor appointments much easier. Her file at the Pediatrician's office is 2 inches thick but our cheat sheet sums up her diagnosis, her medications and what her Pediatrician refers to as her 'large circle of friends', a list of all of her specialists.

Although the first year was a crazy learning experience, things have definately slowed a bit. We certainly adore our little cutie! She's fabulous, adorable, and just plain wonderful, I can't imagine my life without her!

He knows what a cookie is...

It's the end of an era folks, Duncan is one smart dart. I made sugar cookies for my family's Easter, silly me for thinking he might forget. So today while I was making more cookies, little mister would not leave me alone. He was under my feet and yelling. YELLING. Like "No mom, you don't get it, I WANT A COOKIE!" And really, I got it. I GOT IT. It did take me a minute or two to realize that's why he was yelling, but I got there. Needless to say, my headache couldn't handle him and he got a special (as in, non-morning feeding time) viewing of a show. Gave me just enough time to finish frosting the cookies and pack them away... never to be seen again... Or at least until his dad gets home.

Easter at the Anderson's

And I really don't mean this Anderson's since it was rather uneventful at our house... I mean Easter with Matthew's family. Chaos abounded in the side yard as all the little ones (and some big ones...) went a little crazy collecting candy and eggs. They loved it.

Think of this many kids runnning around and you get the picture!
All the Anderson cousins... I have lost count.


Wasn't it nice of them all to sit (kind of) still to get their pictures taken? Good kids... especially because most of them were popping Peeps as fast as they could. Can you say sugar high? I don't know who brought what presents for them but all the kids got balls and bubbles and loved running around being a little nuts for a few minutes.

Unfortunately Duncan's feeling a little under the weather, a boogie nose snuck up (or down, ewwwwe!) on him Saturday night while we were playing games over at the Fischios. We are complete slackers and needed to give Charlotte and Shannon their birthday presents from March so we went over for dinner and games. We had a lot of fun but I think it would have went a little better if Duncan was in top shape. He still had fun. He was trying to run away from Shannon... as in, on his feet... running. It was pretty funny since at this point bending knees is optional. We also learned that we will need to get him a little kitchen and fake food at some point I think! Yay for men who cook!

Dylie had a Doctor's appointment last week, I thought something was probably up and indeed, she had a bladder infection. So, after I made the appointment which I thought would only take 45 minutes or so I called on my neighbor to watch Duncan. She's always offered... and she was happy to, so I dropped him off. 2 hours later I picked him up! It took longer then usual because I didn't take into account the fact that her doctor was out so a new one was seeing her. Dylan's file is 2 inches think (I am not kidding...) and I had to sum it up for him. Not only that... but she's fascinating (to more than just her parents =) ) so we chatted a bit. Anyway... it's not like I had to worry, Duncan wouldn't even look at me when I came to pick him up! He wanted to stay with Dana FOREVER! Nice... thanks for making me feel good buddy. Okay, I admit, we have had Dana's cooking, we all would live with her if she'd take us!

I planted my peas this morning... I know a little late again this year but it kept snowing! I think Spring has finally sprung and I hope the plants get bigger than last year, it was a weak pea year that's for sure. Course I am using seeds that my neighbor gave me three years ago, and even then they were old. We shall see in a few months. Just planting tomatos, zuchinni and peas again this year. I will raid Ami's HUGE garden if I need anything else! Yum!

They did get Easter outfits, Dylie's size says 3 months! We got it LAST year, me thinks they labeled it a few months off. She's little, but not that little! Those shoes Kristen bought for her blessing last March... we ended up wearing sandals instead but she had to have options! We were glad she had these though, they were lined in the same green as that sweater! She might grow out of them someday.


Duncan's new outfit... and grumpy face. I am not sure exactly what he's hiding behind his back. Something I am sure.


And what number photo shoot are we on 936? I guess the joke's not funny if I don't remember what I wrote last time but here are a few that we tried to take. Boo to trying to get a good picture of them together but Grandma Shirley reminded me it had been a while so it had to be done (attempted anyway).

Oh how I wish I would have shut the blinds, this would have been a good one! Argh!


Seriously mom?


Let's wrap this up shall we?


Aaaaaaand done!


This is what Aunt Melissa and Uncle Aaron would look like with our kids. Don' they look like such a happy family? Dylie looks deceivingly big in this picture.


Judging by these kisses, she might want to go home with Uncle Aaron!


This is Dylan looking like she's being tortured Sunday night, she's laughing, I promise. We have the videos to prove it and if they would ever get done 'processing' I would share!


Ah-hahahaha


Ahhh, here we go with the videos! Not safe for work... (unless you are prepared to share why you are laughing at the computer screen.)

Easter at mom's

Thanks to everyone for your thoughts and prayers for Jacob's family. I am sure they appreciate all of the support. They seem to be doing okay considering, I spoke with Michelle yesterday and she's very strong. She said that they are trying to focus on all of the positive things that Jacob brought them during his short visit. It just doesn't seem fair and we all have to have faith that there is a plan and it will all make sense eventually.

Friday we went to mom's house for Easter. Crazy kids goofed off all night, and yes that would include Matthew. He taught Greg a few new games and wrestled for a while. I think they both had fun. Meanwhile Abbi was glued to Beth since Beth has such pretty shiney necklaces!

He thought I kicked him out of the picture... Muahahaha... I was really taking one of him!


Say Cheeeeeese! This picture is seriously cute.


Uncle Shane and Dylie, look at her cute Barrett! Mom gave her a few more and this one was matchy matchy with the outfit she was wearing so I just clipped it on.


And another cute barrett picture. This is the sticky uppy/barrett combo hair.


Yesterday I pulled out the tunnel that I picked up ages ago for visiting kids. I just remember Aunt Jane had a plastic blue one and we would always have to take it in the front yard to play. Anyway, it was so fun! He loved it for at least for a few minutes which is something, he's a busy little dude.


I think I need a tent too! They have ones that hook on to the tunnel!

Even though Duncan has decided that he can walk most places... (especially after mom's on Friday!) as mentioned, here's a video of him walking on his knees.

This was taken a week or so ago during Matthews *ahem* quiet (or not so much...) time. Seriously, can we not have a little alone time Duncan? Poor neglected boy.

And the video, make sure you have sound to fully appreciate.

The videos of Dylan finally loaded on you tube, again, sorry about the angle. Whoopsie. My bad.

I am heart broken

I got a call today that absolutely broke my heart and I am just sickened about it. Jacob, the twins' little playmate from the other day, passed away today. I cannot quit thinking about it. Although I know Jacob is in a better place, I can't imagine the pain that his family is feeling right now. Jacob and his family are an inspiration for anyone who has to deal with trials.

From his mom Michelle's blog, written just this last Friday after attending her grandfather's funeral "...at 30 this is only the second funeral in my family I have ever been to. So while I was facing the thoughts of how short life is my mind kept wandering back to the NICU with Jacob. How many times I have seen him crash and have to be revived, the times I have done CPR on him myself, how he has defied the odds so many times and come back to me when he shouldn't have...I guess at least half of my tears were for my son. Although he has given me more grey hair than I care to think about, I CANNOT imagine my life without him. Regardless of how much easier it would be. Thank you God for my beautiful little family!"

You can tell not only what an amazing person Michelle is but also how strong they all are. I will be praying for her and Moroni as they deal with his loss. As for little Jacob, he is now free from the physical ailments that plagued him here. He is amazing, he touched us all in his short 19 months and he will be missed. I am so grateful for the knowledge that families will be together again someday. This is not the end. I will be thinking and praying for you Michelle and Moroni. I am so sorry.

Post number 100! (Shut up! I know!)

I thought I could make this *Really* good seeing as how it's post number 100 and all, but I really don't have much to say.

We are going to mom's tonight for dinner since she's going to be in Rock Springs for Easter. That should be fun, I am handing over Mushi to Shane and Traci too. Emma and Mushi are both feeling a little neglected and need a friend right now. The Paolis can handle two dogs (temporarily) so he's having a sleep over for a few nights. (Weeks? Months? Years? eh?)

Dylan started sitting on her own, kinda... I have to catch her when she goes backwards since she expects someone to be there. In fact, if she is reaching for a toy that she can pick up she will grab it and lean backwards to lay down and play... so really she only does it if there's a stationary toy in front of her. It's okay, she's catching herself forward and that's all that matters, we are dang proud of her.

My video won't get done 'processing' on You Tube, so I will have to take another of her sitting and post it soon.

I have to even out the pictures too, so there's more of Dylan here, last post was a little Duncan heavy.

Aunt Melissa brought over all the little teeny tiny barrets that she used in her girls' hair (or lack thereof) and we were test driving this cute little red one! Isn't it darling? It stayed in pretty well, and the teeny snap ones do too! Yay! Cute little hair!


I will miss it sticking straight up though.


Old school bouncer! We dug this out of my mother-in-law's garage, it has a strap to hold her in tight so she can focus on playing with her hands, I guess the 'new' old-school' ones don't have the strap, and he jungle bouncer certainly doesn't. Unfortunately, we don't have a lot of places to hang it. Goofy smile girl.


And another cute little smile.


Don't feel too bad for him, I am just making him sit on his butt or knees... that's all I ask. What a mean mom! Course it was a little mean to snap a picture when the boobing started. I just think everyone should enjoy this cute little cry face!