Life in Holland

March for Babies '10 at OneTrueMedia.com

2010-03-13T19:46:00.001-08:00

It's that time again, please consider sponsering us, as we raise money and awareness for prematurity!

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Come they told me pa rum pum pum pum

2009-10-10T20:36:00.000-07:00

My Montage 10/10/09

2009-06-18T15:05:00.000-07:00

Back to "NORMAL"???

When I was pregnant with Dane our lives were a constant buzz of coming and going, I was serving God at our church and through YoungLives, our life was so full of family and friends, and life was, well...full. But for the past two years, we had to take so many precautions with Dane (which paid off!) that I almost forgot what our life was like before Dane! Well, I can officially say that we are back to normal, or a new normal, because we do have a two year old running around! Last Sunday we all got up and went to church, I had a full house all day (our own 5 plus 2 more kids), we played Wii, played pool and as I was in the kitchen cooking up a scrumptiously unhealthy (yet inexpensive) dinner of biscuits, sausage, gravy and scrambled eggs. I so enjoyed the old sounds of a full house of people enjoying our humble home...I felt so thankful to have finally reached this place one again! We are once again able to open our home up freely to friends and family, with out making them scrub down prior touching anything or having to leave their own kids at home. Chad and I are actively serving God at church and in our home where we are leading Jr. High youth group...which is going fantastic, because I know you were wondering! Yes, life is back to normal and the conclusion to this discovery: IT MAKES ME HAPPY!!! :)

As for the star of this blog, our little Dane is doing fantastic! He is officially released from physical therapy, and we are getting ready to have him tested for developmental preschool. IF he tests into the school it will most likely be for speech. Though he talking a ton, using full sentences and all that jazz, his articulation is could use a little work. As far as his health, he still needs a puff on his inhaler when he runs around, but we continue to see his stamina get better and better. He is so much fun these days, the other day he had been bugging us to put his TV show on, and when I finally turned it on...he jumped up and down and shouted "I LOVE YOU MOM!" like I had just given him the biggest and best surprise ever! Today we were at Target and sang Jesus Loves Me over and over through out the entire store, which made everyone smile when they heard him...of course I wanted to be like..."Do you know how amazing it is that he can sing this song??? It's not just cute, it's a miracle!!!", but I didn't of course say that, but I wanted to! Dane has shown an interest in drumming since I can remember him being old enough to bang on stuff, and now he has a drum set...not just a little kid, Fisher Price style drum set, but an official drum set (child sized of course!) This adds to the loudness of our home, but we have gotten used to...I LOVE to hear him playing! He also loves to play his harmonica and pretend to play the piano, he loves all things music...but he is still 100% boy and loves to dig in the dirt, jump in the mud, pick up ants even though he gets bit every time, and torment Molly (my Mom and Dad's golden retriever).

That's about it for now...I will try to do a better job of posting, but I can't promise anything! I am working more hours, and quiet time at the computer continues to be more of a challenge. I am on facebook, which I find easier to keep updated...because you can be in and out within a couple of minutes!

Busy, busy, busy!

2009-05-09T17:02:00.000-07:00

Wow, what a busy April and May we are having! We survived another RSV season and we are so happy to have made it another winter without any major health/lung issues! This meant that we got to bring Dane for the first time to the church nursery, do you know that I have dreamed of this for the past two years??? Getting to go to church as a family and drop him off in the day care like a normal family was a day that we knew would come, and we had to celebrate with this photo of Dane in his new shirt and his hair combed for his first day! Getting a decent picture of this child has proven to be more than a difficult task lately, but we did get one decent one with his eyes open...and here it is! Unfortunately I do have to report that he cried the majority of the time and we had to go get him half way through service! He isn't used to being around little kids his age, and I think that if we would have put him in the 5th grade Sunday school class he would have done better! But we are going to try again to ease him in, it will just take some time!

Of course we had the March of Dimes walk which was so amazing, but that day also brought Gage's senior prom! Gage and Jordyn looked gorgeous, and had a great time at prom...thanks to my Mom and Dad, Dan and Kelly, Jordyn's parents, and a little something from Chad and I, they were able to go with out breaking the bank! We all pitched in to help with the cost of prom...I can't believe how expensive it is for these kids to go, it's actually quite ridiculous! But we all made it happen and we were happy to get to see them all dressed up, they are good kids that both work hard and deserved to go and have fun!

Dane had great time at Easter, we had an egg hunt and he was very excited to see that these colored eggs had candy in them! Jake had to make sure to hold him back...Dane was going in for a closer look at Jake's Easter basket!

The rest of this month bring lots of new things for us...starting with Gage's graduation this month! I can't believe that he is graduating and having to decide what to do in life, we have heard rumblings of joining the reserves or maybe even enlisting...time will tell, but we are very proud of the man that he is becoming!

Chad and I have been given the opportunity to lead our church's Jr. High youth group! This means that we will have a house full of Jr. Highers at our home every Wed. night, we will be planning lessons, games, and activities for this high energy group! If I think about it too much I get a bit of anxiety, because it really is a lot of work...but we feel that God has given us this opportunity to love on some kids and share with them what God has done in our life. Now, we have hosted a weekly Bible study in our home, but this is totally different! We will be doing monthly activities as well as planning "Jr. High ditch day" at church the first Sunday of every month, so please say a little prayer for our family...this has the potential to be a huge blessing for so many and we don't want to mess it up! If you ever went to youth group as a child and you have a great memory that you can share with us, we would love to hear from you! (We need to as many ideas as possible...and we ain't to proud to beg!)

2009 Team Great Dane!!!

2009-04-20T13:10:00.000-07:00

WOW!!! What a turn out we had! Our team had over 50 walkers including all the kids! We have so far raised a total of $2800...and we are still collecting money, so if you haven't had a chance to donate our team is still web page will be open until the end of May. We had a lot of fun, and we were once again humbled by all the family teams walking in memory of their babies that didn't make it. My favorite part of the day was when our entire team crossed the finish line together...with our team captain, the great Dane, walking across the finish line first. The little boy born 14 weeks early who suffered so much brain damage that he wasn't supposed to walk...led his March of Dimes team across the finish line at the age of two!!! God is good, and we have much to be thankful for!

I know that Dane looks exceptionally happy in this picture...okay he looks like he is shooting poison darts from his eyes...but I wanted to let you know that he was soooo happy to get out of the stroller and run around, and I cut his fun short by making him sit down for some pictures. I know, I am a big old meany.

Thank you so much to ALL of you who made this possible, I had so much support this year! My entire Starbucks team walked! My Mom, Kelly, Karin, and Tracy all stepped up to make this walk a success! To everyone who donated money: THANK YOU!!! Together we are fighting against premature births, and helping all babies have a healthy start!

I'll post again soon, we have lots going on to tell you about...Easter, Gage's prom, Dane's first day in Sunday school, and Chad and I's new ministry adventure! Stayed tuned...

March of Dimes t shirts!

2009-03-23T15:24:00.000-07:00

My friend Karin, who I have known since the 7th grade, has really gotten behind the March of Dimes this year...she was the first one to sign up and walk and was the first one to raise money for team "great Dane"! She asked her friend, Kathi Buss, to help us with the art work this year for our team t-shirts. She generously donated her time and talents to our team! (Dane got the nick name great Dane while in the NICU, and that is what we named our team after...in case you were wondering!) I was sooo excited when I received this in my email today!
This is original picture that I took of Dane:

And this is what she was able to do with it! This is the front of our shirts:

And this is the back...notice the little dog prints and baby prints?!?:

Aren't they so cute!?!

Thank you Karin and Kathi!!! This is the link to Kathi's website in case you want to check out what else she does! http://www.kathibussphotography.com

2009-02-25T17:09:00.000-08:00

It's that time again...and yes, I know that we are all feeling the effects of the current conditions of the economy. Chad's business is officially no more, so we are feeling the crunch in a huge way too...but God is bigger than all this and I have faith that we will still have a great turn out for our walk this year! You all know why we support March of Dimes, but I would like to tell you why this year is different. As we are all too aware, the State of Arizona is experiencing its largest budget shortfall in its history. A few of the programs important to the March of Dimes are faring well in these turbulent times. Kids Care, a program that provides health insurance to approximately 65,000 kids was facing cuts from the budget, but thanks to the March of Dimes and many other organizations, this program has been reinstated. The March of Dimes is still waiting to hear the latest on the New Born Screening programs. We’re hopeful for good news about this program. We thank you March of Dimes for all of your efforts for babies and children! The state has most recently cut therapies for many, many children in the state...Dane is one of those children. It is big advocates like the March of Dimes that will be there campaigning against these cuts.

We ask you to prayerfully consider donating to our team, and even better to sign up to be a walker! We had a blast last year at the walk, it's only a 4 mile walk, and it starts early so it won't take up your entire day...I think that we were home last year by 11:30am!

If you would like to donate please click on my March of Dimes badge on the right!

Please enjoy this video!!!

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Dane's 2nd Birthday...and more!

2009-02-23T13:22:00.000-08:00

My big two year old!!! CUPCAKES!!! Yum!

Opening gifts

Our budding young carpenter!

His new Radio Flyer trike!!!

What a month we have had! Lets' start with my Bday weekend (Jan.31st), Dane spent three days with Grandma PapPap while the rest of us took a mini vacation to the happiest place earth. It's the first time we have left him for more than an over nighter, and he did great. Three days of undivided attention at Grandman and PapPap's...which to Dane is the happiest place on earth! So we all had a great time that weekend, though we all missed Dane a ton, it was so nice to spend some uninterrupted time with Gage and Katie! (and the fact that were riding Space Mountain didn't hurt!)

On February 9th Chad and I celebrated our 18th anniversary, and then came the big day...February 10, 2009...Dane's second birthday!!! Chad was out of town and I had to work, so we celebrated on the 11th, but I am sure that he didn't mind! We are smack in the middle of a very nasty RSV season, so we opted to not have a party for him. I have several friends that are pediatric nurses and they have told me that the hospital is full of VERY sick RSV babies...so we have been very strict with him going out anywhere or having people over. We did have Grandma and PapPap over for dinner and cupcakes, he opened his gifts, and considering he didn't get to celebrate with all of his cousins and friends I think that he had a great 2nd birthday. I did promise him a big party when he turns three, so we will look forward to a house full of friends and family for next years bday party. Someone did give him a special present for his birthday, I don't know who gave it to him or when on his birthday he actually opened this gift, but we know that he received it...AN ATTITUDE!!! This gift has enabled him to test us repeatedly on his limits and show us that he would rather go into time out then do what is sometimes asked of him. So, if anyone out there would like to send me the receipt for this gift we would like to exchange for something else!!! :)

Dane had an evaluation with an occupational therapist, actually someone from our old church who knows Dane and has been praying for him (which is too cool), and he said that he was border line for needing services...which I think is a great thing! He said the same thing that we really already knew, he is weak on his left side and if we continue to work hard with him we should continue to see improvement. We opted to do some home therapy with Chad and I, then have him re-evaluated in about three months. He is getting physical therapy twice a month, where we are working on balance and strengthening his left side, and stretching out his left side too. He is still doing great with speech, and I think he has mostly caught up to his peers in this area! He still has choking episodes, mostly with saliva which his speech therapist thinks mostly has to do with his left sided weakness that affects his tongue and mouth. But the choking continues to happen less and less, so we are thankful for that.

Dane is soooo smart! He knows his colors and most shapes, he knows to say "sorry" if he bumps into you, he loves to watch NOGGIN and when it is not on he will say, "Noggin, pul-ease!" followed by, "remote go???" so we can change the channel. He is a Daddy's boy for sure, he loves his Daddy and is easily heart broken when his Daddy has to scold him. Me, on the other hand, could scold him all day with out much notice. He also loves coloring and playing with play-doh, and playing with his trucks too. He loves to dance, though when he dances it looks like he has a 30lb weight on his head...it's actually very funny, I need to catch him on video!

We are enjoying some beautiful weather and playing a lot outside, Dane loves going to the park. He is totally fearless which can be challenging as I run around the jungle gym from side to side in case he falls! His favorite way to go down the slide is head first, which I know is a no-no, but before I have a change to yell...there he goes again...head first. Look out Evil Knievel...here comes the 'Great Dane'!

We are getting ready to return to the March for Babies event on April 18th, we are excited to possibly have more walkers join team Great Dane this year! I will be posting more details very soon, as well as sending out emails to kick off my official fund raising!

Blessings

2009-01-24T13:44:00.000-08:00

WOW. I have the best parents. As I look back now through the eyes of a mother to three children, I can say that and mean it whole heatedly. As I mentored teen Moms a couple of years ago, I started to really realized how lucky I was. My Mom and Dad always provided a loving and safe place for me to lay my head...even through the dreaded teen years and even through my own teen pregnancy, no matter what the circumstance I knew beyond a shadow of a doubt that my parents would always be there for me. I didn't know that everyone did not have that same blessing, I didn't know that there was sexual abuse, alcohol abuse, drug abuse, and physical abuse. I didn't know that some parents cared more about there own needs and not the needs of their children, I didn't know that some kids came home to empty dirty homes with no food...I just didn't know. I hope that some day my kids will be able to look back and say that they too always had a safe and loving home to lay their head each night, and that no matter what we would always be there for them too. So, yes, I have been richly blessed to be born into my family! Over the past two years my parents continue to provide for me...when I was too sick to be by Dane's side in the NICU, they were there. When Dane came home, they (mostly Mom) bravely learned how to operate his monitors and deal with his oxygen requirements and home health care nurses. They learned all of Dane's exercises and helped with his physical therapy. They provide us a safe place to go during flu season and they have always made sure that during the last two years that Gage and Katie never felt less important. They have baby sat on a regular basis so I could continue to work since Dane could not be in day care. Recently they have given us yet another HUGE blessing...they gave us their van. Now they could have and probably should have used it as a down payment for their new van, but instead offered it to us. This enabled us to give my car to Gage and for me to have my a vehicle to drive...not only did they joyfully give it to us, but gave it to us with a full tank!!!! It's just too much, Chad and I don't have words to say how thankful we are so we will once again say "Thank you for everything!"

Thank you Lord for all of our many blessings, we have had some doozies this year!

The Holidays

2009-01-19T12:43:00.000-08:00

We had a very nice Christmas, unfortunately I was very sick and to prove how sick I was I didn't even take any pictures! Dane was more interested in boxes and wrapping paper but he did have a great time. New Years Eve was spent with my friend Jill and her family, we played games and hung out...we were home by midnight because we are big nerds! Dane rang in the New Year sleeping at Pap Pap and Grandma's then Mom and Dad came over for dinner on New Years Day, it was nice and quiet and I loved it! Before I start telling you about Dane's milestones, our family celebrated another milestone with Gage's 18th birthday! This is a picture of him, and yes, that is his cutey girlfriend sitting next to him!
It was surprise party and I think that he had a great time! Happy Birthday Gage!

Dane's language continues to take off! He is doing a great job with speech...as a matter of fact his speech therapist has discharged him from speech! Wow! Way to go Dane! We had another evaluation with Phx Childrens and she scored him age appropriate for ALL areas! She was very impressed with how well he continues to do and now he can be followed by the developmental pediatrician if my insurance will pay for it. We have bumped up his physical therapy to twice a month, when Miss M was here last week she noticed some left side weakness and she feels that with his age and ability to follow simple directions he will allow her to get some good exercises in to help strengthen his left side. I am waiting to get a referral to go back to the Neurologist to discuss getting Dane's MRI done, now that he is bigger I feel more comfortable with the thoughts of him going under anesthesia. Though he is doing really good, if the scan shows something then we can have a diagnosis of mild cerebral palsy which would qualify him for more services. Not that that is what we want, but the reality is that once he is out of the states birth to three program we won't qualify for the states help...unless we have some sort of diagnosis. We don't want him to start to struggle with his fine motor skills when he is like 4 or 5 and not have the help available to him. What we are hoping for is that the scan shows nothing (which would be yet another miracle...but hey, my God is in that business) then we just go about raising our little blessing like any other little one...except no matter what happens I'll know the truth of how blessed he has been!
We are going to continue feeding therapy, he eats like a champ but still has choking episodes. He an episode this morning and ended up vomiting...no fun for anyone involved. He seems to choke mostly on saliva, but hopefully she can give us insight. She comes this Thursday so we will see how it goes.

I love this picture, I know for those of you that aren't in family you can not fully appreciate this raised eyebrow look...but it cracks me up! He looks like my brother David in this picture!

There is my happy boy!

This was Dane running laps around our kitchen island! Before he could maybe run two laps before the coughing and wheezing, but now he can run for about five minutes before we have to have him take a rest. He is only doing one breathing treatment a day, and we haven't had to give him the albuterol treatment in months...those little lungs are starting to toughen up! We are entering into the bad part of RSV season, so please pray that he stays healthy!

We are gearing up for the big March of Dimes walk coming up in April, we are hoping to have an even bigger team than last year! Details to come...

Spreading some cheer!

2008-12-17T20:19:00.000-08:00

We are one of the mission families for the March of Dimes, we attended a "jail and bail" event last week at one of the local restaurants. Danes personal info was on all of the mailings that went out, so it was great for Dane and I to meet the people that showed up to raise money. My Mom came and helped too, it was an awesome experience and volunteering really keeps me passionate about prematurity. I met a couple that had just recently lost triplets, they were born at 24 weeks and they all passed at different times. It was heartbreaking as she looked at Dane coloring at the table and started to cry, I am sure that she was thinking of what may have been for her babies. It was a swift kick to me, Dane is doing so well I almost forgot of what could have been for him too. Okay...on to the cheer I promised in my title!!! This is a picture of Dane posing with the restaurant managers. Yes, the look on his face was like, "Mom, who the heck are these people?"

Okay, so yes, we do have the ultimate couch potato coffee table...it pops up so that you can eat while sitting at the couch and you guessed it... while watching TV too. Anyway, Dane thought that he would test the limits the other day by trying to crawl in.

And being the great Mom I am, I thought I'll take pictures and blog about it! I know that he is thinking, "I can't believe that Mom is letting me sit here...I better at least be cute"
Don't you know that if you are one year old no one can see you if you can't see them...This is what he did when I sternly asked him what he was doing in there. Clearly he can not be seen in this picture, where did he go?

"Here I am!" Yes, even after that big old grin, I still made him get out. I am so mean.

Here is little sample of what a little yapper he has become!

Exceeding my standards..already?!?

2008-11-28T18:45:00.000-08:00

Lot's to be thankful for again this Thanksgiving, family, friends, a roof over our head, and a gracious God of course! We are thankful to share whatever we have with others including Dane's journey...which we have an entire new list of things to be thankful for this year when it comes to him! We have an amazing little boy who is walking, talking, smiling, laughing, (ummm...sometimes hitting and pinching too!) and darn determined to figure out the world around him! He just had a check up and he is in the 95 percentile for his height and in the 75th percentile for weight...and that is for his actual age, NOT adjusted!!! This is great for a preemie, it usually take two to three years for a 26 weeker to catch up to his peers...and he is exceeding them in under two years!
Everyone was healthy and we were happy to spend Thanksgiving with the whole family this year. We had a great time eating yummy food and catching up with everyone. Dane found his way to the piano, where he sat down and played while we poorly sang...hard on the ears but cute none the less!

Photo and video editing at www.OneTrueMedia.com

Sorry about how dark the video is, it was taken with my camera's video option and as you will see it's not very good quality. I need to learn bring my camcorder with me more often!

I've lowered my standards!

2008-11-18T20:06:00.000-08:00

I have come to the realization that posting on a monthly basis will have to be enough! I will try to post more, but once a month is my official goal!

We have had a wonderful month, thanks in part to some gorgeous weather. There is a small window after the weather gets nice and before the brown cloud rolls in...and that is what we are enjoying right now. Dane loves to play outside, he is especially happy to just roam around the yard with a stick and explore. He loves to look at bugs, and move rocks from here to there...then back again! His speech continues to be taking off, tonight Gage taught him to say "pound it" then do the knuckle bump! He is still using sign language, but less and less now that he can repeat most things, however refuses to say certain words that he has been signing...like "more", "please", "drink", and "thank you". He will sign them, but when I tell him to say them with his mouth, he just continues to sign only with his mouth open! It's very funny!

I have seen an improvement in his breathing since starting the treatments last month, he can play a few minutes longer before the coughing and wheezing start. Looks like we will not be approved for the RSV shots this year, not a big shocker to us. Our co-pay would have been around $800.00 every 28 days, and we couldn't afford it anyway...who could??? So, we are limiting his exposure once again. No more taking him shopping during busy hours, no malls, no day care, no being around other kids that are in day care...etc. We are all praying to keep him healthy one more winter, in hopes that he will out grow his lung disease. His physical therapist, Miss M, thinks that he is doing great and has basically almost caught up to his peers in gross motor skills! Amazing huh?

Enjoy a quick video montage of what he has been up to the past month...

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Where has Dane been???

2008-10-17T16:33:00.000-07:00

Sorry that it has been so long since I have updated the blog!! Hopefully I didn't loose to many readers in my laziness! Dane is doing great, but he is more than a handful these days! He is into everything and has no fear of anything...including me! We have cut back on his physical therapy because he is doing so great with his motor skills, we are so thankful to have had such a great therapist and we will miss seeing her every week! Dane's speech is taking off as well, he can say too many things to list here...and we couldn't be happier! Dane's lung disease has been showing itself lately, now that the weather is nice and we are able to go outside he hasn't been able to run and play hard for more than two minutes with out wheezing and coughing. So we are back on breathing treatments twice a day for the steroid and up to three times a day for the one that opens his lungs up. I can already see a difference, but it is another big reminder that we need to stay germ free another RSV season to give him the best chance of out growing the chronic lung disease. He hates his treatments and fights and cries the entire time, but this is one battle that he will not win! Enjoy our little montage!

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Munds Park (part 2)

2008-09-08T12:42:00.001-07:00

Here is the kiddos at the park, Gage was so excited to get his picture taken by his Mom at the park...get over it Gage...I am still the boss! Gage was even more excited when I made him sit on the swings so that I could get a picture of all the cousins on the swings together!

Anyway, the weather was beautiful and we all had a great time. The kids have been cooped up all summer (unless they are in the pool), so it was so nice to just be outside. Munds Park is gorgeous, maybe some day we can afford our own get away home...or heck I would live there year round!

Thanks to Gary and Dee for letting us invade their home up north! We had a blast!

And yeah to Dane's little lungs who handled the change in altitude like a champ! He is one resilient child!

Munds Park (part 1)

2008-09-08T12:28:00.001-07:00

Chad's birthday was Friday, we were trying to plan a weekend up north to celebrate and get out of the heat. Chad's sister, Kelly, grew up with a family that has truly become "family" to her...and they own a gorgeous cabin in Munds Park. They were so generous and offered the cabin to all ten of us for the weekend! This place was amazing, tons of room, kid friendly...and way more than we could have ever enjoyed renting a cabin. This picture does not to it justice! They have two rhinos, that the boys (Chad, Dan & Gage) and kids had a ton of fun riding around the town in...this is one of them.
Dane and his cousin Mallary had a fun time playing together. Both the front and back porch were totally enclosed so we didn't have to worry about them getting hurt...They loved being there!
They even a had room designated just for the kids. They colored, watched movies and hung out in this room when they were not enjoying the outdoors. Dane looked so cute hanging out with the big kids.
The community that we stayed in had nice park where Dane loved being on the swings...the higher we pushed him the more he laughed!

High Altitude Test

2008-09-08T10:56:00.000-07:00

Before planning for our weekend up north, Dane had to make some phone calls to make sure that his lungs were going to be able to handle the change.

We brought his nebulizer just in case, but after his long conversations with some of his preemie friends, we were assured not to worry!

So, we headed up to Munds Park. Elevation 6600! This was the highest altitude Dane has been in, last summer we were told not take him above 4000...and even then to make sure that we new ahead of time where the closest medical facility was...that was enough to scare us, so last summer we stayed in the valley. So, did he pass the test??? Yes, with flying colors! He was a bit more tired, but he did great!

Chim-chimney, chim-chemney, chim-chim cher-ee!!!

2008-09-01T18:30:00.000-07:00

This is Dane's impersonation of Dick Van Dyke in Mary Poppins...not too bad, huh? We were rearranging my room (and yes, still cleaning it out) and Dane who has been known to be a garbage picker, found a candle that I threw out. I threw it away because the glass was full of soot and looked pretty ugly...Dane thought otherwise. This picture cracks me up, Katie's face is like "wooaahh..." "I don't know how my hands got dirty?!?"
"My Mom is over reacting and making me take a bath..."
"Okay, maybe I won't be a chimney sweep...I am way too cute when I'm clean!"

Strollin' down memory lane

2008-08-25T14:47:00.000-07:00

For those of you who know me really well, you know that I am in a never ending attempt to clean and organize Chad and I's bedroom. I feel like my room has been a mess since I was little, I'll keep the rest of our house clean and somewhat organized but it all stops at our room. So, in yet another effort to clean out the clutter I ventured into a forgotten drawer where I was so excited to find all of Dane's NICU awards...well, they really are not "awards" but little signs that nurses would make and hang all over his tiny space to make it feel more home-like. I have one that says "Congratulations on being extubated...what a brave boy!!!" they would include the date, and are decorated with stickers and stuff too. They would always make them when we were not there and it was a highlight to come in and see a new sign up by his incubator. You could tell how long the little ones had been in the NICU by the amount of "awards" they had. Looking back now, I find it kinda funny...how many Mom's can scrapbook with a sign that reads "Congratulations on being extubated!" or "Congrats to Mommy for the first diaper change!" And yes, I deserved that award...it should have been statue award because changing a barely two pound baby's diaper was like doing surgery! I remember my hands were shaking, as the nurse lovingly said "make sure you lift his legs and hips together so you don't dislocate his hips"...nice huh? So, yeah, I am a little proud of my awards too!

But these are the two that I cherish the most. This one was taken when he was almost one month old. I put my cell phone next to it so that you see how tiny his hands and feet were. You could fit both of his hands and feet inside the perimeter of my cell phone with a ton of room to spare. He was heading towards the 3lb mark and I remember thinking he was getting so big. This one was taken on his two month birthday, I put a quarter on the picture to see the size (I thought of the cell phone after the first picture, then my battery went dead before I could take this one with the phone) This was a week before we had him transferred to a closer hospital.
I am so thankful for the reminders, they keep my heart in check when he is driving me crazy!

If they don't win it's a shame...for it's 1, 2, 3 strikes your out at the DiamondBacks game!

2008-08-11T09:39:00.000-07:00

Me and Katie!
Perks of having good seats...you actually can catch some of the souvenirs they throw out! We were very excited about our little foam ball!
Fireworks!!!
I had to add a picture of Dane...being his blog and all...

A very generous customer from work gave me four tickets to the D-backs game on Friday night, now these weren't just your average tickets, they were right above the D-backs dugout! You see, Katie won tickets for a project she did at the science fair at school, she had to plan a baseball team...everything from picking the right players and their salaries, to what concessions they would sell. She was sooo excited to win the tickets, but when we got them we were a little disappointed to see that they were in the extreme nose bleed section. It would have cost us more to drive downtown and park than the tickets were worth, so we decided to save our money and purchase our own tickets and make a fun night of it. I shared the story with Lena, one of my faithful customers, and she said that she gets free tickets at her work all the time and that she would try to score us some tickets! So, Katie, Chad, Uncle Dan and myself headed down to Chase Field (still BOB to me) and had a fantastic night that ended with the roof opening up to a great fireworks display! Icing on the cake since they cancelled fireworks on the fourth of July! They did loose to the Braves...but we had a couple good innings that kept it exciting!

THANK YOU LENA, for the awesome evening...memories that Katie will not forget anytime soon!

Dane spent the night at Grandma and PapPap's house and had an equally good time!

Chonicles of a one year old driver

2008-08-08T06:59:00.000-07:00

Yes, I am cool...and yes ladies, I am single!
Gotta go, you can't hold me down now that I have wheels! I am free to experience all that my little red car has to offer...I want to let the wind blow through my hair!
Wait a minute...I forgot Daddy buzzed my head...and now the wind can't blow through my hair!

*In case you notice the bruise on Dane's forhead, he tripped and caught the corner of our paper shredder! Poor guy, but he barely cried...because he is one tough kid!

Developmental Evaluation #3

2008-08-04T14:09:00.000-07:00

Sorry I have done such a cruddy job of posting, these are my excuses: our Internet has been going crazy, I think that we have been off line more than on line the past couple of weeks, and we have been getting ready for back to school for Gage and Katie. Katie started school today and Gage starts tomorrow. I will miss my helpers, especially Katie, they have been a big help around the house and with entertaining Dane.

Today was Dane's third developmental evaluation with Phoenix Children's Hospital, I really like getting feed back from the therapists there...the majority of kids they see are former preemies, so they really understand the development of these little miracle kids. Well, besides her immediate response to how huge Dane is (she said that we should do a study on him, he is the biggest preemie she has seen!) she was amazed with his progress. She put him through lots of little tests and then scored him in all of his developmental areas. They go off of his adjusted age of 14 1/2 months, and his lowest score was 15 months! The majority of his scores were at 17-19 months!!! AMAZING!!! Thank you Jesus!!! She was impressed with his sign language, and how he stacked blocks like a pro, he also went up and down the therapy stairs while only holding on with one hand...very fancy stuff! She wasn't that concerned with his wobbliness (I think that I just made that word up), because he has only been walking for two months. She feels that we can back off a little on his PT too, so I think that we may go to twice a month on that. We celebrated his awesome report card with an iced americano and some apple juice...not mixed together of course!
I felt an overwhelming urge to praise God as we left Phoenix Children's...so I put on a CD and sang worship songs very loudly and yes, very out to tune...but I know that God has ears to only hear my heart...to which we are both thankful! It is truly a miracle to watch how Dane has been healed. I am not in denial to what problems may lie ahead for our journey, but I trust in God's plan and know that any future heart ache will only draw us closer to Him.

BTW, his hair is growing out and I think that it looks much better and I am no longer angured with Chad when I see his little head!

Pictures to come soon!

"You, did NOT buzz his head!"

2008-07-14T11:18:00.000-07:00

"It's okay, I still look cool Mom!"

Where did Dane go???
"Here I am!"
"YOU DID NOT BUZZ HIS HEAD!!!"

The reply from my dear husband was "yes". I came home from work to see a toddling Dane come around the corner with a silhouette of an egg head that I was so desperately trying to hide with his hair. Yes, Dane did need a trim as the dreaded mullet was starting to appear. I have been ever so slightly trimming his baby hairs for the past six months, and Chad has been teasing me that he was going to buzz him, which I kept saying "you had better not TOUCH his hair". Due to his prematurity he does have a skinny head, the NICU nurses call it a "toaster head" and say that they can spot a grown preemie by the shape of their head! I was trying to grow it out a bit to off set the shape of his head...which I must add is not that bad, the nurses did a great job of turning Dane every couple hours while he was in the hospital to keep the "toaster head" to a minimum. So okay Mom's, I know you can sympathize with me here...yes, he is still adorable and yes, it will grow back...but girls...I was soooo mad at my husband!!! Needless to say I am quite sure that Chad will not go near Dane's head again with anything sharp!

Otherwise, Dane is doing good. We are working on trying to strengthen his core to help him with balance, he is still falling a little more than he should. We are basically doing a Pilate's move on him, his stomach and neck muscles are a little weak and he has compensated with VERY strong shoulder muscles. We are also working on behavior, as he thinks that if we tell him "no", he should try to bite or pinch me. I know that it is out of frustration as he can't communicate with us they way that he wants to. The funny thing is that he only does this to Katie and me...never once does he try to bite Chad or Gage. It also doesn't matter who tells him "no", if Chad tells him know...he tries to pinch me, if I tell him "no" he tries to pinch me. Let me tell you, he has some strong pincher's!!! So, for now we are just removing him from the situation when he starts to do this...time will tell what we try next. He is very strong willed and stubborn, which was a necessity in the NICU...but a bit of a challenge as he gains Independence! We love him though, and we try to remember that it was his rebellious nature that helped him get him where he is today!

Happy 4th of July (on the 3rd!!!)

2008-07-03T13:29:00.001-07:00

This is what Dane does when you ask him "who's so cute?" or "who's so smart?" Too cute, he always proudly raises his hand!

I know that I won't have time to post tomorrow, so I thought that I would do it today! I hope that everyone has a wonderful day tomorrow full of lots of family, friends, food, and fireworks.

Beware, hot topic ahead...and it doesn't have one thing to do with Dane or prematurity!

We will be going to a church party/baptism at an unbelievably generous persons home that has offered their gorgeous home to our church family for the evening. This house is awesome, the pool has a lazy river and a buried treasure ship in the shallow end! Gage, Katie and myself have made the decision to be baptised also. Baptism itself has raised a lot of questions for me, since I became a follower of Christ I am very skeptical and aware of trying to stay clear of any legalism in my relationship with God. When I read the gospel what resonates in my heart is that we are to be baptised in the Holy Spirit and if you are not careful, water baptism can feel like another notch on your Christian belt. It is something that I have decided to do as an outward symbol of the internal change that I have had in my life, not as a legalistic, religious thing that somehow makes me more Christ like. There has been an odd stigma that I have found is attached to not being baptised in the church, there are brothers and sisters in Christ that have acted shocked and said "YOU have not been baptised!" and I think that it is for that reason that I haven't done it yet, when people act like that it changes the experience for the person being baptised it makes it about everything that Christ preached against. It's like when you see people take communion, and they really have no idea why they are doing, just another "to do" thing on their God check list, and like taking communion, baptism needs to come from the heart, a decision that is between you and God alone, and I might add a decision that is for God alone to judge. Anyone can get dunked by their Pastor, but it takes a secure relationship with Jesus to search yourself for the real reason you are doing it. I am glad that I have had the opportunity to really pray about it the past couple of weeks, and thankful that I have had the chance to share my heart with people about why I hesitated to do it. I am proud of my kids for making the decision to be baptised tomorrow and I pray that it is truly is a life changing experience for them. I pray that they are not doing it because it is what man expects them to do, but what God wants them to do to show and share with others their faith in Jesus... and that they know it doesn't make them any less or more loved by God...He sees and knows our hearts, whether we have been submerged in water or not. Google "different thoughts about baptism in Christianity" and you be amazed at the discussions out there on this topic. I am glad that I have decided to share this experience with my kids, heart and eyes wide open knowing that there is not any legalistic reason attached to this public symbol of my new identity in Christ. Just as a side note, my Mom baptised me when I was a baby and I think that is awesome, you know why? There is not ANY legalism attached to a Mother baptising her baby with no one else around but the Lord...so thank you MOM!

Oh yeah, make sure in the midst of your 4th of July celebration that you pray for our country, and it's leaders, our soldiers, and their families!!!

Okay, back to Dane, he is doing great! Getting more and more stable on his feet and though he may not be hitting every milestone on time, he shows improvement everyday. We have been taking him swimming, which he loves a little too much...he has ZERO fear of the water! He is my happy guy and our family is blessed by his big brown eyes!

2008-06-23T20:23:00.000-07:00

Today is the first day that I have actually felt a lot better, I can have conversation with out my lungs burning. The way I figure it Dane is about 4 days behind me in this flu/chest cold thing. He still has a very nasty cough, but his lungs were clear when we took him to the doctors. (BTW, he weighs 25.5lbs!!!) He is back on breathing treatments, mostly for preventative reasons. He is a much better trooper than I, you barely know he is sick except at night when he tries to cough up all the junk in his chest. We are praying that it doesn't turn into anything worse.

When he is sick or very tired it really effects his motor skill, so he has been falling a lot...which he has actually gotten very good at. He does get frustrated because his body won't do what he wants it to do. Now that he has been walking for two weeks, we have noticed that his right foot is turned out and his right leg is a bit stiff. So, we will keep our eye on that to see if may need a little help with it. We are so proud of him!

The never ending night

2008-06-19T09:31:00.000-07:00

Well, I did it...I gave Dane my cooties. He started coughing pretty hard yesterday and I just knew that it wasn't going to be a fun night. He woke up crying and coughing after 15 minutes of sleep, when I went to pick him up he promptly vomited all over me. Now, I am not complaining, we have been so blessed that we haven't had any of the preemie eating, gagging, and vomiting issues. For so many preemies and their families vomiting is a part of the daily routine. I think that Dane must have steel guts, he eats and poops like champ...and has done so since he was in the NICU. With that said, curdled milk and half digested dinner down the INSIDE of your shirt is not cool. He was feeling better, but it took what felt like forever to get him back to sleep. I thought that I would share this cute picture so not to leave you with the mental picture I just created for you above. Then Gage came home from work to this, you guessed it folks, we have a revenge T.P.'ing at it's best. Yes, it sucked that he had to come home from work and clean this up, but the reality of war is not pretty. One of his best friend's that was involved in the initial attack that lead up to this revenge attack came over and helped clean up...there is one thing for sure, the bar has been raised and if I know my boy he will rise to the occasion. So the war will continue, consider yourself warned. Jade, Krystal and Allison!!! :) Gage has a job and plenty of money to buy loads and loads of toilet paper! This was written on the drive way, a cowardly move for sure! I personally think that this Bobby character has made himself a target fair and square...no pun intended of course.
Okay, getting back to Dane, he woke up with a fever and in need of a breathing treatment at around 3:00am. He seems to be a little better this morning but we are taking him to the doctors to be safe, though he has steel guts...his lungs are still a little lacking.

Hopefully, we will all rest well tonight!

Happy Fathers Day

2008-06-15T21:43:00.000-07:00

This has nothing to do with Fathers Day...just a funny picture of my personal choir! Gage came home with these from work the other day because they were going to throw them out, but we managed to entertain ourselves for at least 20 minutes with these beautiful red and hot pink choir gowns!

A special Happy Fathers Day goes out to my Dad and my husband, the two guys in my life that I know no matter what happens will always be there for me!

I had to work this morning, and I have been fighting a bit of a yucky chest cold that has turned into what is looking like the flu, but it was a great day still. We went to church, then napped, and I made chicken pot pie to take to my Mom and Dads.

Dane is walking up a storm, though his walk does resemble a zombie that has had a couple cocktails! What a great gift for fathers day, to see our little man toddling around!

He is still doing great with his communication, his new thing is what I call "babbling in sign language". He will start doing things with his hands, I know he is trying to sign something but I have no idea what! I know that he is soaking up all the signing that I am teaching him and the signing videos too, so I guess it's just like the babbling he does in reaction to all the talking he hears around him...just with his hands! It's very cute none the less.

NEWS ALERT!!!

2008-06-11T12:42:00.000-07:00

Sorry about the quality of this video, it was taken with my digital camera...anyway...Dane has been taking three or four steps on his own for the past week or so, but today we had some friends over and when they went to leave he walked from our kitchen to the front door to follow them out! We grabbed the camera and did a reenactment by dangling my cell phone in front of him! We are so proud of him!

We thank God for his continued healing of our sweet miracle!

The eyebrow

2008-06-11T12:34:00.000-07:00

So, for those of you in our family...well at least my Mom's (Grandma Kathy) side of the family, there is the famous "eyebrow". My Mom can raise her eyebrow at you like no other, my brothers David and Mark also have "the eyebrow", it's been kinda a joke in our family as long as I can remember. Katie snapped this picture of Dane, and you can see for your self that the legacy of "the eyebrow" will live on for another generation! Though it's not raised nearly as high as my Mom can raise hers, not too shabby for a one year old. For those of you that don't care about our family eyebrow raising...it's still a funny picture!

2008-06-01T13:42:00.000-07:00

You may have heard me say this before, but....This little boy amazes me! We were at the grocery store when he started making quite the scene over a picture of a baby in a magazine. So, once again, we showed him the sign for baby...which is folding your arms as if you were holding a baby and rocking. Well it finally clicked with him and he is now a "baby" signing fool. As you can see from the video, he shakes his head "no" when I keep asking him to sign "duck" (which he knows how to do)...but if you listen closely you can clearly hear him say duck. He has grown leaps and bounds in the past two weeks with his speech. He is clearly starting to mimic what we say to him. It is soooo exciting and one of the many "Thank you Lord" moments as we get to watch this miracle unfold right in our very own little house!

He is still very, very close to walking and has started taking one or two steps consistently between furniture with out holding on. He is extremely stubborn, and refuses to practice walking unless it is his idea and not ours! He is currently tempting his boundaries on behavior, which we are doing the best we can in being consistent...though it is very hard to keep a straight face when he is being a stinker! He already broke the first set of baby locks on our cabinets, and Chad just installed the new ones...hopefully they will last longer than the first ones! He favorite thing is taking everything out of the pantry, and when we ask him "who make this big mess?", he proudly raises his hand! We are baby sitting my Moms dog, and has been saying her name, Molly, like a pro...well at least he says "olley"...good enough for me~

We celebrated his "adjusted age" birthday party last weekend. We had his dedication at church, which was a tear jerker for me, then we had family and close friends over for some cake. Dane did great at the party, and let everyone hold and play with him. It was a great day, I only wish that we had the finances and the space to have invited more people to share in the celebration! I better go, I can hear Chad scolding Dane for getting into the garbage...he is worse than a dog when it comes to getting into the garbage!

We are really working on signing please and thank you, but as you can see from the video or if you have ever been around Chad and I, you know that we both seem to talk at the same time...so the fact that Dane can hold two conversations with us at once makes him a double genius!!!

Make photo slide shows at www.OneTrueMedia.com

New goals

2008-05-12T19:39:00.000-07:00

"Good grief Mom, enough with the camera!"
"Okay, I'll smile for this picture...but only because it's Mothers Day"

Every six months the DDD comes out and we talk about how Dane is doing and set new goals for him for the next six months. I was so proud that he had mastered all of his goals that were set for him six months ago, like getting himself into a sitting position, crawling and more babbling. He has kicked some serious preemie butt in all of those goals...so now we move on to new goals. Of course walking is a major goal for the next six months, but the big one is speech. Speech is the area that he is the most delayed in, he does a lot of pointing and grunting to communicate with us. We encourage him to sign to us, which he has been doing awesome with...he is pretty consistently signing "more", "drink", and "all done". There are times that he refuses to sign, but we take his hands and do the signs for him before he gets what he wants. We want him to start mimicking our speech with in the next six months...that is the biggie right now. He seems to have a bit of an ornery side to him, but for now we treat him like we would any other child when he acts up. Time out in his play pen and stuff like that, it's just so hard to tell what is a behavior issues VS. disabilities. I personally think that he is a smarty pants with an attitude!

Today, we had him strapped into his toddler rocking chair to watch a video while Chad and I worked on a spread sheet for his business. Next thing we hear "THUMP", we look over and there goes Dane crawling across the floor with the chair still attached to him! He couldn't see where he was going because he couldn't look up, ya know these things are hard when you have a rocking chair strapped to your back...we heard him swinging his legs but we had no idea that he was doing it with the intention of rocking himself completely forward! He looked like a hostage victim trying to get to away while still tied up! He took off crawling until he hit the wall! There is no one that can tell me that this child is not a genius...or at least an escape artist!

We are going to try to get a video of him doing it, it was the funniest thing that I had seen in long time!

I know, he looks like an angel in the pictures above...but trust me, there is something behind those eyes that is full of mischief!

It's over!

2008-04-27T13:31:00.001-07:00

RSV season that is! Yippee! We made it successfully through Dane's first RSV season (out of the hospital that is) with out catching the nasty virus. It really wasn't too bad being stuck at home and well worth the health of his lungs. He has been to the grocery store a couple of times this week, and we may even attempt a play date this week with my sister Chick's! There is a whole new world out there and I am excited to take him to the Mall too, I am sure way more excited than him but that's okay. Gage and Katie were at the Mall with in days of being born!

We are still very aware of his lung disease though, every time he starts to play hard and crawl very fast he starts wheezing and coughing. Last night we had to give him a breathing treatment (the first in over three months) because he was wheezing so bad. You see this child does not want to get dressed and especially doesn't want us to put his diaper on. After his bath he exerts sooooo much energy fighting us to put his clothes on he starts wheezing. The doctor said that he will definitely have asthma and that it would most likely be pretty severe...but hey the doctors have said many other things too, right? Hopefully we can keep him healthy and he will out grow any asthma, but it not no biggy.

Thank you team "Great Dane"!!!

2008-04-19T18:54:00.000-07:00

Here is our team Captain!

This is the back of our t-shirts...we wanted to give everyone our definition of what a "Great Dane" is! Our team started to assemble, we had to get our Starbucks first though...it was worth being a little late!

Tonya & Jenn, my fellow Starbuckians! (I love that I got Team John in the background!!!)
Dane after the walk, he was VERY happy to be out of his stroller!
The fam...
Team photo...minus my brother Mark and sister in law Sandra, today was their anniversary so they left early to be schmoopy with each other! Happy Anniversary guys!
We raised a total of $3,210!!! Thank you all so much for donating, the generosity of my friends and family amazes me. You know what else amazes me? The wonderful team of walkers that got up very early on a Saturday morning to walk to raise money and awareness of prematurity. My poor Mom couldn't be there, she got the nasty flu bug early in the morning...we missed you Mom! Shera also just got out of the hospital after suffering a scarey migrain and couldn't make it, so we missed you too Shera!

Besides the love of family and friends the other great part of the walk was that I got to meet John's Mommy, I have been following his blog since Dane came home from the hospital. Her blog was one of the first one's that I found, I was instantly taken back by her love for little man who also fights hard everyday to over come his prematurity. John was a 24 weeker and has over come so much! John's link is on my page if you want to pop in and show his blog some love.

I also met Tiffany, Mommy to preemie triplets...yikes! One of her triplets also had a grade IV brain bleed and is doing really well. I would have loved to stay and chat with the other NICU Momma's but kids were growing tired and needed naps.

Of course PETA was there to protest and hand out copies of a dime with blood spilled on it...nice huh? They are upset that March of Dimes does has funded testing and some of that testing has been on animals. I am sorry but a bunch of 19 year old PETA activists just aren't going to persuade me to not support this cause. SO THERE PETA!!!

So, to our team captain...the "Great Dane":

We love you and we can't imagine our family with out you, we did all this in celebration of your life!!!

Dane's Amazing Journey

2008-04-04T19:08:00.000-07:00

Please enjoy this video of Dane's amazing journey...

This is why we are raising money for the March of Dimes. The walk is in two weeks, please consider a small donation to help us raise money for a cause that has touched our family so deeply.

Photo and video editing at www.OneTrueMedia.com

Warning...

2008-03-28T17:00:00.000-07:00

One weeks of blogging done in one sitting!

Sahuaro Ranch Park

2008-03-28T16:26:00.000-07:00

For those of you who don't know about this hidden gem of a park in the west valley...you need to go visit and do it soon before it gets too hot! http://www.photography.inkart.net/arizona/sahuaro_ranch/ I have been visiting this park for as long as I can remember, Chad and I used to hang out there when we were in high school, we enjoyed countless visits there with Gage and Katie when they were younger...and it was so awesome...yet surprising to me that here I was taking another kiddo to go visit the peacocks at Saguaro Ranch Park!
We were greeted by dozens of squawking roosters and the most beautiful aroma of orange blossoms when we pulled in the parking lot. The rose garden is in full bloom and we enjoyed looking at the huge variety of roses...they had every kind you could dream of, the roses alone are worth the visit! We meandered through the grounds to find all the peacocks hiding in the orange groves as well as a couple of very well fed bunnies! We were armed with a loaf of bread and had a ton of fun feeding all of the birds and rabbits.
The back side of the park is a more traditional park with playgrounds, soccer fields, and the "usual" stuff...just on a huge scale. This was the first time that Dane got to be on a swing...and he had a blast! He smiled and giggled the entire time, the higher we pushed him the better! Our little dare devil!

He took a three hour nap when we got home!

Getting so brave!

2008-03-28T16:19:00.000-07:00

We have had a couple kitties visiting our back yard and Dane gets very excited when they show up.

Dane is doing a great job standing and is mostly standing on his own...though if he figures out that he is doing it by himself he gets freaked out and falls. He is confidently cruising between couch and coffee table, he is even walking along the walls! It will not be long before he takes off! He really is a miracle!

New pictures!

2008-03-28T16:10:00.001-07:00

We took Dane to church on Easter, he did great and fell fast asleep in Tracy's arms! (thanks Tracy!)
In case you haven't seen the way our boy sucks his fingers...Gage and Katie think its cool that he does the "rock on" sign!
It was nice to see our three kiddos huddled together on Easter night! Dane LOVES his big brother and sister!

Yes, we are still alive!

2008-03-22T16:45:00.000-07:00

Bad, bad, bad blogger...I know! When I have had a couple of moments to be on the computer I have been working on a video montage for Dane to celebrate his first "adjusted" birthday. It really looks great, but still needs some work...but I will post it as soon as it is done.

Dane is doing great, he is working with a new speech therapist to help with his choking and his communication. She seems great and really knows her stuff. She wants us to have a swallow study done on Dane as well as another hearing test, so those are on my to do list. She was very impressed with his ability to feed himself and was glad to see that he doesn't have any feeding issues. When she did the speech eval, she said that Dane was all over the board...some things he was at a 3-6 month level and some things he was at a 12 month level. He showed off his very impressive pointing skills, which I guess is a pretty big deal developmental milestone. She was happy to hear him making noises but would really like him to be doing more mimicking. So we will continue to sing, talk, sign and read books to him to encourage his abilitly to communicate.

His new thing is shaking his fingure at us after we tell him "no" or "don't touch", we try not to laugh too hard...because he is very seriously scolding us for scolding him and this is no laughing matter to him! We think that he has a small touch of a stomach bug, resulting in what we have termed "man gas"! I am NOT kidding you either, we have all been shocked at the rumblings coming from his tiny bottom! We hope that he is on the mend because if we are in public and he starts in with the "man gas" there is no way that anyone would believe that is was him and they would be totally grossed out at the thought of Danes parents letting it rip in public...okay, I have gone too far...enough about the man gas.
I will be sure to take lots of pictures tomorrow, we are going to church then to my Mom's...we are thankful that the weather is so warm so we can soon say "bub bye" to RSV season!

I need a new look!

2008-03-06T12:52:00.001-08:00

For my blog that is...and I am not fancy enough to figure out how to make it more orginal...so I need someone to help me do a "extreme blog makeover"! And when I say "someone" I mean you, Tracy!!! (Cuz, I know that's how you roll)

Enjoying spring...in the desert!

2008-03-06T12:20:00.000-08:00

Yes, I know Spring is not officially here...but for those of us that live in the desert, Spring arrives in late February and leaves us in late March! We have been taking advantage of the great weather with numerous trips to the park. Dane loves getting outside and sinking his bare feet in the grass, and Mom loves it too! It dawned on us that we missed Spring entirely last year, we spent all of our time the NICU and when Dane came home April 30th it was already in the high 90's...so this year we are extra thankful that we can put Dane in the stroller and just go! No oxygen or wires to slow us down!

Dane continues to do great during his therapy sessions. We have cut down on early intervention to twice a month, we will continue physical therapy once a week until he is walking well, and we have just added a speech therapist. The speech therapist is going to do an evaluation next Monday, to see how often she needs to see him. Though I must say that his babbling has gotten a lot better in the past two weeks. He is saying "mama", though he only says it when he is whining or crying. She is also concerned that he is still choking on water and juice, so we will explore that as well. Over all he is doing great, and progressing at rate that is quite unheard of for a 26 weeker with massive brain bleeds! THANK YOU JESUS!!!

Schult Manufactered Homes (Chad's main dealer) has expressed some interest in matching our donations for the March for Babies. There has been talk about them sponsoring us with hats too! We are so excited about this, though it's not a for sure thing yet...but they did call us today to get more information, so we are encouraged that it's going to happen!

A special thanks to all who have donated so far on my page:Uncle Dick & Aunt Judy,Mom and Dad,John and Julie,Scott and Margo,Lori and Pat and Aunt Terry. Thanks to Angela, Sandra, and Kelly for signing up as walkers and doing your own fundraising!

Developmental Evaluation

2008-02-21T15:41:00.001-08:00

We bought him this snazzy little number, multi colored, it converts from a ride on toy to a push toy...pretty cool, right?
WRONG! He played with it for about 7 seconds then went straight back to chewing on his Dad's leather belt...maybe a chew toy from Petco would have been a bigger hit?!?

We took Dane on Monday to Phx. Childrens for his developmental eval., he will be evaluated there every 3-4 months until he turns two. Anywho....the lady sat and gave him all sorts of little tests, she watched the way he moved, how he pulled himself up, how he problem solved and stuff like that. They are going totally off his adjusted age of 9 months, and for everything except speech he is at a 10 month old level! She said again what we have heard so many other times, "he doesn't look like a 26 weeker with a grade IV bleed!"....ahhhh, music to my ears!

She said she is confident that he will be walking when she sees him again in four months! Too cool, huh?!? This little boy just amazes me, he is so full of it and determined to figure stuff out...it's like you can almost see that he has to work a little bit harder to get it, but once he does there is no stopping him. I can hear Dane having a melt down as we speak, I better go help out...maybe Daddy's leather belt will help. For him to chew on that is...I better watch what I say about Dad's leather belt, it could get us in trouble with CPS!

March for Babies!

2008-02-21T15:29:00.000-08:00

So, as I have been reflecting back to last year...I was not able to walk in the March of Dimes walk due to our crazy schedule of life in the NICU and the life that still was going on in our home with a 16 & 10 year old, two dogs and my husband. My cousin Celeste, who is a NICU nurse in Rhode Island walked in honor of Dane last year. We are so excited to be a part of the fun this year, and would love for everyone to come out and walk with us! If you aren't able to walk with us then a donation would be great and can be made on my March of Dimes website: http://www.marchforbabies.org/DaneRobinson
This is the easiest way to make a donation and ANY amount would be appreciated!

First time holding Dane

2008-02-18T10:49:00.000-08:00

He was one week old, still on the vent, and we were waiting for the results of his second brain scan. We had no idea that we were going to get to hold him that day, and I was so nervous when the nurse asked if we were going to hold him kangaroo style (skin on skin). The brought over a big recliner, got me all positioned...and made sure that I wasn't going to need to get up for the next 30-40 minutes. You see, it is so stressfull to move these fragile babies in and out of the their incubators. Once he was comfy and stable on my chest they didn't want to move him again for a while. It was crazy though, there were two nurses and a respitory therapist there to move him on my chest. One to pick him up, one to hold all his wires and tubes, and one to put warm towels on us...and that was the pattern for holding him for next two months. I remember longing for the day when I just go and pick him up with out a a slew of medical staff helping. I remember being so scared that his tubes were going to come out, I think that I spent the entire time watching his monitor than enjoying actually holding him. It was great though and another day that I will never forget.

We are on our way today to have another developemental evaluation done at PCH. I'll be sure to let everyone know how it goes...I am sure that he will continue to amaze them!

Happy Valentines Day...what a difference a year makes!

2008-02-14T10:30:00.000-08:00

Last Valentines Day was a tough one. It was the day that I came home from the hospital, which pretty much sucked sense I wasn't going to be bringing home Dane. I only wish that the story ended there. I was emotionally preparing my self for leaving Dane at the hospital, when one of my good friends David came in to visit. We headed down to the NICU to see Dane and the nurse said, "let me get the doctor"...hmm, that was never said to me right when I came in. The doctor came over to me and began to tell me that they did an ultra sound of Dane's head and that he has bleeding in the brain. I went numb. They got me a chair, I think there were afraid I was going to pass out. The doctor began to draw me a diagram of a baby's brain, she then drew out what a grade one brain bleed looked like and explained to me that a grade one usually doesn't cause any life long problems, then she filled in her little diagram more and explained a grade two bleed and said that it most likely would cause minor damage like wearing glasses or mild learning disabilities. Then she filled it in more to show me a grade three, and how there were more serious life long disabilities like mild to severe cerebral palsy, among a list of other things. Then she filled it in more...a grade four bleed...she filled in the diagram even more to show that a grade four can actually spill out to other parts of the brain causing damage and leaving cystic areas to all brain matter that the blood touches which could result in death or severe disabilities like no walking, talking, even crawling or feeding.

Then she said it, "Dane has a grade four that has already spread out to the brain matter on the left and he has a grade two on the right".

I honestly don't think that I heard anything else she was saying, I was in total shock. WHAM...welcome to the NICU roller coaster ride I had been hearing so much about. The one very cool thing that happened in the midst of the this is while she was talking I clearly heard the Lord's voice over and over saying "I HAVE A PLAN". There are times you feel God, circumstances where you know God's hand was involved in situations...but few times you hear God's voice. I know that I heard God's voice that moment. With tears streaming down my face, I looked at the doctor and said, "God has a plan". I think that she thought that I was nuts, but that's okay...I was just telling her what was going on. My poor friend David was stuck there in the middle of all this, he just lovingly held my hand. I needed to call Chad and tell him to get to hospital, so that the the neurologist could talk to us both together...the rest is kinda a blurr. David wheeled me back to my room and prayed with me, and waited with me until Chad could get to the hospital. I look back now and also know that David was exactly where God wanted him to be too. Chad got there and we nervously went back to the NICU, the neurologist was not there so the doctor came over and told Chad what she had told me...I believe that this is the first time she mentioned us needing to consider taking him off life support, due to the extent of the damage to his brain she was concerned about qualitly of life. She was also concerned because Dane was only 4 days old and most bleeding doesn't hit it's max until day 7 of life...so we were prepared for it possibly getting worse. I remember thinking that he looked so perfect, how could all of this be happening and we don't even see any signs of it? It was the worst feeling in the world. And now we had to go home. Leaving a VERY sick little boy behind so that we could go home and wait for the neurologist to call us and tell us her opinion on Dane's head scan. We left the hospital with no baby and uncertainty of ever bring him home. I was so angry at God, he told me he had a plan...I felt his presence, but was soooo angry. I didn't pray one single prayer that night while we waited for the phone call. Like a mad little kid, I was not speaking to God...If I would have seen him I might have folded my arms and stomped my feet at him.

The neurologist finally called at around 7:00 and said these magical words to us, "let's give him a couple days and see what happens", she also said if he makes it he has a 75% chance of having severe cerebral palsy. Not what any parent wants to hear but it was the best news in the world to us. We sat and explained it all to Gage and Katie, and I must say that we have the best kids in the world. Katie snuggled with me and cried...Gage said very confidently, "I think he is going to be fine." I think that God was speaking to more than just me that day, Gage was almost getting annoyed with us because we were so upset, it was like he knew what God was saying to him and we weren't listening. Pretty cool for a then 16 year old. Dan and Kelly came over and hung out with us for a while, I think that there was some wine shared between Chad and Kelly...it was good for Chad to have his sister there.
Chad was my hero, he took care of me in a way he never had before. You see I was pumping breast milk, so I had to wake up every 2-3 hours to pump, on top of recovery from my c-section. But Chad woke me up, and had everything ready for me he actually stayed up with me too ( and if you know Chad this is no easy thing for him). I don't think that I would have continued pumping if it wasn't for him, it was so painful and I there was a part of me thinking "what if I am going through all this and the baby doesn't survive to even use it"... thankfully Chad was there to encourage me.

Since that day last year Dane has steadily climbed up, he is a true testiment to the power of prayer and God's faithfulness. But Valentines Day will always have a new meaning of love for me, this is a day where God showed His love in an extraordinary way. Not chocolates or roses, but a strong yet quiet voice reminding me that He has a plan for Dane and our family.

Here is Dane playing with his new guitar from Grandma and Pap Pap!

cool pictures...

2008-02-11T18:34:00.000-08:00

This was the first thing that I saw from the NICU, I hadn't seen him yet so this diaper was all I had to go by. And yes, he was swimming in this diaper!
This is the first picture taken of Dane with Chad's phone moments after his birth. His agpar scores where 6, 5, then 1...very scary! They had a hard time getting him intubated.

I never thought that he would grow into those toes...

Happy Birthday Dane!

2008-02-11T17:49:00.000-08:00

Okay, so I am a day late...

We decided we needed to somehow go out and celebrate making it through the past year by going out to eat with the birthday boy. We went to Island's because they would reserve us a little table outside (to avoid the germs)...oh ya, our cutest friends in the whole wide world bought us a gift certificate too (Brian and Stacy). We went at 4:00 to avoid the crowds, sanitized the table and enjoyed each others company and the nice weather. We are going to have a real birthday party for him when RSV season is over, hopefully the beginning of May, it will also be a celebration of when he came home from the hospital. We did take some cup cakes to Pap Pap's and Grandma's and sang him happy birthday, of course he just wanted to grab the candle. He ate the entire cup cake too!

So last year...I woke up and was feeling better, I think that I had been off the mag like 6 hours so I could begin to feel my body coming back to life. Kelly had stayed the night with me and when she headed home in came the rest of the troops. I remember having an entire room full of people, and how great it was to be able to communicate with them! The morning went well, they got me up to walk around the nurses station and everyone was feeling hopeful. I was stable all was well, so everyone left to go have lunch...I should have known something was going to happen, remember what I said about being alone? Out of know where the contractions started, and they were fast and furious. One of the docs came in and checked and I was at 5 -6 centimeters, not good. Dane was in the breach position so a c-section was a must. I called Chad and he had to leave Gage and Katie in the waiting room, while they prepped me for surgery. Chad started calling everyone to come back...Dane wasn't going to wait any longer, he was coming NOW! It was like a scene from ER, they were literally running with me down the hallways. They threw some scrubs to Chad and told him to change and meet us in the O.R. (which has a VERY funny story of it's own, that I will only share in person!). There was no messing around I think that I was in the O.R. for like a minute and they were putting in the epidural, and unfortunately they were cutting me open before I had time to completely numb...I was in a lot of pain...last thing I remeber was thinking "this isn't how it happens on TLC's Baby Story!" Then it was lights out for me.

I woke up very confused in the recovery room, it took me a while to figure out what was going on. I had to remeber that I was pregnant, and went into preterm labor...and oh ya...I had a baby! The first thing I asked was how was the baby, the nurse said that he was stable in the NICU...then out of my mouth flew "well, God loves him more than I do...so he is in good hands"...I am quite sure that she was like "okay you big wacko", but that's how I was feeling, why I felt like I had to tell her is beyond me, maybe the drugs. I stayed in recovery, for a little longer than usual...I was very dizzy. Chad and Mom were in there with me...what else does a girl need? Maybe my Dad too, but the nurse was breaking the rules by letting my Mom in. They finally wheeled me to my room where again I was blessed with so many family and friends. I clearly remember feeling very smelly and in need of a good shower, everyone kept hugging and kissing me and all I could think about is how gross I must have smelled! I was still in denial of what it meant to have a baby at 26 weeks, but I was so full of peace from the Lord that I just wanted to take a shower!!!

Our Anniversary

2008-02-09T13:53:00.000-08:00

Today is Chad and I's 17th wedding anniversary, this time last year I was on my second day of mag and feeling the effects fully. I was having a hard time breathing, seeing, talking, eating etc. They took me to have an ultra sound to see how much amniotic fluid I had, which was not great but okay. They estimated Dane to be at around 2lbs 4oz...which they were pleased with because he was big for his gestational age. Things sounded good so everyone left my room and I started to doze off, when I felt a gush of water...I prayed that it was my catheter that fell out, but I knew my water had officially broke. The nurse confirmed it, which brought in a whole slew of doctors to come and chat with me about the risks of carrying a baby with premature rupture of the membrane. I look back now and everytime something serious happened my room was empty, which is really crazy...because there was pretty much always some one there with me. When my water broke I was alone, when the doctors came in to chat with me I was alone, finding out I was in preterm labor I was also alone...I don't know why God planned it out that way, maybe so that my dependance would lie solely on Him. So, everyone headed back up to my room...I do remember that I had to be fed, the food was awful too. I just kept thinking as people were shoveling food in my mouth that I had to eat so that Dane would get bigger. I clearly remember thinking whatever I had to endure would be worth it, that the liquid hot led they were pumping through my veins was going to keep Dane in me for a little longer. Kelly spent the night with me, which was nice so that I didn't have to rely on the nurses everytime I needed a sip of water. I remember a large mexican family was having a baby in one the rooms close to me, I could hear the mom screaming during delivery and I could hear the entire family yelling and cheering when the baby was born...I remember hearing that baby cry...and that is when it hit me for the first time. I may never hear that. The one good thing that happened this day one year ago, besides all of the blessings from family and friends, was that I had made it through the final injection of steriods to help Danes lungs. I made it two days with out going into labor, and the NICU doctor told me every day that Dane stays in me is 3 less days in the NICU...so I was at least thankful for that. By the end of the night I was on oxygen, and they were starting to wean me off the mag...I don't think that my body could handle anymore of that stuff.

Dane is taking a nap, sleeping peacefully in his bed completely clueless to the miracle that he is. Tomorrow he will be one...it's the strangest feeling, a combination of celebration and mourning. I am glad he is too young to feel anything from me that is less than celebration and thanks to God, but the reality is that I wish that his birthday had not come when it did. I remind myself that it is God's plan, and his plans are perfect.

This time last year...

2008-02-08T15:16:00.000-08:00

I had been in the hospital for 24 hours, high and groggy from the mag. I was in a good place emotionally, I had tons of family and friends coming in and out of my room bringing love, prayers, gifts and laughter. I was dialated to 3, but stable. I think that I was in total denial of what layed ahead for our family and I was completely ignorant to any and all aspects of prematurity. You see everything was going great until this point, so we had no need to ever explore the prospects of having a preemie. Yes, we were resting comfortably in the hands of our Lord...fully trusting in his plan.

I will try to post every day for the next two weeks for two reasons...

1.) to use this as some sort of therapy for myself, when this was all happening I just put on my game face and did what I had to do...I think I am just now starting to grieve what happened
2.) to give people MY perspective of what happened (not that any one cares...but hey, you are reading my blog!) : )

These were some pictures of today, just me and Dane hanging out in what used to be our pool table/game room...it is now Dane's game room!

Quick...what's the number for 911?

2008-01-27T13:22:00.000-08:00

So after a couple of days of Dane being a little fussy and not having the best appetite, the under lying issue reared it's ugly head at 1:30am Thursday morning. We woke up to Dane trying desperately to cry, only thing is you have to be able breath well to cry...which wasn't in his favor at the moment. Chad and I sprung into action mode, we hooked up the nebulizer and Chad gave him a breathing treatment while I contacted the hospital closest to us to see if we could bring him (I was concerned because they didn't have a pediatric unit), the suggested that we call 911 and let the paramedics decide where he should go. After a long hard though out decision (really it was only like 30 seconds) we decided to go ahead and call since he was still gasping and wheezing. The fire department arrived first where they noticed that he was retracting when he was breathing so they gave him another breathing treatment...the paramedics showed up shortly after, and none of them could figure out how to get the pulse ox monitor to work on Danes fat foot, so we had no idea what his saturation levels were. Based on what they were seeing they though it best to take him to hospital. Chad rode in the ambulance (I still had my jammies on) I got dressed and followed the ambulance. We were heading to PCH when we were told that they were not taking any ambulances, then we were going to Banner but they also didn't want us, I read that most of the emergency rooms have been full with some really sick kiddos...so we ended up at St. Joe's. They diagnosed him with croup, and gave him some special steroids to open up his throat which was swollen. He had a 102 fever, so they did a chest xray too, which thankfully looked great. So after breathing in some steroids and being on a constant cool mist we were released at around 6:00am. We think that he is on the mend, he still has a nasty cough and we are praying it doesn't settle in his lungs...but so far so good. It is a miracle in itself that this is the first time that he has been sick, and with the flu season starting to peak now we still have several months of trying to keep him healthy. At least we are almost over the hump though!
Katie came down in the morning and asked "what was all the racket I heard at around 2?" It cracked me up that she would hear a bunch of noise and not even get out of bed to check it out, that's a Robinson for you!

My photo card is still stuck in my printer...sorry no pictures!

Good Grief

2008-01-18T14:35:00.000-08:00

After telling you all about my clumsy morning, I went to add the picture of the broken water bottle by putting my camera card in my printer....when it slipped and went into the wrong slot (the slot for larger cards) and now it is stuck somewhere in my printer! I give up...and yes, I have had my coffee!
I'll have Chad work on taking the printer apart to retrieve my photo card...I am walking away before I goof up something else.

The kitchen flood

2008-01-18T13:53:00.000-08:00

For those of you who checked out Stacy's blog, and heard about our lovely morning together...there is a little more to the story!

Not only did I manage to flood my kitchen and potentially ruin my 6 month old new Pergo floor, but I also managed to somehow get a pound of nicely whipped butter all over my floor as well. After dropping the five gallon bottle of O Premium water all over my floor, I foolishly decided to start on the cookies for Gage's party (Nerd alert...yes, I still baked cookies for his party even though he turned 17) I started creaming the butter with the mixer and stopped to walk Stacy to the door. As I said goodbye we hear "bam....boom...clank, clank, clank". We new it wasn't gong to be pretty, but we boldly walked back into the kitchen to face the noise. My hand mixer had fallen over, resulting in my mixer, the bowl, and creamed butter all over the floor we had just spent all the time cleaning up. We both decided I had better go back to bed and start the day over, I did stop everything and made myself a wonderful cup of coffee...I even put real sugar and cream in it...I drank my coffee and felt my soul lifted with the awesome taste of my little liquid drug of choice. Then all was well in the world. I finished the cookies, and the rest of the day was a great success.

These are the lessons I learned that day:

1. I am a big weakling and I will leave the duty of changing the water bottle to Gage and Chad.

2. Towels are faster than a shop vac.

3. Don't leave your hand mixer balancing on the counter with a bowl of butter.

4. Drink your coffee before doing any activity!

5. If your going to have a day of kitchen disasters, have Stacy there to share in the laughter!

Happy New Year!

2008-01-01T12:11:00.000-08:00

Christmas morning

HERE I COME!!!

BIG BOY!

We hope that everyone had a wonderful Christmas and we wish you a very Happy New Year! As we enter 2008 with a VERY mobile little boy, we are so hopeful and excited to see what surprises Dane has in store for us! He has proven himself to be very adventurous in nature, as well as a natural climber. He wants to crawl up EVERYTHING which has been challenging to say the least. He is pulling himself up on the sofa, his crib, our pant leg, the bar stools...you name it, resulting in countless bumps on the head...and all this in the past week and a half!

We did spend Christmas with family, everyone was healthy and it was so nice to have "normal" Christmas. Dane was not at all interested in his gifts, with his new found mobility he could care less about toys and you can almost read his mind and I think that he is saying "ooh, I don't think that I am supposed to touch that, so I better go touch it". We had a quiet News Years Eve at home, I made pancakes and eggs, we played WII, then I was in bed by 9:00!!! Gage and Katie did stay up until the new year, but they were alone in their effort to ring in the new year at midnight.

I am glad to put 2007 behind us, and begin a fresh new year with hope and an overwhelming sense of thankfulness for all of our blessings past, present and future.

Early Christmas Present!!!

2007-12-21T16:35:00.000-08:00

Dane's been working on it for the past couple weeks, but today he started crawling!!! Another HUGE milestone for this little guy who has over come so much! He just amazes us everyday! We have nick named him Curious George because he is into EVERYTHING that he can get his hands on! From fingers in the light socket to pulling on the Christmas tree...and we couldn't be happier! He has also started clapping his hands, it's too cute. When I learn to upload video I will get him in action, until then enjoy these new pictures of our little miracle!

Cute picture Alert!

2007-12-06T11:41:00.000-08:00

Isn't he handsome in his hippo bath towel...courtesy of Aunt Julie!!!

Cousins

2007-11-26T08:46:00.001-08:00

Yesterday we decided to get out of the house TOGETHER...what a concept, huh? So, we walked down to the park by our house, loaded with blankets and munchies! Dan, Kelly and the girls joined us for some well needed time together. Since Dane has been born we haven't been able to hang out like we used to, so during RSV season we will have to take full advantage of good weather days at the park. It was great to see Mallary, she is already smiling which is about the cutest thing in the world...I don't care if you have a normal full term baby or a preemie with potential disabilities, there is a small boulder lifted off your shoulders when you get the first smile from your little one. I remember when we got our first smile from Dane, I was so thankful for an answered prayer, my continous prayer was that he would have the ability to love us back and that first "real" smile was like a big ol pat on the back from God reminding me that he was still in control. I was glad to get to celebrate in Mallary's smiling chubby face!

Our sermon in church yesterday was about complaining...after really thinking about how much complaining that I do I realized that I am a big complainer of little things that I really have no control over, most of the things that I complain about are the minor things in my life. When it comes to the big things I tend to see my glass as half full, quick to give thanks for the good that I know will come out of the situation at hand. But, boy oh boy, do I need to work on not complaining about the little things. Pastor Trev said "complaining stops our becoming who God wants us to be." Another subtle thump on the head I needed from God, reminding me to be joyful in all situations...no more WINE with my cheese...heck I would rather have a beer anyway!

Happy Thanksgiving!

2007-11-22T15:36:00.000-08:00

I think that Dane enjoyed his first Thanksgiving, though hopefully this Thanksgiving will not resemble Thanksgivings in the future! Hopefully next year we will be with all of our family where he can play with his cousins, aunts, uncles, and of course Grandma and PapPap! His lungs will be healthy and strong enough to handle a flu bug. Until then we spent today playing games and eating, avoiding "large crowds and small children", you guessed it at home! Since this is one of the few occasions that I knew that all five of us would be home together with out interuption...I forced the gang to head down the street to the park for some family photos. Gage complained the most...he used to be the one that LOVED to get his picture taken but he will be 17 in 6 weeks and the time of me forcing family photo shoots are coming to end...and too quickly for my liking! Anyway, Dane for the most part was more facinated with everything but the camera, we did manage to get some decent pics. We have a had a day full of laughter none the less...we all laughed so hard we cried during dinner, but that is a story that you had to be there to appreciate so I will spare you the details...just know it included 3 of us spitting food on our plate.

I have given the kids an assignment to make a list of the top 10 things they are thankful for, it should be interesting what they come up with this year. I remember when they were both little and you would get a turkey of their hand print sent home with the fingers/feathers filled in with all that they were thankful for, the lists were always sweet and simple...you know, Mom and Dad, house, food, water, and God were pretty much always the list. We will see if those will still round out the top 10!

So much to be thankful for this year, I'll spare you my list because it's a doozey!

Got Kleenex?

2007-11-21T09:44:00.000-08:00

My sweet Aunt Terry forwarded me this the other day. She warned me that I would need tissues before I opened...boy that was an UNDERSTATEMENT! I started watching it the other day when I realized that I needed to continue watching on a non make-up day! So, this morning I sat down to watch the entire video (it's about six minutes long) and was in awe of what a wonderful job this father did of telling this heart breaking yet miraculous story. It was worth every tear...after watching the story, please come back so I can share a quote from the father of Eliot.

http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

After watching the video I clicked on to Eliots blog page. I was inspired and wanted to share this entry. Eliot's father, Matt Mooney wrote:

"Ginny and I were recently reminiscing how we looked forward to checking comments when Eliot was here. It was amazing to see folks flock to the site and check in on a boy that most of them had never actually met. He had that way with people. We quickly learned that this whole thing was beyond us. A story was unfolding and we got to take part.Some of our favorite e-mails came from those who noted that they were not “religious” or told us how they “were not sure they fit in this group”; but they went on to tell how Eliot had taught them something or just brought a smile to their face. Some even elicited how they could not believe they were reading a blog that was written by a Christian living in the South. But all were drawn in some way to something. Eugene Peterson says it this way:“Everytime someone tells a story well, the gospel is served” All we have done is tell a story. The story of our son. And, oh, what a story it is. I have purposely made strides to downplay the God-card. This was simply because all I could do was get in the way with my feeble attempts. God was in the story. He did not need to be exposed. If you have found yourself drawn to this story and not really knowing why, I humbly propose that my son is only a vehicle to proclaim a story greater than his own. There is someone who loves you with a love larger than ours for Eliot. There is one who takes you with all of your flaws and delights in all that you are. He sings over you when you sleep and hems you in while awake. He destroys the worth-measures of man and pronounces you worthy. He is Jesus. He is the only way we have made it thus far and our only hope for tomorrow. Thank you, Matt & Ginny Mooney"

We too know that God has used Dane's story to reach people, I will never forget right after Dane was born my friend Beth telling me that people are talking to God...praying for Dane...people that haven't talked to God in a very long time if not ever. Right there I knew what ever heart ache that we were going to endure was going to bring glory to God. I totally underestimated how Jesus would reveal himself through Dane's story...but then I realized that Christ's hand is in ALL of our stories, we just need to take the time to share our stories and He will get the glory. Like Matt Mooney said..."God was in the story, He did not need to be exposed".

Happy 6 months! (adjusted age that is!)

2007-11-16T18:31:00.001-08:00

Dane turned 6 months old, well if he were born when he was supposed to be that is! We had his nine month check up last week and he weighs 19.5lbs! He is in the 25th percentile for weight and 50th percentile for height...and that is for his actual age!!! So basically he has more than caught up to his peers in size! Developmentally he is 6 months, give or take a couple weeks. We are working on getting him up on all fours, which he will tolerate for a while then he kicks back out of it. We are also working on positioning him in ways to NOT let him arch his back...which is something that he has recently started and it's not a good thing. He has also learned that he can fight his positioning during physical therapy, his last session he spent crying and fussing. It's going to be an uphill battle and he is going to need to continue to be a little fighter, so I guess all that fussing is a good thing. I have to say that it breaks my heart to see him so miserable during therapy, but the fact of the matter is that I know that it is the best for him and I am soooo thankful that we have been able to have him in early intervention so early. He has cut his two bottom teeth and I think that he is working on his top two, he has been a bit grouchy so I am blaming it on his teeth...it couldn't possibly have anything to do with the fact that he just may be a tad bit spoiled. ;)

Dane also had his first RSV shot, which he will be getting every 29 days until the end of March. We have met our deduct able for this year, but starting in January we will have to pay the co pay for the shots...and our co pay PER shot is going to be $463.00! Fun huh? Right after Christmas and Gage's birthday. I was freaking out a bit, because we don't have an extra $463.00 per month in our budget...but somehow God ALWAYS provides, do you ever have those months where you look at your budget on paper and you are absolutely mind boggled over how in the world you are making it? Well this entire year has been like that, and here I sit, another month with all the bills paid! God is good!

NOT so photogenic!

2007-11-16T18:19:00.000-08:00

Sorry it has been so long since I have blogged, I really have been trying to get some cute pictures...but our little bugger has figured out when the flash is coming resulting in many many pictures that look like this:

TOO FUNNY!

Happy Halloween...a day late!

2007-11-01T16:52:00.000-07:00

"what do you mean no candy for me?"

We finally got to put Dane in his Halloween outfit at around 6:00pm, it was too hot to have him in long sleeves during the day...go figure, the high was 85 yesterday!

Mom and Dad came over for dinner, Gage had to work, Katie dressed up as a Starbuck's barista and handed out candy (too cute, huh?)...then we ran out of at 7:30pm!!! I felt bad, we have never run out of candy before. I don't know if we had more trick or treaters than usual (I am usually out with the kids trick or treating so I have no idea what the usual amount is) or if Katie was handing out more candy than normal! Anyway, we had a nice quiet night.

I cherish the nights when we are all home together, if Gage isn't working he is out and about. Let's see, Monday night he went to YoungLife, Tuesday was youth group, Wed he worked, tonight he is going to worship band practice...yes, he is becoming a typical teenager! He will be 17 in two months, he graduates from high school next year...where did the time go?

The big evaluation!

2007-10-29T20:08:00.000-07:00

Well today Dane had his first evaluation by the PCH physical and behavior therapist. I have to say that I was bit worried, I have read some stories that had me thinking they were going to point out everything that he is not doing and that the entire thing might just be a big downer. I am glad to say that it was a great experience, the lady was so nice and you can tell she really knew her stuff. Basically, she said that he is right on target for his adjusted age, he is one week behind in his gross motor skills...but a little bit ahead on everything else. She did notice right away that Dane has some muscle tightness in his hips and trunk, so we have homework in the way of some new exercises and positioning. Miss M, Dane's PT, was nice enough to be there for his appointment (thank you Miss M!!!) it was great to have her there, and we are eager to get working on his new homework! He was such a good boy too, he played well with her but, didn't flash her too many of those big Dane smiles! He was pleasant and attentive, and she used the phrase "bright eyed". She said that for a 26 weeker with grade IV bleed, he is doing amazingly well...she was overall very encouraging. We talked a little bit about the possibility of the diagnosis of cerebral palsy coming down the line, but she seemed to feel that he wasn't looking like he was heading in that direction, but we will know more at his next appt. (which will be in another 3 or 4 months) It was good for my soul to hear that today, the past week I have been a bit weepy. I did get scolded on the exersaucer...which I knew was coming. She said even 15 minutes a day was way too much for him. So, we will pack up the exersaucer...it was fun while it lasted!

SOOO many prayers have been said for Dane, God could have said "no" to our prayers...and we would have still praised Him, but He said "yes" and we give Him all the glory and praise!

Yes, we have hit a very big UP on our roller coaster ride! GO LITTLE D!!!

(I took this picture with our camcorder...sorry it's so grainy)

Rocking and worrying

2007-10-24T10:33:00.000-07:00

Now that Dane is more stable when sitting, he has started rocking himself back and forth. He freaked me out pretty good when he started doing it. I know that rocking can be an early sign of autism, but I have to stay positive and pray that he is just exploring his new found ability to sit and move his trunk. Yet another balance I need to find of being realistic to what Danes future could be, yet not getting discouraged and reliving the moment that we found out he had a grade IV bleed every time he does something that doesn't seem "normal"...it's the balance of knowing that Dane may have disabilities mild or severe and my spiritual knowledge that God is in control and has chose our family to be blessed with this tiny guy that has already beaten the odds. So here I am again, after a day of useless worrying, I gave this issue back to God and that is where I found peace. God constantly reminds me that he is in control, my job is to love Dane & teach him to love God and others...it's that simple, rocking or no rocking, cerebral palsy or no cerebral palsy, autism or no autism...etc. It's just that simple.

Thank you Lord for reminding me of this in your awesome loving way.

I know, I know...

2007-10-24T09:57:00.001-07:00

It's been a while since I have posted...I was off of work for two weeks, busy with ortho and dental appointments for Gage and katie, and I was really sick for about five days of my time off. Well, Dane turned 5 months (adjusted age) on Oct. 15th. He is doing great, he can sit unsupported for about 30 seconds...sometimes longer. He is using his hands a lot more and seems to have much better control of them. His right hand is still a little tighter than the left, when he grabs for stuff with his right hand it's hard for him to completely straighten his fingers...BUT he is using his right hand and that is great! If he has something under his belly, he will get up on all fours and rock...but it is not very often. He just doesn't seem to interested in crawling or scooting, but we continue to encourage him during tummy time.

We took some pictures this morning with his early intervention therapist, she had him sit and bounce on the ball to work on strengthening his trunk. He was looking handsome in his outfit that was bought buy Aunt Sally and cousin Julie, I put his matching hat on and this was the response I got! I took the hat off and he immediately gave me a big smile! (I thought the hat was cute, but I suppose that is a Mom thing.)

2007-10-15T11:19:00.001-07:00

More new milestones!

2007-10-07T19:26:00.000-07:00

Dane has started to make a new noise, we call it a zurber...but I know our family has some "unique" sayings. You may call it a rasberry sound ...anyway he is also making a kissy noise, I tried to snap the picture while he was doing it. This is another thing that may not seem like a big deal, but for Dane it's another milestone that we didn't know when or if he would make! Yet another celebration for our family as our little man did a zurber and a kissy face!

Two big milestone were reached this week, except this time the milestones were for Chad and I...First, Dane had his first sleep over at Grandma'a and PapPap's house! I can't believe how at ease I was, I really wasn't worried at all. He did great, slept all night and was generally his happy self! We went to an improve show with Brian and Stacey, it was just like the show "who's line is it anyway?", we laughed so hard! I can't wait to go back with a big group of people, it was a totally kid friendly act so we are looking forward to bringing Gage and Katie. It was great to get out, we haven't done anything since Dane came home from the hospital. The other milestone was letting Gage get his license! He is officially driving and unlike Dane having a sleep over, I am NOT totally at ease with this! Poor kid has to call me when gets to work, when he leaves work, and there is a chance I may call him during his drive to work! I know I am a nut, but it's been tougher than I thought to let my big boy drive by himself, at the same time I am ever so thankful that he is able to get his license, have a job and be independent...one of the many things since I had Dane that I never thought twice about.

It's a big no no!

2007-10-07T19:17:00.000-07:00

But I did it anyway! For those of you who don't have a pediatric physical therapist in your life you may not know that exer-saucers are highly frowned upon. Exer-saucers have the potential to encourage toe walking, muscle tone issues, hip problems...and more. We have been advised to not let Dane use one, because of his high risk for problems. So, we had been good and not even opened the exer-saucer that was so generously bought at his baby shower. But as Dane gets older and gets so excited for new things...we just couldn't resist letting him play with it! He absolutely had a blast, it was encouraging to see him grabbing at the toys and using hands so well. We only let him sit in it for 15 minutes, and based on what we see with Dane so far...my Mommy gut is telling me that 15 minutes once a day isn't going to hurt!

What do you think?

2007-09-26T09:51:00.000-07:00

I am no mind reader, but I am quite sure that he was saying, "get that camera out of my face!"

This picture made me feel a little bit like the paparazzi! Maybe I need to give this child a break from the big flash of the camera!

2007-09-26T09:04:00.000-07:00

Katie and Dane hanging out together!

So, Dane's new thing is grabbing his feet...when he is on his back! This is another thing that to most of you may not seem like a big deal, but for us it is a very big deal! It means that his stomach muscles are getting nice and strong, as well as the fact that he is figuring out that if he pulls his legs up he can get to those sweet little piggies. Everytime we see him figuring out something new, we are so thankful because it means that he is making all kinds of new connections in his brain.

We had a busy Saturday, I worked then we went to my Dad & Brothers Bday party, then straight home for UFC fight night. We had a great time and Dane did well until everyone started yelling during a fight...which completely freaked him out. So, that will be the last time we have UFC at our house for a while or at least until RSV is over next spring.

How could you...

2007-09-20T21:08:00.000-07:00

NOT ZURBER THOSE PIGGIES!!!

Sorry, I just love his little feet!!!

Pooped out

2007-09-20T20:20:00.000-07:00

(Well...Daddy reads when he has to go poop, so we thought we would give it a try! Sorry too much info!???!)

We have spent the past couple of days trying to get our little guy to poop...and after two servings of prunes, lots of applesauce, and a good book we are all pooped out...literally! Thank goodness, he seemed to be in a lot of pain and would start to cry and squeez whatever was in reach...and let me tell you he has quite a grip! We are very spoiled with his laid back character, if he is fussy it's because he's hungry, tired, or poopy (or lack of poopy). Hopefully tomorrow he will be back to his normal easy going self!

We are working on strengthening his "core"...I know, sounds like Pilate's, but that's what we are working on for his trunk control so he can learn to sit up. He is doing a lot better with his hands and is grabbing at toys with both of his hands, though he favors his left more. His right side of his neck is still a little tight, so we continue to work on stretches and have to keep using his "zacky hand" when he is in his car seat or his bouncy chair because if we didn't have something next to his head...he would constantly have a head tilt. But overall he continues to keep chugging alone and amazes us everyday! I am so thankful for all the little things that I don't even think that I ever took time to notice with my other kiddos. Little, things like using his hands to try to put things in his mouth...I don't think that I ever thought twice about any developmental milestone with Gage or Katie, probably a good thing. If I knew then what I know now, I am sure that I would have thought that they both were going to have Cerebral Palsy or some other problem! But, on the good side...I don't take ANYTHING this child does for any less then a miracle...and what a blessing to witness a miracle everyday!

Holding hands...

2007-09-15T14:30:00.000-07:00

I was emailing one of my sweet friends at work with some updated pictures of Dane, and I came across this little gem of a picture that Chad snapped with his phone just a week after Dane was born. " Wow", I thought...I stopped and took some time to look at this incredible picture. I remember at the time thinking how cool this picture was, the fact that Dane's entire hand was the size of Chads thumb nail... now I really appreciate this picture more than I can express in a blog. Now that Dane is home and is doing so well, it just takes a picture to really put things in perspective. I follow some other preemies on their own incredible journeys and all that I have read and seen keeps me constantly in awe of the handy work of God.

After countless attempts...it finally happened!

2007-09-12T20:05:00.001-07:00

So, Daddy was the first one to get Dane to actually laugh! It was the cutest, sweetest, most precious, amazing (you get the picture) sound in the world! Of course I had the camera at arms distance so I snapped some photos of yet another milestone that this little man has hit! Hopefully we will not have to hold him like this every time we want to hear him laugh...at almost 17 lbs it may get old!

Dane had his first eye exam outside of the NICU, for those of you who aren't in the preemie world...even if preemies dodge the ROP bullet, they are still at extreme risk for having crossed eyes, near sightedness and lazy eye. We went to the doc yesterday and she said that his eyes look great and we don't have to go back for another year! Wow, another doctor crossed of the list! (until next year that is)

Just Peachy!

2007-09-10T11:43:00.000-07:00

Well after a weekend of feeling achy, feverish, and generally crappy...I am feeling a lot better! I found a stash of some antibiotics...left over from one of my many bouts of mastitis so I don't know if that's why I am feeling better or if "it" has just run "it's" course! I was terrified that Dane would catch whatever I had, so I tried to keep away from him the best I could. He seems fine and I am praying that he doesn't get "it"...what ever "it" was!

Grandma Lynn got Dane a well needed high chair, it was nice to sit him in something that doesn't break your back to feed him in! I thought that we would celebrate his new chair with trying out some peaches for the first time, which he proceeded to spit out after every bite. This is the first thing we have given him that he doesn't seem to like. I am a bit surprised that he didn't like the peaches, especially after we found out that he didn't seem to mind peas and green beans...but Dane is full of surprises!

So I am feeling peachy, the new high chair is peachy, of course my little man is peachy...hmmm, everything is peachy except peaches them selves!

My little block head

2007-09-05T19:48:00.000-07:00

Dane was doing his new favorite thing...climbing over his boppy. We had some blocks set up for him to look at, and apparently he thought that they made a nice pillow...because he stayed in that position for quite a while! We thought it was pretty cute and of course had the camera ready! Chad thinks that he was just trying to get in a comfy position to watch Sponge Bob with Katie, maybe so! He finally moved after a while revealing some nice indents on his cheek!

We celebrated Chad's birthday today, nothing to exciting, as our finances are tight. He worked this morning then spent the afternoon watching a DVD. I made his favorite spice cake and mushroom burgers for dinner. He did say that when he blew out his candles that he already got his wish...I am sure that it had something to do with ALL of his kiddos surrounding him on his bday. It was this time last year that I made him a another one of his favorite dinners (chicken fried steak...PaPa Ray style) when I noticed that nothing tasted right to me, I kept saying "this dinner tastes nasty"...only to find out in a couple days that I was prego! Chad's 35th year turned out to be a doozey!

2 weeks of breathing treatments

2007-09-04T13:12:00.001-07:00

It has been two weeks since Dane started his breathing treatments, I have a feeling that he should have probably been on them sooner...but that just my Mommy opinion. He is still super loud sleeper, but while he is awake I can tell a big difference in his breathing. He doesn't seem to get so winded during play and isn't requiring quite so much sleep during the day. Not to mention that he looks like a handsome young fighter pilot with his breathing mask! We did get the firm talking to about RSV season from Dane's doc. Dane's lungs have zero reserve so we can't take any chances with him this winter, the doc said that if he got RSV it would put him back in the hospital and could potentially be fatal. Even healthy full term babies have died from RSV, so we are taking it very seriously. On the good side, since we live in AZ we will at least be able to go on walks, have a picnic on a blanket in the park, and of course we can go to Grandma and PapPap's house if they are healthy. Hopefully next winter his lungs will be strong enough that we won't have to be quite so protective...but if not he is definitely worth all the extra steps to keep him healthy!

Live long and prosper!!!

2007-09-02T18:20:00.000-07:00

Okay, so Dane is feeling MUCH better from his shots and has also recovered from a night with out air conditioning (our air conditioner fan went out Friday night...it wasn't pretty) and apparently while spending the day at Grandma's house he has picked up the Vulcan (sp?) greeting of "live long and prosper".... Grandma is the only Trekkie in the family so she gets the credit for this picture!

Chad and I totally cracked up when I snapped this shot!!! Our little sci fi geek!

The Explanation

2007-08-30T10:52:00.003-07:00

So, I promised that I would explain the title of the blog...here it goes:

Because of Dane's brain bleeds and his birth weight he qualifies for services through the DDD (Division of Developmental Disabilities), this is a state run early intervention program. This is what provides Dane his in home therapies. Qualifying for the DDD has also put me in contact with many other organizations, so I am always getting packets in the mail about programs and resources for kids with disabilities. One day I received a packet from Raising Special Kids, and this is the first thing that I pulled out of the packet...

Welcome to Holland
By Emily Peri Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed us in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...And you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, that's where I was supposed to go. That's what I planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...in Holland.

I realized that SO many of us end up in Holland, this story inspired me, not only has a Mom to a baby with special needs, but as woman trying to navigate through this life...trusting that God has the ultimate flight plan!

3 shots in the thigh!

2007-08-30T10:52:00.001-07:00

I snapped this pic in the doc's office before the shots...how come babies are so stinkin happy before shots!!! Then other one is the result of the shots...a very sleepy wonderfully grouchy boy!

Well, yesterday Dane received his six month shots and he was a trooper...until today! Yesterday he slept most of the day and so far today you can tell that he just isn't feeling too hot (unless I am carrying him around with me, not sitting, CARRYING). He had PT with Miss M. and was very grouchy, so I held him while she worked with stretching him. I have to say how thankful I am that we have such a great physical therapist, she sincerely cares about Dane and I love how excited she gets when he does something new. Even though he wasn't feeling like himself, he managed a few smiles for Miss M!!! What a guy!

His weight as of yesterday was 16lbs 6oz! He is in the 30th percentile for his weight...and that is for is chronological age...not his adjusted age! This is HUGE, most micro preemies won't catch up for at least a year or two!!! He is also right on track developmentally for his adjusted age, he is doing everything that a "normal" 3 month old should is doing, he is even ahead on some things. I can't tell you how proud I am of him, he has had a tough little life and has proven to be such a fighter!

So, I finally did it!

2007-08-29T15:19:00.000-07:00

Well, everyone has been bugging me to get this blog up and running...so here we go! At first I thought that now that Dane is home from the hospital, no one would be too interested in anything going on in our humble home. I have realized that if this blog is for no one other than some other Mom of micro preemie looking for hope, then that is the best reason I could have!

So, some of you may be wondering why my page is titled "Life in Holland"?!? Well, if you don't already know...you will have to wait until another day for me to explain that one! I promise it will be worth the wait!

This is the story of how blessed our family is that God chose us to raise Dane. Dane was an unexpected pregnancy...you see my hubby and I have a 16 year old and a 10 year...we thought that our family was complete! I had been praying for God to show me direction in my life, as my kiddos were getting bigger, I thought that it may be time for me to get a "real job"! I can tell you that when we found out I was pregnant, we were in total shock! We immediately recognized it as the answer to my prayer...though not the answer expected! We laughed so hard at the thought of us having another child! The instant we stopped laughing we said if it's a boy we will name him Isaac, because of the story of Abraham and Sarah. Not because this was the child that we had been waiting for, but because one of the meanings for Isaac is laughter. After about 5 months of pregnancy I started feeling pretty lousy, achy, tired...all of these things I attributed to the fact that I was now "an older Mom". Unfortunately I was experiencing some preterm labor signs that I did not recognize. I went to the doctor because I just felt like something wasn't right, I was 26 weeks pregnant...that was the day my life changed. I was dilated to three and was possibly leaking fluid. I was air evacted (against my judgement, I kept seeing dollar signs!) to Good Samaritan where they have one of the best NICU's in the southwest U.S. I lasted 3 days before I went into labor, and on 2-10-07 Dane Isaac was born weighing 2lbs 5oz. We had an unbelievable peace even though he was born so early, Chad and I new that God was in control. My world was ROCKED when on Dane's fourth day of life the doctor sat down and told me that Dane's brain was bleeding. She explained that there were levels of brain bleeds, grades I-IV...grade IV's being the worst. She told us that Dane had a grade IV on the left and II on the right, then went on to tell us that IF he survived he would have severe life long disabilities. He is now 6 months old (3 months adjusted) and this blog is about the wonderful way this miracle child has so richly blessed our lives!