benwriteshisownstory

DRINKING FORMULA!!!

2012-01-22T19:41:00.000-08:00

TODAY WAS A GREAT DAY!!

Today I decided that I like to DRINK formula...through a bottle!!

Yes..I ate 5 feedings through a bottle and I did awesome!!

I am definitely on the road to getting this tube OUT of me ONCE AND FOR ALL...and it will be soon, very soon!!

It's pretty exciting stuff because this will change all our lives...Keep ya posted!!

Love you....

Benjamin

TODAY...I DID IT!!

2012-01-12T20:13:00.000-08:00

13 months old and guess what???

I did it!!

I rolled from: My back TO my stomach ...AND...then I rolled to my BACK again!!

I got a little stuck and my mom wanted to help me SO bad, but she refrained..My whole family was cheering me on and I finally did it...Today was a great day!!

Huge, HUGE, H-U-G-E accomplishment for me!

I'm moving forward...each and every day..we keep the faith and keep moving forward.

Love you!

PS: I have 1 bottom tooth that has poked through and I have one more SO close to breaking through...I love to bite anything I can get ahold of. It's so awesome!

YAHOOO!! I AM 1 YEAR OLD!!!

2011-12-21T20:03:00.000-08:00

(In case you are wondering...yes..I scratched my face up...I like to scratch and pinch and I will do it to anything I can get ahold of...even my own face.)

Well...I guess you must have guessed by the title that....I had a birthday!

And what a birthday it was...a HUGE milestone for our family indeed!!

My family took me to see my very first movie "at the theatre."

I was in a trance watching Arthur's Christmas and did well until the very end...then I just needed to be done.

My family bought me a cake, but of course I couldn't eat it yet...so they gave me plain "whip cream" so I could attempt to feed myself.

I didn't really like it much...but that's okay, it was the thought that counts, right?

Is today REALLY the 21st of December?

My mom wants to know WHERE the month of December went to? (She actually wants to know WHERE the days have gone since October 25th...the launch of the "In A Pikle" bag.)

She has been on the "road"...she has been on TV...she has been shipping...she has been packing...she has been unpacking...let's just say...she has been busy. She feels so blessed and excited too! Between this, ME, ZACHARY and M'KAYLA (and dad of course) the days have flown by!

As for me....

Let's see...

First and foremost...I am a very HAPPY baby....

If....I am being held OR someone is paying attention to me.

What do you expect from a baby who has had "round the clock, full time care since he was born, right?)

My parents joke that when they are "watching" me, this is their job because they have to wait to get anything else done until someone relieves them. :)

Of course...I am always keeping everyone on their toes...this is just how I roll.

I love Zachary and "Kay Kay"...I know them..I know their voices and I love them very much!

Hmmmmm...

The last time I wrote, I had my new helmet...

Well....

I now am the PROUD owner of TWO helmets...neither of which fit me.

My parents have taken me back numerous times to be fitted and refitted and refitted, but each time I find a way to wiggle it to where it cuts into my ear, nose, eye, forehead...well you get the idea (and then of course I am not happy.)

To be honest...I am not sure "what" the plan for the helmet is...

I am still not sitting by myself....but my head is getting stronger...

I am spending more and more time on my belly...I actually don't mind too much if someone hangs out with me...

I LOVE TO CHEW on anything I can get my hands on...and I drool alot too...my parents wake up everyday just waiting for my first tooth...

I weigh about 18 pounds and I am getting LONG...I've outgrown all my "jammies" and until just recently (since it just got cold here in the desert,) my resourceful mom cut the "feet" off my summer jammies so I could still wear them since my legs are so long...

I'm going to take after my dad and be tall....

I'm almost too tall for my bathtub, but my parents have found that my hands are hard to control and I WANT THIS G-TUBE OUT!!

So, if they give me a regular bath or shower (not in my tub) - it's hard for them to make sure it stays in...I'm LIGHTNING FAST!!

They have to keep it covered at all times, or I work really hard at removing it.

Speaking of G-TUBES...

I just know that I will get my wish SOONER rather than later...because....

I AM EATING BABY FOOD FROM A BOTTLE.

It can't be too runny and it can't be too thick...it has to be just right (just like baby bear's porridge.)

But I "suck"....I "swallow"...I "breathe"...AND I LIKE THE BOTTLE...

In fact...

DRUMROLL PLEASE...

I hold the bottle myself and feed myself!!

YES...I do!!

My parents almost broke into tears when they saw me do this for the first time!! It was a momentous day!!

I am still being fed my formula through my tube, but we are all working hard to get me off this...

My voice is still quiet, BUT...it is getting louder...we pray that over time my voice will be louder. They have suggested that my parents take me in to have them do some more tests on my vocal cords, but they are opting against this (of course they are. :)

If I am really mad, my parents can hear me from my crib...

I still make "growling" sounds....this is about the only sound I will make, but I make a "game" out of it...

I will "growl" and then they "growl" back and me...I love it and I just beam with smiles. My smile can light up a room...

My left eye is still leaky, but it is getting "less leaky."

They told my mom to bring me back after I was a year old so they could "stint" it open to help that leaky tear duct, but it's getting "less leaky" so my mom would rather let "good old fashioned time" do it's job.

BUT...guess what?

I "rarely" reflux anymore....like hardly ever!!

IF...my parents don't ever let my stomach get empty. So, I am on a continuous food drip all night and when I wake up, I feel great!

(They learned this by trial and error when they they stopped feeding me at night for a little while and when they fed me after my stomach was empty all night, I refluxed and refluxed and refluxed. (Well...you get the idea.)

So...noctural continuous feed is what we shall do...for now at least.

It is so awesome to keep that stomach stuff "where" it belongs...IN MY STOMACH!

I am off ALL my medicines and it feels great!!

My mom still doesn't take me out "too much"....but she has ventured out when she has someone to help her. I love to look at the lights in the stores.

At this moment, I have a slight cough, but overall....I am well.

The cold I caught from my "mom's travels" lasted a LONG time...I had to go through 2 rounds of antibiotic and it STILL stuck around (in fact, the cough is still here)...***I've got to figure out a way to get my immune system stronger....(my daddy who knows all about health stuff is working on this.)

We are headed on another trip and we are so excited to go to Moab for Christmas, (so please PRAY I STAY WELL!!)

(My mom wishes that she had words in her vocabulary that could express how thankful we are for you.)

Merry Christmas!!

Much Love....

A ONE YEAR OLD BENJAMIN

I'M 11 MONTHS OLD TODAY

2011-11-04T17:33:00.000-07:00

Wow!!

How time flies...

It's been awhile since I posted and you know what they say....NO NEWS IS GOOD NEWS.

This is right on the money...

In 11 months, I've made HUGE progress...

My mom was a little off on my weight on my last post, because I "now" weigh 16 pounds...

In the past few weeks, I have started to really "like" when my parents hold me upright on their shoulder and I'm doing pretty good too...This is exciting for them because I am really working hard on my head control. When I get tired, I just throw myself backwards (my back muscles are very strong) as hard as I can and this way they KNOW I am "done" with this position.

I still cannot sit without some help, BUT....I can now "roll" from side to side and I kick my arms and legs like crazy when I get excited.

I am still "batting" things around that are right above me and I LOVE TO BRING THINGS TO MY MOUTH AND CHEW ON THEM. YEA!!!

I am still being tube fed for the most part, and I really don't like "liquid" in the bottle.

BUT....if they put SWEET POTATOES in there, I try even harder to eat the bottle. (They have to cut the hole in the nipple bigger so I can get to the food, but this works for me sometimes.)

I do pretty good just eating off the spoon too. I've adapted in my own "Benjamin" way to my high palate....I will take a bite and then put my LEFT finger in my mouth and "suck" my food down. I use my finger to help me get the food "down" the hatch.

My brother, sister and I went "on the road" with my mom for her new business venture (www.inapikle.com) and BOY OH BOY, was a sight to see with all my equipment. I have a lot of stuff that comes with me and it was an "adventure" for us to "make-shift" all my medical supplies. My mom just kept saying how "crazy" she was to try and do all this, BUT...she did it and we all survived just fine.

However, I ended catching ANOTHER cold, and so I am trying really hard to get over it. I'm coughing pretty good and I just don't feel like my happy self right now, but I'm working hard to get over it.

My family has come to realize that I catch things REALLY easily and I am not really good at "travel" right now, so THANK GOODNESS my Nana could visit us and help out since my mom has been so busy. ***Her project is actually a "family" project for sure!!**

The decision was finally made and I now have a very "hip" helmet.

I don't like it, but my head wasn't getting any better, so my parents figured they had better try to help straighten it out.

I look pretty cool if I do say so myself!!

I sleep all the way through the night and my parents LOVE IT!!!

One of the medical professionals who work with me came by to visit. She showed my parents a paper from when I was 4 months old. My parents read back through the paper and were re-reminded about the HUGE HUGE HUGE progress I have made over these months.

My "daily" progress may be in "preemie" steps, but my "overall" progress is really LEAPS AND BOUNDS.

We remain so grateful for all the love and support that we continue to get from all of you...

We love you!!!

WHERE DOES TIME GO?

2011-09-23T22:17:00.000-07:00

Hi friends!!

Wow!! What a month we've had since our last post..

My mom has been crazy busy with helping my dad/Real Estate and working on her project (www.inapikle.com) and OF COURSE..taking care of me!!

I weigh a little over 16 pounds...and I am getting long..

I am still eating by my g-tube, and some days I will eat from the bottle and some days I won't. I still like sweet potato's and my family gives me all sorts of tastes of other things too..

Since my mom replaced my button, my new one has been keeping her busy because it leaks...instead of cleaning and changing the tape "once" a day, she does it multiple times a day some days...

My belly doesn't smell very good, but she tries to keep it as clean as she can...

The old button was too small, but she thinks this new button may be just a smidge too big...I just need to gain more weight and then it will fit perfectly and quit leaking...

I know that there is something in my stomach and I want it OUT! I pull on it and I have FAST hands...if my mom doesn't have it taped down really good, I get ahold of it and pull hard...there have been a couple of really close calls of me de-tubing myself.

I'm still pretty floppy..Some days I will hold my head up strong and some days I'm just tired...

BUT...I still love to arch as far backwards as I can and I am strong with that...

I prefer the right side of my head and wiggle my way back into my "preferred" position as often as I can get away with it...

My head is getting crooked, so before my soft spot closes, they want to put a helmet on me...we'll see what's going to happen...

As for developmental...I am focusing more on items placed above me...I do use my hands to "bat" it around and sometimes I will try to put things in my mouth IF they are "close" to my mouth already...

Cause and Effect are not concepts I understand just yet..

My parents do wonder "where" I go sometimes because I just seem to be in my own world...I will look "up" or "off" into the distance and my hands remain down, my back remains arched and my head to the right....it's a pretty interesting sight for them...BUT...if only they could read my mind OR I could talk, right? Oh the stories I would tell them...

I still make little growling sounds for my laugh and my voice is about the same..still pretty quiet...

I've been hanging out with my cousin Sophie who is a few months younger than I am and I just like to have her laying by me...this way I know I am not alone...

OR...

I want to be picked up and carried around the house with my family...

I had a couple of episodes where I have thrown up (which really freaked my parents out because I had the Nissen surgery and I am supposed to have a very hard time throwing up) - - - but...it's probably a good thing that I "can"....because this means that I "can" throw up if I need to...

My reflux isn't as it once was...some days I will go without refluxing at all...some days, I have a few episodes, but my Prevacid helps me...

I've had a cold in my chest for over 2 weeks now and my cough sounds like I'm barking...My mom knows I don't feel well because each time I cough, I cry...I haven't felt much like eating either...maybe this is why I don't want the bottle...I'm not sure "why" I'm not kicking it, but I guess that it's just taking me some time to get over it....I've been extra cranky at times..

BUT...when I do feel good, I love to smile and to be played with...I know my family very well and I know if they aren't around...I do NOT like to be left alone...ever..

My mom still is at home with me and she's REALLY liking it..

It's taken her a few months to get used to not working outside the home, but she is so thankful she can be with me...Some weeks, she doesn't leave the house...but she's okay with that...

My brother and sister are getting used to having her home too...I guess I was a blessing in disguise for them too....

My mom stays positive and happy because we have the best family and friends who continue to call, email, text, send cards, gifts and encouragement.

Thank you to all of you...

I know that I'm not an easy baby to take care of sometimes, (but I'm worth it)...the right person always shows their love at just the right time to us...

We are so grateful and blessed....

NEW MIC KEY BUTTON DAY

2011-08-31T21:50:00.000-07:00

Hello Friends!

So much great news, I hardly know where to start!!

I am sucking on a bottle now without doing a "choking" sound/behavior

It is only a few drops at a time, but that's okay because that is way MORE than I was doing.

We keep trying the bigger nipple (thankful for my mommy's friend who told her about the bigger nipple) and pactice with it seems to be helping me and making it easier because I am doing what I wasn't a couple of weeks ago...

I am still eating sweet potatos and loving them. They've tried some other things with me, but I keep coming back to banana's and sweet potatos.

My family was noticing a really bad smell coming from my belly (like a REALLY BAD SMELL) and my mic key button was really tight to my stomach. (sort of like if you had a tight pair of pants on and the button was squooshing into your belly..that's what it's like.)

My mommy called the hospital that originally put it in and they told her that I had probably outgrown it and would need a bigger size.

So...today was the day...the piece that my family tries so hard to "keep in" my belly came out and a new one was put in.

It was a snap!!

My daddy helped my mommy, but he got really sick to his stomach.

I don't know if it is the NASTY, NASTY smell coming from me or it was seeing a hole in my tummy that made him feel light headed, but either way, it's probably good he's not in the medical field.

My mommy wishes she didn't have to put it back in at all, but "I" think this will be the "first AND the last" time she will have to do this because as soon as I can sustain my growth with food/bottle, we can kick this feeding tube out of our house for good. :)

That will be an exciting day for SURE!!

But..until then, we remain SO grateful that there is a way I can eat and we are thankful for our blessings!!

Love you all!!

LIVIN' THE GOOD LIFE!!

2011-08-21T08:54:00.000-07:00

FOOD IS SO WONDERFUL!!

Boy..I have been missing out these past few months - eating Elecare formula through my tube.

I can't get enough sweet potatos and I like banana's too!!

I've figured out a way to "suck" my finger to get the food to go down, so it's pretty "messy" but we don't care because I am "doing it!"

My pump stopped working yesterday, so they brought me another one...those people "on weekend call" are so great to come right over and replace it. THANK YOU!!

We are working towards getting me "off" of the pump all together - but my parents have to figure out a way to give me liquids becuase the "bottle" - even with the new nipple, isn't working.

We tried a sippee cup and sometimes I do okay with it and sometimes I don't.

I've decided that my tube is annoying to me and I "like" to pull on it, so my mom has to make sure I can't get at it.

My muscles are still pretty wobbly. I can't sit up without being assisted and I don't like tummy time...but..I am at times, "rolling" back and forth from side to side.

I will let my mom put me "up" on her shoulder for a little longer each day, but she has to be careful because I am a "head-heavy" and I don't have much neck control, so I can be dangerous to anyone holding me like that.

The physical therapist came over and said that my head is still pretty crooked, but that it is "growing" at a healthy rate and that is great!! Head growth = brain growth!!

I love to be "back" in the arched position as much as I can and I still look "up" to the sky quite a bit, BUT.... I have a smile that can make anyone melt..

So even though I may not be looking at you directly, if you talk to me, I will smile so BIG and I may even give you a "a-a-a-h-h-h-" kind of "growl" (that's how I laugh and talk.) My voice is still pretty soft and my breathing is striderous on some days, but on some days you can barely hear me breathe.

It all depends on my reflux.

Some days are better than others. If reflux comes up, my voice and breathing are affected. But, I've learned how to "manage" my reflux because I will swallow it back down.

My mom received a letter from the State of Utah stating that she is not abiding by the law. Apparently, in the State of Utah, it is a law that each child get their hearing tested and that the results be reported.

I've attempted to have my hearing tested 3x and have only passed off one ear.

They have tried the other ear, but it hurts me when they put the "tester" in and then my ear is red and sensitive for the next few days after.

We don't know why, but I was born with really tiny "holes" (nose, airway and ears.) Since my ear hole are so tiny, I just can't sit still or stop crying while they put the tester in and in order to get an "accurate" reading, I have to sit "still" and be "quiet" while they do the test...

They have suggested "sedating" me so they can get it done.

BUT...

My mom wasn't okay with this and decided to "wait" to take me back until my ear holes grew a little bigger. She was thinking that once they grow some, the tester may make me irritated, but won't make me "cry" for pain. (Mom's know their kids "cry" - whether it is a "pain" cry or "I'm just mad at you.")

She is with me every day and knows that I can hear really well based on how I react to sounds, voices and being left alone. (I don't like to be left alone at all.)

Well..the State of Utah is not okay with this "mom" decision and has sent her a letter telling her that she needs to get this done "WITHOUT DELAY." "Utah State Law requires this testing...... ....Results must be reported for babies born in Utah as required by Administrative Rule 398.2."

I don't think my mom likes being told what to do when it comes to me. She has seen me go through too much pain and she knows me better than anyone else. She knows I can hear and that this test hurts me and she is not on board with them "sedating" me again just to have a "result" to report to the State.

I guess we'll see where this goes, but I heard the "mama bear" in her come out when she received this letter to "comply."

She and my dad just wants what is best for me. Period.

WORKING ON THE BOTTLE

2011-08-10T16:30:00.000-07:00

A BIG HUGE THANKS to my mommy's friend Emily who told us about a new nipple. It's longer and fatter and since I'm having so many problems with the bottle..totally worth a try!!

Thanks Emily!!

Appreciate you thinking of us and sharing the information.

DADDY TIME!!

2011-08-10T14:36:00.000-07:00

Well...my mommy took a break from me for the first time..

She, my brother and sister all went to Las Vegas for the weekend..

They needed to have some "one on one" time with her..I'm pretty time consuming..

SO...that meant daddy and I got to hang out for 2 1/2 days straight!!

My daddy is a good, patient man and even when he is sleep deprived, he never gets frustrated..

He just "napped" when I "napped" and "woke up" when I "woke up." (I do have to say that he was pretty tired when mommy got home and he was thankful to be back on the "schedule" again.)

Mommy missed me, but she did great!! Since she gets so cranky when she doesn't get sleep, we ALL think it's good for her to get a FULL night's sleep once in awhile (and she thinks so too!!)

What blessings we have!!

I LOVE SWEET POTATO'S!!

2011-08-10T14:30:00.000-07:00

Well...the verdict is in...I LOVE SWEET POTATO'S.

My Grandpa & Nana came for a visit and I was so happy to see them.

Anyone who knows my Grandpa, knows that he LOVES feeding people..food makes him a happy camper and he wants everyone to be as happy as he is!!

Well...he decided that he needed to "feed" me too, so when my mommy and daddy were out, he gave me sweet potato's and I LOVE THEM!!

He had to work with me because I kept pushing them back "out" with my tongue and then I haven't perfected my swallowing yet...it is still a challenge for me, but I really like the taste of those sweet potato's..

It took me four days to finish off 1 small container/jar of Gerber Sweet Potato's, but I did it!!

Another milestone for me..

Onward and upward..

FIRST ROAD TRIP....I didn't like it

2011-07-27T16:44:00.000-07:00

I am starting to get visitors and I really like it!! (Thank goodness my mom is loosening up a bit and letting people come see me.) I was able to see my awesome Grandma and my daddy's sister & family.

Also, a few days ago, my other auntie and cousins came for a visit and I fell in love with them...especially my auntie..(she has dark hair and eyes and I really like just looking at her..I guess you could say that we're pretty "bonded" and I like to "snuggle" with her - - - I hope my Uncle doesn't mind too much.. (ha ha!)

I took my first "road trip" since coming home from the hospital...

I did NOT like the car seat...I did not like it...Not one little bit.

I stayed in my first hotel...I did not like it...Not one little bit.

I went for my very first hike in the mountains AND...I COULDN'T STAND IT, NOT ONE LITTLE BIT.

So...I think it would be safe to say that "I just don't travel well yet" and leave it at that. (Mommy & Daddy were GLAD BEYOND GLAD to get home & let me out of that seat. I like to "arch" backwards and that seat didn't let me do that.)

But...as Johann Wolfgang Van Goethe says:

"I find the great thing in this world is, not so much where we stand, as in what direction we are moving."

As part of the Foster Family...I will continue to move "forward" - trying new things (even if I don't like it..not one little bit.)

(I think my mommy has read WAAAY to much Dr. Seuss lately, don't you agree?)

STILL UNIQUE AND FULL OF SURPRISES...

2011-07-27T16:05:00.000-07:00

So...remember that organization I told you about a few weeks ago that my Physical Therapist recommended to my mommy? (They are called "UNIQUE" and they are out of the United Kingdom.)

Well, mommy wrote to them and she heard back...It's a pretty cool organization, started for people who are diagnosed with rare chromosome situations. The woman who contacted my mommy's name is Beverly and she is awesome!! She wrote my mom a nice letter and sent her a package all the way from the UNITED KINGDOM for "F--R--E--E." This lady is a super cool cat in my book!!

When my mom first got on the site a few weeks ago, she thought she may have found someone "like me."

As it turns out...the other "person" that my mom thought was like me actually has different pieces of their chromosome #9/#14 missing/duplicated...

So..long story short....I'm still "Unique" (PERFECT name for the organization) - huh?

BUT...That's okay...because I am who I am...Unique and always full of surprises too!!

HOWEVER...The cool part is that she did send my mommy names and address' of several parents that have children with #9/#14 situations and my mommy is so excited!!

She has decided to "write" to these parents and WE'RE going to make some new friends for me (and her too...) These new friends are ALL OVER THE WORLD and it is so exciting!! She loves to meet new friends who have overcome trials - straight to triumph...they inspire us to keep ...moving forward!!

We are sure meeting some awesome people along our journey..what a blessing!!

Love to you all....

PS....If you ever need to get a hold of Beverly at "Unique" - you can find her at: http://www.rarechromo.org/html/home.asp

STRUCTURE OF MY EYES are NORMAL!!

2011-07-27T15:44:00.000-07:00

Hi special friends!

I visited the eye doctor a few days ago and guess what?

THE STRUCTURE OF MY EYES ARE NORMAL!!

I did great!! I tracked the light he wanted me to track "back" and "forth" and he was impressed!!

He told my parents that he feels my "eye" development is a bit delayed and their concerns are valid, but he thinks that it is because "I" am a bit delayed "overall"...

BUT...everything "looks" like it should structurally for me to see perfectly normal as time goes on.

This is totally awesome news!!

The next step he would recommend would be an in depth eye exam, but that would mean putting me back under general anesthetic & my parents are opting against that for now.

Time is what I need...Just time...

I am making so much improvement that unless it is absolutely necessary, we are saying "no" to any invasive testing....and boy am I GLAD!!

So thankful for parents who say "yes" when necessary, and "no" when not...

My parents are learning so much...medically, physically & spiritually too...(understatement of the year..)

13 POUNDS - 3 OZ

2011-07-07T18:34:00.000-07:00

Well..it's official..

I AM BACK ON THE GROWTH CHARTS!!

Yesterday, my big brother Zachary & mommy came with me to visit my Doctor and he is SO impressed with me because at our last visit, I wasn't even on the chart..

I weigh 13 pounds and 3 ounces...WAY bigger than I was at 3 pounds 14 ounces at birth.

My head has grown too and we all know what that means...brain growth!!

My parents are so excited!!

I got my 6 month shots - and of course I cried (secretly, so did my mommy. After all the needles I have had, she has a hard time watching me have any pain....but I'm tough.)

Well...today (day after my shots) I feel under the weather. I'm a little warm & feeling pretty cranky, so out comes the Tylenol.

My physical therapist came over today but I didn't feel very well, so I didn't perform all my stunts for her (tummy time, etc..)

I just need to sleep this off & then I'll be back to my happy self again.

Good night friends...

IT'S WHAT YOU MAKE OF YOUR JOURNEY...

2011-07-05T21:09:00.000-07:00

Happy Tuesday!!

My Physical Therapist reccomended a website to my mommy...www.rarechromo.org

This website has provided my mommy with some great information and even though there is no one "registered" who is exactly like "me" - she is grateful for the information...

Here is a fun story that they sent her..

Celebrating Holland, I’m home

Cathy Anthony writes:

Many readers will, at some time, have read "Welcome to Holland" by Emily Pearl Kingsley, who, as the founder of the USA Downs Syndrome Association, likened having a child with special needs to going on holiday and arriving in a different country to the

one you had planned to visit. Here Cathy Anthony, a parent, advocate and presently the executive director of the Family Support Institute in Vancouver, offers her follow-up to the original.

" I have been in Holland for over a decade now and it has become home.

I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty.

In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more, but this too, has been a journey of time. I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans changed, like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad!

I think that Holland is used to wayward travellers like me and grew to become a land of

hospitality, reaching out to welcome, assist and support newcomers.

Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging, and at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it home.

I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I am thankful, for this destination has been richer than I could have imagined!

I'M 7 MONTHS OLD!!

2011-07-05T20:16:00.000-07:00

Happy Independence Day Friends!!

How wonderful it is to be alive and living in such a beautiful country...

I am 7 months old...

WOW!! How time does fly...

AND..it was my "first" outing with my whole family..(I have been to the doctor and hospital several times before, but my parents don't count that because I am "covered" in my car seat and we are "in" and "out" as fast as we can...)

My mommy was very nervous, but I did great!!

We went to my Uncle and Auntie's home for a BBQ, cake for her birthday and of course..fireworks..

Let's just say that I am not a fan of fireworks...but is any baby really a "fan" of fireworks? I don't think so...

So, I spent the evening "inside" with my mommy, Auntie, brother and cousin..just "good ole' fashioned - - - visiting."

I slept REALLY well last night and I slept a TON today too...I think my "outing" wore me out..

My mommy had a little bit of a scare tonight..

I was laying on my back on the floor and all of a sudden I started to "Squirm" around I was obviously struggling to breathe...no air was coming "in" or "out" of me and I was moving all around...

Thank goodness my mommy was sitting right there and she grabbed me up so fast and turned me on my side...

I started to gasp for air and cry..

It appeared that I was having a hard time "managing" my saliva and this is what made me struggle..

It was pretty scary for my mommy...sure made her heart race, but...as always, I am A-OKAY!

She thinks that maybe I'm in the beginning stages of "teething" and I have "extra" saliva that I am not used to..

The binky helps me manage this saliva and suck it down so it doesn't "pool" around in my mouth and throat..

Thank goodness for the binky...

Thank you for all of your support..you guys are super good to my family and to me and I appreciate you!!

TUMMY TIME....FINALLY.....A SUCCESS!!

2011-07-04T10:59:00.000-07:00

I am SO excited!!

A good friend of my mommy's made me my VERY OWN g-tube protector for tummy time..

It has a hole in the front and it velcro's in the back...

I can now be on my tummy and my tube isn't being "mashed" into me..

I love this...it is hard work trying to hold this head up, but I am so excited to have be able to see the world from a different view without hurting anymore..

She owns a Quilt Shop in Hurricane, Utah.

Her saying is: "Friends are like fabric: you can never have enough."

This is SO TRUE!!

I am so blessed to have such good, caring people who always know exactly what I need..

THANK YOU MOMMY'S FRIEND!!

THANK YOU MOMMY'S FRIEND!!

http://www.youtube.com/watch?v=MOMUEYmBn6M

ANGEL UNAWARE - WRITTEN BY DALE EVANS ROGERS

2011-07-01T06:21:00.000-07:00

Today is a great day!!

I have been fighting "something" off the past new days, but I am feeling better...
My mommy's Auntie sent her a very special book called: Angel Unaware.

My mommy read this book and related to it a lot. (It's a pretty easy and fast read...you should check it out..)

One thing that stood out to my mommy in this book was how overly protective and paranoid she has been with me since I was born and more-so now that I am home.

I'm very smart & I can sense this.

I think my mommy knows that this is not healthy for me as a long-term practice & she realizes that this "over-protectiveness" attitude and frame of mind will hold me back.....

She is going to try really hard to "let go" a little and not be so "on guard" with me all day, every day.

I am doing so much better, and my mommy just needs to trust that I'm not going anywhere, but "forward" with huge progress..

This was a good book for my Auntie to send my mommy...Maybe my Auntie was really the Angel Unaware, right?

Thank you Auntie Hazel!! My mommy needed to read this book and you sent it at the perfect time!! As mommy says...everything happens as it should in EXACTLY the right time...

Life's little lessons...

HAPPY BABY

2011-07-01T06:10:00.000-07:00

After all that g-tube care, I am a happy baby!

http://www.youtube.com/watch?v=Diap9irzBKk

I'M HUNGRY..FOOD PLEASE!

2011-06-30T22:47:00.000-07:00

My parents are working with me on a bottle...slow but sure..

I don't "love" the bottle yet..

I "love" my binky, but I'm afraid of the bottle...

I'm just not sure what I am supposed to do with that stuff (formula) when it comes in my mouth..

We'll keep trying everyday, but for now..this is how we rollllllll......

http://www.youtube.com/watch?v=WHRPPViYXmM

G-TUBE CARE - PART TWO

2011-06-30T22:24:00.000-07:00

Here is the second half of our routine...

It was pretty overwhelming for my family at first, but now it's just sort of our "normal" day...

Thought you might want to check it out..

http://www.youtube.com/watch?v=QtCklWcwC7Y

G-TUBE CARE - PART ONE

2011-06-30T21:17:00.000-07:00

Hi Friends,

My family thought it might be fun for you to see our process....

http://www.youtube.com/watch?v=4A4Xf9aBLYc

It was a Miracle..Plain and Simple

2011-06-25T16:36:00.000-07:00

Hi Friends...

Today is Friday...

I got a visit from the eye-lady and she was in complete amazement at how I "looked" (great color and I've gained weight) and.how I "acted" (I was happy and loved to be interacted with.)

As my daddy says: "Stuff's gettin' better every day."

Here is a true story that really spoke to my parents and I wanted to share it with you...

About three years ago, there was a couple who had tried to have a third baby many times, but had not been successful and kept having miscarriages.

Well, they successfully were able to conceive again but the woman felt AND had signs that she was miscarrying again, so they went to the emergency room...

While there at the emergency room, they had an ultra-sound performed and found that the baby measured 5 weeks along, but there was no heartbeat...

The Doctor on call suggested that a D & C be performed as he didn't want the woman to get any sort of "infection."

They woman and her husband decided against the D & C at this point and went home..

These two people were convinced that they were supposed to have this baby..

They were so convinced, that they went "in" to their OB's office to have a second ultra-sound and came out with the same news, no growth (still measuring at 5 weeks) and still no heartbeat.

At this point, the medical world looked at these two people like the were delusional and they kept insisting that the woman get a D & C to remove the deceased baby.

However, they knew something different and they continued "on" in the faith that they would have this baby...

Over a period of 3 weeks had gone by since the first ultra-sound.

At this point, their OB Doctor was "very" insistent on removing the baby from the mother as to avoid any severe medical problems.

The husband and wife went back in to the Doctor's office and the husband insisted upon ONE more ultrasound before they performed the D & C.

The Doctor (in his own words) "humored" the couple.

Guess what folks

There was a baby in her belly that baby was ALIVE!!

That baby had a strong heartbeat!!

That baby had also grown!!

That baby was ALIVE!!

In the interview with the parents, the father said this in the most emphatically way possible: "I HAD A COVENANT WITH GOD AND HE HAD A COVENANT WITH ME. WE WERE GOING TO HAVE THIS BABY."

In the interview with the Doctor...all he could say was that it was a Miracle..plain and simple.

Faith: The substance of things hoped for...the evidence of things not seen.

Hmmm.....

It's time to get this party started....Break out the bottle....ZERO FEAR..

2011-06-25T16:28:00.000-07:00

Today is Thursday..

I am doing SO great!!

My parents are doing light therapy on me. They will take me into the bathroom and sit on a chair. They turn the lights ON and then they turn them OFF..over and over..getting my eyes to dilate and restrict, dilate and restrict.

My brother and sister have even gotten involved. Who ever said "family time" in the bathroom isn't fun? :)

My sister is a funny girl...

The other day, she went into the kitchen, took out a bottle, mixed the CORRECT proportion of formula to water and made me a bottle.

She started to feed it to me.

THEN....my mom found out and asked her (in a slightly panicked voice) "what are you doing?"

My sister said.."I'm feeding Ben. He passed the swallow study and it's time to feed him with a bottle."

Simple is simple for my sister. I "passed" my test and therefore, it's time to get this party started. Break out the bottle....

I CAN SWALLOW AND PROTECT MY AIRWAY!!

2011-06-22T20:26:00.000-07:00

Oh Happy Day!!

I had my swallow study today and they fed me a bottle while my parents watched it go "DOWN" the right place (on an imaging screen)...AND......NOTHING ran into my lungs!!

YEA!! I CAN SWALLOW AND PROTECT MY AIRWAY!!

So...this means that my parents can "safely" start trying to teach me to eat by mouth (suck a bottle.) I know that this sounds really "easy" - suck and move your tongue and swallow, but for me..it's been a struggle...

My family is SO excited!!

These g-tube days will be over as soon as I can get the hang of it and eat enough food by mouth that I continue to grow.

Once this happens, my parents can pull my g-tube out and and let the hole in my stomach "close up" all by itself (will be as small as a "pinhole" in a couple of days.) That will be a WONDERFUL DAY!!

Really EXCITING STUFF!!

My mom was introduced to a new book called: "How Smart Is Your Baby." This has some really "non-traditional" ideas in it, but remember...I am a "non-traditional" baby, so my mom and dad really like some of the ideas in it and are willing to check it out...(I guess having a baby like me makes them open up a bit.)

My parents still don't know what I "see" but this books gives them a really good thoughts..

"MAYBE" the "visual pathways" aren't working correctly...

It has some great ideas on "how" to stimulate those pathways, so they are trying a few with me...

Light being a big part of opening the pathways...

Purposely making my eyes dilate and constrict over and over and over...many times a day..

Only time will tell what is really going on, right..

I'm a mystery and I like to keep everyone "guessing" - it wouldn't be "normal" for me if I didn't. :)

Thank you to all my friends and family who "read" about me and send my family messages...they mean so much and they have really uplifted my mom when she needed it..

(She's used to being a "career" mom, so she wouldn't be telling the truth if she said it hasn't been an "adjustment." She's so thankful for me though and IS THANKFUL THAT SHE CAN BE WITH ME.)

Watching me develop is an absolute miracle..(and who says modern day miracles don't happen..they ABSOLUTELY DO!! :)

Loves to you all!!

I'M SIX MONTHS OLD & DOING GREAT!!

2011-06-16T11:51:00.000-07:00

Much has happened since my last post, so this one will be a little lengthy...

I want everyone to know how much I am improving each and every day...it's slow, but it is "sure."

My cute Aunties, my uncle & my cousin came for a short visit. It was so fun to meet them all for the first time.

Nana had to go home, and that was a very sad day around our house...Even our doggy Sammy was sad and is still moping around the house looking for his friend Nana...

My mom & dad are really busy trying to stay ahead & take care of me...I'm still pretty high maintenance & I do not ever like to be alone...(But...the camera monitor my Auntie gave me is so great for them!!)

My dad says I have "super sonic" hearing because I know instantly if I'm being left and I start to "crank"...(I think this super sonic hearing will come in pretty handy when I am older..)

Physical/Developmental Update:

I am growing..I weigh about 12 pounds
I am still eating specialized formula Elacare (thank goodness it's going through my tube because it smells & tastes awful)
My belly has stretched out & I can tolerate about 50-55 mils at a time now - which is great because I don't have to stay "hooked" up to my tube all day!! (WAY TO GO DAD FOR "ROCKING THE BOAT" AND PUSHING ME!!)
My reflux is minimal to almost none. However if I do have an "episode," it sounds pretty scary like gagging - but that Nissen surgery is doing its job & holding stuff "down" where it belongs.
I am still taking my Prevacid and Zantac everyday.
Some days I cat nap alot & some days I don't.
BUT....great news!! I am "sleeping" a longer stretch at night which is a huge improvement. (Since Nana has left, my mom & dad have a "schedule." Mom goes to bed "early" & dad stays up "late" with me. Then mom gets up with me as needed..sometimes thats minimal times & sometimes thats multiple times. I think they are both feeling pretty tired, but this is the way they've found it to work because...mom can't "go" to sleep with my since sometimes my loud, striderous breathing keeps her awake - she has a hard time disconnecting from me - and dad has experienced my mom when she doesn't get sleep...YIKES! It's not fun, so he figures staying up late "for the cause" is better than a sleep deprived mom. (I agree.)
My muscle tone is a funny thing...some days I am so strong & I appear to have the strength to "try" new things....but some days I just can't. My head/neck are still very floppy & very underdeveloped, but I'm making my own progress...it may be slow, but is sure progress!!
My "new" thing is so cool...I am "OK" if my parents put me "upright" on their shoulder. (I know this sounds like a "normal" thing for a parent to put their baby "up" on their shoulder in a burp position, BUT for me, it's a HUGE milestone because they never could hold me like that and have me be "okay" with it. (As long as they protect my g-tube, I can handle being like that for a few minutes.) It's pretty cool for them
My parents are sitting me up on their lap or on the couch - almost anywhere they can as much as I will let them. but my preferred position is still arched back as far as I can go....curled backwards in a "c" sort of position. I give their arms a workout for sure just to hold me.
My eyes are not looking "up" as much as the were, but this is something my parents really "wonder" about..can I see? What do I see? Some times they can get my eyes to "track" and I appear as though I can "see" what they are showing me...AND...this is so exciting for them! But other times, nothing can get my eyes to focus come "down" and if they put something towards my eyes really fast to see if I will blink or move away, it doesn't even "phase" me...like I don't see it. I do however, always "turn" towards the "light." We have an appointment at the eye Doctor next month to see if the can give us any hints as to what "may" be going on.
I have an appointment next Wednesday for another swallow study...they will have me drink a bottle & my parents will watch "where" the liquid goes on an x-ray. I "can" swallow. We just want to see "where" stuff is going when I swallow. If all goes down the right pipes, then, my parents will start working with me to learn how to take liquids by mouth...our goal is to get me off the feeding tube & eating normally (and I WILL..you just wait and see.) The one thing that makes it kind of difficult for me is that the "roof" of my mouth is VERY high (arched palate.) When I get a "taste" of something like on my binky, it takes a long time for me to "clear" it out. My parents think it is because my tongue doesn't reach the top of my mouth to help me swallow.
I am smiling SO much more now and I LOVE to be interacted with. Kissing is my favorite!! My family will make a "sound" with their voice and I do it back to them very softly. They like it so much!
My breathing is still pretty noisy and I breath really fast at times too...sort of like I just exercised. but..there are times, I am very quiet..it just depends on my position. (My parents think that this is why I like to be "back" as far as I can...to open my airway and breathe better.)
My cry is still soft, but it is louder than it was a few months back. This tells my parents that my throat is starting to heal from all the acid burns. They don't know if there is any permanent damage, we will just have to wait and see. (My dad always jokes that he had to "pay extra" for the "squeaky toy" to be installed in me AND for my cry to be "quiet." He always finds the positive in any situation, doesn't he?)
My mom is still pretty protective of me and she hasn't taken me on any of her errands yet. She has tried several times to take me on a stroller ride outside, but it has never been successful UNTIL last night...we went 30 minutes and I didn't get cranky until the end...this was SO great for my family.
My g-tube looks A+++. My mom still cleans it everyday to check on it, but it doesn't hurt me anymore. It's weird for her to say this, but...it's just getting part of her normal routine. She has finally just "bit the bullet" and "cuts" into my clothes so my tube can poke through...(she was having a hard time doing this before but there are only so many PJ outfits a baby can wear...sometimes it's time to get "real" clothes - even if I do stay home all day, right?)
My binky is still my best friend and my parents are still looking for a safe way to help me hold it "in" - (they've tried all sorts of weird, home made things.)

Well friends..thank you for continuing my journey with me..

Each and every day we are so grateful for this life we have been blessed with...it's certainly a detour from the road my parents thought they would be on when they found out they would have another baby, but who says a "detour" wasn't where you should have been in the first place.

Blessings!!

Love Benjamin

DAY OF LIFE 180

2011-06-02T20:52:00.000-07:00

Today is Thursday...

I had a very restless night and I had a hard morning...

I make the sound of wretching gagging...kind of like when you have the bad dry heaves but nothing can come up...

This scares my mommy because the sound is not pretty...this darned reflux...

BUT....it's WAYYY better than it was before though, so I can handle it...

Today my mommy and daddy went to a funeral of a good friend and a good man...I spent time with Nana, my brother and sister..(I will sure miss my Nana when she goes home...we have so much fun together!)

I got an awesome present today...A VIDEO BABY MONITOR!! Thanks to my Auntie and Uncle...it is SO COOL!!!

As the day went on, I got feeling WAYYYY better, but then tonight, it got hard again and I cried and cried and cried..

Noone is sure why I am so upset...but I guess all babies go through being upset...something about "purple crying" - anyway...they gave my mom a video about it...(she's still pretty paranoid about me being in pain, so she's not sure if it's "pain" or "purple crying."

Daddy has me tonight and mommy is going to bed early because she was up with me last night and that's okay!!

Each and EVERY day is like an theme park adventure and my family is thankful for every minute...

DAY OF LIFE 179

2011-06-01T21:28:00.000-07:00

Well...much has happened over the past few days and we are so excited!!

My daddy REALLY ROCKED the boat and decided to buy me bottles with slow flow nipples. Well...needless to say I felt like I was choking and sounded like it too, so mommy couldn't watch. Great news is...I did swallow though..

Mommy is very nervous because we've had a swallow study done and I didn't do very well a few months ago because I let the liquid run into my lungs, so we've been very leery about letting me drink stuff AND I don't seem to know how to handle it...I make a loud choking/can't get enough air sound.

I did sleep VERY well after my "feeding" incident. I think I wore myself out.

I am very interactive with my family and I am smiling more and more each day.

I like to be on my side and I haven't quite gotten the whole "roll over" thing, but I'll get there.

Tummy time is still not my favorite either, but mommy says it's good for me (I already don't like those words.)

We've had company and we are getting more this weekend. My Aunties are coming to take my Nana home for good. She will have been living with us for 6 months....YIKES!! That is a long time and we will all miss her very much..she has been a BEYOND WORDS BLESSING to our family and we love her so much!!

Sleep is still kind of a hit and miss...some nights are great and others just aren't...but I think that this is just the way it is....

Thank you for all your prayers and love!!

DAY OF LIFE 174

2011-05-27T22:26:00.000-07:00

Today is Friday and it has been over a week since my last update...

You know the old saying...NO NEWS IS GOOD NEWS?

Well, that is the case indeed!! (AND....If the truth be told, my Nana went on "vacation," and my mommy and daddy were SO busy taking care of me and regular life that they didn't have time to do regular updates. They have gotten so used to having Nana's help, but she will go home for good on 6/6/2011 - VERY SAD FOR US, BUT HAPPY FOR GRANDPA.)
I really am doing better everyday...I am having MORE good days than BAD days and this is a good thing...

It's a preemie step process, but I am working hard and I don't act like I am in as much pain as I have been in the past (haven't had any ibuprofen OR tylenol since my last post..YEA!!)

I still keep everyone pretty busy and I still have someone with me almost round the clock. Some "nights" are better than others and I still do this strange sort of "thrashing" movement that no one knows about...

BUT..we are so so so so thankful...so thankful to be home and alive!!

I have found my hands...my mommy & daddy were so happy to see me put my hands in my mouth because before I was not having any "deliberate" hand movements...I would just look "up" and have my hands "down" by my side, so This is a HUGE step.....

My eyes are improving too...

My family still doesn't know "what" I see...

Some days they think I can't see very well based on my behavior, but other days, my eyes come "down" and I seem to "follow" things...(those days are very exciting!!)

In the past week, my surgeon's office visited me and they were SO impressed with my tube...My g-tube is totally healed...(mommy still changes the dressing out every day to keep it dry.) They saw me swallow and suggested that my family give me "tastes" as I guess sometimes babies with a tube lose interest in eating by mouth..BUT..In the near future, they suggested that I get another "swallow" study done to see "where" stuff goes when I swallow.

This is new...My family is putting me "upright" on their shoulder sometimes and for a few seconds, I seem to be okay with it (which is a HUGE improvement because I have NEVER - EVER liked anything touching my belly - even before the feeding tube.)

Tummy time is still a challenge though...my neck muscles are very weak, but I am trying hard to lift my head...my family keeps working with me and my g-tube doesn't seem to be bothering me (although my parents NEVER put me directly on it..I am always propped up so the tube doesn't have pressure on it.

My breathing is still very noisy on some days and I sound like I am gasping for air...my "position" can change the noise or how "hard" I am working or "not" - so my favorite position is to be bent BACK as FAR as I can (and boy am I STRONG when I bend backwards - THOSE BENDING BACKWARDS MUSCLES ARE VERY DEVELOPED....my my parents' arms get a workout and the ONLY thing that gets me out of this STIFF position is my binky. I love my binky!) :)

My mommy had a developmental Doctor appointment today that she cancelled because she just couldn't bare to hear how "behind" I am..(not really sure if they would have "said" that to her or not, but many other people have said this. I have several people that visit me and they give my mommy good "tips," but their "assessments" say that I am NOT developed like other kids my age...I guess that what happens when a person spends a long time in the hospital...they get a little behind...)

BUT..again, we are looking at the WHOLE PICTURE and in the WHOLE PICTURE, I have come so far, and I will develop at my own "pace"...and as the title of this blog says: BENWRITESHISOWNSTORY, right?

The pace is a little slower in Holland anyway and this is just fine!!

We are so grateful for where we are...Each day is a gift...a "present" indeed!!

DAY OF LIFE 165

2011-05-18T21:49:00.000-07:00

Happy Wednesday!!

Today I experienced my very first shower..

Well...let's just say that I didn't "love" it - I guess for that matter, I didn't even "like" it...

But...everyone has to experience their first shower, right?

It was another fantastic day for me...

G-Tube looks the best it ever has...

Minimal reflux.

I love to be held and walked around the house...

I love interaction..

Now, my mommy has to get brave and get me on my tummy more...she will bite the bullet and go for it tomorrow...

We are feeling pretty good about life and our blessings...

I got a new cousin tonight and my parents went to see her at the hospital. It brought back a lot of really fresh memories for my mommy and she tried not to tear up.

She is just so thankful that I am home and doing so well...

I think this experience has left quite the impression on her...

My sister is still feeling pretty icky, but we hope she will be better soon..

These cold germs need to get out of this house...

My brother is a genius...he is so smart in school and he got the lead part in the school play...

I am so proud of him!

Our family is feeling our "new" normal and it feels pretty good...

We have an awesome life and have been blessed beyond words...

DAY OF LIFE 164

2011-05-18T21:42:00.000-07:00

Today is Tuesday...

My sister is home sick today with this darned cold and cough that I've been fighting. My mommy is pumping the vitamin C into her by the load and making her drink water by the ton.

I still feel a little like I may have it, but it is not full blown like hers, and we are thankful!

I am doing so well..

My mommy made the comment today that I am just like the normal baby that she prayed for...

I can be awake without crying.

I am smiling.

I am starting to briefly "track" items with my eyes.

I have found that I have hands, but I'm not into putting them towards my mouth yet.

The only thing I want in my mouth is my binky.

My parents tried to feed me some really watered down rice cereal tonight, but I acted like I was choking and couldn't breathe, so we didn't get very far with that...(but daddy says "we'll keep trying.")

Overall, today was terrific!!

My family is so grateful...

DAY OF LIFE 163

2011-05-16T21:10:00.000-07:00

Today is Monday and I had all of my monthly Visitors come today (OT & PT & Case Manager),,,

I didn't sleep very well again last night, but I am feeling better.

I performed so well for the OT. She was so impressed with my abilities and she was so positive about my life and what it will look like. My mommy REALLY appreciated her upbeat attitude and encouraging words about me.

I was so tired from all the playing, so unfortunately I fell asleep for the PT, but next time I will show her how strong I am getting..

I am doing so much better with my eyes...

They still go "up" some, but not as much as they were before...

I am looking at the world now and I kind of like it...(so does my family)

My cold is starting to go away, so today was a pretty good day!!

We'll take all the good days we can...feeling very grateful for each and every single one of them...

DAY OF LIFE 162

2011-05-16T21:03:00.000-07:00

Happy Sunday..

It is a happy day because I am home with my family...

Unfortunately, I did not sleep again last night..I had a very hard time breathing because of this cold...

My parents had to suction me out a couple of times, but it didn't help...just made me mad & I cried and got even more "stuffy"...it's a pretty vicious cycle..

My airway is pretty small already, and a cold makes it harder to breathe...

This worries my parents, but I keep working through it...

Thank goodness for the nebulizer, tylenol & ibuprofen...

On another note...my reflux has almost stopped all together...

I can lay totally flat for long periods of time and I am not bothered by this at all...

My parents can play with my legs and I don't seem to "wretch" when there is pressure on my tummy..

Over all, I am making such great progress...

We are thankful for each little milestone...

DAY OF LIFE 161

2011-05-16T20:58:00.000-07:00

Today is Saturday..

I didn't sleep at all last night and my mommy is very tired..

She is so thankful that Nana is still here to help out so she could get a couple hours of sleep because Daddy is super busy with work (which is great) but he was gone most of the day..

My sister is feeling better, but I am not..I have this darned cold..

BUT...Everyone else is staying well and we are glad about that!

Lots of rest today and I hope to feel better tomorrow..

DAY OF LIFE 160

2011-05-16T20:54:00.000-07:00

Today is Friday...

There is still this darned cold around our house..

My sister has a pretty bad cough, and I am starting to pick it up too..

My parents aren't sure "why" - but I seem to catch things really easily, despite their efforts to keep me away from stuff..

Thank goodness Nana is still here so she can give my mommy and daddy a break..

We are going to be sad when she has to go home..maybe we can talk Grandpa into moving closer (ha ha)

I am pretty interested in my mobile, which is a huge improvement from my "typical" looking up pattern..

It's fun for my parents to see me "look" at something purposefully...

Making progress every single day..WE ARE SO BLESSED!!

DAY OF LIFE 159

2011-05-16T20:49:00.000-07:00

Today is Thursday and I am a totally different baby than I was when I came home from the hospital.

I am loving being "awake" and "moving" around the house.

My belly is stretching and I am able to take more food at one time so my parents are letting the food build up in my murphy drip and then letting it drain into my tube at a faster rate.

They tried to feed me some apple sauce today on my binky, but I acted like I was choking, so they decided to back off of that for a few days.

One thing at a time...

Super grateful for my life!!

DAY OF LIFE 158

2011-05-16T20:44:00.000-07:00

Happy Wednesday...

I am starting to feel better and it is obvious..

I slept a little better last night & I had a great day today..

I was in such a terrific mood all day long.

So thankful for days like today!!

DAY OF LIFE 157

2011-05-10T22:04:00.000-07:00

Today is Tuesday...

Still feeling kind of rough...this cold makes me feel kind of crummy...

Strange weather for our part of the country today...rainy & cold..

The eye developmental lady came today and played with me..

She couldn't get me to focus on anything and she pulled out all of her tricks too...

I just like to look up alot and no one is quite sure what I am looking at...

She recommended taking me to a specialist, so my parents made an appointment for July...

Hopefully they will be able to tell them once & for all if there is anything going on that should be dealt with..

I am sure a mystery, but by now, that should be NO surprise, right?

I like to keep everyone on their toes and guessing too...

By doing this, I have actually gotten people to fall to their knees and I know the Lord likes hearing from them..

So I guess my "mystery" life is a blessing in disguise, huh?

DAY OF LIFE 156

2011-05-09T20:55:00.000-07:00

Today was Monday and boy were we all tired from our "running" weekend activities..

It was hard to get out of bed for everyone...including Nana and she is always the first person up..

My cold is now full blown and I am coughing and feeling really crummy again...I cry a lot when I don't feel well..

We are not sure "how" I caught it AGAIN, but I did and now I'm paying for it..

My immune system is really weak & I catch things very easily...

Thank goodness that my mommy can stay home and rest with me today as she wasn't feeling 100% either...

Lots of Vitamin C and water is the remedy my mommy will try to "kick" it before it "blossoms" any further..

Nana is still here and we are so grateful...

Daddy had a busy day full of working and then going to his brother's birthday party...

Thank goodness we are all home now and we are off to bed early (my daddy will hang out with me until it's time to go to bed so everyone else can go first.)

What a nice daddy I have...

I am super blessed for sure!!!

DAY OF LIFE 155

2011-05-08T19:48:00.000-07:00

Oh Happy Day!!

Today is Sunday...MOTHER'S DAY!!

I still am having a slightly hard time sleeping, but I think it's because I am still not feeling 100% from the cold I caught...BUT, I am definitely on the upswing of things...

My mommy's family left to go home today, but Nana stayed here with us (thank goodness!)

It was so fun to see them and I know they love me very much...

Today, (as it is each and every day) was a day of reflection and thanksgiving..

The small things are such a blessing...I can breathe...I can smile...I can move my arms and legs...I can be held...I AM LOVED...

To be ALIVE is such a precious gift..

Keeping the faith...

DAY OF LIFE 154

2011-05-08T19:30:00.000-07:00

Today is Saturday...

I got updated pictures taken today by my Auntie who is a talented photographer...

My mommy and Nana had a great time playing "dress up" withe me too..

I'm still feeling a touch of a cold...I've got a cough and my nose is stuffy..

This will be another day of running for my family..

My daddy is gone all day as he is the "photographer/supporter" for my Uncle who is doing the Ironman today. My Uncle is a committed athlete...he's amazing!

My mommy worked at the model home for a few hours while I hung out with my family from out of town..they love me so much..

Mornings are still hard for me...I squirm a lot..

No one really knows why I am so squirmy...

Am I hungry?

Am I in pain?

It's hard to know..

I am still on a "continuous" feed, but my mommy has increased my amount a little per hour to see "how" I tolerate it and I am doing really good..

In fact, my daddy has been "experimenting" to see how "much" my belly can hold and he has been putting more in (bolus) my tube at one time..I seem to be doing fine so far...

I guess that my mommy is more conservative than my daddy is when it comes to "trying" new things with my food because my mommy likes to rock my boat very slowly...

My daddy wants me "off" of this continuous feed soon because he wants to take our family on a vacation this summer and it will be better if I can be "unhooked" from my pump for a little while..

Trying new things with me is how we will see "what" I can handle..

I am thankful to have people who love me and will "rock my boat" for me too. :)

Moving forward - step by step - every single day...

Blessed beyond words...

DAY OF LIFE 153

2011-05-08T19:07:00.000-07:00

Today is Friday..

I didn't sleep very well last night, so I am tired and so are my mommy and daddy...

It's a BIG day - full of "running" for my family...

My mommy went back to work today for a little while at my daddy & Uncle's model home. My Nana watched me. I love my Nana..she take such great care of me and we are all so glad she is still here with us.

My big brother's "actual" birthday was back in February, but because I was at the bigger hospital and my mommy was out of town with me for so long, my brother had to "postpone" his birthday party.

So...we celebrated it today....

Since my parents are still pretty protective of me, I am not able to go, and my daddy will stay home with me while my mommy, Nana, Grandpa, Uncle, Auntie, cousins and all TWENTY-FIVE of my brother's friends have his party at the swimming pool.

Next year, I will be better and I can go too.

After the birthday party, my other Uncle (dad's brother) and Auntie came to watch me so my "whole" family could go to the Ironman Kids Fun Run because my sister and my cousin were running the 1 mile.

My family was glad to have the opportunity to be "together" to watch this event and they were thankful to have someone stay with me too!!

It was a good day..full of running from one place to the next...

What blessings we have!!!

Keeping the faith...

DAY OF LIFE 152

2011-05-08T18:49:00.000-07:00

Today is Thursday...

I spent quite a bit of time with my Nana today..

I had my moments where I was hurting, and thank goodness for my binky because that is the one thing that will always help me feel better...

BUT...

I "overall" seem to be feeling better and better...

I was able to meet my cousins (my mom's brother's kids) for the first time tonight...they have only seen pictures of me because they were not allowed in the hospital..

They already love me and my Auntie does too..

I am so fortunate to have such a loving family who is happy to have me here...

Feeling so thankful!!

DAY OF LIFE 151

2011-05-04T21:26:00.000-07:00

Today is Wednesday..

I had THE BEST DAY!!

I rested well and I was awake well too!!

It is totally obvious when I feel better and my family is feeling so happy!!

My brother is home today from school because of his eye, so he spent a lot of time with me.

What a terrific day!!

YEA!!!

DAY OF LIFE 150

2011-05-04T21:23:00.000-07:00

Today is Tuesday...

It was a hard day..

I refluxed more today than I have in a few days & I cried a lot...

My cry is still pretty silent and I sound pretty sad...

I guess we all have hard days..

But..I'll take these "hard" days any day of the week..

My brother got sent home from school today because he got hit in the eye with a flying disc of sorts and his eye started to bleed..

The eye doctor said that the "structure" of his eye was not damaged...THANK GOODNESS!!

We are all very blessed!!

DAY OF LIFE 149

2011-05-04T21:14:00.000-07:00

Today is Monday and the home health care nurse came to visit me..

I officially weigh: 9 pounds and 5 ounces!!

I am a big boy from the 3 pounds 14 ounces I once was..

My mommy is going to increase my food today and see how I do..

I am doing so good...super grateful!!

DAY OF LIFE 148

2011-05-04T21:07:00.000-07:00

Today is Sunday..

It was "boys day in."

Zachary and my daddy spent time with me today so my mommy, sister and Nana went to church, hiking and to lunch too.

Reflux was at a minimum today and I am SO SO thankful!!

DAY OF LIFE 147

2011-05-04T21:03:00.000-07:00

Today is Saturday..

It was a day full of spending time with my family...

I'm starting to feel better and reflux is minimal..

Feeling pretty grateful that life is so great!!

DAY OF LIFE 146

2011-04-30T21:35:00.000-07:00

Today is Friday...

Overall, it was a pretty low-key day...

I am not as refluxy today as I have been - which is a good thing...

Feeling super thankful to be alive!!

DAY OF LIFE 145

2011-04-28T22:31:00.000-07:00

Today is Thursday...

I had a pretty good day..

I still have this danged cold, but it's not as bad as it was a few days ago..

Today, the Physical Therapist came to visit me and "tested" me..

She thinks that my neck strength is very much like an "new born" baby's would be, but the lower half of my body muscle (legs, etc..) are very strong and tight..

I am a mystery for sure..

My "translocation" has everyone "wondering" what life holds for me...

She gave my mommy and daddy some great information on "how" to help me develop to my full capacity...

I was doing really well on my non-refluxing, but after she left, I started to "wretch" some..I think some of the movement "moves" things around in me, and I can't help but reflux..

I had quite a bit of "older" blood in my g-tube today too..

My mommy & daddy know that I am bleeding "somewhere" in my body, but don't know "where" and they don't want to take me back to the hospital for more testing...

They wonder if I could have bleeding ulcers?

They will talk to my Doctor again about this, but thank goodness my Doctor is "conservative" when it comes to testing..

I had my first FULL submersion bath today (since my g-tube surgery.) All of my other baths have been sponge baths because we had to wait 2 months for it to heal.

I didn't like it..not one little bit..

It's kind of a bummer too because I used to LOVE baths, before the g-tube went in...

Overall, it's been a great day and I am so thankful to be alive and growing!!

I am very blessed indeed!!

DAY OF LIFE 144

2011-04-28T22:23:00.000-07:00

What a difference 24 hours makes!

My g-tube has QUIT leaking..my mommy & daddy were able to fix it withOUT taking me into the Doctor..this is great!!

I still have a cold, but I am starting to get better...

AND..

My reflux, wretching motions are almost non-existent...

This is a great thing for my mommy & daddy to see!

I spent a lot of time with my Nana today as my mommy and daddy had work they had to do...

Overall...it was a great day!!

DAY OF LIFE 143

2011-04-27T21:24:00.000-07:00

Today is Tuesday and I cried a lot of the night.

My daddy awoke to find me super COLD and saw that my g-tube was leaking a lot of liquid out of it and I was soaked from the formula.

This meant the day started crazy because my daddy has a meeting and my brother and sister have to get ready for school and I had to be fixed so I would quit "leaking" and WE ARE SO THANKFUL THAT NANA IS STILL HERE..she is so helpful and saves our bacon every day..

My mommy fixed my tube but didn't fix it good enough because I ended up getting soaked 3 more times today. It's really important that they NOT leave this on my skin because it is "formula" but it has "stomach acid" in it too, so it can eat my skin if it's not cleaned off right away.

For some reason, she would pull the water OUT of the inner balloon and put more back IN, but it wasn't "holding" the tube in tight enough to stop the leaking.

So..she called her new best friends (my Doctor's office) and they suggested to do what she had already done and then bring me in tomorrow.

So, she tried it one more time tonight & prays that it works..I have to eat and if it's all leaking "out" then, I am hungry and she is constantly cleaning, taping, un-taping, re-taping..(well, you get the idea..)

She is very thankful for the g-tube class that the bigger hospital offered her while I was there..this was very helpful..

I am also still thankful for tylenol and ibuprofen..

These help me rest and get better..

My mommy had a crying melt-down tonight on my daddy because I keep her very busy..sometimes she feels a little overwhelmed and just needs to let it out..

Thank goodness that my daddy is a patient guy..he is a good daddy...

We are all keeping the faith for my total wellness..every single day...

DAY OF LIFE 142

2011-04-27T21:15:00.000-07:00

Today is Monday.

I had a very hard night & I struggled to breathe all night long.

My mommy was concerned because I had a bluish tint around my mouth and I was breathing "in" and "out" like I had just ran a marathon.

I was also still coughing a hoarse "dog" bark cough.

So...we went to see my Doctor.

(I almost wonder if my Doctor thinks my mommy is HYPER-SENSITIVE and worries too much, but she would rather be safe than sorry.)

It took about 40 minutes to get me packed up and ready to go and then when we got to the Doctor's office, I was calm.

The tylenol kicked in and I wasn't breathing fast anymore.

My mommy couldn't believe it as I had struggled ALL NIGHT LONG and now a trip to the Doctor's office has cured me.

The Doctor did listen to me and heard "airway" congestion NOT "lung" congestion. I always have airway problems, and the Doctor said my "cold" didn't help me breathing issues, so he prescribed a steroid.

He's a good Doctor and he has quickly become a good resource for my mommy & daddy.

So thankful that I have good medical people taking care of me..

I am also thankful for tylenol AND ibuprofen too!!

DAY OF LIFE 141

2011-04-27T19:37:00.000-07:00

Today is EASTER Sunday.

What a beautiful day outside,

My mommy and my daddy didn't get one ounce of sleep last night because I was so sick.

I had to be suctioned out several times. Thank goodness for this hospital grade suction machine.

I was very unhappy & cried most of the night.

My mommy & Nana missed the early morning service because my mommy was so tired...but, they were able to go in the evening.

We had an Easter Egg hunt while I slept.

My brother & sister had fun!!

My Aunt & Uncle came for dinner.

Even though I didn't feel very good, the fact that I am alive & home is a total miracle & blessing.

My family is so grateful.

DAY OF LIFE 140

2011-04-27T19:29:00.000-07:00

Today is Saturday and I officially have my first cold since I left the hospital.

My family has been so careful with me - making sure to wash their hands all of the time & I haven't had many visitors.

Now I really don't feel well.

I am still refluxing and now I am coughing "croupy" like & I am very stuffy too. I already have a small airway that makes breathing hard, but it's extra hard

My mommy & daddy are doing everything they can to help me be comfortable (tylenol, humidifier, nebulizer, axid, prevacid, miralax, suction machine, nose drops, boppy pillow, feeding machine, murphy drip...whew!!

At least I am at HOME and I love this!!

Super thankful!!

DAY OF LIFE 139

2011-04-22T23:06:00.000-07:00

Today is Friday...

My brother and sister were "off" from school today and they spent quite a bit of time with me.

I like my new pak & play because I can be "wheeled" to be with my family in every room in the house very easily with my feeding machine..

My mommy had a meeting at work today and then her and my Nana went to the Quilt Guild & saw some beautiful quilts made by very talented people...

My daddy hung out with me and I like that..

My brother and sister got to dye eggs tonight too & they had fun with my mommy and Nana and daddy went to "scout" for turkey's...

I am still pretty uncomfortable..

I cried and squirmed a lot today, so my mommy called the bigger hospital where I had my surgeries & they suggested that she withdraw "1 cc" of water out of my g-tube (my mommy had put 5 cc's in last night after it started to leak formula, and "5 cc's" may have made my belly too "full." They said that that the ONE extra cc of pressure might be causing me some pain in my belly. It's hard to know if this is why I am so cranky, but it's worth a shot taking some water out to see if this helped. It's also hard to believe that "1 cc" of water could make that much of a difference.)

Taking that "small" amount out did seem to help, but only a little. I act like I am in pain most times I am awake. I arch back as far as I can go and I get as "stiff" as a board. The only thing that makes me get "out" of this extension position is a binky.

My family is very thankful that I have "something" that can soothe me.

A few other observations from my family are that I am still looking "up" quite a bit, I startle very easily if something touches my eye(s) and/or mouth & I have an "interesting" jerking motion like I am trying to jump "up" out of my bed - but then when my family tries to "sit" me up, I cry & "extend" my body backwards as far as I can until they lay me back down and will "miss" a couple breath's and then I act like I am choking on my own saliva when I start breathing again.

My mommy "questions" if what she is "seeing" with me is indeed something to be concerned about OR if she is just hyper-sensitive to my behavior because she spent so much time in the hospital with me and there has been so much "concern" and "uncertainty" with me since I was born.

She second guess' herself everyday..

I am "writing my own story" for sure AND we are all so thankful that I am HOME and able to write this magnificent story!!

Keeping the faith...

DAY OF LIFE 138

2011-04-21T22:53:00.000-07:00

Today is Thursday...

I am excited because I got a Pak & Play and now this means that I can have the best of both worlds..

MY BOPPY and a bed on wheels so I can be with the rest of the family...

This was a great purchase!!

My mommy was able to go to a luncheon with her special friends from Leadership Dixie. She was glad to see them.

My Nana is so nice to me. She stayed with me and held me.

She wishes I could get comfortable, but I just have a hard time...noone can really pinpoint "why" I am so cranky..I just act like I don't feel very good most of the time...

My mommy just keeps hoping I will grow out of this..and because I'm a pretty tough kiddo, I will..I just need time...

Later this afternoon, my mommy noticed that my clothes were wet around my g-tube. So, she cleaned my tube area up, retaped it and changed my clothes.

About 40 minutes later, she noticed that my new pair of clothes was wet in the same place and when she opened my snap jammies, she saw that the tape (she just put on) was soaked and so was the front of my diaper.

YUCK...stomach content is leaking out..

My mommy needed to get this off of my skin right away because this stomach content can eat my skin if it's left on there..

She wasn't sure "what" is going on...because, a small amount of leakage is normal, but this is more than my mommy had seen before..

She cleaned me up and changed out my clothes again.

This time, she called the doctor's office and was told she had 2 choices...1) Come into the night clinic and be seen OR..2) Stop feeding me until tomorrow and then come see my own doctor.

My mommy was a little surprised that they suggested to stop feeding me because I am on a continuous feeding schedule..(so, this was not an option.)

My mommy pulled out her "book" that she received at the bigger hospital, and started to read about what may be the problem..

At this point, my clothes were again wet and all the "new" tape was coming loose because of the stomach content leaking out..

So, my mommy asked my Nana to help her by holding the tube in place very sturdy and hard while she withdrew the water out of the balloon to see "how" much water was in there...sure enough, it was on the small side and needed more water..

Sometimes "IF" the balloon has leaked water out, then the hole isn't getting plugged very well, and stomach content can leak out..this is what happened to me...

This was very stressful for my mommy because she had only "practiced" this procedure on an example...to do this on a real, live, moving target (me) is a little different for sure..

Her and my Nana worked up a "stress sweat."

BUT..

We got it taken care of and I slept the whole time...

My mommy taped me all back up and the "stuff" is staying "inside" my stomach now..this is where it belongs..

What a great learning experience for my mommy and Nana and I am the perfect person to "practice
on...

My brother and sister have the next 4 days off of school for Easter break and I am happy that we can spend time together.

I am so lucky...

I am so blessed...

My life is a good life...

DAY OF LIFE 137

2011-04-21T22:26:00.000-07:00

Today is Wednesday...

I'm still pretty squirmy at times, and I reflux. It get's kind of stuck at the base of my throat and then I make a weird choking sound while I try and catch my breath...

My mommy and Nana watch me do this and just want to "help" me in some way, but I just have to do this on my own...

I spent a lot of time with Nana today because my mommy and daddy were asked to go to a hospital event to talk about my story. The hospital is going to expand the NICU and it will cost around $500,000 for this change, so this event was to "introduce" this change and the benefits it will have for families.. (TOTALLY WORTH IT.)

It was a special day and my parents felt pretty emotional and passionate about my experience and towards the people that helped me..

This experience has changed my family's life forever and there aren't words to explain their sincere gratitude to this organization...

I guess that life has a funny way of showing a new perspective on "what" is "really" important, right?

My brother and sister had a pretty good day too...they spent time with our good friends from SLC. It was good for them to go have some fun...I can't wait until I can go to the swimming pool with them...

Maybe in the Summer...

One step at a time...this is great advice that my Nana gives us (she's a pretty smart lady.)

DAY OF LIFE 136

2011-04-21T22:09:00.000-07:00

Happy Tuesday!!

I had a pretty crazy day...

It took my mommy about 45 minutes to get me ready and then into the car to go to the doctor..

I do NOT like the car or my car seat..THANK GOODNESS Nana is still here..It's a chore getting a newborn OUT the door anyway, but it's an extra chore getting me out the door with all my stuff (feeding machine, packed into a back-pack, accompanied by a murphy drip trying to keep it from spilling too and my diaper bag with all my "emergency" g-tube stuff that has to be with me all of the time.

My mommy worked up a sweat getting me out the door...

Today was my doctor appointment and I got shots...OUCH!!

It was time for my 4 month shots and I needed a Synagis to help me "try" and avoid RSV..it would not be a good thing if I were to get this...

I got 4 shots (2 in each leg)..OUCH!! OUCH!! OUCH!! OUCH!!

It was hard for my mommy to watch them poke me..(Brought back some memories that she wanted to forget..)

My mommy got a call from the Pharmacist today and he was so apologetic about my "overdose" mistake..

He assured her that he has put in place some more "checks and balances" so this won't happen again to someone else...

He really wanted my mommy to get some testing done on my liver and kidney's but both her and my daddy decided not to.

The pharmacist is a pretty nice guy and since I didn't get sick, my mommy was just grateful that we caught it when we did..

So many things to be grateful for, right? :)

Taking it one day at a time...Life is good...

DAY OF LIFE 135 - Welcome To Holland

2011-04-18T21:08:00.000-07:00

Today is Monday...

I had a really good day..a really good day...I rested a lot!

My mommy and daddy visited the local NICU today and my mommy left with a lot of unexplainable emotion..

My family was WAY ready for Chapter 1 of my book to end, but sometimes it's hard for my mommy to put this all into words...

She left feeling REALLY happy and relieved that I wasn't at the hospital anymore..and that she wouldn't ever have to pick up the phone to "call in" to see me..

BUT..

She also left feeling kind of sad and a little empty too...she knew that ending Chapter 1 meant that she wouldn't see her good friends very much anymore..these awesome, dedicated people spent one of the most stressful times of life with her and she feels super attached to them...they gave her so much support with me and totally understood what was going on..

She's feeling a little overwhelmed that now she will need to "call" a totally different group of people if I need help and she knows that Nana will be going home soon (unless we can talk Grandpa into getting a home down here - hint, hint) too & she will miss her...

It was just a day of unexplainable emotion..happy, sad and all of the above..(it must be a mommy thing...it's a good thing that I had a "good" day, right?)

She was reminded today of a story that she once heard in the NICU parent hour and then again from her good friend....

Welcome to Holland!! What a beautiful place to be!!

WELCOME TO HOLLAND

by
Emily Perl 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 stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you 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 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 never have 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 had 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 ... about Holland.

DAY OF LIFE 134

2011-04-17T21:47:00.000-07:00

Today is Sunday...

I slept pretty good last night and my mommy was only up a "few" times..

My daddy took me again for a lot of the day so my mommy could spend some time with my brother and sister & Nana...

I am pretty stationary on my boppy pillow and my feeding machine, so whomever is watching me is pretty "stationary" with me.

Unfortunately, I don't like much movement, so the stroller is out...the swing and bouncy chair only make me happy for a few minutes...

It was another "boys" day and it was a pretty good day at that...

Had "some" reflux but, overall, it was a better day than yesterday...

So thankful for a "better" day...

We are so blessed and have so much to celebrate!!

DAY OF LIFE 133

2011-04-17T21:38:00.000-07:00

Today is Saturday...

My mommy kind of had a melt down today so my daddy hung with me to give my mommy a break from my cares...I am a full time job.

I had reflux for a lot of the day, but my daddy tried to help me the best that he could..

It was a "boys" day..

I am so thankful to be out of the hospital!!

We're all keeping the faith for my total wellness...

DAY OF LIFE 132

2011-04-15T22:24:00.000-07:00

Today is Friday..

Had a really fussy day at one end of the house and my brother had a fussy day at the other end as he's fighting a cold. My mommy needs to keep us apart so I stay well..

This has been a tough cold season for my brother and sister..

My daddy drew out for a turkey permit, so he went "scouting" for his big hunt tomorrow...

We also had a little of a scare today because my mommy went to give me my medication for my reflux (Axid) and noticed that the dosage was "different" on the "new" prescription refill than what she had been giving me before..

The "new" bottle said I was supposed to get .5 "ml" but my mommy had been giving me 1/2 "teaspoon" because that is what the last prescription bottle said..

So, she called the pharmacy & the pharmacist admitted that the dosage was typed WRONG on the last prescription bottle.

He was concerned & told my mommy that he needed to do some "research" & would call her back.

My mommy called poison control & found out that she had been overdosing me...giving me 5x the dosage that I should have been getting E-V-E-R-Y single day since 3/28/2011 & today is 4/15/2011. YIKES!!!

Poison control did say that if I was going to get an "overdose," than research didn't show that this was a very dangerous drug for me to get too much of - but he thought it would be a good idea for me to go get "labs" to check my liver & kidney's to see if any damage was done.

BUT...I don't act "sick" - I am just very "cranky" - that's nothing new though..I'm pretty cranky a lot of the time anytime.

My mommy isn't really okay with the idea of more "labs" done - after all, "what" can really be done for me if there is damage...

AND who would really be able to "pinpoint" which drug (since I have had SO SO SO many) really did the "damage" - if there was any damage done anyway.

My mommy never did hear from my Dr.'s office, so I guess we'll see what happens...

I am a real fighter and I am such a miracle baby. Nothing that has happened to me has been able to keep me down...not even an overdose...

Feeling super grateful to be home with my family...AND feeling super grateful that Nana is still here too...

DAY OF LIFE 131

2011-04-14T20:46:00.000-07:00

Well..I had a pretty restless night...

I was pretty squirmy and in pain...

Today was just an "okay" day...I tried to rest, but I couldn't get comfortable..

My mommy, daddy & Nana take shifts with me because I need to have someone with me all the time...

I am famous for arching backwards so far that I am almost rolling over...

My mommy is a little scared of what will happen when I do roll over because my g-tube has been so sensitive..I guess we will see..

I am still looking UP most of the day, but I did "look" at an object today and smiled intentionally..

These are all great things...

It's the small things in life, right? :)

DAY OF LIFE 130

2011-04-14T20:39:00.000-07:00

Today is Wednesday..

WHAT A GREAT DAY I HAD, until the evening when I started my reflux episodes..

My mommy can't "pin point" exactly "what" makes this happen...

Sometimes it's movement..

Sometimes it's me being mad..

Sometimes it's positional..

Sometimes it's time of day..

I'm a mystery for sure...

BUT..

We'll take every good moment we can..

We're thankful for it ALL!!

My mommy and daddy got asked to talk at a luncheon next week about our experience at the local NICU here. They're pretty excited to share my story because I'm pretty much a miracle!!

DAY OF LIFE 129

2011-04-12T23:56:00.000-07:00

Well..I didn't sleep too well last night because of all my reflux, but overall, today was a better day..

Less movement and more sleep make for a slightly happier baby..

Today I got a visitor from a lady whose job it is to just "play" with me..

She brings me toys and tries to get me to respond to them..

She "played" with me for quite awhile today and based on my "performance," we made goals. I look "up" most of the time and I don't focus on anything specific...and noone is sure "what" it is that I am looking at...

GOAL #1 will be to focus on something for just a few minutes...

This is a good goal since I am not doing anything like this...

My mommy feels that I will do this with flying colors because I have come so far already...I guess I just like to do things in my own time..

The lady also suggested that next time we go back to the bigger hospital we should go to have my eyes tested. She is concerned about eye structure because I am sort of "off" in my own land and not much will get my attention...my eyes may need some work done...When I "look" at things, they aren't sure "what" I am processing for sure...

They keep saying it could be neurological, but my MRI came back just fine..

I am a mystery and so we will take...One thing at a time (what my mommy told her...)

First things first...We will work on getting my feeding situation under control and OFF a 24-hour feeding schedule, and then we will take on another challenge...

Taking these "new" situations head on is the only way we know how to do these types of things...

It's pretty cool to have a family who takes my with all of my "uniqueness" and runs with it...

I'm a pretty blessed child to have such a support system...

DAY OF LIFE 128

2011-04-12T23:40:00.000-07:00

Today is Monday...

It was a WAY better day than yesterday because I didn't need to go back to the hospital..

My mommy & Nana took me on a walk today and I cried the whole time...I do NOT like my car seat and I did NOT like going on a walk...

When we got back, my reflux was pretty severe again...

My mommy felt bad because she wasn't sure if my reflux was worsened by the "movement" of the walk OR if it was because I was so upset that I cried and cried for so long..

Either way, even my Prevacid didn't help me..

This darned reflux makes me so archy and uncomfortable...

BUT...I am way happier being at HOME with my reflux instead of at the hospital...

It's always a good day that I am at home...

Super thankful for that!!!

DAY OF LIFE 127

2011-04-11T14:12:00.000-07:00

Today is Sunday.

It was a hard day. I had reflux all night & I didn't sleep at all.

My breathing is very labored.

I am working very hard at the base of my neck to get air "in" and it sounds "wet" and "croupy" (instead of dry & striderous, like it normally does)

My mommy called my pediatricians office & they thought I needed to be seen right away just to make sure the "wet" & "croupy" sound wasn't reflux "in" my lungs - like two times before when I aspirated & caught pneumonia.

So...I ended up going to the Emergency Room.

My mommy really didn't want to take me in because she knew that they may want to run more tests on me & she did not want that.

Thank goodness Nana is still here to help us & offer moral support to my family.

My mommy knew that I needed to be suctioned out because my reflux was "stuck" at the base of my neck making it hard for me to breathe, but she also wanted to "see" an x-ray of my lungs just to make sure that there wasn't any fluid in them. (SIDE NOTE: My mommy doesn't like suctioning AT ALL, but there are times for it for sure..this was one of those times. She just wished that she had the equipment at home so she could have done it for me.)

These were the only two procedures that she was "okay" happening to me.

Thankfully, I got a ER Doctor who is super smart. He listened to me breathe & totally agreed with my mommy...yea, my mommy knows me pretty good.

During my ER visit, one of my favorite Neonatologist's drove over from the NICU just to see me. He knew exactly what I needed.

I am super blessed to have such dedicated medical professionals in my life. I am not even in the NICU anymore, but they haven't forgotten about me & care so much to come see when I'm not feeling well.

My life may not be "exactly" what my mommy & daddy had planned for me, but they are meeting the coolest people & wouldn't trade me for anything.

This is our "new" normal life - (BUT..who really decides what "normal" is anyway?)

We do, that's who. :-)

DAY OF LIFE 126

2011-04-09T19:57:00.000-07:00

Today is Saturday and it has been A VERY HARD DAY..

I didn't sleep at all last night..

I cried my soft "hurt" cry all night long..I am in pain..

I refluxed over and over and over today...

It is NOT coming "up" and "out" like it was before my surgery, but my airway sounds like I have "croupe" and when I breathe I sound like I am "gasping" for air. I am "retracting" pretty hard today..

It makes my family so sad to see me in such pain and they can't do anything to help me besides giving me my Prevacid and Zantac and sitting with me to try and comfort me...

I guess everyone has hard days...

On a different note, my sister is feeling better...YEA!!

My daddy, brother and Nana "ran" in a race this morning and my Nana took 3rd place in her division and came home with a metal!!

Way to go guys!!

I can't wait for the day that I can go out and run beside them..

AND...I will do just that..you can count on it!!

DAY OF LIFE 125

2011-04-09T19:49:00.000-07:00

Today is Friday..

It was a pretty good day..

My sister is still feeling pretty crummy, so she is still on one end of the house and I am on the other.

My mommy and Nana spent the whole day with me as I stayed on my boppy pillow. I love my head massaged and my legs and feet too. My massages are one of my favorite parts of the day.

My daddy & brother watched me tonight so the girls could go to a movie with my Nurse friend from the NICU. They went to see "Soul Surfer"...what an inspiring girl who has, no matter the trials she's been through, kept a super positive attitude AND her family is pretty amazing too!!

It's funny how life can take sharp twists and turns...just like an amusement roller coaster ride...

Hang on tight, never let go AND don't forget to open your eyes!!

DAY OF LIFE 124

2011-04-07T13:24:00.000-07:00

Today is Thursday..

It is a very interesting day for sure!

I didn't sleep very well at all last night.

I slept on & off until 3:30 this morning and then I wanted out of my bed, so I cried & mommy came to get me. (She knows it's not good to come to me every time I cry, but she can't help herself. She has seen me go through too much in my life to leave me crying. I am sure I will use this to my advantage - he he.)

About that same time, my mommy heard my Nana "up" with my sister who was throwing up.

My poor sister..she has the flu...bad....

She threw up SO many times today and was in a lot of pain, so she stayed at ONE of end the house on the couch with my Nana while my mommy kept me as far away as possible on the other end of the house.

See, since my Nissen Surgery, I can't throw up very well or burp very well at all without some major force, so my mommy can't afford for me to get the flu. The flu is miserable, but a person WITH a Nissen AND the flu can be way more miserable...

My mommy felt so bad that she couldn't take care of my sister AND me at the same time. :-(

On a different note..

The home health care nurse came today and I now weight 8 pounds 8.5 ounces. I am a big boy from when I was born at 3 pounds 14 ounces.

The nurse told my mommy that she needed to not be so "stressed" out about me, because I am doing so great!

That is good advice from someone who has only met me twice, but it's easier "said" than "done" for my mommy. She's spent A LOT of time with me in the NICU & noone knows me like she does or what my patterns are...I guess my mommy is a little hyper sensitive, but I guess she thinks that she has "earned" the right to be a little hyper-sensitive. She's a pretty "down-to-earth" kind of person and as I grow and adjust, so will her stress level.

(I think the nurse saw that my mommy was in sweats with crazy, "no sleep" hair, so maybe this is why she gave her advice.)

BUT...

My mommy has waited for a long time to wear sweats and have crazy "no sleep" hair" so it's all good...it's all good..

We are super blessed...I am very thankful for my Nana today AND for a daddy who is supportive of my mommy staying home with me and wearing sweats and having crazy "no sleep" hair!!

DAY OF LIFE 123

2011-04-07T11:52:00.000-07:00

Today was a pretty good day..a day of rest!!

I am still hooked up to my feeding tube so my "place of choice" is propped up on my boppy in the game room on the floor.

I do NOT like my stroller or my car seat at all.

My mommy was trying to figure out a way to "cart" me around the house with all of my "stuff" so I can get out of this room & off the floor, but I'm way happier just on my boppy right now with minimal movement (a lot of movement makes me reflux...)

BUT..I am thankful that I am keeping my reflux "in" my body...I am WAAYY better than I used to be...

Lots of stuff to be thankful for!!

DAY OF LIFE 122

2011-04-05T22:41:00.000-07:00

Today is Tuesday...it ended on a great note of sleep, sleep and more sleep...

I was pretty cranky for the first part of the day..this is my fussy time for sure...

Today was my "hearing test." SIDE NOTE: I have already had two other "attempts" at this test while I was at the bigger hospital, but during the test, they wanted me to stay "still" and I didn't like to have people put things "into" my ear, so I never would stay "still"...SO..I never "officially" passed the test..(my mommy was told the state is "requiring" that I get one??)

My mommy has witnessed me startle very easily anytime there is a noise, so she knows that my hearing is JUST FINE, so this is more of a formality.

It took my mommy about 45 minutes to even get me ready to go with all of my medical "stuff" and THANK GOODNESS NANA is here still. (She helps us so much.)

I am not a very good traveler because I don't love my car seat.

After 45 minutes at my appointment, they were able to test my right ear and I am happy to report that it is all "normal."

BUT..when they went to test my left ear, I started to cry and cry and cry and scream (very quiet "scream" for me.)

The Doctor looked inside of my ear and said that it looks totally normal, He said that he's seen babies "cry" and then "settle" down before, but I am the first baby that he saw behave "in pain" like this...

I am always full of surprises..

Based on my behavior, my mommy knew this thing in my ear was hurting really badly, so after 8 attempts of trying to get the thing in my left ear, she asked him to stop and give me a break.

It was then decided that I would have to come back a different day to get the left ear done..(as we left, they scheduled me with a "different" Doctor for next week..not "sure" why, but maybe I'll have better luck with the next try..)

When I got home, I slept AND slept AND slept AND slept.

My mommy has never seen me sleep like this before (except when I was totally zonked out with sedation after my surgery.)

I guess this wore me out today...

A friend of my mommy's sent her a message that made her feel happy...her friend said that she was "happy" to hear that my mommy was "driving" me to the Doctor instead of me still "being" at the hospital.

She is SO SO RIGHT!! My life is so much better to be here at home.

I am a happy boy!!

Feeling pretty grateful for all of our blessings!!

DAY OF LIFE 121

2011-04-04T22:15:00.000-07:00

Today is Monday..It was a very good day...

Crazy day around my house..especially now that I am home and my mommy isn't getting much sleep, but, life still goes on..

THANK GOODNESS my Nana is still here..

I was pretty fussy in the morning again, crying and crying, but in the afternoon, I felt better and had a pretty good "calm" night..I even smiled a few times..

It's the "little" things that are so great!

I had some quality time with my brother and sister too. I think my brother is really starting to "bond" with me.

We had our friend Ron over for dinner and he met me for the first time..I sure like him. We missed his wife though...

Then, the coolest thing happened around bedtime...

My Uncle drove my Aunt here (with their four kids) and brought our family FOUR WHOLE MEALS - TOTALLY COMPLETE and ready to "heat and serve."

My Aunt cooked for hours to get this ready for my family...my mommy felt so grateful..

We have so much to be thankful for and we are so blessed to have such awesome people in our lives!!

DAY OF LIFE 120

2011-04-03T17:06:00.000-07:00

Mornings are HARD...

I guess some babies cry and scream at night, but I do it in the morning..my mommy thinks I am in pain..then when I am upset, my airway sounds like air is having a hard time getting through, so I make a sound when I breathe..

My cry is getting a "tiny bit" louder, but it's still very soft and I can't be heard unless you are in the same room with me, so I am rarely left by myself..I am a full time job - - - around the clock. (My parents friend gave them a monitor for me, but it's not working right now, so mommy and daddy are trying to fix it.)

The reason my mommy thinks I am in pain is because I have a certain cry that is a "pain" cry..it is the same cry that I had when I was in the hospital and I was getting a poke or a tube.

I am hooked up to my feeding machine 23 hours a day (see picture) and I also have a "murphy vent" (see picture) that allows my stomach to "vent" because I can't burp very easily since my Nissen surgery and I need to get the air out some way.

As you can see, my set-up is pretty limited so I can't be moved or held very easily...

Most of my day is spent in our game room with me laying on my "boppy" pillow..

My family tries to entertain me, read to me, sing to me and show me things, but I'm just very fussy...

Our goal this week is to increase my food so that I am NOT on my feeding tube all day long..the sooner I can "un-hook" from this machine, the better it will be for my development...

One thing at a time...one thing at a time..

BUT...

My quality of life is way better here at home than it ever was in the hospital, and we are all very grateful for that!!

DAY OF LIFE 119

2011-04-03T16:29:00.000-07:00

Today started out hard but as the day went on, it got a little better..

I'm still squirmy and archy, & my mommy and daddy aren't sure if I am "hungry" or the food is "hurting" my belly...it's so hard to tell "why" I am uncomfortable, but I just am...

I only sleep for about 15-20 minutes and then I wake up with my face grimacing in pain...

Tonight was "date night" with my brother, so my mommy took him out while my daddy took care of me. Nana and my sister went to craft night. Everyone is trying to adjust to a "normal" routine with me.

My daddy is so kind to my mommy...he is going to "hang out" with me all night while my mommy gets some good rest...she needs it...

Thankful to have such a good daddy...

DAY OF LIFE 118

2011-04-01T23:31:00.000-07:00

Today is Friday (and that's NOT April Fool's either) :)

I didn't sleep last night, so THANK GOODNESS my Nana is still here so she could watch/hold me while my mommy took a good long nap..she is exhausted!!

It was a pretty good day overall.

I squirmed and arched "some" with reflux - but way better day than yesterday. Today the Prevacid and Zantac seemed to help.

I got some good rest with little cat naps today and my mommy did some good SLOW stretching with me too and had me support my own head for as long as I could. It kind of hurts to "sit" up, but she does it slow with me. I am still looking "up" a lot and my parents don't know "what" I am looking at. They think maybe I am checking out angels. :)

I am still on a "continuous feed drip" at the increased calorie (27) and decreased volume (20 ml's per hour) and this seems to be working for me.

My daddy and brother hung out with me tonight so my mommy could take my sister on a "girls night out" date with Nana too. My brother and sister need time with my mommy because she has been gone and she spends a lot of time taking care of me. I think they "miss" her, so it was good for them to spend time together.

My mommy ran into my NICU friend's mommy tonight and she was happy to see her. The NICU world makes very quick "bonding" relationships. I guess that sometimes, this is what stress will do...help you make new friends.

AND...making "new" friends is a GOOD THING.

We have been blessed with the greatest "new" friends and we love our "old" friends too!!

DAY OF LIFE 117

2011-04-01T23:15:00.000-07:00

Today was kind of a hard day.

I was pretty squirmy and cried quite a bit.

My g-tube is pretty sore and I am growing some "granulation tissue" so my mommy is calling the doctor to get some "Triamcinolone" cream. "Triamcinolone" is in a class of drugs called steroids. It prevents the release of substances in the body that cause inflammation. It works pretty good.

A representative came today from The Learning Center to "evaluate" me and determined that I would qualify for their program to help me get "on track" with development. The lady was nice.

BUT...As she was "testing" my abilities, she tried to pick me up and "forgot" I had a g-tube and I screamed and screamed. It hurt so bad and my mommy came out of her seat to rescue me.

The lady said that I should be having tummy time. She is "right" - tummy time is super important, but my g-tube has been so sore that my mommy and daddy are scared to "move" me very much, not to mention that I am still refluxing (but keeping it down) and "movement" sometimes agitates me more. My parents are going to have to figure out a way to give me "tummy time" without hurting me and making me reflux.

I'm pretty sensitive to most everything (noise, light, movement) and I just need to do things on my own time...AND I will.

Right now, I am loving my "boppy" pillow.

My mommy knows exactly "why" I've been getting 24 hour "nurse" care....I require it.

I am getting way better rest that I was "in" the hospital, because I am not getting tests run on me all the time, so I am glad I am home and so is my family.

I don't sleep for long periods of time..I'm more of a "cat-napper.

Thank goodness that Nana is here because she is helping us out so much.

AND...my mommy's way awesome REALLY positive friend brought us dinner too.

We have so many things to be thankful for!!

Information Regarding G-Tubes & Granulation Tissue

http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml

DAY OF LIFE 116

2011-03-30T22:49:00.000-07:00

Today is Wednesday.

What a really great day!!
I was about 1/4 of the "squirmy archy" that I normally am, so this is a GOOD thing. The Prevacid and Zantac did their job today.

My mommy decided to cram more calories into less volume, and this seemed to be a good thing. I have such a small belly from my surgery that it hurts when a lot of food goes into it. I am still on a continuous feed drip system. My mommy feels like a Nurse (I guess she is...for me.)

My Nana watched me today so my mommy could take a good long MUCH NEEDED nap.

She is still having a hard time sleeping with my breathing the way it is. It's pretty loud at times & sounds like I am working pretty hard, but that's just how I am.

My brother is still having a hard time with me being home and getting alot of the attention that he used to have, but we're slowly bonding...we just need some time.

My sister is in total baby heaven and my mommy and daddy are so happy to have her help.

My g-tube is feeling a little better. My mommy and daddy "anchor" it down with alot of tape to keep it from moving.

Since my mommy was gone with me for over 5 weeks at the bigger hospital, she had a ENORMOUS pile of hospital, doctor, specialists, radiology, procedure and more bills to go through and get figured out. She got through a few inches of them today, and felt pretty good about that. "One thing at a time" is what I have tried to teach her...(she is learning..I am making her learn this lesson.)

Feeling very thankful that today was a good day...very thankful indeed!

Love to you all...

DAY OF LIFE 115

2011-03-30T00:23:00.000-07:00

Today was another restless, irritable day.

I am just not a comfortable baby. I will try and sleep for about 15-20 minutes and then I stir around and cry because I just don't feel very good. My cry is still really soft and my parents have decided that my cry probably won't get louder until my reflux lets up, and I am still refluxing. I am even on a full dose of Prevacid and Zantac too. (My parents probably should have invested in "stock" for these. Ha! Ha!)

I am a mystery.

The lady at the Insurance Company called my mommy today and even she "knows" how irritable I am (she read the notes IN the computer from my hospital stay - I guess word gets around when you are a cranky baby, huh?)

I am still eating on a "continuous" feed and my mommy and daddy are learning really fast why I had a Nurse 24/7..around the clock...I am a FULL TIME JOB. They are excited to condense my food down so that I can get "unhooked" from my tube for some of the day.

BUT...even with the amount of work that I am, they are very happy with their decision to push hard to get me out of the hospital..I may be cranky, but at least I am not cranky AND then getting poked AND prodded AND assessed on top of my crankiness.

My brother is still having a little bit of a hard adjustment with me being home, he misses what it was like BEFORE I came...he also thinks he broke his toe, so he's feeling pretty bummed about that and on crutches to boot.

BUT...

my sister can't get enough of me. She just wishes I didn't have this darned g-tube in so she can give me a "real" hug and hold me in a "real" cuddle position (without me hurting) AND give me a real bath (not a sponge one.)

My g-tube is pretty sore and my parents have to keep cleaning and changing out my dressing on it.

My mommy is still not sleeping very well because of how "noisy" I am when I sleep. My breathing sounds like I am working really hard to get air in, so she has a hard time blocking this out and falling asleep because she is worried about me. Lack of sleep makes my mommy a "little" bit cranky (I think everyone recognizes this, even her.) Lack of sleep PLUS an EIGHT inch pile of hospital bills and mail from the past 1.5 months while she was away was a little overwhelming today....

BUT...

My Nana is still here and she is a real life saver. Our house is still "running" smoothly because of her and my mommy and daddy are so grateful.

PLUS...My mommy's friend brought us dinner tonight too...

Talk about blessings..we sure have them!!

Also..today is my Aunt's Birthday..love you tons Aunt Lisa!!

Keeping the faith...Keeping the faith...

DAY OF LIFE 114

2011-03-28T23:21:00.000-07:00

Today was a really good day!! It was SPRING outside and we opened the doors to let fresh air in.

My mommy is still very nervous about taking me out, but if it stays warm, she might think about a "walk."
I got a lot of rest and I love it!

I "HAD" to go into my "first" Pediatric doctor appointment. It took my daddy, my mommy and my sister to get "all" my "stuff" into the appointment. I'm pretty complicated. They didn't want to take me "anywhere" there are sick people right now because I my immune system has been so compromised, so they were SO careful..touching nothing and not letting my poor sister touch anything either. (I know it probably looks way over the top and people think my mom looked a little "loony tunes" wiping everything down, but she figures after she sat in an ICU for 112 days, she has the right to be "careful."
The doctor commented on how "well" my mommy and daddy knew my "behavior" and "patterns" because of my striderous "breathing" and my "archy" position too. "Classic Severe Reflux Behavior" is what he said when he saw me.

I am just getting such great rest here. Most of my best rest is while I am laying flat on my mat,,,I love it. THIS IS WEIRD because people with severe reflux have a hard time laying "flat."

Daddy is so glad to have mommy home so he can help her with me. My g-tube requires a LOT of work, so my daddy is there for moral support as my mommy works her medical magic. He's felt queeze a few times and I think it may be it is hard to watch your own child be in pain.

Either way...the g-tube is in and looking great!

My mommy made an executive decision that we (Zachary & M'Kayla) could take 2 days off this week so we can catch up since we want some "bonding" time with me and my mommy was gone for over 6 weeks.

They need some "mommy time" because the are feeling left out a little bit now that Ben is home. I don't think they quite know "how" to adjust in a positive way, adjust without being upset.

My mommy has no intention of ever hurting my brother and sisters feelings, but "change" has come to our house and with "change" comes adjustment too. They 'll get it and soon we'll all be bonded/

Well....I am so sleepy and so is my mommy and my daddy, so we are turning in.

We love your guts like nuts and are thankful for your faith of wellness for my perfect life!!

DAY OF LIFE 113

2011-03-27T23:02:00.000-07:00

Today was a little rough...

I am STILL refluxing pretty badly..even though I am keeping it down.

My mommy and daddy are feeling a little overwhelmed today because for the first time, they have to deal with all my "tubes" and "stuff" without Nurses.

My mommy didn't sleep last night because I am so noisy and she is very "in tune" with me.

I "sound" like I have a built in "squeaky" toy and I am "fighting" to get air in.

Of course I don't have a squeaky toy in me..So, here is what it really is..when I reflux, it comes "UP" still and my throat is still pretty swollen so it sounds like I am "fighting" to get air in.

I have learned "how" to get enough air in through this swelling . It's also pretty "positional" too, so if I get my head back far enough then I can "open" my airway up and get more air in. Or if they put me on a BOPPY pillow, that helps too sometimes.

When I do this, I get "arched" back as far as I can and it looks pretty "uncomfortable" but it's "how" I have learned to deal with this. I guess you do what you have to, huh?

My brother asked my mommy today if I was "really" ready to come home because I sound like I am "struggling" so badly AND I keep refluxing. He is worried since he hasn't been around me a lot yet, but I am okay..this is just my life right now and I have fought so hard to keep it, a little reflux isn't going to keep me down.

My mommy did have a crying meltdown (probably lack of sleep AND not to mention that I'm a full time job with all my medical "stuff")..SO...THANK GOODNESS Nana is here to hug her and tell her to take it ONE DAY AT A TIME. (Very good advice.)

My mommy and daddy know how I "sound" and that I "still" reflux, but that's just the way it is for me right now BUT they HAD to get me OUT OF THAT hospital...they just had to.

Being home is a HUGE life adjustment for my family because of all my medical "stuff," BUT I am TOTALLY worth it!!

They are so thankful for all their friends and family AND FOR Nana too!!

PS: A HUGE THANK YOU to my mommy's friend who loaned her a TON of stuff for me. We sure appreciate you!!

DAY OF LIFE 112

2011-03-27T22:47:00.000-07:00

Today is my BIG, HUGE day!!

My daddy is taking a shuttle from to come and get me from the hospital.

My mommy called and the Nurse told her that I had LOST 70 grams so they were "concerned" about letting me go home.

My mommy told them that they WERE planning to take me home TODAY and we would work with my Pediatrician to help me gain weight.

So...my daddy arrived and we packed up all my stuff (boy was it A LOT) and we headed out.

It was such a surreal experience for my mommy and daddy..they kind of couldn't believe it as they walked OUT OF THE HOSPITAL WITH ME.

Daddy rode in the back seat of the car with me...tubes AND all while mommy drove the car. He said it was "his" turn to help me since mommy had been with me all this time.

I didn't like my car seat too much and had to stop a few times, but we finally made it home and boy were my brother, sister and Nana HAPPY to see me!!

They took me right in my room and held me tubes AND all. Even my doggie Sammy was happy to see me - even though he didn't know "who" I was.

I was a little afraid and didn't know what was going on...it was a little overwhelming for me, but it was a relief for my family, to FINALLY bring me home after 112 DAYS of being in the hospital.

My family is feeling pretty thankful tonight..so am I (I won't be assessed or poked for the FIRST time in my life.)

Good night friends!!

DAY OF LIFE 111

2011-03-25T22:15:00.000-07:00

Today is Friday and I got the coolest news....

They are sending me HOME tomorrow!!

My parents are so excited and full of all kinds of emotion, like, joy, happiness, gratitude, relief, hope, and sincere compassion for the families still here dealing with medical stuff.

They feel like they have climbed a HUGE mountain of lots of tears and frustration, but they are at the top finally and there are so many feelings...it's hard to express into words.

I passed my car seat test with flying colors!

My mommy got the "I am still very fragile" talk today and the Nurse was pretty adamant about keeping me "inside" and "away" from people until I get stronger since I have had so many medical issues. This is good advice..I need to stay well.

She also got a "new" pump for my food today AND lots of other medical stuff to take care of me at home.

Sometimes, they will ask the parents to "room" in at the hospital, but they said that "unless they really wanted to, they know that my parents know how to take care of me, so they can just take me home tomorrow and "skip" the room in."

My daddy will take the shuttle from home tomorrow to meet my mommy and then they will pack me up and take me home FOR THE FIRST TIME!!

Thank you all for your love, your support, your phone calls, your text message, your e-mails and most importantly...your unwavering FAITH in my wellness...

It will be an exciting day for us all...chapter two will begin, so I am going to get some sleep so I'll be ready for the BIG DAY!

DAY OF LIFE 110

2011-03-25T06:40:00.000-07:00

Today is Thursday...

A BIG...HUGE..MONUMENTAL day!!

I am tolerating full food volume!!

My picc line came out!!

I am doing my car seat test later today too!!
They were kind of worried about me because I stayed awake ALL DAY long yesterday, but I slept like a CHAMP last night...

So, my mommy just thinks I am getting into an "older" baby routine and staying "awake" during the day and "sleeping" at night....

They want me to tolerate this new volume until AT LEAST Saturday...AND stay well...and then we can talk about the "H" Word...going H-O-M-E!!!

That's just a couple of days, so I can do this...I can do this..I can do this...

Thank you all for keeping the faith for my wellness!!

DAY OF LIFE 109

2011-03-25T06:34:00.000-07:00

Today is a wonderful day!!

I haven't even had any Ativan or Tylenol either...

Today they are increasing my food to my "full" volume. They are doing a "continuous feed" drip on me and so far...so great!!

Today is my last dose of antibiotics too so once that is done AND I am on full food volume, I can then get this ugly picc line out!!

I feel like a new little man...and I look like one too!!

So grateful for all the people keeping the faith for my wellness!!

DAY OF LIFE 108

2011-03-24T23:00:00.000-07:00

Today is seriously a GREAT DAY!!

I am like a new boy...

I slept for 7 hours last night and I NEEDED IT!! I did have a little help from my friend, Ativan.

I had some "mat on the floor" time today with the Ocupational Therapist.

She was teaching my mommy some ways to get me to not "arch" so much and to turn my head to the "left" since my head is getting a little flat on the "right' side.

She also made some observations about my eyes. I have a tendency to "look" past things and I don't really find something to focus on and follow it "yet." My Nurse Practitioner says that I am just "looking at angels" and that is "what" I am focusing on right now. They KNOW I can see "light" because I close my eyes when light is shined toward my eyes, but I seem to look up and not want to "zone in" and "track" on anything "yet"...but I will...I will..

Overall, it was a fantastic day...I love to be out of my crib!!

The results of the echocardiogram came in today and...I AM TOTALLY NORMAL. The "Ventricular Septal Defect" that I once had is GONE!!!

I am going to go "up" on my food again and everyone is cheering me on...

Keeping the faith for my wellness!!

DAY OF LIFE 107

2011-03-24T22:56:00.000-07:00

Hard day AND night for me.

I am just not sleeping for some reason. I am only getting small cat-naps.

I didn't gain any weight, but on a positive note...I didn't lose any either.

I just need to be at home where it is "quiet" and I can rest without any disturbances so I can "rest and grow."

I had to have Ativan a few times because I was so agitated.

They are increasing my food today and everyone is crossing their fingers that I can tolerate it.

I am still on my antibiotics because my CRP went UP instead of down. I am a mystery for sure.

My mommy thinks that my baseline CRP is higher because of all my reflux. That's "her" guess and it's ALL a "guess" anyway, but I am sure they would love for me to start "talking" and just tell them how it should be.

I did have an echocardiogram and they were looking at the Ventricular Septal Defects that I had...the results won't be back until tomorrow though...

So grateful for all the people keeping the faith for my wellness!!

DAY OF LIFE 106

2011-03-24T22:48:00.001-07:00

Today was an amazing day...

I love to sit up and look around...

I smiled for the FIRST TIME (that my mommy saw) today when I was awake.

No Ativan in 24 hours

My CRP (number that detects inflammation in the body) has mysteriously gone up o 4.5, but I think it's because I have reflux still - even though it is NOT coming "up" and "out" like it was...I still have it, and reflux can cause inflammation.

Thank you all for your love and prayers...keeping the faith for my wellness!!

DAY OF LIFE 105

2011-03-24T22:41:00.000-07:00

Today is an exciting day BECAUSE...

They are "increasing" my food PAST the point we were able to get "last" time before I quit "tolerating" my food all together.

The small increase will put me at 80 per kilo, and in order to go home without IV TPN fluids, I need to be at 150 per kilo, so I am 1/2 way there. 150 is what I need to grow and get bigger.

Once I am there and tolerating it, they can get this painful picc line OUT and I can go H-O-M-E.

I am up 20 grams today, so I "officially" weigh: 3380 grams = 7 pounds 4 ounces.

I am wearing "newborn" outfits and they fit pretty good.

I am still refluxing, but I am swallowing it back down. I am on BOTH Zantac & Prevacid and I NEED them both to be a HAPPY CAMPER.

My voice is still really soft and it's hard to hear me, but my mommy and the nurses keep a good eye on me.

I seem to be bored. I am very strong and can hold my head up and if I grunt really hard, I try really hard to sit up when I am elevated in my crib.

I miss my family very much and I cannot wait to go home where my brother and sister can entertain me.

Keeping the faith for this...

DAY OF LIFE 104

2011-03-24T22:38:00.000-07:00

It was a pretty good day and I have only had 1 dose of Ativan in a 24 hour period.

They increased my food just a little bit and so far, so good.

I am refluxing a little and it hurts, but I am keeping it down.

My CRP (number that detects inflammation) is up again slightly, to a 4 and I am already on 3 major antibiotics, so again...they are scratching their heads.

The new Doctor on duty is a pretty good and conservative Doctor, so he thinks I may just have a "high" baseline and he wants to "wait" and see what I do because I really don't "act" sick.

They did order another blood draw from my picc line to check another culture, but it will take a few days to see "if" anything grows.

I got my RSV synagis shot today, so I am good for another month.

I had some special visitors today - my Uncle, my Aunt and my mommy's special friend from home.

She was glad to see "familiar" faces.

So grateful for all the people keeping the faith for my wellness!!

DAY OF LIFE 103

2011-03-24T22:34:00.000-07:00

I had a pretty good night after they stopped my food for a little while and then restarted it again later on.

My "ph test" indicated that I should probably get Prevacid added back in, so they started me on this, along with Zantac "in" my g-tube.

They increased my food today to 7.5 ml per hour and decreased my IV fluid down a little too.

I kind of sound like a "squeaky toy" when I breathe, but since my oxygen saturation remains "high."

The "new" Doctor on duty doesn't seem to worry too much after my mommy told him that I sometimes sound like this and to not be alarmed, it's "normal" for me.

I only got one dose of Ativan today and that seemed to do the trick as I was able to get some good rest and I wasn't totally sedated all day. Good rest is what I need.

On a different note, my Grandma Foster was on my heart today. She is a special lady with a HUGE heart. She has taken care of my cousin Abe for his whole life. Abe went to heaven last night. He had a lot of respiratory problems that stemmed from a condition called "Sanfilippo Syndrome." (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002190/)

I think he has suffered for a long time and I am glad that that he is no longer in pain, AND best of all, he gets to be in a perfect body, he gets to be with his mommy (Miriam) and his Grandpa (Bob.) He's been with us for a long time and we will miss him very much.

Thank you for keeping the faith for my TOTAL and COMPLETE wellness!!

DAY OF LIFE 102

2011-03-24T22:31:00.000-07:00

Today has been kind of a strange day...

I had the best day yesterday and the best night too. I was really calm and happy WITHOUT any pain or sedation medication. The Occupational Therapist came to work with me and she thinks that some of my behavior is "neurologically" related, but she isn't sure (for example, my body posture being archy..my eyes always looking "up" and a few others.) - - - But my mommy just thinks I am tired of this bed and I am trying to "arch" my way OUT of it.

Around 11:30, before they increased my food, I started to cry AND cry AND cry. I literally cried and cried for over four hours. I would go to sleep for a brief few minutes and then I would "startle" and wake myself up crying frantically again.

I am NOT resting peacefully, as I am doing a strange "twitch" which wakes me up and then I cry more.

They are not sure "what" is going on..

Ativan withdrawals?

Surgery discomfort?

They have decided to stop my food so they can get an accurate PH reading in from the contents out of my g-tube.

Well, the PH came in at 2 and YES, I am back on Prevacid again and they've restarted my food.
(my mommy asked for Prevacid when they started food but was told I shouldn't need now with all my surgeries.)

Tonight is bath night and hopefully this will help me go to sleep "soundly." I need it and so does my mommy.

PS. I weigh 7 pounds and 3 ounces. YEA!!

Sticking to the faith of wellness!!

DAY OF LIFE 101

2011-03-24T22:27:00.000-07:00

Today is Tuesday, and it has been a great 24 hours.

My breathing is better...a lot less striderous..maybe this means my swelling is starting to go down. I am on Vancomycin, Gentamicin & Zosyn antibiotics.

They did two more sticks on me today..I am kind of getting used to these heel sticks...one stick for a "trough" test and one stick for a "peak" test on the Gentamicin. They need to make sure that my antibiotic levels aren't too "high" or too "low." They also did another CRP and my level of inflamation is coming down, so the antibiotics are working.

My mommy was happy today because my nurse is "conservative" with sedation. I only needed 3 doses of Ativan in 24 hours, which is down from my "usual" dose. All of the Ativan was given last night, and I was a happy camper during the day, so I didn't need it.

I am not archy or in pain and they increased my food to 4 mils per hour. So far..so good.

My g-tube is healing up and overall, it's been a great day.

Remaining strong in the faith for wellness...

DAY OF LIFE 100

2011-03-24T22:25:00.000-07:00

I am 100 days old today...boy time flies!!

Today is a pretty low key day.

I had 2 sticks today so they could check the "trough" and "peak" levels on my antibiotics for my "mystery" infection. Since I have had pseudomonas in the past, they want to make sure and cover for it in these antibiotics...just in case I try and pull a "surprise" on them.

They "slightly" increased my food today to 3 mills per hour.

I am still receiving Ativan sedation every time they can give it to me. My mommy thinks I am getting "dependent" on it, and she may be right. My mommy thinks that my "Ativan" usage has gone up since I have been here because I get so irritated with noise (ie: babies crying, people coming in and out; cleaning, emptying trash, people talking, etc..etc..etc..) I like things Q-U-I-E-T.

I had a special visitor today from St. George. One of my Neonatologists came with his wife. My mommy was almost brought to tears when she saw them because she misses familiar faces. I felt pretty special that he took time out of his vacation to come and visit me.

It was a good day for a visitor because my mommy had a crying melt-down. She has been in the hospital with me for 100 days and knows how "I" like things done. The nurse she had today didn't want her to do a procedure in a "certain way" that my mommy had been used to doing it.

It's hard for my mommy be told what she "can" and "cannot" do with me. It's hard for her because she cannot just walk into the room and pick me up because I have so many cords and tubes, so she always has to have help to get me in and out. It gets very frustrating. (Thank goodness she can call my daddy AND Nana and they listen to her "vent.")

Overall, today was a good day and we remain faithful for my wellness..

DAY OF LIFE 99

2011-03-24T22:19:00.000-07:00

Today is Sunday. It is a beautiful day outside and they opened the blinds so I could get some light.

They started me back on food today. Elocare formula. Due to my lack of tolerance last time, they are going REALLY slow. Like, 1.5 mills per hour, slow.

Since we are treating this "mystery" infection "blindly" and still looking for answers today my mommy and daddy consented to doing a LP (Lumbar Puncture) to get some fluid out of my spinal cord so we could rule OUT a bacterial meningitis infection. The reason they consented to this is because after my blood draw, they found that my CRP (a way of determining inflammation) went UP again, not down after already being on strong antibiotic.

A "LP" is a sterile procedure and one of my favorite nurse practitioners (at this hospital) was able to do the procedure. They explained it to my mommy I needed to be held kind of in the same "position" as when "she" had her epidural. Kind of curled up.

To help me relax, they gave me Ativan 2 hours before, Fentanyl 30 minutes before and Ativan 30 minutes after the procedure. I was pretty gorked out "afterwards" but during the procedure, I surprised them yet again...I am a fighter because I didn't "calm" or "quit squirming,"...even with all of that sedation. I was a moving target and I did NOT like to be curled up and held in that weird position AT ALL.

It takes 3-5 days for the culture to grow out completely, but the blood tests that they ran on the LP fluid, didn't show an indication of meningitis.

After my procedure, I slept for a very long time.

Remaining faithful for my total wellness!!

What is a Lumbar Puncture?

http://en.wikipedia.org/wiki/Lumbar_puncture

DAY OF LIFE 98

2011-03-24T22:13:00.000-07:00

Today is Saturday and I am still being fed soley on IV fluids.

My mommy was a little (a lot actually) frustrated at all the testing they HAVE done and are STILL doing on me each day.

All of the testing is making me get NO-REST...AND... I have another infection to boot...so she wanted to discuss these concerns with the Doctor in the "daily rounds."

My CRP is 5.8, which is up from 4.0. We aren't sure "why" this is going up. Another surpirse...I am full of surprises...Could it be a mystery infection?

During the rounds, the Doctor gave my mommy a few "options" for me.

Due to my 9/14 translocation, he wanted her to think long and hard about "how long" she wanted to keep going "forward" with "medical" procedures and how aggressive her and my daddy wanted to be.

He said that no one knew for sure how long my life span would be or what the quality of my life would look like and he wanted them to consider how long of that time they wanted to spend IN the hospital, running tests.

So, he wanted to be sure that she and my daddy wanted to continue moving forward with medical intervention. He said that we can find some things and fix some things, but the underlying problem may indeed be from my translocation, and they can't fix my DNA.

He agreed that they don't know anything about a child like me (no "documented" cases) so it's all very uncertain, but he wanted to know if they were on board with keeping me in the hospital - even though I am very immune compromised, prone to infection and the longer I stay here to keep "searching" for answers, it means MORE TESTING and possibly more infections...OR...if they wanted to take me home to "hospice/comfort care" so my family could spend time with me, (without medical intervention) however long that may be.

My mommy knows my daddy very well AND they have been offered this "option" for me before, so when she "understood" what the meaning of "hospice/comfort care" really was, she immediately said that this was NOT AN OPTION for our family. PERIOD. I am a strong little boy and have made it through so much already, and there were many times that I was much more sick than I am right now and I pulled through. If I wasn't supposed to be here, then I would have gone "home" already.

I am a fighter and I am very determined. I have a lot of support from my family and friends that make me stronger everyday. I also am NOT an accident. God made me just the way I am ON PURPOSE and I have a purpose. My purpose is to keep moving forward, and that's exactly what we are going to do.

Keeping the ultimate faith for my wellness.

DAY OF LIFE 97

2011-03-24T22:12:00.000-07:00

I am TOTALLY on IV fluids again because I was so fussy yesterday so they stopped my food.

I am full of surprises...

They aren't sure "why" I am not tolerating my food..maybe I still have pain from my recent surgery? Maybe my stomach doesn't like to be "stretched." Too much pressure on my Nissen? Sore G-tube? They just don't know.

So, they started the testing again..

KUB X-Ray

CBC/CRP FULL Blood Work Up

Urine Culture (OUCH!)

In order to help me, they are alternating Ativan, Tylenol and Fentanyl. They are trying to keep me pretty "sedated" since they had so many tests and evaluations on me today..they will just keep testing until they can figure something out...

My mommy is very frustrated because after all that testing, they decided that they needed to draw MORE BLOOD from my PICC line AND from my other arm to "see" if anything grows in a blood culture from either arm.

A "risk" of putting in a PICC line is "infection" and they have to be sure that this new central line in my LEFT arm isn't infected already.

Today was a long day of testing and NO resting...

Remaining faithful in my wellness...

DAY OF LIFE 96

2011-03-24T22:09:00.000-07:00

Wow...what a hard, restless night..

I am hurting and I can't tell anyone why.

They keep giving me pain/sedation medication but are concerned because I am just not settling down unless I have something to take the edge off - and even then, I am not entirely restful.

They decided to only "slightly" increase my food since I was very squirmy.

BUT...I am still on ROOM AIR and doing really well.

I also weigh 6 pounds 14 ounces (exactly 3 pounds heavier than when I was born.) The doctors are not really happy with my minimal weight gain, but I'm working pretty hard at it.

Thank you to all my friends and family for keeping the faith of wellness for me!!

DAY OF LIFE 95

2011-03-24T22:08:00.000-07:00

Today is a GREAT day.

I am ALERT and AWAKE and CONTENT...all at the same time. (I have no food in my stomach as I am on IV fluids being fed to me through my PICC line.)

They want to start me on a SMALL amount of food today to see how I do.

They took off my nasal canula and I am doing great so far, unless that darned "reflux" comes up and then I have to swallow it back down so my oxygen saturation dips when that happens, but then it will come right back up.

They are talking about starting me back on Prevacid to help with this.

My airway sounds pretty striderous today, especially right after my "reflux" episodes.

My g-tube site is starting to look better....they are putting this special cream (Triamcinolone) that helps with "granulation tissue" - it's pretty powerful stuff.

Now faith is the substance of things hoped for, the evidence of things not seen....