DRINKING FORMULA!!!

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!!

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!!!

(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

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?

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

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!!

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.