LIFE IS AMAZING!

LIFE IS AMAZING!!  (but I am sure I'm not telling you anything you don't know already, right?)

I have been TOTALLY "well" for over a month now and I love it (so does my family because I am in THE BEST MOOD when I feel good.)

I have some really "cool" teeth that are cutting in some "strange" places and I LOVE to BITE anything I can get into my mouth with...hands, fingers, toys, and even my dog's leg. (poor Sammie)  My doctor says I will need to go to see the dentist in the next few months so they can x-ray to see what is going on with my teeth.  You know me...I'm full of surprises.

We're working really hard at "sitting" up, but I'm still pretty floppy.  My head is really heavy, so some days I do better than others.

I still weigh about 18 pounds so I get pretty heavy after awhile because I don't offer my mom much help "supporting" my own body...not to mention that I still love to arch backwards and hang upside down like a bat.  I just like looking at the world from that view...it's familiar to me.  :) 

As for toys go, I love anything that lights up but my real joy is still with people.  I don't EVER want to be left by myself, so my mom has a "chair" or a "blanket" or a "swing" in every room of our house, so she can bring me with her and keep me happy as she does what she needs to do everyday.

I LOVE to go out on walks (at night when the sun goes down) and shopping too.  The lights in the store make me happy, but the "sunshine" makes me frustrated.  So when we do go out, I usually have a blanket over me it it's too bright.  (My mom is just THRILLED she has her freedom to go "out" with me, so she'll do whatever it takes to keep me happy.)

My legs are getting stronger because my dad can hold me up and with much support of course, I will bare my own weight for a few seconds before I collapse them. This is huge improvement because before I would never bare any weight on my legs at all.

I eat a bottle all day long and I eat by a tube at night.  

Slow but SURE progress...

As Samuel Smiles says:  "Progress, of the best kind, is comparatively slow.  Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.

I think I would have liked Samuel Smiles...

Make it a beautiful day friends and I hope you know how much I love you.

Benjamin

17 MONTHS OLD

Hi friends...

Can you believe I am 17 months old already?

Whew!  It doesn't seem possible that this much time has flown by.

I am doing so well.

I weight about 18 pounds.

I am rolling over more and more everyday, and if I see something, I go get it.  It may take me awhile, grunting and breathing hard, but I roll my way over.

I do get "stuck" sometimes and I am finally loud enough that my family can hear if I cry.  It's WONDERFUL!!  (This is kind of funny because how many families do you know that are so happy to hear their baby cry loud?  My family LOVES it because that means that my vocal cords can make sound!)

I am 100% eating a bottle during the day, but am still being tube-fed at night.  My belly is still pretty small and  doesn't hold the amount of liquid I need on a daily basis, so I have to get the extra liquid and calories at night.

My parents want my g-tube out so badly because now that I am getting more active, I am also "leaking" more because the food gets pushed out of the g-tube hole, so they are changing my bandages more often than ever now.

I also know that this "tube" shouldn't be here because I pull at it every single chance I get.

I love people...I AM SO SOCIAL, and I still do not want to be left alone.

I am still pretty flopsy.  I can hold my head up for a little bit, but then I get tired and it's hard for me.  I am working really hard at sitting up, and as long as someone helps me, I can do it for a few seconds.

My special friends from The Learning Center come to see me.  I see a physical therapist, an occupational therapist, a vision lady and this month, I will start to see a speech therapist too.

My eyes are still having a hard time focusing in one direction at the same time, but we are working on it.  AND....they know I can see because I bat at everything.

The only noises I make are a growl, but if you say "hi Benjamin" to me, I will growl back at you.

I do however LAUGH outloud when my family tickles me or plays "peek-a-boo" with me.  It sounds like a "whisper" laugh, but it is a belly laugh indeed!

I have 6 teeth and they are coming "in" in very strange places.  My doctor isn't sure if this is a condition of my chromosome translocation or what, but I look like a little vampire...AND...I love to bite anything I can get my hands on.  He thinks we will be visiting the dentist to "see" what is in store.  As you know, I AM ALWAYS FULL OF SURPRISES.  (Truth be told, I like to keep these people on their toes and guessing about me.  Gives them something to do, right?)


I love walks and to go to the store.  My mommy is so grateful.  She feels like a free bird and loves it! 

My head is still pretty crooked, but the 2 helmets that I have just didn't work and I DIDN'T LIKE THEM NOT ONE LITTLE BIT.  My mommy finally decided that something had to go.  I was pulling at my g-tube and pulling at my helmet and crying non-stop, so she chose the helmet and now I am back to my happy self.

My daddy gave me a "buzz" hoping that my hair will grow in more quickly so that we can hide my flat spot.

My life is amazing.  My family says that I arrived to make them the people they were supposed to be all along and I love that.

Life is a precious thing my friends.  It's the small things that can sometimes make the biggest difference.

I love you all very much and I am truly grateful for your support.

Benjamin

OH MY GOODNESS

Oh my goodness friends....

It has been so long since my mommy updated you.

So, let me give you the 411 on what has been going on since my last update.

January was a pretty good month...my parents tried mixing all sorts of "flavors" into my nasty tasting Elecare formula, but I just didn't love their inventions.

But then....I discovered Chocolate Pediasure & folks...let's just say that my world changed. I couldn't get that food in fast enough.

I started eating this chocolate everyday and I was doing great!

I got to the point where I wasn't eating any food "in" my tube during the day...I was eating it all by mouth!!

The tube feedings were reserved for at night while I was sleeping.

I was holding my own bottle and loved this new situation. (so did my parents because they could take me somewhere and just bring a bottle....awww, the simple things, huh?

Well, somehow, I caught another cold during the first week of February.

I was pretty miserable.

I coughed so hard that my reflux returned with a vengeance.

I ended up aspirating into my lungs again & catching another bout of pneumonia.

If that wasn't enough, I then came down with "metapneumovirus" too. (this is like rsv's ugly cousin.)

I went to the Doc 7 times in 2 weeks & they just didn't know what to do with me.

At this point, I had totally stopped eating and so my parents had to put me back on the tube to keep me hydrated.

They prescribed 3 different antibiotics which did nothing but...give me severe diarrhea...like SEVERE diarrhea.

So severe that they found I now had c difficile colitis and I was getting dehydrated. I didn't know a person could go to the bathroom as much as I did (neither did my mom) and let's just say that the skin on my bottom was all off from this powerful stuff....it was pretty painful.


The month of February was a rough one but we are so thankful for my feeding tube because it kept me out of the hospital. They could feed me even as sick as I was and it was a huge blessing.


In March, I was feeling better, but I still was not 100%.

My parents slowly worked me back onto my chocolate drink & I loved it.

I had lost weight when I was so sick, so my already leaky g-tube was even more leaky because it was now too big. This was even more motivation to get me eating by mouth.

As I started to get stronger, I liked to sit up if someone was holding my hands. I like to bite everything in sight and I also cut 2 bottom teeth this month.

March was a way better month.

In April, I am still coughing.

I'm not sure why I can't kick this, but I'm trying really hard.

April has been a month of progress all the way around.

I am cutting 4....yes FOUR teeth at the same time. It hurts too! They are coming in like vampire teeth, but everyone says how cute I am.

I am rolling over now.

Sometimes I get stuck, but I like to move and shake when I can. The world is a whole big place & I've got to get moving.

I love to sit up.

I can't do it alone yet, but my core is definitely getting stronger.

I am a people person and I love to get attention.

I've gained a little weight back, and I almost weigh 18 pounds.

I am on a trip with my nana and mommy to Boston, Ma.

Whew! What a journey it has been.

Getting here was like a prank show.

We had to board the plane....wait 3 hours on the runway...de-board the plane...run...run...run to another concourse...get re-routed to another state...sit more time on the runway and finally make it to our destination 7 hours late.

I was a pretty good sport, but I had my moments (as you could imagine.)

We finally made it and I met my "east" coast family.

They are very nice and I'm getting slot of attention.

Yesterday, we took a big ferry boat to Martha's Vineyard and walked around the little town.

My mommy was in her dream land and didn't want to leave (she loves the ocean.)

It has been a really great trip so far and I am glad I was able to come.

My mom started to write this post when I was sleeping, but I'm awake now and I've just dumped chocolate pediasure in my Auntie's bed, so I'd better go for now.

Love you very much special friends...

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!!!