I'M HUNGRY..FOOD PLEASE!

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

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

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

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..

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!!

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!!

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

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

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!!