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.

WORKING ON THE BOTTLE

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!!

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!!

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..