Agitation

We are trying to figure out what is going on.....  It seems that I have been increasingly agitated over that past few weeks.  Mommy and I think we have narrowed it down to a few possibilities.

Mommy got these for me this past weekend at the Sweet William Market

1.  My on going tummy issues.  I continue to struggle to poop without some assistance.  Mommy and I are still waiting for the GI people at the hospital to call us back.  Not surprised they called late this evening stating I need to go in for a Barium enema to rule out some other issues and then went on to tell Mommy this long list of things they needed to rule out.......she put the phone down at that point.  Again we are only focusing on the positives and do not want to hear negatives it they are not happening at this moment!

2.  Meds.  As I am tapering down on the Topamax that leaves me with just Keppera.  One of the main side effects of Keppera is agitation.  We are not sure if that is where some of my crankiness is coming from or not.  Guess we will have to wait 8 more weeks to find the answer out to that question.

3.  Over stimulation.  Yep that is a big one.  I continue to struggle with anything more than just "hanging out".  Mommy took me to Aidan's school yesterday to pick him up and hang out for a bit while he played with his friends.  All the faces and noise just puts me over the edge and then it takes me an hour or so to settle down when we get home.

So what are we doing about it you ask.....well I spend a good bit of my time with my knees to my chest and my butt and feet in the air.   This is MY HAPPY PLACE!!!! 

Makes it kinda difficult for Mommy to take me anywhere, but we are working on that as well.

Figuring it all out...

Not your typical Monday.  I was schedule to go to the Anchor Center today but my tummy was bothering me so much that Mommy and I stayed home.  Wow, this tummy thing REALLY messes things up.  I must have slept a total of 4 hours between 3am and 8pm.  We are not sure if I'm just being stubborn (most likely not......Mommy keeps saying what a tolerant and happy baby I am) or if is the meds.  I am tapering off the Topamax and will taper off the Kepprea after that.  One of the most common side effects of Keppera is severe agitation.  So it is unclear if some of my "issues" are tummy related or med related.  Most likely a combination.  But what we do know.....

1.  I'm having increasing tummy troubles.  It seems that no matter how hard I try I cannot poo without some assistance.  It is getting to the point that most evenings I spend screaming in pain till I pass out from exhaustion.  Mommy and Daddy have been trying everything.......so back to Children's Hospital.  Mommy finally called them today to see what else they can come up with to help me be able to do the deed without assistance.

2.  Through all of this Mommy and Daddy noticed that last night that I shed tears.  I was so confused as I was in pain because of my tummy and they seemed so happy.  I'm still trying to figure them out!!! 

3.  Well I have been working up to this for some time and today I finally figured out what all the fuss is about.  I LAUGHED!!!!  Yes you heard me.  It wasn't a belly, rolling around on the floor begging for more, laugh like my brother, but I laughed!!!!  Mommy, Daddy, Grandma, and even Aidan heard it.....they were so happy.  I guess I need to keep working on that one.....everyone seems to love it.

Again we are so thankful to everyone for their positive thoughts and prayers.

Sunday

With the weather getting hot again I have been hanging out inside.  So while Mommy was on duty she had me working it up and doing many of my exercises.

After working hard at my exercises I took a nap while Mommy took Aidan to get his Halloween costume.

Mommy and I hung out in the back watching Aidan swing his light sabre while Daddy attempted to install my new car seat.....lets just say that didn't go so well.

So I went back to doing my exercises (nice toy grabbing), Mommy went back to taking pictures, and Aidan kept changing his outfits like he always does.

Started my Friday off as we usually do..... with the Chiropractor.  Today ended up being different....on the way home Mommy got a call from Aidan's school that he was sick and needed to go home.  Mommy and Daddy knew this was coming as a virus in going around......so to school we headed and Aidan did his best to not cough on me in the car.  I haven't been to the zoo yet so Mommy told me Aidan sounded like a seal.  While Mommy was getting Aidan settled I "had" to do some homework.....

 I thought I would try to fake Mommy out and act like I was tired....apparently Aidan over did that skill when he was younger and it doesn't work for me.....Mommy means business.

So I had to work while Aidan got in his PJ's and got ready to nap.....

While Aidan was napping Mommy got my new car seat ready and strapped me in.....

Saturday morning.....

I got some snuggle time with Daddy while Mommy headed off to the Market.....

and Aidan tried to recuperate on the sofa....

Aidan was feeling better this afternoon we headed out doors to spend time with friends and my "fan club".  I go some feeding time with Ms. Ashlee while others waited their turn to spend time with me.

What a busy few days.  I have been working very hard at all my therapies.  Between therapy and Mommy taking pictures of me I am one tired gal.

 

Then off to the Anchor Center......I am working really hard on sitting which is difficult when my tummy hurts so much, but on good days this is what I do.....

....then back home to put on my newest outfit (thanks Dr. P)......

.....so after we were done with dress up its back to work for PT.  Today Beth pulled out the exercise ball.  I'm not sure what I thought of it.  Maybe over time I will have as much fun as my brother has playing with it, but not today.

After fussing for most of the evening I decided to give in and am off to sleep.

To EEG or not

A decision needed to be made.  There has been a discussion going on in our house for the past week or so.  With my recent improvements Mommy and Daddy have been talking about my upcoming EEG.  After much discussion, soul searching, praying and talking with family a decision has been made.  Mommy picked up the phone late Friday afternoon and canceled my scheduled EEG. 

For those who are not understanding why....here is the long and the short of it.....
I'm doing better there is no question about that.  My seizures have stopped.  I'm currently coming off 2 anticonvulsants as they have/had no positive impact.  So what would another EEG show....well most likely no seizure activity and my current encephalopathy (abnormal brain waves that cause severe developmental delays).  Our thoughts are this.....we know that most likely my encephalopathy is still there and still the same.  We are feeling that coming off these harsh meds has allowed me to make the strides that it have recently made.  The doctors have made it very clear that since my seizures have stopped they have no interest in trying to improve my envephalopathy as they are not sure how or if they can.  So an EEG will only show what the doctors are not able to or willing to treat.  So what is the point of having one.

So we decided that I, Nezbah, will direct the course of my treatment.  I'm doing great considering my situation and we will follow that road.  We will focus on the good times we are having.  Step back from all the doctors and focus on positive treatment (PT/OT/Chriopractor).  I am choosing to just live now, to be a baby not a diagnosis and my family is thankful that I am in a position place now that they we can do that.

We will take each day as it comes!!!! 

What a great weekend.  I initially planned to go to the Farmer's Market with Mommy and Aidan this morning but decided to stay home and snuggle with Daddy instead.  I still get overwhelmed with a lot of noise and activity so some times it is just better for me to stay home.  Mommy put silly slippers on my feet today to try and get me to "Notice" my feet today.  I didn't seem to notice and enjoy the slippers as much as everyone else. 

Then "trouble" came over......well not really trouble but Aidan's "other half" as Mommy and Daddy call him.  These two characters have been together since they were 1 year old and are best buds.  So while they were playing with Mommy....

I watched football with Daddy......Geaux Saints and Broncos......

After everything calmed down......Uncle Widg and Aunt Destin came over for dinner and Aunt Destin took me for a walk in my Big Girl stroller.....

I hung out with them outside while everyone ate dinner and then headed off to bed.

Personality

Apparently I have "quite the personality".  I don't know what that means, but I keep hearing everyone say that.  All I'm doing is talking, talking, and talking and sleeping less each day.  I'm able to tell people when I'm hungry, tired, over stimulated or just plain pissed off.  Mommy and Daddy seem to think this is great. 

I'm still not on any type of schedule except of course for waking up at 3am like clock work.  Every day Mommy asks me (more like pleads with me) to change it to 5 or 6 am, but I seem to be happy with 3am.  It gives me just enough time to eat, hang out for a while and then listen as the world wake up.  I like it best when Mommy is awake with me but sometimes she just can't keep her eyes open. 

"Good fences make good neighbors"....Well in our case good neighbors make good peach pie.  Thanks to Bob and Julie for passing pie over the fence this morning.....Mommy and Aidan decied to eat it for breakfast.....It smelled Yummy....THANKS!!!

I had a long venture out today.  Mommy and Aunt Destin took me out to purchase a new car seat, a feat in itself.  All I could hear was talk about safety ratings, chemical ratings, side impact, blah, blah, blah.  And then came the testing.....to see which one I liked.....after all Mommy (Thanks Marmee) is getting a new one since I protest so much in my other one.  And after all that they didn't have it in stock.....so we headed back home to order it online.

After getting back Mommy decided I need to move on to my Big Girl Stroller since my other one makes me use the car seat I dislike so much.  So after much "strap moving" Aunt Destin figured in out and tah dah.....

What a day.....after all the hard work I still had to fit in some play time with Aidan.....My number one fan....

Night to all.....I'm fighting sleep....and Mommy is hoping I will sleep in tomorrow.....maybe I'll surprise her and sleep till 4am....who knows anything is possible.

Noting really eventful this morning. I hung out in my cradle while Mommy took Aidan to school.  Sometimes I become over stimulated and would rather just hang out by my self instead of being held.

other times I would rather hang out in my swing.....

but no matter what mood I'm in I know that I am loved....

Mommy and I headed off to my Chiropractor appt.  I will be cutting back to once a week.

Waiting with Mommy for my appt.

It was a surprise when Aunt Destin showed up this afternoon.  She and Uncle Widg have been gone for several days due to being sick.....

What a treat.....I got to spend my first afternoon in the alley watching Aidan play will his friends while Mommy and I hung out with the girls.