confessions

I dreaded today

I have a headache from crying and I am tired

my heart has a gaping hole and I feel so empty 

I hate how this life of ours is so extreme

2 months non-stop family time, family fun...

and then today it all comes to a crashing halt...

I am angry and lately constantly hear myself saying "this is not fair!"

I am angry with me...
I am angry with God...
yes, I said it...
I have been doing a bit of fist shaking...
I am angry with the world, and my surroundings and circumstances.

I am sure there are others in worse circumstances... somewhere....

BUT
I feel like mine are about as crappy as it gets.

I am not going to sound nice or like a follower of Christ....
but these are my thoughts...I am human and flesh...
not proud of them...they are ugly...but truthful

lately....when I see a healthy baby...holding their head, making eye contact, possibly  a whole 2 years younger than Hudson but waaaay ahead of Hudson....I feel envy, bitterness, anger.....

and lately I have been wondering why I have to be in a long-distant marriage.
Who dreams of getting married and being alone? (to some this might seem ideal..lol)
this is hard on me, the kids, it is an emotional roller coaster...sometimes I just want off!

it irritates me to no end....hearing someone say they can't stand being away from their husband for one more night (as he is on a business trip) as I am away from mine for weeks/months at a time, as I care for our extremely sick child + 2.

I have been thinking about failed friendships and selfish people, and I am sickened over reality of people in my life who used to be my friends and are no longer around...they are happy...I continue suffering without them around....clearly they could care less.

it blows my mind that we are approaching the 3 year month (September) when we were blown away by the news that our son was having seizures and something was seriously wrong with our ideally healthy baby boy.
It seems in those 3 years nothing has changed but bad news and learning about a devastating illness.
Hudson hasn't gained any milestones...none....and it kills me to the core.

I didn't sign up for the package deal...

the "have three kids, one incurably ill and needy, with your husband living in another state" package.

I am angry that this is the cross I have to bare...
who would want this deal?

why do my kids have to start school Wednesday without their daddy dropping them off with me? It will be the first time I do it alone and Hunter already made mention of it...

why do I have to endure all of this illness alone... day after, seizure after seizure?

WHY?
(((fist-shaking)))

and I feel like a total hypocrite...

because I am...

asking for prayer, when I really only want to yell at God for handing me such a rotten deal...

when I myself haven't been falling to my knees at all...
rather a casual conversation here and there
in my head loaded with questions.

feeling like I must be that bad if this is what and how I must live....
catastrophically ill child
long distant marriage
tight finances

finding it hard to be grateful, prayerful, full of praise and worship among all these angry/bitter feelings....

and so I go to all of you to pray on my behalf?

my apologies...I certainly don't deserve your time and prayer when I myself am not doing it.

I will....I must get back on track....

I haven't gone to church in months...
and I do really miss Mars Hill

I haven't opened my bible in months...
but will try and attend a study this fall.

I need to get out of my funk...
but can't alone.

I haven't turned my back on God...
that would make the enemy happy and give satisfaction...

rather I just have to make it through this period
 of adjustment, and I am admitting I am struggling.

I hope my tomorrow's are better...

know for now...

if you see me...

the smile is fake
the laugh is fake

if I could I would burrow my head and wake to a new life....

so for now I will fake it...
while I smile on the outside and cry on the inside.

only a few days home...

We arrived safely back to Gig Harbor, WA on Tuesday. We ended up staying in Portland, Oregon Monday night and had a great dinner at my brothers place and the kids got some good Uncle time.
The road trip home from Portland to Gig Harbor was a very quiet one, with only Hudson with us.
The other 2 road with my brother later that day, which gave me the afternoon to unpack the car and get some things put away once we were home.
Happily, I have accomplished getting all the laundry done and put away, food back in the house, school supplies bought, Hailey a hair cut, dog fluffed and puffed,play dates for Hunter and Hailey with their best friends, doctor appointments made, Hudson a buzz cut, and tonight a crock pot of chili simmering and getting ready to go to the school kick off in a hour.

It's like we never left....

and there really is no place like home...

but along with adjusting to being home and getting things in order after 2 months of vacation...

we will have to prepare our hearts and heads...
because after being a family unit for 2 months...
we will be taking Paul to the airport on Saturday...

I worry...

about him...he keeps telling me the kids and I have each other (which helps make my end easier)...I know it will be unbearable for him to open the door to a home where the kids and I had been the last 2 months...
and now there will only be silence...
and sweet reminders of all we did there...
and trinkets of our summer months together lying around.

My mom is leaving for 2 weeks as well...
I too will be a bit more alone than I usually am when Paul is gone.
I don't mind being alone, I just hate feeling alone...


So please, if you could, keep our family in your prayers...

as we go...

back to the way it was...
back to being apart and on our own.

Just have to say...

What I already knew about my littlest H...

Such an angel...

Today is day 3 of our road trip home (just left Boise, Idaho)...

For now I will say there have been a few hiccups along the way,primarily day 1, i.e. not getting into a hotel until 2 a.m. which was not by choice...

my kids are amazing little people...
if I may brag...
but my littlest H has no understanding of our road trip and the crazy occurrences along the way, and yet...

he sits in his car seat for hours

sleeps quietly and peacefully (even on couch cushion made bed)

still no vomiting

He can't talk, ask questions, he is not capable of understanding surroundings and circumstances...

and yet he goes with the flow...

and if you could see all 3 H's as I type this out on my blackberry...

all 3 are peacefully sound asleep ;)

Blogger Buddy Award

Jen passed this to me,  and so I am to give my readers 7 tidbits about me ...

1. 
   
   I love to cook, and I love it when friends and family love my food. I stink at baking, but I don't think one can be a good cook and baker...2 totally different things!
2. 
   
   I would love more kids...but sadly 3 is it.
3. 
   
   I am a home-body...love a clean house, candles and fire burning, smells of yummy food cooking, decorations up for every holiday...I make a cozy home and love being in it with my family!
4. 
   
   Paul and I were together 9 years before we had our first H
5. 
   
   I am half Polish, half Hungarian
6. 
   
   I fear spiders, hate feeling alone, hurt deeply when my kids hurt, scared of lightning and wind storms, I am a self -confessed worry-wart, my biggest and greatest fear came to fruition 3 years ago...having a sick child.... before Hudson, I always said, "If you have your health you are the richest person in the world" After Hudson..."If you have Jesus, you are the richest person in the world"
7. 
   
   My faith in Jesus is what sees me through the day...I dream of the day I will be before Him and in the presence of a whole Hudson.

(I realize I stuffed more than 7 things about me into 7 statements...go figure, I like to talk!)

So, now I have to choose 2 bloggers to pass this on to....

I think I will pass this to Jeff....I completely admire the few men in this bloggy world, who expose and share their deepest feeling. ( for us gals this is easy, comes natural! :) ) and Jeff is one of those guys you can't help but admire as he shares his struggles and triumphs regarding his son, Dawson and his battle with seizures.

Alicia is the other...she is always so encouraging no matter what she is going through, and I admire her strength and tenacity as she juggles a full house of 4 boys. Her youngest, Gavin, is an amazing little boy with a soul and spirit that runs deep...a fighter just like Hudson.

I look forward to reading a little more about you two! :)

it must be a sign...it is time (and a bday story)

Hunter had a fabulous 9th birthday...thanks to all who left birthday wishes for him, he read every single one of them and felt very special. He said it was his best birthday ever...and we had a great time as a family too!
SO happy we stayed put, and didn't go to CA. theme parks...mainly...Hudson.

Hudson's "off" mood has not gone away. As always I am constantly hypothesizing as to why the behavior change. Let me see if I can describe his mood....

he is wild...constantly moving, and it is not *weird* or unusual movements (chorea) it is a restless, constant in motion, wish I could make my body work for me, kind of moving. Lots of kicking and when I try to feed him at times he grabs and yanks on the extension...almost pulling it right out of his belly. His feet have even almost kicked it out! Feedings have been stressing me out!

he is loud...vocal, not quite a cry but not a *happy* vocal. More of a whine, uncomfortable, something is bugging me vocal. Sometimes there is a little tear built up in the corner of his eyes.

his sleep is interrupted...some mornings he wakes early kicking and whining loud. He woke at 11:30 last night screaming, whining (no major tears) just seems uncomfortable. I gave Tylenol and he slept through the night.

It is very unusual for Hudson to not sleep well. He is pretty solid in the sleep department.

In the last  week he has also had some weird episodes that have happened twice.
Yesterday morning he wakes...whining, kicking, etc. After about an hour of it, he went into this full out crying...like a baby crying really hard, something really hurts, and then he starts trying to catch his breath. It is that sound after a kid has cried for hours and then they kinda hiccup or take loud, deep breaths after a hard cry. You know that sound? I don't know how to describe it, but Hudson isn't crying for hours to cause that to happen, but he is really, really upset. Even when he would have 2-3 hour crying jaggs, he never did that weird breathing thing afterward. Really kinda freaks me out. I am left to think he is overtired, because yesterday he woke at 7 a.m. (very early for him) and after the episode slept until 12.

So what is causing all of this?????

My thoughts....

*possibly teething pain ( do they still have teeth coming in at 3 years???)

* needs PT....maybe his muscles ache or are stiff and sore due to 2 months vacay?

* home-sick?  :) I know I really miss my bed and fresh air...maybe H is tired of the air matress!

I am lost. At first I thought this new, active Hudson was great....but when sleep gets interrupted, when he is trying to catch his breath after getting so worked up, when he is so loud and whiny...well, I am thinking this is not so good.

If you are wondering about seizures...

of course there isn't a day that goes by that we don't see the monsters, but they are still much better than before we left for Vegas. I am not seeing any clusters at all, which is great, and I believe is the reason he is not vomiting....which has been a beautiful, beautiful thing! He seems to have single seizures. It would be wonderful if the infantile spasms were letting go of their tight grip over my little H....won't hold my breath though. I think I will try and get some video of Hudson's behavior if this continues and send it to Dr. S
I am really hoping we can see him once we are home and settled. I think it is time to eliminate some seizure meds...he is on 4 right now and has been for some time.

The count down is on...
we head out of Vegas on Saturday....
back home...back to the "real world"...back to me, myself, and 3 H's...

it's time

(boo-hoo!)



****

just realized I forgot a birthday story by Hudson ...

this is for all the moms of sn kiddos...

toward the end of our fun day at the Adventuredome, I realize *that smell* is coming from Hudson.
Shorts are showing saturation...I knew it was going to be BAD!
The Adventuredome restroom was packed and as soon as I saw the changing table where the sinks were I fled.
I prefer...I LOVE...the changing tables inside the handicapp stall...whoever came up with that location...they get my 2 thumbs up!
So I weave through the gobs of people that walk like they have rocks in their pants, and decide to take the elevator to the lobby...thinking less crowded, possibly some privacy. Walked in and saw the changing table hanging on the wall by the sinks....less crowded....so I decided I must tackle the mission.
By the time HUdson was on the table, stripped, poop everywhere, head hanging off the table, legs kicking walls...me trying to keep his body ON the table, poop smearing everywhere, beads of sweat dripping off my face...because I feel ALL the eyes....all the onlookers...as they stand in line for a stall, or wash their hands...and there is Hudson and I....kid too big for a changing table, poop everywhere, loud kid...kicking kid....LOTS of onlookers....it was the worst...especially when I was reaching for a clean pair of shorts out of the diaper bag and the entire stroller flipped over....

then when the show was over...one of my "fans" was in the elevator, starring at me, speaking to her grandma in a foreign language about the incident, both of them now starring at me...honestly, I wanted to belt them one!

but wait there's more....

Hilton hotel for dinner and I need to use the bathroom this time along with the other 2...so all of us head into the handicapp stall. After all 3 of us are done...I notice that smell, Hudson did it again....this time NO changing table in sight. Know what I did? layed down a bunch of seat covers on the floor and changed him on the bathroom floor in the handicapp stall....
NEVER in a million years would I think I would do such a thing BUT I was exhausted, couldn't handle anymore eyes on me,
and when I reached Paul I told him how lucky he is he never has to deal with the crap I do, and then ordered me a Mai Thai!!!

random bits of our life lately

Am I overprotective or is this CRAZY?

Tonight we were sitting on our porch enjoying the sunset while Hunter was skateboarding. A boy that the kids had played with in the pool yesterday walked up to him and they started chatting away. As it was getting dark, I realized there was no parent to be seen. I asked how old he was, and he said 7.
I would NEVER let my kids be out, by themselves, talking to whom ever and no knowing where they are. The boy wanted to come in our place and play with Hunters stuff. I was fine with it but told him we need to let his parents know where he is and ask them if they are ok with him coming in our house. As we walked toward his house we met up with the dad. I told him I thought he should know where his son was and let him know I would walk him home when they were done playing.
So the boy came over.
First....thankfully we are nice people, love children....but as a parent I just can't imagine letting my kids got to someones house where I don't know the parents, let alone run around at dusk alone!
Crazy! In my mind this is how kids get taken, stuff just happens.
Bottom line...while we are here, the kids are in my sight and at MY house at all times!

***

We had a ton of fun while mom was here.

The first day, we went to Ethel M. Chocolate Factory Tour

in the pic there is Hailey, Hudson, Mom, Hunter and Katelyn

Nanna got them a M&M cups and dispenser...happy faces!
after that we all went to King Put Golf. It is pretty cool...dark inside and everything glows in the dark...the kids loved it so much we went again today with Dad

the second day my mom was here we went for sushi and laid at the pool
the third day we went to the strip and my mom took the kids up the Eiffel tower at the Paris Hotel.
Hudson was having a "off" day so I stayed behind and tried to throw a few bucks into the poker machine until Hudson and I were kicked out (no kids rule)

(me and the kids in Paris...can you tell Hudson was miserable that day)

One night my mom and I went to the Red Rock Casino after dinner. Just her and I...that was the best part of the entire visit. We played some poker machines and had many good laughs...the best was when a cocktail waitress asked if we wanted a drink and when she brought them, I wanted to use my debit card, and pay for me and moms drinks and the waitress started laughing as she explained they don't charge for the drinks ( you just give a tip!) I had no clue! Tells you how often I get out!!!!!

The weekend before my mom came, we took the kids to the Hoover Dam.

(I think Paul and I were a bit more excited than the kids)

and Paul took them on a short hike in Lake Mead

Today was another busy day...
Hunter was promised a trip to Hash House a Go-Go for breakfast. (another man vs. food restaurant)

We got in fairly quick considering we were told 30 min wait. People take cabs from the strip to come here and by the time we left the place was jammed...at least an hour wait. We lucked out, especially because Hudson's mood was iffy.

Their motto is "Twisted Farm Food"

The kids shared a snickers flapjack...YES, I said Snickers, like the candy bar!
They make huge waffles and the bacon is placed in the middle coming out the ends! We will have to try that next time. Definitely a fun spot, and the food was good too!

***

tonights pics on the porch...my Hailey Dee

***

A funny...

Hunter has no idea what is planned for his birthday on Sunday.
When this boy was over tonight I heard them talking.
Hunter told Damien that his birthday is tomorrow.
Damien asked if he could come to Hunter's birthday party.
Hunter said "I am not having a birthday party, I don't have any friends here"
Damien .. "Well, now you have a friend!"

Hunter thinks we have no plans...
little does he know we have a fun-filled day all mapped out!!!

***

August 15.......

A very special little guy was born 9 years ago. The first time I laid eyes on my own, my very first, and fell madly in love, a love that any parent knows, is indescribable.
God has blessed us with such an amazing boy, who has a huge heart and the most genuine, loving spirit. It seems like yesterday I met him for the first time, and yet nine years later, here we are...he has turned into one of the funnest little people I know, and some of my most treasured moments are just hanging out with him and talking...laughing...acting silly...we don't have to go anywhere or do anything to have fun...just being together, being his mom, his confidant, being ears when he needs to be heard, arms when he needs hugs, praying with him and for him ..it is a bond unlike any I know...I am so thankful I was chosen to be Hunter's mom.

2 quotes of the week...

From the table next to us at the sushi bar, a middle age man and woman eating lunch notice Hudson..."What a good baby. I remember my kids that age, and they never sat so quiet in their stroller!Is he always this good... it must be nap time!"

The lady with 2 boys (guessing age 5 and 3) at the pool..."What a good baby. I can't believe he just sits in his stroller, most babies would want to get up and out of their stroller. You are so lucky!"

feeling sad...

a bit edgy, but mostly just sad and teary-eyed.

I am not sure why (it has nothing to do with hormones/monthly issues)
but i have been thinking about things and it could just be a lot of different things

It could be...

my mom just left...took her to the airport this morning, she was here for 4 days and we had fun...we always do.

it could be...
knowing my time here is coming to an end...like another week and we are leaving.

it could be...
Hudson had a bad day yesterday, seizures and irritable, hasn't pooped in 4 days, and today seizures have been a bit ugly too.

It seems today I think about Hudson, look at Hudson, and tears well in my eyes. I just hate how he suffers...on a daily basis. It feels like I am only capable of seeing so much (the seizures, tears, screams of discomfort) never joy, never have heard a giggle...the pain of it all just catches up with me and then i guess I have days like today...and then I think it is probably healthy for me to just cry, because then I can cope with the next seizure, preparing the next round of meds, etc. I see boys that must be Hudson's age, running around the pool and think it should be Hudson...instead he sits in his stroller, and I can't help but feel sad.

I also been thinking about my dad....and just feeling sad that my 3 year old self lost her dad and doesn't know what it is to have a father/daughter relationship.

I am sad that I have to say goodbye to my husband in a few more weeks and that my kids have to say goodbye to their dad. This is our life.

i am sad that I have to go back to reality and say goodbye to...swimming, sun, palm trees, fun.... and hello to...doctors, therapists, homework, school, and then do so all by myself. Again...this is the hand I have been dealt...this is my life.

I just feel sad...bottom line...maybe the 2 month escape from reality was just that...an escape...and knowing I have to deal with real life...well, I just don't want to.

Yet, i know I am lucky to have much of what I have
BUT my sick baby just sometimes drains and zaps any and all happiness...the pain is overwhelming at times.

I did get 2 nuggets of happiness within the last hour....

I found out  both my kids got the teachers they wanted for school and my husband  just came home from work and brought me home bright orange sunflowers...how could that not make me smile?

revisiting an old trick

I am always left to assume any and everything with Hudson.

My assumption these days...

Hudson's seizures are less intense.  He is having a bit less and definitely notice a decrease in tonics.
This leads me to believe the change in sezizures is why I see no vomiting.
I believe it may be why he is a bit more noisy, and why he is not as sleepy throughout the day.
I also believe this is why he is moving more, and also why I can't leave him on the couch or bed or anywhere...he actually scoots enough where I have found his feet and legs dangling off the bed after being put in the center.
Lately though.....actually 3 times in the last few days, when I put Hudson on his tummy....

he has gotten himself to rollover to his back!!!

Seizure riddled Hudson stopped this trick. I would put him on his tummy and he would whine and hit his face a couple times into the floor and eventually give up. He just didn't have the energy or know how, to put it all together to roll over. It hurt. He has regressed alot with all the string of hospital stays and illness over the winter and spring. Then throw massive, hard seizures and he was noodle-e all the time.

This is not to say Hudson is not riddled with seizures daily, he still is, but less intense and frequency, seems to have given him a little boost, and a "hello" to rolling over!

(and we don't have many "tricks" in our bag)

*it* happened...

I wish *it* was something good...
a milestone, an inch-stone even...

no, *it* is no Hudson accomplishment...

*it* may be because Hudson is just getting bigger
*it* may be Hudson not interacting, not giving eye contact...

all I know is *it* bugged me when it happened and *it* was on my brain when I woke this morning...

which is why I must purge *it* here...to get it off my brain, off my chest, and let it go, because...

*it* is.....
 what it is.....bleh!


Fun night planned with the kids. Ceasers Palace Forum Shops...dinner at Planet Hollywood, see the statues come to life, walk to Treasure Island to see the pirate show outside, drive through the strip so the kids could see it at night...home.

The evening was great...however, *it* started our night and got under my skin and hovered in my brain throughout the night...so, what is *it* you may be asking?

We get on the elevator from parking level to casino level. A man gets on the elevator with our family.
He was nice, but, instantly focused his attention on Hudson. Gets his face in his stroller and starts the "hi little guy" talk....I know I have voiced before how I cringe when people try to talk and interact with Hudson. Well, being on a elevator makes it sooo much worse...you can't walk away, act busy, or be in a "rush"...

I had to stand there and pray the elevator would slide open before he would continue and continue....
I put my hand on Hudson's head as Hudson looked away from him and clearly heard his strange voice and was squirming in his stroller.
Before the elevator could slide open, Mr. Friendly asked what no one has ever asked me...

"Is he a special needs kid....does he have CP?"

I instantly chimed "no, he doesn't have CP.....he suffers from seizures due to mitochondrial disease"

It bugged me that he knew something was wrong, it bugged me he thought he had CP.
Trust me...I know mito isn't any better of a title than CP...in fact, it is probably worse being that it is a degenerative disease leading to death. It was just the fact that it was obvious to him something was wrong, and then he tried to label it. It wasn't the typical reaction..."oh, it must be nap time, he looks so tired" that is what I always hear from onlookers.
This guy did tell us he works in a hospital and he even said he knows a boy, older than Hudson, who suffers from seizures due to mito. So, he is medically "in-tune" I guess...but still...


I went from wanting to escape, to wondering....
 is it that obvious?
how did you know?
does everyone look at him and think this?

I mean it is "gutsy" to ask...ya know?


When on the strip I heard a young couple who had a child...the guy.."wow, look at that rig, that is one stroller I have never seen!"
I felt like saying....Wish I didn't have this rig you dumb ass...you just don't know how bad I wish my kids was in your cheap umbrella stroller!"

I study people's faces as I am strollering Hudson. I can't help but wonder what they are thinking when I watch them stare at my boy. Do they know? Are they wondering what is wrong? Is he seizing...is that why their eyes are fixated on him?

I also wonder if I did that to other parents of special needs kids. Did I ever make a parent wonder or question what I was thinking. Did I ever try and talk to a child like Hudson, only to make the parent cringe and escape? It is all very possible....I truly don't know.

Time to let *it* go...or at least try...

I am sure this is only the beginning of *it* happening....
maybe it will be a relief....
because when it is more obvious to the outside world there is something wrong with Hudson...
I am sure they will just stay away...
not try and interact with him...

but as for the first time.......

*IT* really sucked!!!!!



*************

(mom just called asking for last nights pictures....sorry folks)

after much consideration...

we are not going to do Legoland after all.
We were set to book the hotel last night, and then Hunter came running to me and asked me if I had seen the commercial for Circus-Circus...
I jumped online and well this is what I found....

considering the 5ish hour drive (gas) then hotel for 2 nights, and the cost of tickets and food, the heat, and the uncertainty of how Hudson will handle it all...

Circus-Circus looks waaay less stressful...

all indoor and air conditioned, looks like plenty to do, a fraction of the cost, and we are close to home...

it just seems like a better option..... we can have a load of fun at a fraction of the cost and way less stress, and in our world stress can override fun!
We can always add the Shark Reef Aquarium at Mandalay Bay if need be. We will also uphold tradition and take him to Bennihana for dinner...I think it will still be a great day!
Oh, and thanks to my dear friend Marylynn, who tried to help alleviate the cost of Legoland by sending me a coupon for a free child admission...I got it yesterday and will return it to you when I get home...thanks, again!

I do feel at peace with this decision....especially knowing in a few weeks we will be heading back to WA, another road-trip, more hotels, gas, and food on the road...it all adds up quick!!!
********
I got an email from a fellow mito/seizure mom, Shawna, asking if I was going to the mito picnic this weekend...I am really bummed to find out I will miss it. I have never been, and it would be a great way to meet others in our shoes. Really don't get many opportunities like that. Hoping that I can go to the auction in September...it is always a matter of childcare for these things.
(Heidi...are you going to the picnic?)

Another beautiful, sunny day here in Vegas....kids are all still sleeping :)
*************

Got this from fellow blogger's site...
a good read for any parent...special needs or not...it is just raw, real and honest...just what I like.


love to all....Deb

staying focused...

on Hudson...

I realize getting away from home, has meant getting away from much that is medical.
It has meant taking a break from therapists, doc appointments, runs to the hospital for Rx,etc.

It has turned my blogging into a vacation, and not all things Hudson...and this blog is essentially about Hudson. So....

I will try to seperate the two...
staying focused on the little boy who runs my ramblings on this blog...
and end with some pics for my family that need their dose of "H" pics :)

Hudson has had a interesting couple of weeks.

First...

he has had weeks of NO vomiting. It has been a nice break.
I try and study and figure out what makes the change...what determines days of pukes and what doesn't.
Seizures, I believe are the major factor in this mystery.
So it leads me to believe his seizures have changed since we got here.
What I see is not quite as strong of a seizure as he was having...not holding him as long, as tight, and no *large* cluster of spasms afterwards. I am still seeing several quick single spasms throughout the day, and sometimes what used to be the "big one" looks like the start of one then just turns into a spasm like seizure.
Anyways, bottom line in my book....no vomiting means seizures are not as bad as they were, at least not taking that toll on his body.

Along with the seizures changing since we have been here as also been a very "active" Hudson.
He is moving like crazy...it is weird...just not as complacent, not as "out of it" as he usually is.
He is loud and vocal and scootches in circles on his back.
An example...
we brough his booster chair (typical not medical) which we use on the floor here in Vegas. We never buckle him cuz he is not on a chair, just floor. Over the weekend Paul had put him in it in front of the t.v. and a bit later he heard Hudson moaning and groaning...Hudson had gotten himself out of the chair and was lying on his tummy on the floor, face down...and mad!
Yesterday I out him in his chair, went downstairs to the kitchen and after a little bit heard him moaning and groaning. The other 2 H's were up there with him and I yelled up to them asking if Huds was o.k. and they both chimed yes. Well moaning turned to crying...I ran upstairs and hudson had his head hanging over one side of the arm of his chair and his legs hanging over the other side...the other 2 H's had their noses in their DS's....I don't think they ever looked up when I asked if he was o.k. go figure!!!

So this is Hudson starting to do his acrobatics in his chair...now if I walk away I clip him in, and he protests...doesn't prefer to be buckled....at all!

So this is just very odd behavior for Hudson. He is usually so calm and complacent.

My hope is this is positive behavior...but who knows.

He has been very vocal at night which is unusal. Sometimes I think it is part of him being overtired...he doesn't really nap during the day. At home he was much more sleepy.

It will be interesting how he will behave when we get back home.

Hunter's birthday is August 15. We are planning to suprise hime with a trip to Legoland

I am concerned how this will work with Hudson. I want to be able to be a part of the fun with my kids, as a family, but I really can't imagine Hudson can be held on rides. I am pretty sure only one of us will be able to go on rides with the other 2...and that kinda blows. I have thought about Paul taking the kids and I staying  here with Hudson, but I know Hunter wouldn't want that. I did call the park to see how they work with handicapped. The guy said everyone 3 and up has to be ticketed...I asked even if he doesn't know he is at a amusement park,doesn't go on rides, I still have to pay for a full price ticket for him??? Yep.

What a waste of money. Think he can get away with being a 21/2 year old????

Then I found out we can pick the rides we want to go on and make reservations so we don't have to wait in line. Just feeling hesitant about Hudson + Legoland....what to do?

The curse was lifted and we had visitors all at once...

Pauls cousin, her husband and their boy...

Paul's Uncle Arthur...

My brother...

busy bunch of days and lots of fun...

more strip, lake mead, lots of bbq-ing, and playing in the pool.

Now we are hoping my mom will come soon ....Jennie the dog is improving, so she may come with Kate and Fred will care for the dogs. Fred is managing with his broken shoulder.

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Pics for my family.....

                                                                                    

Kids with their cousin Michael

Marcia (Paul's cousin) Ron, Marc, Hailey and Paul

MGM Grand...getting ready to look at the big lions with Uncle Marc

outside the MGM

M&M Store on the strip

Uncle took them for some fun at Game Works on the strip

outside NY-NY Hotel with Uncle Marc

Hudson on Hudson Street

Jelly Belly Statue of Liberty

Lunch at Lake Mead with Uncle Arthur