Visitors...?

Happy to report Hudson's eye issues are resolved for the most part.
I appreciate all who chimed in on thoughts and suggestions.
The morning I posted, a friend of mine emailed me with info and pink eye remedies and mentioned that she had horrible allergies when she was in Palm Desert.
It hit me...that was exactly what Hudson's eyes looked like to me. With pink eye I have always seen this coating that matts the eye and eyelashes and didn't have that with Hudson. I was seeing crusties but it was forming more from the drops the doc had given me, but the goopy stuff in his one eye...that has happened to me when I am around cats or severe pollen.....and it hit me, ALLERGIES!!!
I got some Benedryl and Clear Eyes, eye drops and it started clearing right away. They are still a little red, mostly just some veins in the eye, but about 90% better.
Can you imagine though....how bad his eyes must have itched, and the poor thing couldn't even itch his eyes...I really can't imagine...it goes to show he just tolerates so much discomfort as if it is his norm. I am wondering if his "off" day of crying when we are the Nascar Cafe wasn't his way of voicing his discomfort...then he just gave up. Breaks me.

It has been a weird week. We had so much planned with family coming here and it seems so much has just fallen apart. After being here a month....no friends (for me or the kids) no family, I was really looking forward to seeing some familiar faces. We have had alot of family time as far as the Austin 5, but it not "normal"
Dad goes to work but there are no playdates like at home,summer VBS, etc. the kids just have each other. It has been good, don't get me wrong, it's just a bit extreme. They are either best buds or bickering and pouncing on each other.
At times it is a little bit isolating. I guess in our world their is just no way of getting around being unbalanced.
We have had lots of well needed, well spent family time, but obviously there is no Paul and Deb time...at all!
We are lucky if we can sneak to the patio with a glass of wine when Paul gets home to sit and chat...within minutes the gang is joining us. Sometimes we just have to tell them to give us a few minutes alone.

Anyways...last week my brother never came. He had an issue at work and the timing wasn't good.
The kids were pretty disappointed...me too, but I know my brother so well so it didn't surprise me.

My mom and Fred have been planning to come the first week of August. Fred's daughter was going to watch all 3 dogs, and then something terrible happened this last weekend. My mom's Golden retriever, out of the blue started having.....

SEIZURES!!!

I couldn't believe it. My mom had her at dog hospital over the weekend not knowing what was wrong. She holds a very special place in my moms heart, so understandably my mom was/is devastated.
They put her on phenobarbital (whoa...Hudson was on that) and my mom says she is loosing her bowels in the house and is having trouble walking. Clearly my mom doesn't feel comfortable leaving her dog.
I guess when they found out she was having seizures Katelyn asked my mom if the dog has what Hudson has...no the dog doesn't have mito...and no Hudson didn't "give it" to the dog....
poor Katelyn...she just knows the dog is having seizures and Hudson has seizures...

but really...seizures have to plague one of our dogs now? Oye vay....bleh!

So, I completely understand my  mom not coming. I texted Fred just to let him know he is more than welcome to hang out even though my mom is unable at this time.

Then, I get a call Monday night, it's my mom.

Apparently Fred had spent the entire weekend pruning and weeding out yard. We have a pretty large front yard, and it has been badly neglected with Paul being in Vegas. I guess Fred's plan was to take video of our house and bring it to Vegas and show us what he did. My mom has told me it looks amazing.
Well....the call...
was to tell me about the surprise because Fred fell off the ladder pruning a very large, overgrown tree, had chainsaw in hand, but was able to throw it before landing on his shoulder. He went to the doctor and broke his shoulder in 2 places!!!! I couldn't believe the news.

So...dog seizing (who is my mom's 4th child) Fred broken shoulder laboring over our house. (found out not only did he prune, weed, he also power washed our deck and furniture, and our driveway!

This week Paul's family is suppose to be here on Wednesday. Monday night we found out his Uncles mother went into the hospital because they found a spot on her liver and he doesn't know this because he was out of town on business. We were suppose to go to Lake Mead with him this weekend...of course we now don't know if he is coming. When we wake tomorrow, hopefully the kids will have their cousin Michael here to play with them through Friday.....Oh thank god! They need him....I need him! :)

Possibly my brother might come up this week too....I won't hold my breath!

So yeah....just weird, crazy stuff going on. I like peaceful, uneventful stuff....not this mayhem.

As far as our latest outings and happenings.... (because my mom says where are the pictures, update your blog!)

We took the kids to the strip over the weekend and did a bit of walking. We went to Mandalay Bay Hotel which I would love to stay there. Their pool area is amazing...they have a "beach" and there are big waves the kids can ride, and they have several large pools and a raft ride. It is one of those places I would love to take the kids but with Hudson it is simply impossible.
They also have the Shark Reed Aquarium, which the kids really want to do but it would have cost close to $60 to get our family tickets, so I need to search online for discounts.

Mandalay Bay Hotel

So we hit 3 hotels that were all connected to one another, which was great for Hudson's sake and not exposing him to the heat.
After Mandalay Bay we went to the Luxor. Hunter went crazy...he thought it was unbelieveably cool.
I had never been in it, so I actually thought it was pretty neat too.

Hunter wanted a ton of pictures at the Luxor...he thought it was pretty awesome!

After the Luxor we told Hailey we were taking her to a castle. Hunter told her when she entered she would turn into a princess...well Hailey was now the excited one!

The Excalibur

This is a much older hotel, not too exciting to me, but we had fun looking at all the gift shops and the kids had fun fooling around...

big gambler

On Sunday Hailey lost a tooth that had been bugging her for a while. She wiggled it daily and it finally came out.

So she begged to go to U-Swirl for frozen yogurt to celebrate!
I caved....cuz I like that place too! :) Paul and Hudsie stayed home but we brought one home for daddy.

That is the "bar" of toppings for your yogurt!

Hailey has many theories about the tooth fairy, which was topic of conversation over our dessert.
 One thing she wanted to know was why the tooth fairy always gives her 1 dollar bills, but her best friend Victoria gets 10 and 20 dollar bills. She just for once wanted 1 bill with a 10 or a 20 on it....not a 1!!!!
So she pouted the next morning when she found 4 $1 bills under her pillow...I think the Las Vegas tooth fairy lost her big bucks at the casino!

Finally...
we had an interesting Target outing on Friday. A gal stopped me as I was shopping and asked me if Hunter and Hailey were my kids. I said yes, and she asked if they have ever done modeling or if I thought about getting them into acting. Well...Hunter's eye balls got sooo wide...he chimed in...."YES...I have always wanted to go to Hollywood and be on t.v!" She asked their ages and said they have a unique look, character-like (not sure if that is a compliment) and would I be open to having them audition for commercials or modeling...she gave me her card which said she was Director of Scouting for a talent management company. I kind of told her we don't live here full time, but she still wanted my cell #. Hunter was so excited about this. He has asked me every day if she called. She did call yesterday but I didn't answer because I didn't feel like dealing with it at the time...now I am wondering if I should have picked up.
Anyways, it was neat for Hunter and Hailey was cool with it, but not nearly as excited as Mr. Hollywood!

So there you have it.

Please...prayers for Fred healing and not too much pain these next few days (yeah right!) and any dog lovers out there...say a little one for Ms. Jennie...I know she is a dog, but she means alot to my mom and it hurts to know my mom is hurting.

I almost forgot...
my blackberry picture of Hudson.....still enjoying the pool!

He really does enjoy it!

What would you do?

Your mito kid vacationing in Vegas is still waking up with red eyes after having a daily dose of drops for the past 4 days! The goopy layer looks better, but there is still a little bit of crusties in the eyelashes.
The urgent care doc said to call for a eye doc referal if it didn't clear up after 3-4 days.

You have added antibiotics (14 day dose) a day ago just in case a viral bug is swimming through his body.

Every time you put the rx drops in his eyes it irritates him and makes his eyes initially redder and more irritated looking.
His disposition hasn't changed except when he is voicing how he hates the eye drops.

You are wondering if the dry weather and sun could be a contributing factor and wonder if you should get over the counter Visine...it claims to "get the red out!"

and you know, he has become quite the pool lounger these days, and seems to enjoy this dry heat...

(blkberry pic)

So....

what would you do?

*give it more time

*call the UC doc to get a eye dr referal (bleh!)

*try Visine eye drops along with antibiotics and the rx drops

*tell yourself to stop worrying so much (?) it can't possibly be anything more serious, could it?

SUGGESTIONS NEEDED .......

alot of fun...a little not-so-fun

For the most part things are still going well.
It has been really, really hot.
So hot, that over the weekend there was a "extreme heat warning" placed over Las Vegas.
I think it hit about 115 degrees. Last night at 10 p.m. it was 103 outside!

So the fun...

last week I promised the kids 2 things...
bowling and frozen yogurt

the not so fun....

after getting a bit lost inside the casino trying to find the bowling alley, right as we made it and find the counter to pay Hudson has a huge seizure and vomits all over himself. I thought I was going to have to turn around and go home, but I couldn't bare the thought of disappointing the other two.
Hailey ran to the restaurant and grabbed me a stack of paper napkins and I dried him up as best as possible...his shirt was soaked in stinky formula, but I figured he probably would pass out because of the seizure, and wouldn't know the difference. As you can see, we stayed and played.

Hudson was out of it...can you tell? Can you see his pukey-drenched shirt? :(

It gets a little bit worse...

I left Hudson's diaper bag in the car, and as the bowling went, I noticed Hudson smelled like sour milk and poop...sure enough a loaded diaper with no bag! Ugh! By the time our game of bowling was over H was squirming, and whining, and I can't blame him!
I had to change him in the 100+ degrees heat in the trunk of my car...thankfully there was a nice strong breeze...
as I pulled off his shorts the poop smeared down his leg. He lost his shorts and now was in a dried, stinky throw-up shirt.

A yummy fun...
we still went for frozen yogurt and it was soooo good.
Ever been to a U-swirl? You make your own delightful dessert and they charge you by the oz.
they have every topping imaginable...my kids are still talking about it and wondering when we are going back...

Hudson even had a taste of my chocolate concoction. I have to be careful, because he doesn't like anything hot or cold...it really can set him off, but as he got used to the little tastes he was lapping his tongue like a little puppy,  it was pretty cute.


Lots of Nascar Cafe fun and a little MAN vs. FOOD ....

Man vs. Food....one of Hunter's favorite shows on the Travel channel. He has been begging us to go to the Nascar Cafe at the Sahara Hotel since he saw the Las Vegas show and Adam Richman trying to take down the 6 lb. burrito. Hunter was sure he could do it (even though Adam couldn't) and get his picture on the "wall of fame"
Saturday we took the family and we had a blast. The kids eyes were popping out of their heads...they think the strip is super-cooool!

This is Hunter in front of the "official" table

When we sat down Hunter told the manager he thought he wanted to do the "challenge"
but wasn't sure he could actually eat the whole thing. The manager laughed and told us there was a
"sister" B-3, that Hunter might be able to handle.
We sit down to the menu and both kids say they want a burger! A Burger???? After all this burrito talk?

So the kids shared a burger and Paul got the mini B-3 for all of us to taste

but Hunter made it look like he polished off the whole thing on his own...such an actor!

When the manager walked over and asked Hunter if he finished his mini B-3, he just looked at Dad, and Dad told him he did very well and Hailey piped in that she helped, and so.....

 he gave the kids Nascar T-shirts!!!! They were thrilled!

and I was pretty happy for them too!!!!



Another fun part of the day...

3 guys walked up during our lunch and sat at the "man vs. food"

so we got to see just how big the B-3 is.....omg....it is HUGE!!!!!

these contenders get 90 minutes to take it down, get their pic on the wall of fame, and the burrito is free, plus they get to ride on the Sahara roller coaster free for life!
They don't meet the challenge and they get a pink "weenie" t-shirt, have to pay the $20 for the burrito and get their pic on the wall of shame. The burrito eaters were drawing big crowds, we stayed and watched for about 40 min, then decided there was no way we were getting our free bar drinks that the mgr said everyone would get if one of these guys got it all down. They were looking pretty sick and full!

I think the big red can may be for those who can't keep their burrito down!

Another highlight was seeing cousin Monica. She drove from CA with a bunch of friends but spent the afternoon with us. She met us for lunch, and then came to the house and we had a light BBQ, and then Paul took her back to the strip that evening.

The not so fun part of our day...

Hudson was having a "off" day. My guess was that he was quietly up all night, and fell asleep sometime in the morning. At 10:30 a.m. I woke him so we could go to the strip and it set him off. He was crying, restless, screaming, all day!!! I just knew if our first outing to the strip with him wasn't a positive experience, Paul would be reluctant doing it with him again. He was very loud and whiney. Thankfully the casino's are fairly noisy, so he wasn't too distracting, but I knew it was bothering Paul and my nerves were getting shot too! Finally when we got our food he fell asleep, BUT every time he would wake he would be screaming. My guess is he was over-tired, because Motrin did nothing, and he slept solid through the night.

and for the last part of my not-so-fun...

this morning Hudson's red eyes opened up with a layer of goop!
I knew I had to get some drops for him, and after getting a "no" from both our PCP and Children's to call it in, I had to take all 3 to Urgent Care this morning. I dreaded it, sitting among the sickies and possibly exposing Hudson to something more BUT the UC I went to was called Take Care Clinic, and it was actually in the back of a Walgreen's store next to the pharmacy. It was only a 20 min wait...
a one man (the doc) show, a little office where he takes all your info (which took the longest) because he literally pulled his eyes open for a half a second and confirmed pink eye, and I got my Rx for drops!
I was relieved it was simple and not in a medical facility. Huge relief!

I would be at the pool now, but they are cleaning it, so I thought an update would be good.
This week my bro should be coming here and then Uncle Arthur is suppose to visit us over the weekend and possibly take us to Lake Mead.

Praying for more fun times ahead, and less not-so-fun...realistically? I know it comes with the territory of having a Hudson...every day is very unpredictable. Today and yesterday have been great seizure/vomit/behavior wise!

Sorry so long...and ALL the pictures...sorry about those too...but I know Nana (my mom) misses seeing those little faces!

Love to all...


oh and just in case you were wondering what the B-3 stands for?
Big-Bad a$$- Burrito!

mixed emotions

playing xbox with Bob-O

We said goodbye to Bob yesterday.

He was packing up a U-haul as I headed out to run some errands.
After he packed his stuff in the kitchen and I reorganized to my liking, I realized most of the things I had been using were his, and so I needed to get some kitchen basics.

I'll admit...
I was gone for a few hours. I LOVE the simple luxury of going anywhere I want without my kids.
It may sound selfish, but having 3, dealing with car seats, medical stroller, shopping carts, "I wants..."
the simple task of parking my car, getting me and only me out of the car and shutting the door and walking......

bliss...

so I went to a little outdoor shopping center I avoid with my kids...and visited Pottery Barn, Pottery Barn Kids, and William Sonoma. Then over to Pier One, Bed Bath and Beyond and Whole Foods, and then finally to the main destination...Target, where I was to tackle my list.

When I came home I found Paul had cleaned the house, done most of the laundry, and had moved the kids into their bath and bedroom.
The U-haul was gone and so was Bob.

I was surprised to see my husband a bit sad over his leaving. He told me before we got out here, he wanted the house for the family and wanted no renters.
But Paul was clearly shaken up emotionally and Bob's leaving triggered emotional changes to come.
He feels like it is a prelude to us leaving, we are next, and he doesn't know how to be here alone after having us all summer. Bob had moved in the day after Paul got the keys. He has really not lived here alone. We still have over a month left here if things continue to go well, so I am not sure why he is so focused on dealing with all of this now...

I find it a bit ironic...

I just want a bit of me time...alone time...even if it is to go to the store alone.

I have lost me since Hudson.

Before Hudson I had balance. I worked out (me time) I went to bible studies, community group,
I just had so much more freedom.
I had the option of paying a sitter to watch my kids.
I sadly admit...
I am somewhat envious of moms that can just put their kids into childcare at the Y, without a thought...I mourn the old me that could do that...I never thought twice about being so lucky to have that option. I never thought about those moms who didn't have that option because of their sick child.
Now I know it was a luxury.
It is one thing to have a special needs child...it's another to have a seizing child with a compromised immune system. People are afraid of seizures (I don't blame them) and I fear loosing Hudson to simple childhood illnesses. So Hudson is beyond special needs...he is a very sick child, with horrible, scary seizures.
So much change occurred with our littlest H...
and with it I have become lost, and sad...so much more sad than I ever thought one person could feel, and I never, ever thought sadness could last so long, but it has...because of the mourning of broken dreams, fears, and unknowns.

There seems to be a place in my heart where sadness has taken residency and nestled it's way deep down. I wish I didn't know this type of ache.
Yet, I would not give my little warrior up, or change who he is for my sake....
he is perfectly who God intended him to be, and continues to make me grateful for every day I have with him, and grateful to be his mom...I am not worthy to know this deep love that is nestled in my heart, right beside the ache of sadness....however, the love and gratitude far outweighs the sadness.

So I find it so ironic that my husband and I want a piece of what each of us holds.
I want a piece of his freedom...to be Debbie again, and he wants his family-to not feel alone.
I guess it is a matter of balance, and we are both very unbalanced when we are apart...
we come together, and the balance is there.

I do fear Paul being alone here....I wonder if our months together will make it harder for him to stay here alone...I support him however and whenever he needs or wants to come home for good. He knows that.

Now that Bob is gone we will be expecting visitors as well.

Paul's cousin will be staying on the strip with friends next weekend but coming over to BBQ, then Paul's Uncle is suppose to come here the following weekend. My brother will come towards the end of this month and my mom and Katelyn will come the first week of August. Paul's other cousin and her family will be up at the end of the month as well.
I am hoping at some point Paul and I can get away for a few hours alone. We have had no alone time at all. Again, if we had the luxury of just paying a sitter we would...but obviously we can't.

Hudson continues to do pretty well. Some bad seizure days and some good.
His whites of his eyes are really red on the outside corners. I am not sure why. There is no secretions from his eyes indicating infection. He isn't bothered by it, so I am assuming it is the sun and dry heat? Who knows.
I have been dealing with a horrible rash. It started on my arms and then on my legs. For the most part my arms cleared up, but my legs still have it and it itches. So I have been avoiding the sun and laying out, but today I think I will soak up some pool time with the kids.
Tomorrow I am going to take the kids bowling...free bowling for kids on Tuesday's at the Suncoast casino. Should be fun for them.
It is suppose to be 110 this week, so we definitely have to find some indoor activities.

That is it for now...
please continue to pray for the health of Hudson while we are here.

products and pics

I have had many ask about the swim device and cooling vest, so I thought I would just post the info here for whoever wants to look into what we are using.

The swim aid was actually ordered by our PT at home, but I found the website where you can find the product. It is probably a good idea to try and get it through a therapist or Dr. so insurance will cover, although it doesn't look too terribly expensive.

The cooling vest we got off the mito website, and I have been very happy with it. I bought it out of pocket, but I got a RX from Dr. S, and a letter of justification from our OT, to submit to insurance for reimbursement...we will see what they do about this one.
 Paul and I were talking about how well H is tolerating the heat, even without the vest, but then we realized we really don't see him sweat, and in this kind of heat you definitely sweat. I guess proof his body doesn't really know how to regulate, even though he doesn't appear to be wilting.

His days have been pretty good, every day is different, yesterday a great day, this morning 2 hard seizures already and vomiting...as always, no rhyme or reason.

For all of you gigglers out there, I was right there with you, i mean the poor kid looks like a pretzel in his ducky bath, and yet he lets me stuff him in it!

We had what Paul calls our 4th child at home over the weekend. Paul's "renter" works for the same co. Really nice guy...but he is what Paul describes as a big kid. He is single and 35, and lets just say I don't have to worry about him bringing girls around here...know what I mean???
Anyways, makes for a great "girlfriend" altho he is not over the top by any means.
The kids LOVE him. He took them to the park (Paul's back went out over the weekend) played in the pool for hours with them and ended the day with XBox, which Hunter has never played...and he loved it, of course! Bob (our big kid) has it hooked up to a theater like system so it is very loud.

He should be moving out this weekend, as he got a promo and will be based in CA. It will be nice to have the bath and extra bedroom. Hudson needs his own space, the kids tend to wake him up with cords draped across his body from the PlayStation, TV noise, etc.

We are considering possibly staying here a little later into August than planned. With things going so well, and some surprise "plans" in the works for Hunter's bday, we may just come home in time to get ready to go back to school. It is hard to plan anything when you have a Hudson in your life, but if things continue as they have, it may be possible to stay and play!

the parks are great because they all have covered play areas, so if we want to take little H there is plenty of shade! (the guy in the pics, is the kids playmate, Bob....or as Hailey calls him Bob-O!)

Bob-O playing in the pool with the kids

Hailey loving on her daddy!