Monday, July 12, 2010

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.

Wednesday, July 7, 2010

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!

Friday, July 2, 2010

not the size of a baby

I know I have said this many times but...

to me Hudson is a baby. A big baby, but a baby nonetheless.
I look at a healthy, active 3 year old, and my mind can't even comprehend Hudson is the same age...
I don't see H upright, on his feet, straight and tall. I see him  as a baby...lying on his preferred backside, kicking his legs and arms...like a baby!
Cognitively...BABY...that's what seizures and a hefty cocktail of meds has done to him, kept him my sweet little newborn...but technically he is the same size as a three year old...cuz he is three!

Anyways, it is a hard, weird, thing.
I think those in my shoes know what I mean.
I cringe at incidences as yesterday ....
at the grocery store with all 3 kids...
Huds in his stroller, Hunter pushing the cart, Hailey tootling along.
The friendly shelf stocker comes walking down our isle. Hudson had just had a seizure and was in his sleepy mode. Grocer guy takes notice of Hudson and mentions how "sleepy baby is", and then asks the question I hate..hate...HATE...

"how old is he?"

thoughts of lying swirl through my head...but my other 2 are standing right next to me and I am certain I would be corrected in front of mr grocer if I dare lie...so I truthfully tell him 3, and try to look busy looking for syrup....mr grocer just stands there looking at Hudson...I could read the bewilderment all over his face...
lying would make it so much easier...but I also know I would get the same bewildered look if I said "he is 1"
so there is no easy answer.

Anyways, purpose of my post was really to blog about the fact that there are difficult issues being away from home with a "big baby"
I couldn't bring Hudson's bath chair to Vegas. We have a bathtub, but I can't use it because we have a "renter" renting a room here in this house and his bathroom has the tub. He is suppose to move out this week, which will help bed/bath issues with the kids, but until then I have had to bathe H in the master shower....no tub there!! I nearly drowned him trying to put him on a $2 blow up pool mattress....he slipped all over and water was pooling...it was a nightmare. I tried giving him a sink bath...what a joke...his baby behind barely fit into the sink, then his arms and legs flailing everywhere, knocking down everything in sight and Hudson screaming in terror.

So...what to do...how to bathe him until the bath is available....

found this at Target yesterday




I guess Hudson is not quite the same size as the baby on the box!
but what a trooper he is

then I got him "criss-crossed-applesauce" and he fit!
sorta...




can you see the sweat dripping from face after his ducky bath?



Well, it was by far the best and easiest way to get his clean yet...until the bath tub becomes available!




**********

getting ready to head out for another day of pool and sun


Hudson had another great day yesterday lounging at the pool...
something tells me he doesn't mind this "vacation" from PT, OT, speech, dr's, etc.


HAVE A GREAT HOLIDAY WEEKEND!!!!

Thursday, July 1, 2010

The last 2 days...

Hudson has been poolside with us!








This does my mommy-heart flip-flops of joy! Having all 3 in the pool, all of us together, not having to worry about finding someone to sit with Hudson...I am so thrilled!

I realized this morning the floatation device is on wrong...the slit is suppose to be on the backside of his head, whoops! We don't have the aqaua jogger yet, which would go around his torso.

The cooling vest has done wonders, and the corner of shade at the pool was made for Hudson!





Yesterday we were out there from 2-5 p.m.

I am so grateful to God he is doing so well, and praying the trend continues!

Hudson Tyler

Hudson Tyler
Our sweet angel!