Where have I/we been???

Adjusting to all *new* things medical....

Brought oxygen in home with a tank and air converter
Took oxygen tank and converter back after 1 week
brought in a pulse oximiter to use as needed
Changed cpap masks due to leakage

It took about 2 weeks after coming home from the hospital where I could feel comfortable to sleep at night without constantly checking on him...Hudson has been a complete angel adapting to all this.

Picnicking......

Went to the annual mito picnic!

Hudson and Cody (my dear friend Shawna's son)

First time for us attending the picnic...
met up with friends, met new friends, met Facebook friends!
Nurturing to the soul....with a side of slightly painful.

Mito kids and their families. I am sure you can spot us with the stroller.

Mito kids and some siblings/care-givers

Celebrating.....

I am LOL cuz I just realized Hunter's wearing Christmas in August...FLANNEL no less!!!!

My oldest kiddo...whom I am so proud of.
The sweetest boy on earth...
the coolest...most loving kid who has the hugest heart for Jesus..
My Hunter turned 10!

my birthday boy

My adorable 3H's!

Stumbled across this scene...Hunter helping our 4 year old friend with her shoes/laces. That is my *sweet* boy!!

Cleaning...

Garages and yard (hate being a "guy"....but love the results!)

Redecorating...

Hunter and Hailey's room...

New furniture...t.v....a blue ray! BIG kids room!
Rearranged Hudson's too!

(more my "thing" ...and loved the results!)

Shopping....

Getting close to "back to school" time...
supplies, shoes, clothes!



Filling...

My life with family....and friends...Those who enrich my life and the lives of my kids.

Contemplating...

Past...present...and future


Waiting patiently...

For Gods whispers in my life...and paying close attention to those moments...

Praying...

Lots and lots of praying.



and finally....


Finding...

summer fun for my kids in August, as much of it was lost in July.....

Hunter and friend at Miracle Ranch day camp...a week of FUN!

No summer is complete without slip-n-slide fun!

inter tubing!

best buds!

When your 10, you can go-kart!!!! Hunter LOVED it!!!

All in all, a much better month for the 3H's and myself...
now I just have to figure out how we will possibly get back on a "school schedule" next week!

"grossly abnormal"

I never thought I would feel worse being home than the last 2 weeks we were in the hospital. Don't get me wrong, I am glad to be under one roof finally with my kids....it's just been an emotionally/physically draining experience, and I think I am finally coming off of "auto pilot" and am starting to "feel" again.
My first night home was last night. I had to go to our local pharmacy to get 3 new pieces of equipment...it took 2 hours for them to go over it all...nothing really sunk in with me...I knew it was going to be a trial and error kind of night, and it was. I was up all night worried....maybe it was leaking to much air, too much moisure, it could slip over his mouth...I actually had better night sleeps in the hospital than our first night back at home.
I know being alone has much to do with it...it is up to me to get this all right, to help Hudson, to be his nurse...there are no doctors and no real nurses checking in...just me.

Then today...phone calls to be made, house cleaning to be done, stuff from Vegas strewn, stuff from the hospital strewn, equipment, kids stuff everywhere....real life to deal with on top of all things medical.
Then today,Hudson slept half the day, and woke to several hours of crying and lots of jerking.
The real kick in the gut and funk of the day was reading over his sleep study report...there is no good news in that 3 page report, that info I will do another post on. No....the kicker was reading the following under the "Assesment"....." #3 Grossly Abnormal EEG per his baseline diagnosis."
No, I am not in denial, my son seizes on a daily basis for the past 4 years, he doesn't walk or talk, eats through a tube and not his mouth, now sleeps with cpap because he is averaging over 20 hypopnia events in an hour with out aid.... all symptoms of this devastating, incurable disease...it's just the words "grossly abnormal" in black and white, next to my beautiful sons name, that makes the tears well up, the pit of my stomach ache, and the truth that slaps me in the face after a very, very difficult month.
To the sleep study/Pulmonoligist who dictated this study, maybe Hudson neurological state is grossly abnormal....maybe a neurologist wouldn't use those words...but to me there is nothing grossly abnormal about my Hudson....he suffers at the hands of a disease that sucks the life out of his brain, stomach, muscles,now his respiratory system....it sucks beyond belief....because I love every inch of him as is.

I need a better night tonight with this machine....I need some sleep...
I need a new day, and a better month ahead.