Hi, Aunt Di!

The tickle progression

Neavey, pretending to ignore the tickling.

But wait, maybe she'll succumb to the giggles....

And...Di has achieved full on TICKLE TORTURE!

Keith's Aunt Di came to visit in October. She loves Neavey to pieces and Neavey really enjoyed all the attention. It was so nice to have Di come hang out with us. We enjoy sharing Neavey with anyone who can find the time to visit. Book your spring and summer visits now!

New Feeding Smock

One of Neavey's honorary grandmothers, Linda, made this feeding smock from some sketches, an old smock about 10 times smaller and some materials I sent plus some from her own stash. It is working out great. Now we only need about 10 more.

Excercising with Keith

Cool Capri's

Neavey's gaining strength back after the swine flu.

Huge accomplishment here for Neavey to sustain this position with only a mild assist.

Home Again - Home Again

Heading home on Saturday - Goodbyes to nurses

Saturday night set up with suction machine that my mom( the airway pro and RN supreme) helped me acquire. And Oh did the hospital bed that Mr. Jason gave Neavey years ago come in handy.

Monday - Not ready for school yet, but happy with balloons (from one of the publishers that Keith works with) that had met us at home upon our return.

H1N1 Crisis

Night 4 - still on O2

No rest for the weary! Physical therapy started for Neavey on day 3. This is day 6. She was starting to perk up a bit

TCH provided a standing frame as well as a therapist while she was in hospital.

asleep in standing frame

Day 6 - acting more like herself with Keith.

September 11th Neavey's rapid flu culture came back positive. We will never really know if she in fact had the swine flu because Harris county had stopped differentiating between the flu strands after a month of 95% of the follow up testing coming back positive for H1N1. We were told to assume it was H1N1 and to proceed with caution.

Because Neavey cannot clear her own secretions very well if at all when she is sick, we were forced to take her to TCH's ER the next morning, She was admitted and spent 7 mostly hellish nights on the Neuro. Floor. Thank goodness for awesome night shift nurses who don't freak out over seizures (you'd be surprised how many nurses do) and rock out the at upper airway suctioning. Thank you Michelle! Neavey started acting a little like herself around day 4 or 5 but continued to: run high fever every other night, need oxygen, and need upper airway suctioning. Alas, she did get to come home one week after being admitted and has hung in there since then. Keith and I survived only with the help of great nurses and friends. Thanks to all of you who made us meals, brought supplies to TCH and provided rides to and fro.

July Rocked!

June was definitely a warm up for July. Neavey kept up her perky-ful tempo!

Neavey has a knack for the camera. By knack, I mean the moment the camera goes on she immediately stops doing the cool, great thing that prompted filming. Curses!

Le Bleu water bottles make the best shaker toys! They have a perfect narrow neck that Neavey can grasp. I've only been able to find this water at Specs.

Last Christmas my mom, brother (Justin) and his partner (Amy), Keith and I filled many bottles with bric-a-brac and assorted rattley bits for Neavey. They are the perfect handheld toy for her.

Sitting with Keith

June was an energetic month.

Other May Moments

Bubble time is a fun weekend event. We have Neavey's former occupational therapist, Sue, to thank for this fabulous birthday gift.

Neavey during office hours. Neavey sits in a tumble form chair with a tumble form tray and pushes her blinking, vibrating and music playing (the trifecta of therapy toys!) therapy button toy.

Keith mastered the art of a half ponytail!

Grandpa Larry and Barbara sent this therapy tool. The blue snake vibrates and can be manipulated into different shapes and postitions for muscle stimulation.

Sometimes Neavey is just sooooo cute she can't help herself. And the big drippy drool just adds to the cute? I just brought her home from school here. She is hangin' out with me for a few minutes while I put away her lunch kit things.

Last session with Jennifer

In May Neavey's speech pathologist of the last few years moved to England. Yay for her...Booo and hiss for us. We will miss her!

Neavey's 10th Birthday party

Hippity Hoppity Eastery Time

This year's Easter theme for Neavey was SUNGLASSES! She took sunglasses to her classmates in her Multiple Impairment

classroom. She also took Moeller's cupcakes to her teachers!


The Easter Bunny brought her these cool Ronnie Milsap inspired shades. Why Shades? Well, we have learned as the season is slowly changing down here in Tejas (yes, we do have more than one season. Although one season is called "hot humid swamp" and the other is called "it's sunny outside and we won't broil if we go out for a few minutes") that Neavey's new special needs swing set, the one set in 200 pounds of concrete, is positioned so that she gets blasted with intense rays during our prime swinging times. These "Barbie" brand UVA/UVB shades are doing a great job.

And, who doesn't love Ronnie Milsap, Barbie and Neavey??? If you didn't already check out the Ronnie Milsap video, WHAT ARE YOU WAITING FOR? It's Pure Neavey!

Cool Neavey Stuff Part III

This is Neavey's new special needs swing and swing frame. This is one of the first times she spent much time in it. She seems to enjoy it even more now. We have developed a slightly better system for wedging her in since this video was taken. Currently we add a bolster under her knees and a few rolled up towels around her shoulders to keep her body in better alignment.

The swing and frame come from an adaptive equipment company called Abilitations. Our super home repair and contractor extraordinaire, Mark Sportell, went beyond the call of duty (as usual) with the installation of this swing contraption. The frame itself can hold up to 2 swings for wheelchairs (which, obviously, is not the kind of swing we got for Neavey). And, Mark has made sure the frame won't fly off during the next hurricane. It is secured into the ground with about 200 lbs of cement. We have installed the hammock swing designed for those with poor body control and a regular swing for those with good body control. Always thinking of Neavey's comfort and safety, Mark also thought to wrap the chains of the hammock swing with 3/4 inch pipe insallation.

YAY MARK, YAY SWING!

Cool Neavey Stuff Part II

Neavey's Uncle Brian discovered this funky star laser show for Neavey while researching a Christmas wish I had made on Neavey's behalf.
We know that Neavey seems to enjoy toys that light up and she likes to look at the Christmas tree as it twinkles through the month of December. But since I refuse to leave a Christmas tree up until Easter, Neavey only gets one month of twinkling.

Thanks to Uncle Brian and his family, Neavey can now enjoy twinkliness year round. It's not exactly twinkly, it's BETTER! With this Laser Star show we can transform any room into a star-filled universe. Two built-in precision glass lenses, plus a green laser and holographic technology create thousands of stars that slowly move across the room. A cool "nebula" cloud feature can be dialed in as well. That is how we get the blue effect above.

Neavey tracks the little green "stars" or dots as they move across her field of vision. It's so totally cool that I took it to her school to show the teacher of Neavey's Mentally Imparied classroom... Her teacher was bidding on it through eBay within hours. Neavey now has one at school as well!

Cool Neavey Stuff- Part 1

This funky inflatable rocker is not your Barbie's blow up furniture of the seventies. This is your super duper special needs variety, SensaRock. Yes the balls in the side runners move and make noise! AWESOME! It came as as a gift from my parents as part of Neavey's Christmas installment (more cool stuff to see in future posts). Alas, this answers the age of old question, "Is Neavey my over grown doll?" Answer: A Clue, YES! And the other question...is that your Christmas tree? in March? Why yes, it is the coolest Christmas tree ever, but it came down promptly on January 1st.
Thus, it was not a "MILLNER" tree that might stay up until oh, what was it? April?
FYI:

SensaRock is great for kids with sensory processing disorders and large motor deficiencies.

Uncle Michael Visits!

Keith's brother, MICHAEL, visited at the end of January. Of course, as if on cue, after a good first day with Uncle Michael, Neavey then decided to have tons of seizures that led to the gorked out pose in the first picture.
She eventually pulled out her slump and allowed Keith to take Michael out to the Mucky Duck to hear Greg Brown.
Neavey's looking much more chipper the next morning before heading off to school.