Seizure Salad Days

Time Flies

2011-02-02T08:25:00.000-08:00

Where has the past year gone? It has been almost a year since our last post. Many of you follow us on Face Book, so you may already feel caught up. But just in case, here goes a quick account of last 11 months.

Weight Gain!
After another illness in April 2010, Neavey bounced back as usual but concerns about her weight became an issue in May during a Neurological check up. After scrutinizing her calorie intake, her dad, Keith and I went on a calorie push for a few months. In late May 2010 she weighed 49 lbs. As of last week, (January 2011) she is up to 60 lbs. Most of that weight gain occurred before November.

Seizures on the rise.
By mid July Neavey had gained 5 lbs during the big calorie push. Yay! BUT, with that came a jump in seizures that caused her doctor to increase her Keppra. And as luck would have it, she couldn't tolerate the increase. WIthin 3 days she was screaming uncontrollably from the "anxiety" side effect caused by overly high levels of Keppra. We decreased the dose and waited a few says for her to normal out again. As any one with a screaming baby knows, this can drive a sane person over the edge. By early August my nerves were shot.

Back at School
By late August Neavey's seizure activity was on the decline and school started. Luckily Neavey was granted an extra year at Memorial Elementary where the teacher and aides have perfected their "Neavey care" skills. Things were going great until the second week of school when she came home with an ear infection. She missed a couple of days of school and then was right back home again with a throat infection in September. Seizure spikes in October kept her home for a day or two. By November she had yet another ear infection. Then a really bad cold got the best of her in December, this one she shared with me.

The New Year - 2011
Concerns over blood chemistry had us a little concerned in January, but luckily her weight gain has caused her Zonegran levels to fall enough so that we are not as worried about her Bicarbonate level. We are in the middle of figuring out how and where she will transition into a middle school setting next fall. These kinds of things must be dealt with now and in the early spring.

On the horizon
Next up, more dentist visits. Oops forgot to mention the visits to the dentist to extract "shell" teeth. Neavey doesn't like to give up her baby teeth easily. Thy have to be extracted, which she is not usually too happy about. Luckily she has the best dentist EVER (Dr. Bruce Friedman)! She only cries for a few seconds. He and his staff are top notch!

A check-up with the bone doc is due as well. We're a little afraid of how all this growth will have affected her hip dysplacia and scoliosis. And it is time for new wrist orthotics. The cool pink Beniks must be replaced. I think we'll stick pink!

Viruses, Allergies, & Recovery

2010-03-27T15:42:00.000-07:00

The end of February and the first half of March were plagued by illness and allergies. There were lots of long nights, but only one very scary one where Neavey's airway became seriously compromised.

Neavey was at her dad's house, and luckily her step mom saw the trouble Neavey was having breathing and had dad call Keith and me. It was definitely an episode that was going to take a team response. Within 10 minutes of the call Keith and I were on our way to his house, driving through an almost surreal 2 AM fog, armed with suction machine, pulse-oximeter and other various bits. The best bit was a simple tongue blade. You know, the "say ahhh" thing. Neavey's pediatrician has coached me on how to help Neavey recover her airway when it is "clogged" with excessive mucus. Inducing a gag reflex to encourage vomiting is the best way to clear the upper and even lower airway in some cases. It is much less invasive than sending a catheter down her throat to "suck it out". The gagging and vomiting worked like a charm. She spewed up at least 100 mls of thick yellow mucus that was clogging her upper airway. Her pulse-ox went from 80% to 94% within minutes. If you don't know, at 80% pulse-ox you are pretty much ashen or blue in color. Thank goodness for my mom's foresight to get Neavey a Pulse oximeter for Christmas. It might sound like an odd gift, but so helpful! YAY for Grandma RN.

That was how the second virus went down. The third (plus the onset of allergies) is about two weeks behind us now... We are hoping for an uneventful summer! The slide show above is from pictures taken of her between virus 2 and 3. Keith and I got her this the adjustable bench like the one she uses with Jacy (PT) for Christmas. She has been doing a great job of bearing weight through her arms as she works at the bench.

Groovy Hand & Wrist Splints

2010-02-25T18:39:00.000-08:00

New custom Benik hand & wrist splint

Neavey's new custom hand & wrist splints are not only fashionably pink like her wheelchair, they also make her look like a rad rocker. Don't you think? Although she does come from a line of drummers, (me, my baby brother and my dad) she is not wearing them due to injury sustained while playing the skins. Since Neavey uses her hands less and less these days, her wrists have started deviating toward her ulna (the outside bone in the forearm). In order to reduce the chance of muscular contractures, she wears her left (less functional hand) Benik for 8 hours during the day and the right one for 8 hours at night. They have metal stays on the top and bottom and a hard plastic stay along the ulna to keep her hand and wrist in neutral. She doesn't seem bothered by them at all. I think she looks rather tough in them!

She was fitted for these along with new ankle foot orthotics and a new nite splint in January when I realized she had outgrown her old ones. Our awesome orthotist, Jason, at Dynamic Orthotics confirmed that she had at least an inch of growth since May of last year. I have only a few inches left on her. YIKES!

Havin a ball!

2010-01-12T12:15:00.000-08:00

In January Neavey had another visit from Jacy's supervisor, Brian. No, not as in the uncle variety. This Brian subbed for Jacy back in November and tried some different things out with Neavey that I wanted him to do again and show both Jacy and me how to pull it off. Becasue, if you didn't notice those ginormous guns on Brian, then my photography is lame. However, he was hoisting Neavey up onto this giant therapy ball and rolling her and that ball around like they were wiffely. I would never have guessed Neavey would like the upside down business etc.. But she does! YAY Brian, for showing something to add to Neavey's therapy arsenal. Jacy has incorporated the "ball" work into Neavey's physical therapy regiment and it's going great.
GO TEAM NEAVEY!

Uncle Brian Does it Again!

2009-12-29T08:17:00.000-08:00

Alli, Brian and Laura

Uncle Brian (my brother) and his wife Laura
have become quite the advocates for Neavey's
visual stimulation. Over the last year and
a half they have been contributing
to her "Sensory Theatre"with some
great sensory solutions to enhance
her visual attention.

Many of you have seen or read about her Laser Star
projector which is still a favorite not just for Neavey,
but for us as well. For Neavey's 10th birthday,
Brian sent a Space Projector that casts a lava
lamp-like effect on to any flat surface. Just pop
in an oil effect wheel and watch the bubbly goo go!

The latest installment intensifies the effect of the
Space Projector. The pod Neavey is lying in
brings the bubbles within inches.
Visually stimulating indeed! The pod pops
open and folds down like one of those dashboard
sun visors. Easy, breezy fun time.

Thanks little brother! We love you guys!

November

2009-11-28T11:11:00.000-08:00

Bundled up and waiting for the zoo to open.

The highlight of November was Neavey's Class Field Trip to the Houston Zoo. The goats in the petting zoo were the only animals Neavey paid much attention to...

Group photo, and random girl walking by.

Neavey was very perky in the Gift Shop! Must be my kid?

Mid- November: Neavey is supposed to be in her standing frame about 45 minutes two times a day. She used to mostly put her head down on a pillow. Lately, we are seeing a little more energy She is holding her trunk and head up very well. We think this is the benefit from her new vitamin D regiment.

Turkey Day!

Hi, Aunt Di!

2009-10-15T11:06:00.000-07:00

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

2009-10-10T13:33:00.000-07:00

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

2009-10-06T13:26:00.000-07:00

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

2009-09-28T21:04:00.000-07:00

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

2009-09-25T11:11:00.000-07:00

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!

2009-07-31T16:19:00.000-07:00

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

2009-06-01T15:23:00.000-07:00

June was an energetic month.

Other May Moments

2009-05-31T15:17:00.000-07:00

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

2009-05-20T12:12:00.000-07:00

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

2009-04-25T11:49:00.000-07:00

Hippity Hoppity Eastery Time

2009-04-17T17:26:00.000-07:00

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

2009-03-10T05:53:00.000-07:00

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

2009-03-09T06:59:00.000-07:00

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

2009-03-06T14:29:00.000-08:00

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!

2009-01-31T10:08:00.000-08:00

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.

SNOW!

2008-12-22T09:53:00.000-08:00

As far as I can remember, Neavey has never experienced snow. Considering she hates being cold after a bath, - How do I know? She cries. - I bet snow won't be on her favorites list.
Keith was thrilled down to his Denver toes. He had fun taking her out in it. I made a snow angel on Neavey's behalf.

SANTA VISIT

2008-12-21T20:18:00.000-08:00

Make no mistake, that IS Santa! He came by for a special visit to make sure Neavey's been good this year. Well, we kinda went out on a limb and vouched for her. Santa is a good guy ya'll. And FYI, when he is not delivering gifts on Christmas Eve, he drives a JEEP. Who knew?
More Christmas updates to come.

Scoliosis, Hip Dysplasia, & Thanksgiving

2008-11-28T09:40:00.000-08:00

Happy Thanksgiving!

Happy Napsgiving!

November was a bit more rocky than October. Neavey had a check-up with her pediatric orthopod who has followed her since age 3. Her physical exam showed she has no fixed contractures in her legs - good news! And , her x-rays showed the 17 degree scoliosis has remained unchanged for the past 2 years. That is good news too. At least it has not become worse. However, her hip dysplasia is another story. Her right hip is over 50% subluxed which is much worse than her last visit. Basically her hips will most likely slowly come out of the hip joint. Dr. Davino assures us in Neavey's case (though, not in all cases) she will most likely not experience pain associated with this. She will likely lose some range of motion and would not be able to walk. Since she has not walked with assistance in 41/2 years...this part is not an issue. It seems like no biggie after a few weeks have passed, but it was rather traumatic to hear this news at the time.

Thanksgiving was fun though! We had Auntie Catlin and Mr. WooWoo over for dinner for a repeat of last year! Neavey was tired most of the day with her mild congestion that she had been fighting for days. Nonetheless we all ate and lounged, and following Neavey's lead...napped.

Happy and Alert

2008-10-31T20:00:00.000-07:00

October kind of meandered by...Neavey has been strong and alert for the most part. Short of a couple of big seizure days, she has managed to keep everyone around her in happy spirits. She's been doing great work for her therapists as you can see! She had quite a few Halloweeny outfits to sport through out the month as the slideshows demonstrate.

So, we'll hope for an equally happy November and send warm turkey thoughts out to you all!!!

HURRICATION

2008-09-12T07:49:00.000-07:00

PHASE I: the first 48 hours

Evacuation: 11:55 pm Wednesday September 10th
Destination: Buda, TX (Grandma & Grandpa's)
Arrival: 3:15 am Thursday September 11th

During phase 1 of Hurrication Ike we were feeling proud of ourselves for boarding up and heading out early...just in case. Hanging around for power outages, flooded roads, and downed trees was not on our list of easy things to handle with Neavey in tow. And, if Ike were to be as devastating as Alicia in 1983...and Neavey got sick or had an emergency we might be unable to get her the help she needed...

Anyway, we were also happy that this time we cut about 13 hours off our drive time. When we evacuated for Hurricane Rita we got caught in the mass exodus that turned a 3 hour drive into a 16+ hour drive.

Thursday and Friday at CAMP McCORD were uneventful. Lots of Weather Channel viewing as Hurricane Ike approached Galveston and Houston. We watched alot of September 11th remembrance specials and ceremonies as well.

Every year in honor of 9-11, Neavey and I wear our matching t-shirts. (Oh, I got my hair cut. Donated 11 inches to Locks of Love.) Neavey was in good spirits playing in the big lounge chairs with her toys.

PHASE II: Saturday 9-13 thru Tuesday afternoon 9-16
Status: Neavey gets SICK!

Sometime in the wee hours of Saturday the 13th Neavey started having sinus drainage that subsequently caused lots of upper airway congestion. She was uncomfortable and restless through the early morning. Sometime in the late morning I watched her lips and gums become pale and go white. Panicked, we called my mom in and she went into Nurse mode immediately. My mother whipped out a full on suction machine and sterile catheter kit that she had on hand in case such an emergency ever arose!?!?! 1o minutes and 25 ml's of thick yellow gooey mucus later, my mom had Neavey pink and breathing normally again. I say, another pat on the back for evacuating to my parent's house. This was the worst case scenario I had envisioned had we stayed in Houston...An EMT might not have reached us in time nor could we have reached the hospital.

PHASE III: Tuesday night- Friday 9-19
Status: illness subsides and the screaming begins

Neavey seemed to be soothed somewhat when Keith played guitar for her.

3 days of screaming began on Tuesday evening. Having lived through events like this before we were fairly confident that Neavey was experiencing side effects (anxiety) from her Keppra. We ran her to an emergency care clinic in Austin to make sure she had no secondary infections from the sinus infection. As we guessed, everything from ears, nose and throat looked pretty good to the doc. Neavey's neurologist in Houston had us give her extra klonopin to settle her down during these episodes. It helped some. But mostly she screamed and cried off and on for 3 days followed by 2 days of small crying jags. In the end I found that the different oral syringes being used to deliver the med were not exactly the same. So the inconsistencies in her dosing seem to have been the problem. We are currently being extremely careful and deliberate in measuring her dose with the same syringe.

Neavey's classroom ROCKS!

2008-09-04T07:22:00.000-07:00

Neavey (mostly asleep) with her classroom aides during the first week of school.

Neavey and the other students in her class are lucky to have a smart, nurturing, and loving teacher and staff to care for and teach them each day. Since I have only cleared the use of this photo with the aides pictured here, and not the use of their names, we will call them Ms. F on the left and Ms. L on the right.

These women along with the supervision of the head teacher, Ms. S, have dedicated their professional lives to working with special kids like Neavey. These are not people going through the motions of a tedious job. These are special adults caring for special children. They are thoughtful, respectful and genuine in their interactions with their students. Of course without the support and trust of the school principal, this classroom would not be as successful.

Neavey has ever been part of a program with a poor administrator that didn't trust or support her teachers and needless to say we were forced to remove Neavey from that setting . But that was years ago and we have been grateful for our and Neavey's experiences at this school for several years.

Back to School

2008-08-25T16:53:00.000-07:00

The first day of school for Neavey is like any other day of school. It goes a bit like this:
Neavey usually wakes up briefly between 6:30 and 7:30 am. I have been up for about an hour getting meds and breakfast and lunches prepared and or packed.
Keith gives Neavey her morning medication with a drink while I go back to the kitchen to finish packing his and her lunch kits.

After I've gotten myself partially together, Neavey gets her hair done and her teeth brushed.

Around 8:15 it's time to get in the wheelchair. If Keith is still home he does the lift and the placement in chair.Getting out the door , in the van and on our way...

On a good day we have arrived at school between 8:20 and 8:40am. Neavey and other kids in her class enter the school near her classroom where there is wheelchair access. The school has an intercom set up (much like a doorbell) for parents to buzz the office and then gain entry into the building via one of the classroom aides or the teacher. After Neavey is settled, and I've communicated any necessary info to the teacher, I'm off to the gym.

Neavey's Summer Boot Camp

2008-08-15T14:26:00.000-07:00

8:00 am: After morning meds, Neavey watches some PBS

9:00 am: Time to get dressed, do some stretches and put on AFO's.

10:00 am: Neavey spends 30 minutes in her stander. She's watching Monsters Inc.

10: 50 am: Neavey holds office hours. Actually she sits in her tumble form chair with tray for 25 minutes and activates a variety of toys, while mama practices guitar.

These are just snapshots from a typical day at Mama Boot Camp. Boot Camp lasts from early July as summer school ends and goes well into August before school starts. There is a schedule and we stick to it! It's a challenge to keep Neavey alert, motivated and changing positions. Therapists encourage us to change her positioning every 30 minutes or so to keep her from developing ulcerations (bed sores). We work in 15 minute drink breaks, meals in a different chair, tooth brushing, floor time in which I assist her in sitting up on the floor and reaching for toys, wheelchair time around the house as I put away dishes or laundry, etc... Sometimes we plan a 20 minute field trip to Target, Kroger or some other nearby destination. Mostly this is to get out of the house briefly and into another air conditioned dwelling since it's so freakin' hot!!!

Playin' with Auntie Catlin

2008-08-09T16:15:00.000-07:00

Catlin is one of Neavey's biggest fans.
I met Catlin in 2004 when I went back to classroom teaching
after a few years of training teachers. Catlin and I quickly realized our teaching styles
and philosophies complimented each other well and we started working very closely with our lesson planning, teaching etc... We quickly became good friends, not just because of all the "teacher" stuff, but because she really "got" Neavey. Lucky me, lucky Neavey! Catlin's history of working with cognitively and physically impaired kids through the YMCA system (Spokane, Washington) certainly provided her the background knowledge for being around Neavey. However, some people just "got the Neavey knack"...
And Auntie Catlin is KNACKED OUT!

Like Keith and I , Catlin doesn't have family in town. I think after she evacuated from Houston to Austin ( normally less than a three hour drive that took us 16 hours that day) with us during Hurricane Rita in 2005, Catlin truly became family. Although she is committed to spending time with the 4 of us as a family, she has a connection with Neavey independent of her relationship
with Keith and me. More times than I can count, Catlin has dropped everything in her personal and/or professional life when we have needed her help during a crisis with Neavey.

So, in May of 2007 when I was about to leave teaching again to be more available for Neavey, imagine my surprise (and utter dismay) to find out Catlin was planning to return to Washington to pursue her Master's degree. Fortunately, colleagues at Keith's work recognized Catlin's talent and strength in education and made her a job offer she could not refuse. Although I miss the days of our dynamic duo teaching at Scroggins Elementary, at least she's still a very regular presence in our life.
PS- Check out Catlin's blog "Pie of the Day"

Gramma & Granpa Visit

2008-07-14T16:32:00.000-07:00

Shaker time with Gramma.

Gotcha!

Where did they go?

Gotcha again!

My parents came in from Buda, TX to visit Neavey last weekend.
My mom is a great asset with her top notch nursing skills. I learned something new...
"floating" Neavey's heels so as to avoid pressure that can lead to ulcer formation. Since Neavey spends a lot of time propped in positions I should be careful to always avoid pressure at her heels since this is already an area of poor circulation... As you can see in this picture I have her knees supported but what you can't see is a little rolled up towel under heels.
We had a super time with my parents. We all went out to the Fannin Flower District so my mom could add to her Country Kitchen foliage. And then we spent some time at the antique stores on 19th Street in The Heights. Again, searching for Country Kitchen goodies. The rest of the time we hung out with Neavey either watching "Over the Hedge" or just playing with shaker toys, etc.

Sinus Infection

2008-06-30T20:44:00.000-07:00

That is a Breathe Right Strip on her nose.
Keith calls her "Mean Joe Green" when
she wears them. Thank goodness they
started making the clear ones...
she doesn't look so much like "Mean Joe" does she?
They REALLY help with opening up nasal passages for more comfortable breathing, I've been using them for years when my allergies act up...

June started with a full on sinus infection.
Nothing says summer like
coughing up thick wads of green goo!

She was only "sick" for about 5 days. However, any illness with Neavey packs the power to cause turmoil for 2-3 weeks. After her body has gone through high fevers we think her seizure meds lose some efficacy. We've been told that perhaps her body is metabolizing them too rapidly when she has the fever, thus causing a drop in her blood levels several days and even a week after the onset of the fever. So, that means extra seizures.

If we give extra med on purpose or accidentally ( she often barfs her meds due to coughing episodes associated with upper respiratory ailments thus forcing us to re-dose medications - thus the guessing game begins) she may experience extreme drowsiness for days on end. This can all drag out because it takes 2-3 days for one of her meds to "reach" efficacy in her bloodstream. The other takes 10 days to 2 weeks.
June was rough!

Feliz Cumpleanos...9 years old!

2008-05-05T09:10:00.000-07:00

the cake
(from Moeller's Bakery)

sombreros!

Ole!

la familia

For Neavey's 9th birthday party we had a Cinco de Mayo fiesta. Her birthday is April 26th, but she was staying at her dad's house that weekend. So, the following weekend we did it up full on with Mexican dresses, sombreros, guacamole and Tejano music.

-Kelly

Michael to the rescue

2008-04-07T21:30:00.000-07:00

the wake up

the lift begins

the turn

...to the wheelchair

and we're done!

In early April, Michael ( our hero pictured above) flew in from Denver to help me out with lifting Neavey as Keith recovered from a surgery. And by help out with... I mean "did all lifting" for a weekend so as to give my back a break. It was really nice to have some brute strength around after several days of doing all the lifts myself as Keith recuperated.
Although I refer mostly to Michael's brawn, he is one of Keith's oldest and dearest friends. I'll speak for Neavey and Keith...we loved having him join in on our Neavey life for a few days. He's quite a lovely person to chat and hang out with... Did I mention he officiated our wedding as well? So talented, that Michael!
Our friend Maritza, one of Neavey's surrogate "aunts/tias" (aka: Titi), stayed over for a bit as well and helped me with many a lift.

-Kelly

Publish Post

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It's Slinky!

2008-03-31T07:56:00.000-07:00

Our little friend Desmond visited in March. He is giving Neavey a tutorial on his slinky stylings. Desmond lives in California with his groovy parents.

Here is a video of Desmond and Neavey (don't miss the surprise ending!).

January - '08

2008-01-23T20:00:00.000-08:00

This seems like a fine place to start Neavey's first year on the web. This video was taken during a physical therapy session in January. Neavey doesn't always vocalize nearly to this extent. So, when she does, someone dives for a camera and rolls tape! Keith was the lucky one who caught this episode. I think I was substitute teaching at the time. Neavey normally has therapy as soon as she gets home from school. Since her school dismisses earlier than mine, Keith has pick up duties on days I sub.
--Kelly (aka neaveymom)

2007 Favorite Videos

2008-01-01T19:50:00.000-08:00

To see some earlier videos of Neavey posted on YouTube go to the following links:
Standing during physical therapy - January, '07
Happy in chair - September, '07
Playing with Keith and laughing - October, '07