Monday, December 22, 2008

SNOW!





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.

Sunday, December 21, 2008

SANTA VISIT




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.

Friday, November 28, 2008

Scoliosis, Hip Dysplasia, & Thanksgiving


Happy Thanksgiving!





Happy Napsgiving!


Add ImageNovember 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.






Friday, October 31, 2008

Happy and Alert




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!!!

Friday, September 12, 2008

HURRICATION

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.


Thursday, September 4, 2008

Neavey's classroom ROCKS!


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.

Monday, August 25, 2008

Back to School

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.

Friday, August 15, 2008

Neavey's Summer Boot Camp

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!!!


Saturday, August 9, 2008

Playin' with Auntie Catlin





video

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"

Monday, July 14, 2008

Gramma & Granpa Visit

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.

Monday, June 30, 2008

Sinus Infection

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!

Monday, May 5, 2008

Feliz Cumpleanos...9 years old!

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