Sunday, January 31, 2010

Blondie turns 8

First of all, Thank you to the Photoblog visitors checking out the blog - Brian intended for you to see the next post down - and yes I use his pictures from time to time. Please feel free to visit at any time.

Friday, was Blondie's birthday. She had a couple friends come spend the night (and we missed one kiddo who got sick at the last moment). We had family come over, and Brian grilled dinner for us. The kids were great and just played a lot together. It was interesting to watch Blondie with one of her friends. Her friend is extremely shy, and would whisper to Blondie, and Blondie would take her by the hand and go play whatever was wanted. It was fantastic to watch Blondie take care of someone else, and actually be a leader and protector. Usually other people do it for her, so I LOVE seeing her step up when needed and help someone else.

Blondie is VERY into police things and playmobil, so she and the girls played with her new set for hours. They also chased each other through the house arresting each other and putting the bad guys in jail. At one point I hear Blondie say, "Help me 911, there is a robber taking my truck." Cheesie's reply? "If it happens again just sneak up on them and hit them on the head." I guess we need to review how 911 works and helps people.

We started the week celebrating the lack of seizures, now we're celebrating the girl herself. We are so grateful that she is still with us, and that her life is more livable now that the seizures are gone.

Sunday, January 24, 2010


How fitting that this is my 200th blog post, because the reason I started this blog was because of the new path in life this child:

had to take.

In November 2004 our daughter inexplicably began having seizures. At first we thought it was Epilepsy, but within a month we learned a new phrase: Rasmussen's Encephilitis. It was explained to us that somehow this disease had begun to destroy our perfectly healthy daughter's brain. Every seizure was an indication that part of her brain was disappearing - being eaten like pacman. We spent 3 weeks in the hospital between Thanksgiving and Christmas enduring seizures every 5 to 30 minutes. Eventually we were referred elsewhere.

We were lucky - we lived near the Medical College of GA, and Dr. Park and Dr. Lee were both available to see her, and both had experience with this rare disease. Dr. Lee has since moved on to TX., but at the time they saw her over Christmas to determine that yes she did actually have this incredibly rare disease. She underwent a brain biopsy, and it was determined that she needed a hemispherectomy. The right side of her brain was going to be disconnected to contain the disease. The consequences would be a left arm that would never really be able to be recovered well, a limp, and the left half of both eyes would no longer work - 90 degrees of vision loss. The only bright spot was that Dr. Lee wouldn't have to shave her blonde hair - he had a nurse that would braid it out of the way of the incision. It is difficult for others to understand the tears after surgery when we saw her body lying quietly. There wasn't a twitch, or a shake anymore, our daughter could finally sleep, and begin to get better.

Blondie actually celebrated her third birthday 5 days after surgery, and had very little interest in the procedings. She was very angry that we were making her sit up for so long, and definitely had not regained her personality at that point. Despite the extended family that made the trip down, Blondie had very little interest in the presents, and we were unwrapping them for days when she showed the slightest spark.

Over the last few years she has had hundreds of therapy appointments (now down to 2 OT and 2 PT per week). She began this process though as a newborn infant would. EVERY SINGLE muscle on the left side of her body had been turned off during the surgery. She began with swallowing, turning her head, holding it upright, sitting up, and eventually trying to stand. By the end of that first week she could sit for about an hour at a time.

Since that time, Blondie has learned to walk, run, hike, climb, dance, play tennis, attend girl scouts, attend regular school without any academic help. She continues to work hard to learn to read, can use her left hand to hold things, bugs her sisters, gets in trouble, laughs, plays games, and is as typical as expected. I'm still surprised that we frequently meet people who don't notice the difference in her compared to a "typical" kid even after a couple meetings. This kid has inspired our family to always do our best, but also has touched the lives of other families who have to go through this process as well.
Initially this blog was about her, but as our life has moved away from daily Rasmussen's/Rehab issues we have returned to just the typical mommy blog. Rasmussen's really sucks, but it isn't the end of the world, and our daughter is going to do great things and hopefully one day, show even more people the possibilities for people like her.
We are SO PROUD OF YOU girly. Thank you for showing us that being different is a wonderful thing.

Tuesday, January 19, 2010

Off to the State Museum

Brian and I, and 3 out of 4 of the girls, took some time out to go to the State Museum where we have a membership.

We saw the new dinosaur exhibit that is visiting at the moment. Cheesie liked the footprint, Blondie tried to get eaten. They also learned how to excavate bones.

We wandered around the museum for a bit, but spent a BUNCH of time in the science area. There are all kinds of cool exhibits that the kids can touch and play around with so they had a ball figuring them out.
The girls enjoy going there to see all of the "old stuff" and love playing in the old school house and train. At one point Cheesie saw a bunch of TV's from the 50's and asked, "Mom, which one did you have when you were little?" Um.... kiddo..... that would be grandma, not mom. It was really just fun to hang out together and watch them explore without any hurries.

Friday, January 15, 2010

Chorus concert

Blondie had a little chorus concert this week. Usually the songs they sang would be associated with the Christmas holiday, but they were the ones really about winter - Frosty the Snowman, Jingle Bells, etc. She was very excited because at my school the kids have to wait until 4th grade to sing in the chorus, but she was getting to do it in 2nd. What she didn't count on was how nervous she was about seeing the parents in the audience.

Do you see the left arm all bent? That is what happens when you are nervous and have had the surgery she has had. It's interesting to watch because it is a DEAD GIVEAWAY that she is worried about something, or concentrating really hard on something else. When she sang, the arm pulled up, when she paused she would look down at it and immediately straighten it out.

During Frosty these two boys came out and walked around the audience hamming it up. The boy in blue was tremendously funny, and obviously cut out for the stage - his face was so expressive.

A fun night to watch Blondie shine.

Saturday, January 9, 2010


Just got back from my Manatee trip with my students and T-Rex. It is a great opportunity to study ecosystems, and then see why we need to be careful with the animals and plants around us.
We happened to go when Florida is facing EXTREME cold. Yesterday I think it got up to 38. Thankfully the water is always around 72-74 degrees and we were actually warmer when we got in, but getting out of those wetsuits and into dry clothes was a very cold experience.

The good thing about the weather was that the manatee, and other fish, flock to the warm springs to maintain their body temperature. So yesterday when our boat cut its engine we were immediately greeted by 5 or 6 around each boat. There are very specific laws about how to interact with them, but it gets a little tricky when one is rolling over for you to scratch his/her belly and another one is nudging you for attention behind.

We spent awhile with them, and then started the freezing process of getting out of the water (which was 72 degrees) and into the boat (the air was 30 degrees). We were shivering our way back to the hotel when this pelican flew up and landed beside our boat watching us. Then when he fell behind he flew up again to watch us, and finally he just landed on the boat. The kids were absolutely thrilled. That bird just sat there hitching a ride until we got close to this tiny island that has an abandoned house on it and then he flew over to his friends.

T-Rex and I had a blast. We have a couple of videos I can't post here because some of my students are in them, and I'm calling them by name, but this trip is always magical for me. Students always have such bravado and think they'll get in and swim with these gentle giants, but being in the water is such a different, sometimes unnerving experience. To watch these kids, in two days figure out how to snorkel, and respect the wildlife around them is tremendous to watch. I'll never grow tired of it, even when it sounds insane to swim in 30 degree weather, and I definitely enjoy going on the trip with one of my girls. T-Rex learned a lot, and it has definitely had the effect on her that I was hoping for. She has always been fascinated by learning about animals, but swimming with them, in their habitat has opened her eyes to all of the controversies, and has started her thinking. LOVE THIS KID!

I'll post more when I get the next batch of pics back from the underwater camera.

Saturday, January 2, 2010

UFO resolution

UFO, in the quilt world at least, stands for Un Finished Objects. Many quilters have them, and I am one of them. I started quilting when Big Al was a baby because I absolutely love quilts, and the comfort they offer people. I have made a bunch of them, but as my husband has pointed out, only 2 that belong to us have been finished, the rest have gone out the door to friends and family. Today, I was browsing various blogs that I lurk in, and was inspired by kleiosbelly's resolution to knock out one UFO per month - sounds easy, but some of my quilts will definitely not be easy to do in one month... but I'm in.

With Brian out of work for 6 months (although we are hoping things are beginning to pick up) it has really tuned us in to what is already in our house to do, as well as what is out in the community to do for free. We are definitely not staying home, and we are still very busy, but our priorities have obviously shifted. So in the spirit of living more simply I am resolving to hit my fabric and yarn stashes FIRST and not buy anything new until these projects are completed - although I'm pretty sure I need to buy quilting thread - but I'll check that stash first too.

So my 2010 list is starting with:

Big Al's blue knitted blanket (about 2/5 finished, no picture)

T-Rex's African animal quilt (have fabric, that's it)

Cheesie's star log cabin (made for someone else, but she has taken it over. Totally made from my stash, and the only child who didn't get a baby quilt, so she gets a kid quilt)

T-Rex's knitted blanket (no picture)

Santa wall hanging (made ages ago, layered, and started with quilting)

More felt food (Cheesie and Blondie love this stuff, and play with it all the time. They have a list, I have the felt, and stuffing, just need to cut them out and do them in front of the TV).

My 1800's reproduction fabric quilt (truly a pain in the butt to make, and I've never quilted it - so I'm going to tackle it this year just for myself.)

I have more in the stack of things unfinished, but will add them as I go so maybe I can pretend to be productive. So Mara, I'm joining you. You post your successes, and I'll post mine. Looking at these older projects makes me realize how much my style has changed, but if I can finish these I can move on to new creative projects (although after these I may feel rejuvenated enough to start back in on these things that seem to have fallen by the side). I'm looking forward to the challenge.