One handed things

I came across this website http://www.compartmentseventy6.co.uk/1-up/1UP.htm while Big Al was looking for info about how to do things one handed. Apparently she has to write a paper for English and that was her topic. I know a young woman who can do it with regular ponytail holders, but Big Al hasn't figured it out yet. If she does, or I can talk the young woman into it, I'll post a video. In the meantime I thought this was a neat idea, and I emailed the lady who made them to find out what the cost would be to ship to the U.S.

Another thing I found was a cool website that I hope may help Blondie out in the future. She really wants to play an instrument, and we thought we would be limited to a trumpet, but Dr. David Nabb, a professor at University of Nebraska, Kearney has found a way to adapt woodwinds for one handed players. You can check out that website at http://www.onehandwinds.unk.edu .

Two new braces

So, I'm going to try to explain why Blondie is using these two braces.....

The wrist guard is like one kids would wear while roller blading, or skateboarding. Her PT wants her to wear it on the playground or between classes in case of falls. That's the idea anyway. I think Blondie will probably wear it once and then too many people will ask questions and she'll hide it away in her backpack. I also think its going to be very hot. There is one her OT has ordered for sleeping in to maintain a proper position for her wrist because THE THUMB IS REALLY MOVING! Blondie is really getting movement back in that thumb, and the wrist can almost turn all the way over.

The leg brace is because she is losing range of motion in her foot - she can't move it like she used too, and somehow this may help. She only wears this to bed. I don't know the technical "how it works" stuff because honestly, I've taken a step back from therapy. I'm thinking that it maintains the traditional position of the foot, and may help stretch the hamstring while in the flex position, but I'm only guessing. Brian is currently taking her so I can get a break - I've been doing it with Blondie fairly exclusively for almost 5 years. I'm tired - I'm sure she is too, but she is still cheerful about going.

Making Christmas Ornaments

As I was starting to make Thanksgiving preparations this morning, Blondie and Cheesie were sitting at the table working on a craft kit for making wreath ornaments. Cheesie ripped through her half, but Blondie was getting frustrated. I started holding the pipe cleaner she was using to string beads, and Brian started looking for her grip thingie (I don't have a better word for it).

She used to use this when she was little to hold paper when she was cutting, but this year she hasn't needed it as her left hand holds paper down sufficiently and she really didn't want to use it at school this year. We initially bought 3 of these and we kept one at home, one in her classroom, and one in her art classroom. We bought them here: www.allegromedical.com/daily-living-aids-c519/easi-grip-free-hand-paper-holder-p500980.html We did however buy several different clamp to hold it to the table because the one that came with it was insufficient. We have a traditional little orange clamp (looks like a C with a twisty thing that screws down the clamp), and the blue one you see in the picture which is our favorite (made by IRWIN). Blondie can use this one quickly to release and adjust, but it doesn't do fatter tables like the traditional one does

Today we used it to hold the pipecleaner, and then her left arm had to be used to stabilize the other end while she put the bead on and slid it down. One thing our kids are weak with is the fine motor skills in BOTH hands. Blondie didn't play with 2 hands once she got sick at 2.75 years old, so the fine muscles in her right hand are also weaker and it shows in her handwriting. Anything we can do to have her working it is great.


I hope everyone has a great Thanksgiving, and may your family and friends all be healthy and safe.

Lefty playing games,

A few nights ago, Blondie was playing the computer, and called us to come see her use her left arm to play. Please disregard the junk on the table....




Here is a shot of the nasty eye bruise.... thankfully its getting better.

Black Eye

I came from my conference on Friday, and about 40 miles out I got a phone call from Brian. Blondie had been pushed down on the playground on Thursday and had a really bad black eye.... but he was on his way to the pediatrician's office because her eyelid was actually bruised... and the white of her eye was now bright red. This morning, Sunday, we woke up to the red having spread.... it's gross.... it is now out to the bright blue of her iris. We'll be calling the ped, and the opthamologist tomorrow if it continues to spread. Has anyone else "bruised" their eyeball? Ick. I can't bring myself to post the picture. Maybe tomorrow if a bunch of the face bruising is gone. Sigh.... does this ever end? Do we keep her from playing on the playground? I don't think so, but between the possibility of a broken arm, and now a bruised eyeball, I'm going to have to come up with something.

Eating with Lefty

You may remember this video here of Blondie eating. She cried, and complained, and hated every second of it. Fast forward to a year and a half later and .....




We have a reasonable success. No, she doesn't have to eat with the left hand.... the point is that it gives her a purpose for the left hand. She still only remembers to use it occasionally, but now the deal is that she has to eat 3 bites with her left arm (except at school because she says that would be "barassin").

Therapy Thursday

Blondie has been making some big gains with her arm lately. She does a "push up" type exercise now that she is getting MUCH beter at repeating now. Check out the video below.

Then I've NEVER seen her do this before:

Finally, she wrapped it up with one handed scotter board - usually she has obstacles to knock over and can use two hands, but today she went across the floor with just the sleepy arm pulling her weight.



She was working hard today!

Is it worth it?

Last week I got an email from a lady in Florida whose neice lives in Cuba and had a left hemi for Rasmussen's. Thankfully, the doctors recognized the disease, and sent the family to Canada for their medical care, but they have had some issues with therapies back at their home, so they were looking for information as to what they could do at home to benefit the girl. This is unfortunately a common problem. Issues may differ, but I know that therapy has been one of our biggest problems. When we finally find someone that fits us, the hospital closes the outpatient program because of budget cuts (and the fact that they don't make much of a profit off of our kids because of medicaid reimbursements). This has happened to us twice, so then we have to change therapists, and we try to follow them, but the hospital most of them gravitate towards is impossible for us to get appointments in, is quite the distance from our house, and wasn't the same caring feeling that we got from our other two places. We were lucky.... one of our therapists started her own place which has worked out very well. She brought in our OT by working with another clinic, but the two clinics decided to split up, and we held our breath.... would we lose OT again? Thankfully the OT was able to keep a few patients on her schedule, and now travels to client homes to do therapy.

It has been an ongoing stress to keep Blondie in therapy. It may not sound like a lot of time to commit (4 hours a week). But our overall philosophy is not to let this disease/recovery define our daughter, or take away from the life of the rest of us. So we juggle picking up and dropping off kids at different activities, and lets be honest - sometimes the other girls have to make sacrifices because of the therapy schedule. But it has been worth it.

So the email from Florida started my reflecting on these last 4 years, and today I spoke to our OT. We had been asked by yet another family, if she would be willing to talk to their new OT about how she gets Blondie's body to respond the way it has. A valid question, and I have to admit, between the two requests for information this week I was sort of at a loss. I really should have been documenting this process better. I should have kept track of all the meds, and the surgery timeline, and the recovery steps we took, but I didn't. As a teacher I should have kept track of her entry into kindergarten, the difficulties she has faced learning to read (phonics vs. whole language) and get people to accept our "think she's normal" attitude, but I didn't. I felt bad for a few days actually because I felt like we sort of let down a community of people that I try to help, but then I remembered the extreme stress of the illness, and trying to juggle all my kids, and working, and activities and therapy, and I had to relax.

In my conversation with Tonya, she said she would be glad to speak in general terms about helping a hemi kid (HIPPA keeps her from speaking SPECIFICALLY about Blondie), but what she said made me feel better. She said that she honestly wasn't doing anything revolutionary, but it really probably came down to the fact that 4.5 years out we were still doing therapy -- honestly I didn't think we were at a point we could stop. She also said that since we strive for Blondie's independence and push her to do things by herself that we were tremendously helpful to her work. That really helped me put things in perspective. So on the days when my head is going to explode, and the gray hair is multiplying at a maddening rate, I'll have to remind myself that it has been the hardest thing Brian and I have ever done. There is not a lot of time for just the two of us, but someday my house will be quiet because ALL four of the girls will be on their own, and I guess then I'll remind myself that it was so worth it.

To Camilla's family -- see how Blondie is propped up on her elbows in the picture above? Our OT says that EVERYTHING you can do to have her lean on her arm and elbow is the best therapy ever. The kids don't like it (especially at first) but it wakes up those muscles, helps growth of the bones, etc. Blondie does it automatically now because we have played games in this position, read books, colored, etc. I forgot to mention that to you, but maybe it can help everyone.

This is a video a friend of mine from high school (Scott Gray)posted about his organization that supports the disabled troops. Alright all you hemi parents.... do you see the possibilities that I see? If you can visit Scott's You Tube site -- http://www.youtube.com/watch?v=65iuRpfRiTk , and then leave him some feedback I know he would greatly appreciate it. I love the golf cart, and think about some of the kids in wheelchairs, and then look closely and watch the man use his special golf clubs to tee up with one arm. I know that one of the young adults at the conference in July likes to hunt, so I know rifles can be handled by our kiddos. I'm just thinking about possibilities.... not limitations.

School starts next week.... I'm sure there will be many things to blog about..... although I really hope it is all about Blondie's successes.

Just DO IT

I've said this before, but I can't find where I posted it in the main family blog, so here goes again....

When a family is having difficulties -- in our case when Blondie (or T-Rex) were in the hospital-- it was very difficult to take people up on their offer of help. We frequently got calls that ended with, "Let me know if you need something..." But I didn't know how to delegate that help. When T-Rex was sick it only lasted a week, and great friends helped a lot. When Blondie got sick it was for MONTHS.... some families go through it for a year or more.

So, if a family you know, or have vaguely heard of that maybe lives on your block, is having an issue - regardless of what it is.... offer to help. Not the vague "let me know if you need something." But just step up and do something.

1.) YARD WORK - Our neighbor across the street is a VP in a very big company, and he mowed our grass.... a few weeks later 3 families came over and raked up all the leaves in the yard (no small feat I promise). So just roll out that mower and get busy.

2.) DINNER - I know churches are good for this, but the ladies in my neighborhood, as well as the teachers I worked with, made our dinner for over a month. One friend coordinated the menu so we didn't have lasagna every night, and then families would drive it over, it would feed my family for dinner that night - and then it was brought to me for leftovers the next day - EASY ON THE PASTA PLEASE - I know it's easy, but I gained 35 pounds when Blondie was sick, and I'm still carrying it.

3.) VISIT - Lots of people say that they don't like hospitals, but TOUGH TOOTIES. They are the ones stuck in the hospital 24/7 and trust me they aren't sleeping. Anything you can do to break up the day is welcome. I was able to take a shower when someone came (no way I was leaving Blondie in a hospital room without a lock on the door without supervision in case of a seizures. Bring Videos, books, coloring stuff, playdoh etc. Leave the bears and balloons at home - when we left the hospital we had over 40 new stuffed things to contend with. Blondie loved getting the little people sets like playmobil to play with, while only 1 stuffed animal actually made it to the favorite list.

4.) TAKE OUT THE SIBLINGS - My aunt commented recently that she was surprised I kept trying to organize the other girls when Blondie was in the hospital, but honestly I wanted the schedule to be as normal as possible. I was gone for weeks, but they still needed to get to sports, and scouts, and horses, etc. My favorite nights were when friends took the older two (Cheesie was only 18 months) to spend the night.

5.) GIFT CARDS - are so helpful and I used them when I ran out of shampoo, or needed a salad, or laundry detergent for the washer. AND ROLLED QUARTERS were my favorite for the washing machine (and the snack machine - although I had enough pasta so I didn't use it much).

6.) A NIGHT OUT - The Halls' (Jessie is in the picture above with Blondie) had friends give them a special night out (I think it was their anniversary) in the hospital cafeteria, but they got to be alone for a bit while a whole crew played with Jessie upstairs.

7.) LOAN OF A COMPUTER/DVD PLAYER ETC - We had one computer for a hospital floor of 50 some rooms - I didn't own a laptop, but I would have loved to update families while I was there - also, the portable DVD player we brought for Blondie was great - she could watch her little kid movies ENDLESSLY while I watched the news . She also loved the CD player for her favorite music - Hot potato Hot potato.....

There are so many things that are small and easy to help anyone in crisis, but instead of waiting to be asked, just do it.

Edited letter

This is an edited version of a letter I posted on our yahoo group. The mom who wrote it is very frustrated by the place she finds herself. The child is constantly having seizures and there really is nothing medical to do except wait for surgery. This relates the story of the stress that I felt as a mom who was simply exhausted.

> I had a night similar to that when Blondi was sick. We finally had a doctor who recognized Rasmussen's, recognized that it was moving incredibly fast in herbrain (faster than other kids anyway since nothing about Rasmussen's is"normal"), recognized that she was on medication that would cause too muchbleeding during her surgery, so we had to switch back to seizure meds that Iknew wouldn't work. The problem though was that she was in for her biopsy, hadgone through it, changed her meds, but the seizures were ENDLESS. Nothing helped. I didn't sleep because I was still counting the minutes, still tryingto figure out at what point we needed diastat, etc., and we hadn't even left the hospital.>> So I finally lost it all over a poor resident who got stuck with the nightshift, and I screamed and yelled about the sucky hospital giving up on mydaughter, and who the hell did they think they were and weren't they supposed tobe stopping these seizures or at least controlling them --- I'm sure its stuff we've all said at some point in anger/fear/frustration and this crummysituation. So the poor resident got on the phone with his supervising on-call doctor who didn't like what I had to say either, and he finally called Dr. Park the neuro.

Now, Dr. Park is a tiny, soft spoken, gentle Korean national, who came in the middle of the night to "deal with Ms. Dawson." As I sat there watching Blondie's left side going crazy he took me by the shoulders and said - "she doesn't have epilepsy. I can't control Rasmussen's like I can epilepsy. She has a bad illness. In 20 days I can stop it. Take her home and keep her safe. I felt totally defeated. BUT I suddenly, clearly, understood that Rasmussen's wasn't caused by epilepsy, but that Rasmussen's was a disease that caused seizures, and for some reason I've always chosen to compartmentalize that - I will never say that my daughter had epilepsy because in my mind she didn't.

So I took her home, and she slept between us - which sucked for me because I slept on the left with all her seizures and I got kicked every five minutes which then woke me up and then of course I just waited for the next one. Brian started sleeping in a different room so he could get up and work in the morning,and my mom came over to watch over Blondie while I slept as long as I could during the day. I/We zombie parented for 20 days to 4 girls and literally lived in 10 minute increments. We must have looked pretty bad because neighbors showed up to mow the grass and bring in dinners, and shuffle my other kids around.

Your child probably has something different than Rassmussen's, but the idea is the same. You are in the sucky suckiest part. The part where your child looks to be getting worse everyday. You are terrified of the surgery, but ready for it, meanwhile its still too far away. My hope for your family is that hersurgery brings XXXX peace. I can't tell you how strange it was to look at Blondie in the ICU and look at her "being still." 10 days later I still fell apart -the tension had just been storing itself up, and I was still tired, and sheneeded help turning over at night - but instead of every ten minutes I wassleeping for 2 hours at a time. Finally, one night, at about 3:00 a.m. I looked at a tiny 3 yo who just had brain surgery, put my hands on my hips and said,"YOU ARE LEARNING TO TURN OVER BY YOURSELF, RIGHT NOW BECAUSE MOMMY IS TIRED ANDCAN'T TAKE IT ANYMORE!!!!!!!" (Not my best parenting moment) We spent about 30minutes figuring it out, and then she could do it and I started sleeping again. I also fell apart 10 months later when I thought I was being a good mom because I had arranged therapies for after school (I'm a teacher) so I could work, and then pick her up and go. What I didn't count on was how LONG 3 hours is with one kid having therapy and 3 others bored out of their mind in a waiting room. I was having chest pain from stress, and finally just fell apart. I've been fine since then, Brian just had to step in more, and he gladly did, and then other family members would give me a break from taking her and the others to therapies every now and then.>>

My point (after my long story) is this - you are in the worst part. Call your support system - you need someone to help you maintain "normalcy" whether that is a clean house, a good night's sleep, groceries, dinner, whatever..... Call EVERYONE - or call your main person and say, "I need you" and have them call EVERYONE - neighbors, church, work, school, whatever. Your goal is to getthrough the next 3 weeks so that you can get through the time after that. Because while our hope is that there are no more seizures the recovery is also tough. Its better, but you're still working from a lot of stress and exhaustion. Life does resume. Meanwhile rant and rave all you want, we arehere to listen, and support. If you want to call to vent feel free - I have answered phone calls at 3 a.m. before. I have definitely been there and done that, and you know what - I have permanently blocked out all that info about what meds she had, and when - I absolutely don't live in that time period any more, and most importantly, neither does Blondie.

I'll blog more about my opinions tomorrow related to this - because FOLKS -- WE NEED TO DO MORE FOR THOSE IN NEED.

Swim team

Blondie participates on the swim team every summer, although we haven't been able to do much this summer with the races. We found that swimming was the best thing for strengthening her hip, and helped with her strength overall. We've also noticed that each summer she gets better in using both arms. When we first started this, the second summer after surgery) she could barely move her arm and leg in the pool.

I may have to look into buying an indoor pool membershp for the family for during the year, but I'm not totally sure I can realistically fit it into the schedule. She can swim the entire length of the pool, but when she is with the swim coaches she tends to fake that she can't (when she is with me she does it all the time). Coach Dan (in the video) is her favorite person in the whole world, and FANTASTIC in making her do the things she pretends she can't do. We discovered this summer that she can actually do the butterfly kick pretty well compared to the freestyle kick, so when I can, I'll get video of that too.

Usually when Ms. Tonya the OT pulls out the green ball for tummy muscle exercises, Blondie has a GRAND time falling out of them. She is supposed to hang on to the side of the ball and keep herself up by using her muscles, but it is WAY more fun to flop over and mess it all up..... UNTIL the boy next door introduced the girls to Nerf Guns, and Brian ran out and bought 2. Now the older sisters can sit on the couch and wait for you to let go so they can take a shot.

Then holding on takes on a whole new meeting, and even your little glutes kick in to keep you up.

Disclaimer: No small child was harmed by the making of these pictures.... she giggled the whole time. See video....

Oh yeah... Shake your booty...

Blondie was tearing up the dance "green" at the picnic at her therapists place this past weekend. They had food, music, kites, crafts, and our parachute out there having a GREAT TIME.

Wimbledon bound

I always LOVE watching Blondie play tennis. She is absolutely enjoying the game, and after our break during the winter she seems to be playing even better. She still doesn't wholly focus on what she is doing, but I look at that right arm extending to meet the ball and I know how strong she is getting. If I can help her love this game, and teach her to do well at it (I personally don't play, but may have to take it up to play with them) then she will ALWAYS have something to do with other people. Now, if I could only get her to wear the cute little tennis skirts she owns we would be even MORE FABULOUS.

Momma Bear GEARING UP TO FIGHT

Crap. I am SO TIRED OF FIGHTING THE SAME BATTLES. We have been trying to get Blondie into a magnet school. It is for children with learning disabilities but NOT self contained mentally disabled students. These are kids who may need extra help with reading and math, and may or may not go to resource for help. They have smaller classes, and kids capable of a normal education who just need other strategies for learning. Blondie doesn't get resource help.... we're just starting to think maybe she should be evaluated for help with reading, but that process hasn't really started . This school's teachers have been specially trained in different programs to best meet the needs of their students.

A couple weekends ago I was at an education fair to raise money for the district, and their school had a display for each school. I went over to look at the display, and wanted to CRY because in talking with their resource teacher she knew immediately about Blondie's condition, had taught children with it, and didn't think it was that big of a deal. Do you know what a RELIEF that was?

We applied, and found out today that Blondie didn't get in.

So I took a deep breath, and had Brian call to see if they could let us know why. He was told that she scored 67 out of 75 points. Since she had only been evaluated for speech so far, they felt that her home school could best meet her needs. THEN THEY STEPPED IN IT. They also mentioned the fact that their buildings are currently a grouping of portables, behind another school, and there is "uneven terrain" due to construction. They have to go to the other school for lunch and related arts, etc. She thought it would be too much for Blondie to deal with. She also told Brian that with all of the construction, Blondie might be distracted by the noise.

SO LET ME RECAP.... My kid who finds reading difficult, with deficits due to brain surgery is too capable to go to a school with "regular" kids who find reading difficult, because she only needs speech therapy for processing skills because her school is just starting the evaluation process. If she doesn't qualify does that mean that my kid with h--- a brain is smarter than those with a wh--- brain? IN ADDITION, my child WITHOUT ADD/ADHD is more likely to be distracted by outside noise compared to those WITH ADD/ADHD who attend that school. Finally, my kid limps and "might find it difficult to walk", but spent this weekend hiking miles in the woods on a natural path, and didn't fall once, but can't walk on a sidewalk because construction is back behind a fence.

GROWL! Do you see the problem? Or is it just me?

I was hoping....

I was hoping today would be the day that I could catch Blondie's jumproping skills on video today, but she was so wiped out by the time she got to do it she could barely get it over her head. She worked on the ball a lot today, and changed up her routine. Instead of just lying on the ball, she supported her body (without sagging her tummy) with her arms while her legs held her up on the ball. Then she had to roll herself up onto her knees on the ball. After only a few tries, she was flat out on the ground and really finished. Thankfully she was still cheerful because we still hadn't finished her homework at that point.

Jumprope

FINALLY - Last week Blondie's therapist had her jumping rope, and my mom was able to catch this video.



This week she did even better! So, what's the big deal? A 7 year old should be jumping rope. Well this 7 year old couldn't really use her left hand, but she is STARTING TO MOVE HER THUMB. Did you hear that? MOVING HER THUMB. So she can now hold onto the handle of the jumprope, long enough to jump. Last week she was kind of throwing it over her head and then skip/jumping over it. It would fall out about every 3 jumps. Today, she went the length of the therapy office WITHOUT DROPPING THE ROPE ( about 12 jumps). Of those 12 jumps she managed to actually coordinate the whole "hold/swing over the head/jump it without stopping" thing about 5 times. She was really getting the hang of it.... so the next time you see a video of jumping rope she will look EVEN BETTER - or maybe we'll save it for the talent show in Baltimore this summer.....hmmmmmm.....

Grandma's day at therapy

I am swamped with the end of the school year, so this Thursday my mom took Blondie to therapy. She took these pictures and videos to show her progress.

She worked on riding her bike, and eating ice cream with her left hand. Her PT (in the pics) has her ride the bike to the ice cream shop to get her treat, and then sometimes they eat it together, and sometimes she eats it with OT.

I'm trying to get the videos of her up, but my camera is apparently having issues.

Bean Therapy

I was making a big dinner tonight - in a VERY hot kitchen (91 degrees today) and Blondie asked if she could help me snap the beans. "OF COURSE," I said, because I'm a sneaky mom, and bean snapping is therapy in disguise. So she sat at the table and put a bean in her left hand, and then snapped the ends off. Then we compromised and she put her hand over the bowl before taking the bean out of it with the right hand. The compromise for me was that she didn't have to sit there and wait for it to drop like she does at therapy - honestly, I was hungry, and I wanted to eat. After that she climbed up on her stool and dropped them into the water and salted them. So put your kid to work in the kitchen - they have to learn to cook too.




This is also FABULOUS cooking progress, because she didn't put my lovely beans in the microwave in a metal bowl ,with salt, and without water, like last time for 10 minutes.... oh that was a MESS!

Jumping through hoops

Blondie had OT and PT today. I missed PT again because of errands, but OT had her jumping through hoops.... literally. We're working on several things here, 1 - squeezing the hand and turning the hoop, 2 - if the hand falls off she needs to open the hand "normally" (not with her "good" hand) and then place it back on the hoop. It is sort of obvious in the video, and those of you who are doing this too can celebrate, because she DOES open her hand -sort of - and get a couple fingers back on.

The next video shows her rubbing her nose to turn her hand over. We don't know why it works, it has some sort of technical term, but I'm all for using it in case she can plug the ability to make it work into her brain and then eventually do it without rubbing the nose. The first time, she cheated and used her leg to help turn over her hand. The second one you can see what we're talking about. To hold that hand by itself you can feel it fight you to turn the "wrong" way, and then it will eventually release.

Back to therapy

Last week, Blondie had a week off of therapy because the OT and PT took vacation time. Blondie really needed the time off too, so she was quite excited. Today, however, it was back to the grind.

I had to attend a meeting at school, so my mom took Blondie to therapy - I missed PT, but got these pics from OT.

Today she worked on bending her arms in and out, and when she straightened them she had to work VERY hard to get that palm face down.

And then came the PUSHUPS. These are relatively new, and kicking her butt.

The back story

This is an exerpt from a past post about our daughter's disease. She was diagnosed with Rasmussen's syndrome/encephilitis in November of 2004. She subsequently had surgery to contain the disease and it changed all of our lives. We feel that we are now in a place that we are moving past the disease. It definitely doesn't define who our daughter is, or what our family is about, but when I started this blog a lot of people tuned in to see what she was doing. We are now part of a wonderful group of people who have also persevered through this disease, and hope that we can offer some insight into what is possible with a LOT of hard work and dedication.

Rasmussen's Sucks, but it isn't the end of the world

On Nov. 5, 2004 I got a call from daycare telling me something was wrong. She had walked out of the playroom, grabbed the cabinets and looked scared. She wouldn't respond to her daycare lady. Afterwards she had to go to the restroom, but kept falling asleep on the potty. I took her to the pediatrician, but neither of us saw anything wrong with her. She was playing and silly. So I took the rest of the day off to "observe" her, and went Christmas shopping. In a store she had her first seizure that I ever experienced, but KNEW EXACTLY what it was. Ended up in the hospital that night, stayed the weekend having seizure periodically, and then jumped on the medication train. I hated the meds, but made it up to Thanksgiving thinking she had epilepsy. The day after Thanksgiving we went back into the hospital and ended up staying three weeks. She was having hundreds of seizures a day - every 3 - 5 minutes. The doctors were testing for what it wasn't - everything was ruled out except an enzyme disease that was terminal, and Rasmussen's. There was no test for either unless we did a brain biopsy for Rasmussen's, but we were just wanting a second opinion at that point. We were sent home for Christmas and told to watch for limping, or not using her left hand. Three days after Christmas she held a cup by pushing it into her right elbow and then curving her arm around it - she had to be reminded to use her left hand. The next day she started limping.

By the end of that week Dr. Park at the Medical College of Georgia was able to see us. He had treated quite a few kids with Rasmussen's, and did the same surgery for intractible seizures, so he had seen it before. He took one look at her and scheduled the biopsy. About 10 days later we were at MCG - about an hour from our house- and biting our fingernails about someone opening her skull and removing a piece of tissue. Surprisingly though she bounced back immediately and was out of ICU in one day, and playing her bed just fine. Unfortunately the disease was moving so fast that she needed surgery immediately. They had to change her meds to decrease the chance of bleeding excessively during surgery, and allow two weeks for her to get them out of her system. The Monday before her third birthday her surgery would take place. Those were the longest two weeks of our lives because the seizures were SO bad. She was put on steroids, and began to eat OBSESSIVELY. She gained so much weight that her belly was solid and distended. Her round face because ridiculously chipmunkish, and we literally had to block off the pantry.

So on January 24th, 2005 she had her brain surgery. Brian and I, his parents, and my mom were all down there. We waited in the prep room trying not to be too anxious in front of her. I kissed her left hand, and watched her wheel off behind those swinging doors. After about 8 or 9 hours we were allowed back into the ICU to see her. What impressed me the most was how still her body was. Not a twitch. We had moved fast enough that it hadn't spread in her brain. By all accounts from the surgeon (Dr. Mark Lee) and Dr. Park, everything went brilliantly. Their was fluid between her skin and her skull, and made her head look even larger. She ended up with a black eye. Thankfully our surgeon didn't shave her hair, he just had someone sort of cornrow braid it out of the way so she still had her long hair. Every muscle on the left side was turned off, and had to be worked. It began with chewing. The first few hours food would get stuck in her cheek, and her tongue couldn't get it out of there. By the second meal she was doing fine. Notice in the second picture she was eating a French Fry. I think we only spent two nights in the ICU before we moved to the regular surgery recovery rooms. She began therapy immediately. She learned to hold her head up by herself, turn it past the midline, sit up for about an hour at a time, and stood on her own feet by Friday. We also celebrated her third birthday despite a huge ice storm. I remember being concerned because it took her awhile to get her personality back, but after about two weeks she would try to play again. It was hard though because she had to adjust to having only one hand working.

I remember the squish sound her head would make (like water trapped in a sponge), her head also seemed to get a little larger as the fluid moved around. It did go away, and everything is totally normal now, but it was a little unnerving at the time. These three pictures were all taken at the end of the first week.


It was recommended to us by these therapists that we go to a hospital in Atlanta for inpatient rehab, and I must admit to being surprised that Dr. Park actually thought we should have gone home. I wish I had listened to him. We thought at the time that inpatient would be able to give her more than regular therapy, but now I know better. We ended up going to Atlanta and I was miserable. I think it was a combination of stress (I gained 30 pounds from this experience), exhaustion, and the need to be a "normal" family again. We ended up staying 7 days, and I was SO WANTING to get out of there that I think they let her go just to get rid of me. I was supposed to wait to get her dressed so they could "supervise" me. I was supposed to get permission to bathe her so they could make sure I could do it. I had to be watched when she brushed her own teeth. I figured she was the 3rd of 4 kids, and I had plenty of experience helping kids get ready in the mornings. I'm also not an idiot, and Blondie's right had was what she used anyway to brush her teeth, so that hadn't changed. They were more than a little put out that I kept her in a stroller instead of a wheelchair. She couldn't walk that week because they couldn't seem to communicate with each other to get the correct brace made, so I finally said "I'm out of here, release her now." They attempted to schedule therapy in our town for her, but messed that up, and I ended up finding it myself.

The best advice I can give about therapy is to use tough love. I've mentioned it before, but I love Blondie and want to make her the best she can be. I have to care more than she does because she doesn't know about the future, or skills she will need. Children with this recovery process will cry and beg you not to do their exercise. They must. I played with her, scolded her, hugged her, and bribed her like you wouldn't believe. I will not be told to wait in another room. I must see what therapist are doing with her so that I can do it after therapy and in days in between therapies. I would also advise not to put limitations on children like her. Blondie is about to begin swimteam again, has her dance recital next weekend, thinks she wants to play soccer, climbs everything on a playground, and attends regular kindergarten for another 10 days. She is learning to read, and told me a lot of information today about an animal she is studying. She wants to call friends and go to their houses, and is manipulative with therapists.

We are now 4.5 years out from her surgery, and it is wonderful to say that it is not the driving, daily force that it used to be. I think about it a little because I'm always looking for ways to normalize things for her, but I have 3 other young ladies that I am raising, and disabilities will not get in our way. Brian and I are raising 4 young women who will all attend college and become whatever they want to be, they will be strong and independent and take care of themselves. They will not live at home (unless this gas thing lasts FOREVER) and they will find their own way to be an adult. We know what we want for our girls, and Blondie will meet our expectations just as the others work to meet them.

Today, her life has possibilities.