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.