Rasmussen's sucks but it isn't the end of the world

Part of the reason for starting this blog was to keep in contact with family regardless of their location, but the other reason was to share our experience with Blondie's illness. I decided a long time ago not to go too public with the details of Blondie's illness/surgery, but those that know us are lovely and let her live her life. Those that are facing this brain surgery are desperate to see pictures - they MUST see them because they need to be prepared. Several new families are part of a group I belong to and are either scheduled for surgery or trying to decide what to do, so I'm going to post pics here to share with them. The picture above shows Blondie at age 2.75 the weekend before seizures began. Totally normal, but she was receiving speech therapy because she was behind in that department.

Then 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 3.5 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.

With Dr. Park on her two month checkup