I'm sure this analogy has been made before, but living with a child with Epilepsy is like living in Southern California and waiting for the next earthquake. Even the EEG monitor and Earthquake Seismograph make similar "wavy" motions when the event happens. As a California native, I've learned that you can't live your life being afraid for the next earthquake anymore than you can live in fear of the next seizure. Still, the feelings and anticipation are very similar for me. We had an earthquake last week that was centered somewhere off the coast near San Diego. I felt it from my 13th floor office in Newport Beach, and believe me is was a fun ride as we swayed back and forth and jiggled up and down. The earthquake itself was minor with no major damage, so it literally was fun… but it got me thinking about past earthquakes, and how scary they really can be. Is it going to be a mild 20 second seizures, or a 7 minute grand mal? Will we continue with what we were doing, or will our activity stop so we can call 911 and go to emergency? Like earthquakes, you just never know what to expect with a seizure.
This is just an update with the latest on the kids. I've been keeping some things out of email lately until issues were finally resolved, but our family has been on quite a roller coaster since the beginning of May. Upon our return from the hospital at UCLA for her testing in late April, we were asked to find a new daycare for Jack. I think he got to a crisis point where he really needed us to understand that he was afraid, and not getting enough attention. As I mentioned, he really didn't take our leaving for the hospital well, and cried hysterically like he'd never cried before. Later he was acting out by hitting and biting other kids. He was definitely trying to tell us something. Jack started a new daycare with less kids the following week. The change in daycare has been good for him and he is much more himself these days. You can't really blame it as Jack being spoiled or having unusual tantrums - he is going through more than most 3 year olds and handling it as well as can be expected. Overall, he's a great kid and is now having a good summer.
Shortly after Jack switched daycare, the Blind Children's Learning Center asked us to remove Jenelle from their "in center" program because they felt her seizures were "uncontrolled" and that she was "medically unstable" for in center therapy. We were devastated because we were not only forced to find new daycare on short notice, the act of removing her from therapy so abruptly because of her seizure status was a harsh reminder of the new "reality" we must face having a daughter with Epilepsy. Jenelle seizure status was really no different than it was before we went to UCLA, but upon hearing about her 7 minute grand mal and her new Diastat prescription, the school was concerned. We asked the Epilepsy Foundation and Regional Center to work with us and the school and eventually worked out the issues with a couple of meetings and an educational seminar on seizures provided by the Epilepsy Foundation. Jenelle started back to the "in center" Infant Development Program today and we are grateful that she is back to the wonderful therapy that was benefiting her so much. During this time, we kept Jenelle at home using our respite nursing and/or using various babysitters (Grandma and Aunt Nicki). Her therapy continued (PT and OT in the home) but it was not the same amount of hours as before and we definitely saw the difference, as did Dr. Shields. Regional Center really came through for us and now Jenelle will be getting 20 hours of in home nursing daycare, so we will have a nurse staying with her at home. At this time we decided to separate Jack & Jenelle in the daycare setting to make Jack's environment more stable, but now that Jenelle is back at school, and with their summer schedule, she will start in the afternoons at his daycare next week.
Some have told me that I probably shouldn't have told Jenelle's school so much about her seizures and her new diagnosis, but I feel I would rather have people know everything (even the scary stuff) for Jenelle's safety and benefit. It would not be in Jenelle's future interest if we did not advocate for Epilepsy and start educating the public now so they can understand her issues and accept them. I realize some parents feel they need to be private about their child's seizures, but I feel we are doing more for Jenelle by bringing them out in the open than if we were to keep them private. So as you can see, the past two months have been a real ride of ups and downs as we've been scrambling for daycare and managing to get through these difficulties day by day. We seem to have survived.
Jenelle is relatively stable at this time. She's been on the max dose of Topamax for a week or more now, and is fighting constipation and is still having daily mild seizures. She usually has a grand mal every two or three weeks, but all this is pretty "stable" for us… meaning at least we aren't in the hospital. She is really responding well vocally, and her vocabulary includes "ah boo", "ah pffft", and "uh oh". Jack has affectionately nick named her "Boo" and she is starting to acknowledge that name as well as her own. I'm trying to slip in "mum" these days and she seems to be hearing me. She is also holding up her head well, and lifting up her body while on her tummy. Its wonderful to see her do so well, though we did have a set back with the decrease in therapy.
Jack is your typical 3 1/2 year old, and makes us laugh every day. He has his first crush on "Dora the Explorer", and fell in love with a "Dora" electric toothbrush I purchased a few weeks ago. He literally told me, "Mommy, I LOVE her. I LOVE her Mommy!" While the toothbrush was an easy purchase, it was a little more difficult to explain why he couldn't have the "pink" Dora tennis shoes! Jack also has a new love for "pockets" and likes for us to give him coins to put in his "pockets". This has been an excellent tool for teaching him the names of coins, such as quarter, dime, nickel, etc. However, Brett was a little confused the other day when Jack ran to him saying, "Daddy, I want my money back!" We eventually learned that the money was "deposited" into Jack's tummy as Jack decided to swallow a quarter. I guess we'll be looking for the return on that deposit with "interest" in the next week or so. And finally, Jack had the clever idea to fool Mommy the other day into thinking he'd finished all of his dinner. I found his vegetables all hidden neatly under his upside down milk cup! Ah, this age is so fun. Jack really loves his "Baby Boo" and likes to help with her therapy. He is pretty much the only person that can get her to laugh and smile on command! Its wonderful to see!
So, that is our update for now. As I said, things are stable and moving along day by day. We're pretty sure that we'll be trying a new drug for Jenelle (Lamictal) at the end of the month since the Topamax hasn't stopped her seizures. Our next visit with Dr. Shields is in August.
Wednesday, June 23, 2004
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