All about our Luella and her battle with seizures and Dravet Syndrome.
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8
Luella has been SO excited for her sixth birthday and it finally happened on Wednesday! Turning six called for several celebrations!
We were able to go back to my family's farm in South Dakota on the 16th. The kids were excited to ride in the combine with grandpa and we had a little birthday celebration there with my family. Her birthday was Wednesday and I think everyone who Luella saw heard all about her turning six! I brought special birthday donuts to her classroom and Luella was so excited to share them. On Wednesday night she opened presents from us and Grandpa and Grandma Johnson, then we celebrated with pizza at Pizza Ranch. The real big fun happened on Saturday when Luella had a party with all of her friends... eleven of them! The theme was Tangled / Rapunzel and Luella had a terrific time!! I was concerned that a seizure might disrupt her day since she is right at the one month mark and is "due" for one. We are so thankful for all the extra prayers to get her through the day. It was so much fun to see her enjoying herself! This was her first "friend" party and her friends treated her royally! I wanted this birthday to be one that she always remembers and I think we made that happen. Now she's already talking about turning seven...
There is a Change.org petition requesting the NFL to support Epilepsy Awareness in November. Please sign the petition. Here's what Change.org says...
Epilepsy Awareness is a wonderful and inspirational cause for the NFL to take up and we are reaching out to the NFL, NFL Teams and their sponsors asking them to support Epilepsy Awareness during the month of November and every November! We ask that NFL games would feature players, coaches and referees wearing purple game apparel, as well as additional on-field and in-stadium messages, all to help raise awareness for this very important campaign, it would mean more than they could even imagine. Most of the apparel worn at games by players and coaches, along with special game balls and purple coins could be auctioned off at NFL Auction, with proceeds benefiting fantastic Epilepsy Organizations around the country and the world! 3 million Americans have been diagnosed with epilepsy and the numbers keep growing by the day, month and year! Of the millions of Americans in this country, some either have epilepsy, a family member has epilepsy or they know someone with epilepsy! We want to raise awareness in a BIG way on their behalf! It would make a monumental difference for so many nationwide and even worldwide! This would only be the tip of the iceberg of what could be done if the NFL would just say "YES!" to our campaign for awareness for those living with Epilepsy. NFL, #DoTheRightThing!
Well, lately Luella has really been showing us all just how strong and determined she is! Today, this little lady is riding a BICYCLE WITHOUT TRAINING WHEELS! Wow!! If you had asked me during that first year or two when she was having many, many seizures if I thought she'd ever ride a bicycle I probably would have said, "I doubt it." But Luella had other plans and this past week that plan was to master riding a bicycle and she has it about perfected! Thank you Lord for gifts like these!
In other news, we had an IEP meeting at school last week to review some new resent testing that Luella had done after school started. She is THRIVING at school!! She has tested out of DAPE (Developmentally Adapted Physcial Education)! She has met all her goals and is right in line with what her peers are doing!! So amazing! She will still be doing OT and Speech but doesn't haven't far to go before she will met those goals as well! When school first started she was in the Special Education room for 30 minutes every day. Well, they are running out of things to work on in there! She is getting most of her work done right in the classroom so her Special Ed time will be reduced to only 20 minutes just three days a week!! How amazing is that?!? We feel SO blessed at the progress Luella has made and continues to make. She is just amazing us all by what she is accomplishing! School has been such a great thing for her and she loves it!
I tried to work with Luella all summer to write her name in title case. She fought me and just wanted to write it all caps. During the first month of school she went from writing her name like this... to this!
And her coloring has improved from this... to this!
We are SO grateful for the dedicated people who spend time with Luella during that day and have helped her grow so much during the first six weeks of school!
Thankfully Luella hasn't had any seizures at school although she continues to have about a seizure a month. Her last seizure was September 25th, the one before that was August 26th. We focus on the positive in that these seizures are now about every four weeks verses one a week about a year ago and almost daily back in the summer of 2011, and also that she is still showing Dravet syndrome who is boss by bouncing back so quickly and LEARNING TO RIDE A BICYCLE!!! WOOHOO!!
Luella has been SO excited for her sixth birthday and it finally happened on Wednesday! Turning six called for several celebrations! 
