I know that some of you have been asking how our little Kylie Joy is doing...so, I thought that I would use this blog here to let you know how she is doing...
Our little Kylie had her first seizure in April of 2005 at only 2 1/2. Here she is pictured right around that time...
It was scary, came out of nowhere, and left many unanswered questions in our hearts and mind. After a few tests (an EEG and an MRI), we discovered that she had much abnormal brain activity (seizure activity) going on as well as an abnormal MRI which showed some "unidentified white spots." After her second grand mal seizure a month later, she was forced to be on seizure medication and was diagnosed with Epilepsy. MANY emotions, fear, anxieties, questions, and unknowns flooded our hearts and minds. Watching your child have a seizure is a nightmare...there is nothing you can do, nothing that gives warning that it is coming (at least nothing that a young child can communicate)...we felt so helpless and scared. She had a third grand mal seizure June of 2005 and the roller coaster ride of adjusting medications began. These seizure meds are tough stuff...they really made her tired, irritable, lethargic...my full of life, spunky Kylie was "gone." This too brought much more heartache and grief as we wondered if all of this was going to alter just who our little girl was...
We made it through the rest of 2005 with no more seizures and just some medication adjustments. However, in the early Spring of 2006, we noticed that Kylie was spacing out, looking off (sometimes mid-sentence) and occasionally having some head drops. Her seizures had changed from grand mal like ones to what are called partial seizures. Not terribly happy with the care that we were receiving here from our neurologist, we decided to see a specialist at the Minnesota Epilepsy Group as these partial seizures were happening multiple times DAILY. It was a ROUGH rest of 2006. We weaned Kylie off her current medication while adding two new medications. This brought more irritability, extreme tiredness, and just an overall change to my little girl's demeanor. And, to top it all off, the new meds weren't doing the trick. I don't know if I just expected them to work right away or what, but, my hope was fading. I wondered if Kylie would EVER find relief from these partial seizures. How was she going to function in school? How would kids treat her? The questions, fears, and doubts flooded my mind and heart again. I can't even tell you how many TEARS I have cried through all of this. But, the Lord carried us through. Even though our circumstances didn't change and Kylie wasn't doing better right away, He was our strength and our HOPE. Yes, we had to have hope that things would get better for Kylie. But, more than that, we had HOPE that the Lord was going to use "this" all for His glory (Rom. 8:28). That verse was what I clung to when the "whys" came and when the emotions flooded my heart. God was going to pull us through...no matter what!!!
Here is Kylie the summer of 2006...
The fall of 2006 brought more stress when on October 1, Kylie had another grand mal seizure. I couldn't believe it...she hadn't had a grand mal for almost 16 months. The doctors were trying to wean her off one of the meds at that time, so they quickly put her back on it...and she hasn't had a grand mal since...a little over a year!!! :-)
However, around Thanksgiving of 2006, things finally started to look up a bit. The partial seizures seemed to be more under control. After months upon months of watching and anticipating her every move, I finally could say that she wasn't having them anymore. Her little body was adjusting to the meds better (it was tough at first...at some medication increases the poor little thing would throw up because it was so hard on her stomach) and she wasn't quite as tired and lethargic.
We finally felt like we were on the right track. In December of 2006, she had another EEG, and for the FIRST time, the doctor said that he would label that EEG as "NORMAL"!!! That was music to our ears...the meds seemed to working and we were thrilled!!!
That brings us to where we are today. It is about a year later and I am SO happy to say that my little girly is doing GREAT!!! It brings tears to my eyes to think back on this "journey"...tears of sadness and heartache on the pain and hurt that we felt, yet tears of joy as to where the Lord has brought us and our little Kylie Joy. He definitely DOES use our pain to grow us...our hurts are never in vein! I take great comfort in that...and that the God of all comfort does hold us up and give us the strength to persevere on when the going is tough!!!
Here is an updated picture of Kylie from this summer...
We don't know what tomorrow will bring (of course we don't...none of us on this earth do!). But, we know that God will carry us through... Kylie could have another seizure at any time...right now, we are just enjoying this "lighter" season in our lives and really are learning to take life ONE DAY AT A TIME...not my specialty!!! I am really good at getting emotionally worked up about things that might not even happen!!! The Lord continues to mold my weak places and stretch me... Too bad that there are just so many!! :-)
Anyway...again, this is getting long. But, I just wanted to share where we are "at" in this journey with our little Kylie... We have appreciated the love and prayers of family and friends through this all!!!
We are blessed to have her in our family! We love you, Kylie Joy!!
