I know it's been a while, my computer has been down and I haven't been able to update, and our lives have been a little crazy! So I will just catch everyone up!
Shortly before Kenzie started school this year she started having myoclonic seizures and break through complex partials. So between the atonic, myoclonic and complex partials, things have been really bad! We have been just praying for Kenzie and staying in close contact with her neuros and her teachers. We had an appt with her neuro Marian on September 8th. Told her everything that was going on with her and she introduced us to Dr. Joan Conroy. Dr. Conroy just happened to be the doctor who read her last EEG. She confirmed that Kenzie has Lennox-Gastaut Syndrome and was very interested in have her do a clinic trial of Clobazam. The only catch was she had to be on the same dose of meds for 4 weeks. We were scheduled to up her dose of Lamictal the next day. So with a lot of prayer and seeing to we couldn't take the chance of her being put on a placebo dose. Her seizures were really bad! So Marian and Dr. Gaillard gave a a prescription for Topamax to help with seizure control along with the Lamictal. We decide to go that route. The next week (Wednesday September 17th) she had what looked to me to be a tonic-clonic (grand mal) seizure! I called her neuro, he thought it was a complex partial. (WHATEVER!) Ryan saw her have this one and I think that may have been the worst part!! It's hard for me to see this, but I hate that Ryan had to witness this! The following week on Tuesday (the 23rd) I was driving to work and saw an ambulance go by me, while waiting at the light. Needless to say I missed the light, which at the time was my biggest concern! (How selfish!) Once the light turned I saw where the ambulance was going, into the school where Kenzie goes!! I called Wayne to put my heart at ease and it didn't! Her teacher called him from school and the ambulance was for MY BABY!! I pulled into the school (I was right there, THANK YOU FATHER!) ran inside following some of the EMTs and saw my daughter crying, bleeding in her teachers arms! I scooped her up and just held her, talked to the ENTs and held it together! (That was all GOD, there is no way I could have done it myself!) She had just got to school and walked over to the sand table, her head dropped and she fell to the ground. She started shaking, her lip was bleeding (she hit it on the sand table when she fell), her eyes rolled and then she stopped breathing! It was for about 30 - 40 seconds, but a lifetime to the teachers! We took her home she slept for 5 hours, just exhausted. I called her neuro and they said to keep an eye on her and call them if she had 2 more or stopped breathing. We were lucky she only had her typical myoclonic and atonic for the rest of the day. The next night at 10pm she had another tonic-clonic, for about 2 minutes (it seems liked FOREVER!), she didn't stop breathing, but it was so scary! For the first time in a while, I just held her and cried! I prayed, that's all I could do! I know God has a plan for us, but it's just so hard to see your baby girl go through all this! I hate that the boys have to endure this as well, although they are so much nicer to her when they see a seizure. At least for a few days!!
On Friday September 26th, I had a women's retreat to go to for our church. I really didn't want to go, with everything going on with Kenzie, I was scared!! But, it was 20 miles from home, so I could be home ASAP, if needed! I know God wanted me to go, I had to lead the small group portion for my girls!! It was a really awesome retreat! Our speaker Sharon Glaskow, was just awesome! On Saturday evening after the retreat was done, I spoke with Sharon. I told her about Kenzie and she was just floored! I cried while telling her our trials with Kenzie! She prayed for Kenzie, she was so powerful! Sharon prayed for Kenzie to be healed, not only of her seizures, but for her to developmentally catch up with her peers! For her to become a young prosperous women! WOW! We have only been asking prayers for her relief from seizures, we never thought to ask for a miracle!! God is in the miracle business, so why not ask! After she was done praying, I just knew something amazing was going to happen!
When I got home from the retreat I told Wayne how awesome it was, then I asked him how Kenzie's seizures were that day. NOTHING!!!! Kenzie DID NOT have ANY SEIZURES on Saturday September 27th! It was a miracle! She had a few on Friday, but NOTHING on Saturday! PRAISE GOD! Which brings us to today, we are celebrating day 7 of NO SEIZURES!!! I have noticed such a change in her! She is more aware and she has new words! I am so THANKFUL! I know God is in control!!
Mackenzie will be 5 years old tomorrow! We had decided to only have family and close friends come and celebrate with us, for the fear of her not having a good day (her seizure activity). So tomorrow we will not only be celebrating her birthday, but the fact that we have had this time to be SEIZURE FREE! PRAISE GOD!
