We had such a busy weekend! With both the boys having baseball games both Saturday & Sunday, then church Sunday morning! Kenzie really didn't have such a great weekend. On Sunday she had 21 seizures, which is a lot for her lately. I'm so thankful that Jess stayed with her Sunday while she napped so we could go to the boys games. She slept for 4 hours! She was pooped from Saturday. It may sound crazy letting her sleep like that, but I know her seizures take a lot out of her even if they don't last that long. Yesterday they were down to about 15. Her behavior is better, so I am thankful for that, we are working on her not hitting. What a power struggle that is! She really hates to be told no, but I can't blame her, who likes to be told no!?
Yesterday I called our insurance to find out about our appeal letter we sent and never heard anything back! Found out the letters will not go before the board until July! I am fighting to get her dental procedure covered by our medical insurance and I'm fighting to get them to cover her genetic testing. The insurance wants a letter stating that her meds hurt her teeth and how the course of her treatment would change with the results of the genetic testing. It's just stupid! For those of you who don't know that story: Kenzie had to have 10 junior root canals and 10 crowns put on her teeth. One day at the dentist she had a few "spots" on her teeth, then a few months later she had holes in 2 of her teeth. When they put her under the dentist did xrays and found 10 of her teeth were full of cavities! So on November 1, 2007 she went under for a 2 1/2 hour surgery just on her teeth! The best part no dentist in our insurance plan will see her, so we take her out of network to Children's Hospital, and they don't take our insurance. It's just a mess! The genetic testings is being done to rule out Angelman Syndrome. The test did come back neg (as did all of the others for AS) but her geneticist still says there could be a chance she could have AS. We have an appt with her in June. Hopefully, because of her new seizures, she may have an idea of what road to go down next?! Sometimes, I just wonder if these doctors will ever come up with a diagnosis for Kenzie! I also wonder if we are suppose to get a diagnosis! I guess if things in life were as simple as we think they should be, then maybe we wouldn't have a story to tell. We would miss all those experiences that in turn could help others. It's really hard to keep that perspective. I just keep praying and asking God for strength, patience, and wisdom. Apart from Him, I CAN NOT do this!
May 20, 2008
May 17, 2008
Wow, what a day! We started at about 8am this morning, Corey had a baseball game at 9. After Corey's game, we went to another baseball game for their cousin Sami. Ryan's game was at 5:30, didn't start until 6! Finally got home at about 8pm! Wow! Long day! Kenzie did get to take a decent nap at home in between the games. She has been quite irritable lately. Not sure if it's the meds or just been a busy couple of days. Hopefully tomorrow won't be so bad. After church she can nap before the 3pm & 5pm games. Her seizures seem to be increasing again. She went from 20-30 a day to 10-15! Cut them in half, but now since we added the Lamictal her seizures are up to 17 or more a day (she had 17 today and the seizures seem to be so much more intense) Please keep praying for us! Her behavior seems to be getting a little worse. I'm just hoping that it's just been a crazy couple of days and she will get back on track!
May 16, 2008
So Kenzie is now on both Lamictal 5mg daily (2.5mg tabs 2x daily) and the Depakene 8cc 2x daily. We are praying this will work for her! Her neuro wants to increase her dose every 2 weeks, because of the possibility of developing a rash! (which increase when you taking these 2 meds together) He said it will take 2 months to really get an idea if the Lamictal is working or not! Her neuro also told us what next 2 drugs he wants to try then the Ketogenic Diet will be put into play, and if all that doesn't work we are looking at VNS! (Vagus Nerve Surgery) WOW! It was a lot to take in on Monday but, I know it will all be ok! All I keep thinking about is the verse Jeremiah 29:11 "For I know the plans I have for, plans to prosper you and not to harm you, plans to give you hope and a future." I know God is with us in all of this! He will not give us anymore than He knows we can handle! Although, I have to say there are days I really think God's got us confused with some other family!
We are well into baseball season! I know the boys wish the rain would stop long enough to play a game! It seems like forever since their last game! I was able to talk Wayne out of be a coach (manager, board of directors, league director, etc) this year! It's been really nice to have him with Kenzie and I in the stands! This is Corey's last year in the league, he will go up to Babe Ruth next year! Doesn't seem like I should have a rising 7th grader! Ryan is playing AA this year! I can't believe how big all the kids are getting! What a blessing all three of them are! Corey & Ryan are such good big brothers!
Welcome to Mackenzie's Walk : May 15, 2008
Mackenzie, we call her Kenzie, is a spunky little 4 year old! She loves her two brothers Corey and Ryan. She loves her puppies Zoey and Cloey. Kenzie has never met a stranger! Everywhere she goes she greets them with a "hi" and a beautiful smile! Her speech is limited, but she will do everything she can to get your attention. Honestly, its hard to miss Kenzie! We started seeing issues with Kenzie when she was about a year. She wasn't meeting regular developmental milestones and honestly I put it off for a while. Thinking it was because we really never let her do things on her own. She was the baby and only girl grandchild on both sides of the family! She started walking at 22 months. We had her evaluated by Child Find (special education for preschool aged children) and she qualified for services. So she started in the preschool program in November 2004, she just turned 2. She was showing mild progress, but in October 2006, was when things changed. October 9, 2006 Kenzie had her first seizure! After taking her to the ER, and seeing her neurologist, with nothing more than some blood test, CT scan and an order for an EEG, we went to Children's National Medical Center in DC. WOW, they were AWESOME! We went through the ER and things really started happening. They did a spinal tap, (NEG), another MRI (NEG, she already had an incidental finding of a Chiari 1 Malformation, non-symptomatic) and an EEG. Her EEG was abnormal (she had a seizure during the EEG) and she was then diagnosed with epilepsy, having complex partial seizures. After 3 days in the hospital she was put on Keppra 1cc 2x daily and sent home. We did have to up her Keppra to 3 cc once home, because of some little break through. Kenzie was seizure free for almost a year. In October 2007 (almost to the day!!) she had a break through seizure! Up her Keppra to 4cc with a few break through, but things were going ok. We had notice Kenzie falling down a lot. At first we thought she was tripping, but later we saw her fall and there was nothing to trip on. I started doing research on the internet and saw a description for atonic seizures! WOW! Then one day at school she fell 6-8 times for no apparent reason. We knew she was having atonic seizures (drop attacks). Called Children's and was told to bring her to the ER right away! When she was seen it was late and they just sent us home with her Keppra raised to 5cc 2x daily (1000mg). That was the first time I was really unhappy with Children's. Followed up with HER neurologist and they order another EEG. Came back, abnormal and she was actually having atonic seizures. Taken off of the Keppra (we had to ween her off) and put on Depakene. Kenzie started having about 20-30 seizures a day while on the Depakene. Which brings us to the present
