Today Kenzie is 6 years old! I can't believe she is 6! Wow, how time flies!!
I still remember being in the hospital having my baby girl! What a joyous time! Although, it seems like yesterday we where in the hospital after she had her first seizure! On the 9th it will be 3 years we have been dealing with seizures. I can't believe it's been that long. It is hard for me to remember what life was like before seizures. I have to say Kenzie is doing really good! She hasn't had a seizure since Friday. She had 2 at school. So far so good. We are still on the edge though just waiting for her to have an atonic seizure. A week ago Saturday, she had a complex partial in the car which lasted 2 minutes. Then the next day on the way to church she had another cp which lasted just about 2minutes. It always seems like she starts having the big seizures right around her birthday, so we wait for the shoe to drop.
Kenzie seemed to have a good birthday! We went to Burke Lake Park with family and friends. Had cake and ice cream, then rode the train. She loves the train! She got lots of nice stuff from everyone! Then tonight we went to dinner and the waiters all sang happy birthday to her, while she had an ice cream sundae! Not a bad birthday! On Thursday I will bring cupcakes to school for her to celebrate with her class.
Kenzie loves school! She is doing so well! She has made new friends! We had to take her to school the other day after a dentist appointment and some of the kids came up to her hugging her and were so happy to see her! It makes my heart swell, when I see how much people love her! She is such a joy!
Corey & Ryan are doing well! Corey is playing fall baseball with his friend across the street. He really liking it. Ryan is still playing football. They just had their first lose of the season on Friday, it was sad, but I know they will come back even stronger!
I will try and post pictures of her bday party & some from the boys games here real soon! It's off the bed and ready to start the week!
October 4, 2009
September 8, 2009
Wow, it's been a while! Sorry about that! Things have been busy at our house (as usual). Kenzie has changed meds and up meds, so much has happened!
Kenzie started Banzel, a new seizure med on the market. She is now taking 400mg 2x daily and things are going really well. She is off Topamax completely and her Lamictal is 100mg 2x daily. We lowered her Lamictal back down to 75mg 2x daily. We were at the beach and she got a rash, it looked like hives. So we lowered her Lamictal, and the rash went away. Since we lowered her seizures increased (we were only have 5-10 atonic seizures a day) and her behavior was not good. So we upped the Lamictal back to 100mg and things are getting better.
Today, Kenzie started Kindergarten! She is going to a different elementary school than Ryan, but that is fine by me. We were hoping she would stay at her pre-school for kindergarten, but the county moved the program to another school. The teacher knows her from last year, she was the teacher who came into her class last year to observe the kids. So she knows her teacher. She rides the bus to and from school. She loved it today. When the bus pulled up, she go so excited! She goes all day and didn't get home today until 4:20. She didn't seem tired when she got off the bus and she is still going. I hope she stays this way all year! Needless to say she had a good first day, oh and NO seizures at school! She has had only 2 as of 6:15pm this evening!
Ryan is now in 4th grade! He had a good first day too. His best friend is in his class this year, so that made his year! His teacher's son played baseball with Corey a few years ago, so she already knew Ryan. It's good she has a kid in sports, so she can understand Ryan better. He his playing football now and loving it! He plays both offense and defense, the kids never comes off the field! So far they have had 4 (?) scrimmages and won all of them! The team looks really good this year! Oh, and of course Wayne is the defensive coach again! Ryan has had the same head coach for 3 years now. He really is a great coach! Wayne has recruited one of his friends and his cousin to coach as well. This is going to be a great season!!
Corey is now in 8th grade! Can you believe it!! I know I can't! It took all of me not to cry when he left for school today! I don't even want to think about next year!!! He had a great first day! He has a few of his friends on his 'team' and in some of his classes. Corey is not playing any sports right now, his basketball season will be starting in October. He wanted to play fall baseball, but decided not to because his friends that play weren't going to play this season, they are all playing football. I wish he would play football, but he wants to play next year when he is a freshman.
I have started working 3-4 days a week now. I work for a billing/collections agency. It's a small company and very flexible, which is good with the kids. I really love it! Works out really good right now with the kids in school, I even have a little time to myself before the kids get home from school!
Well, I think you all are caught up now! Until next time!!
May 9, 2009
I have posted some pictures of Kenzie riding on her horse Comet! She is a big girl now. She rides in a saddle and sometimes she will ride side saddle! She loves riding!
May 3, 2009
We had our appt with the neuro. We have up her Lamictal to 75mg in the am & 100mg in the pm. Topamax is the same. We haven't noticed any change in her seizures. She is still averaging 15 a day, atonic seizures only. I have to make the call to her neuro to give her an update on Kenzie. I'm sure we will up it 100mg both am & pm. Her neuro said that we would be at our max then and we would have to start looking at other drugs. We only have 2 other drugs to try and then we are looking at the ketogenic diet or VNS. We will see what happens.
Kenzie is still doing here therapeutic horseback riding and loving it!! She is starting to ride a horse now named Comet. Kenzie does so good with Comet and she is such a good horse. Kenzie rides in a saddle and hold the reins (sometimes). She sits up much better than she did before!
This is a link to a our story that was told by myself at the National Walk for Epilepsy:
http://epilepsyfoundation.ning.com/video/personal-story-29
At the walk they had a station for you to tell a little bit about your story. I hope you enjoy it!
We will be having her IEP for her placement for Kindergarten soon. I have no date yet, but we are still praying she stays at Keene Mill, the school she is at now. We are very happy with the principal and the staff is very much aware of all of Kenzie's 'stuff'.
Corey is doing really well on his baseball team. He had his first strike out of the season on Saturday. He was upset with himself, but he played such a great game and had already had a good at bat earlier in the game. I'm so proud of him! This season is HIS season, he is shinning!! He plays 3rd base and caught an awesome fly ball on Saturday! It's so great to see him do so well and truly enjoy himself!
Ryan is doing good too! He hasn't been doing as well as he usually does, but he is doing good. He says he would rather quit baseball & wrestle all year long. BUT, his team is undefeated this season!! His flag football team is undefeated as well! Maybe he's just bored with it. He honestly needs constant motion. When he's playing catcher he's all over it! Oh well, season will be over in about a month. Then it's time to prepare for football season, which pleases him! Such a funny kid!
That's about it for now! Till next time!!!
March 29, 2009
I am so happy to report that our family walked in the 3rd Annual National Walk for Epilepsy yesterday. It was raining, but not as cold as I had expected, so I am thankful for that. We got downtown in enough time to get our Starbucks and see some of the tents they had set up before the Walk. It was a great day! Our team raised $2,490! We had 24 people in total walk! Next year, I hope to double the money raised and the people walking with us! Kenzie did great, she rode in her stroller the entire walk. Last year Wayne had to carry her on his shoulders. She had so much fun with all the people there. Our team got a picture with Alan Faneca, from the New York Jets. He has had Epilepsy since he was 15. Here is a link for his story on the Epilepsy Foundation website:
http://www.epilepsyfoundation.org/epilepsyUSA/faneca.cfm
He is a true inspiration and a supper nice guy! After the walk we all went and had lunch. All in all it was a great day!! I will upload the photos as soon as I can!
Kenzie is doing ok. She had a total of 25 seizures yesterday, but I guess that was because she got up early and it was a long day. She is averaging about 15 seizures a day still. We have an appt with her Neuro on Monday the 6th. Her behavior has not been all that fun. She is moody and angry a lot lately. I think it has a lot to do with the meds. Another issue for the Neuro on the 6th.
The boys are doing well. Corey got on the baseball team he wanted to get on! He is so excited about that. I think he will have a GREAT season!! Ryan got on the team he wanted as well and is doing well! His flag football team is rocking! The are 2-0 now! So cool!
I will blog after Kenzie's appt, hopefully with so much more info!
March 15, 2009
I offically have a teenager! Corey turned 13 on Monday! WOW! He has baseball tryouts next Sunday, it was today, but got rained out. Ryan has started his practice for baseball and flag football! Crazy I know, but I am confident that we can handle (Ryan too) 2 sports at the same time!
Kenzie is doing good! She is still having atonic seizures and now is having myoclonic seizures. We are averaging about 10 a day between the 2 types of seizures. It honestly seems to be a pattern, this is how it all started last year. She started having atonic seizures in late January and started the myoclonic in February, March. Hopefully, with her being on different meds than last year and with us upping the meds gradually maybe we can stop the pattern, before we hit the tonic-clonics.
She will start her second session of therapeutic horse back riding this Thursday. She loves it! She is doing so well! Kenzie knows when we make the turn from the main road to the stables, she starts 'calling' her horse and smacking her leg! When Dixie comes out into the ring and the helper comes to bring her to Dixie she starts 'running' to her. It's really great to see her so excited about this. I thinks it's really helping her. She tries to communicate more with us, and makes a lot of little noises.
We went to her re-eval and she has been given a label. The label for her now is OHI, Other Health Impairment and MR, Mental Retard. It was really hard to hear MR. I know it doesn't change anything, she is the same little princess we all love, but for someone saying your child is MR, is a tough pill to swallow. According to the social worker at her school this will get her more services through the state and more options for schools too! I don't think she will go to our home school, I am hoping she will go to the same school she is at now. They already know her and love her, even the principal is under her spell! But, she will obviously be in a different classroom. We will be able to visit the schools with MR programs before we comment to anything. Although, that will not be til the end of the school year. I'm just a little nervous about the change for her.
March 28th is the 3rd annual National Walk for Epilepsy! I hope all of you will join us in the walk! Go to www.walkforepilepsy.org, search for Team New Hope! If you can't walk, please consider supporting us!
Epilepsy Facts:
Over 3 million Americans have Epilepsy
200,000 new cases are diagnosed each year
45,000 of children under the age of 15 are diagnosed with Epilepsy each year
In 70% of new cases no cause is apparent
February 2, 2009
Things are crazy around here as usual! Kenzie is doing really great! She has started her horseback riding and she loves it! Her horse's name is Dixie. She is a beautiful white pony. Kenzie will say 'whoa' and is trying to say 'walk on'. She will ride her horse around the ring and wave to us as she goes by. Kenzie is really enjoying herself! I'm so happy it's working out for her. At first she was very apprehensive. She started crying and was a scared. But the woman who was helping was very gentle and great with Kenzie. When she put Kenzie on Dixie, Kenzie kicked Dixie and the horse didn't even move! I knew then we had a great horse! Her evaluation went very well and so she will ride for 8 weeks this winter. If she continues to do well and we are interested then we will sign up for 8 weeks in the spring. Every time when Kenzie sees a horse on tv she gets excited and will make a 'horse noise'!
We have a re-evaluation coming up for Kenzie tomorrow at school. The school has tested her to see if she will still meet the requirements for services through Fairfax County for the coming school year. This is something they do every 3 years. This is our big one though! Her teachers, the county psychologist and social worker along with her OT and Speech therapist will be the ones making that decision. Kenzie will also get a label. The label she has had for 3 years now is DD (Developmental Delay) is only valid for Child Find children. Once the child starts kindergarten she must have a label more specific than DD. I know she will qualify for services, I'm just nervous about the whole label thing. I know a label will only help her and not change her, she will always be Mackenzie! So if I just ask for prayers!
Ryan has been doing really well with his wrestling! He has placed 1st 3 times and 2nd 2 times! We are so proud! They are really long days, but we all enjoy them! We have had several of our friends come to see him wrestle, it's been fun this season!!
Corey has been doing really well with basketball. Although, his team has yet to win a game, Corey is playing really well! We are so proud of him, he has come so far from the summer!
We have also signed both the boys up for baseball already! Planning for spring, WOW! Corey will be playing Babe Ruth, which is with the bigger kids now! I can't believe he will be 13 in March! Ryan will still be with WSLL (West Springfield Little League), but there a few Majors coaches looking at him this season! Majors is the highest you can go in WSLL, it's not so common for 9 year old kids to play majors! Plus, Ryan is a catcher which is huge thing too! (So they tell me!)
School is going really good for all the kids as well!! We are very blessed!
Don't forget to join us for the 3rd annual National Walk for Epilepsy in DC on March 28th! We have a lot to be thankful for this walk! Kenzie has been seizure free for over 4 months now!! So join us in walking and raising money for a cure for the tragic disorder!!
January 4, 2009
My first entry for the new year!! I'm so excited to report that Kenzie is doing GREAT!!! We have reached 3 months of being seizure free!! How awesome is that ?!!!
Christmas Eve Kenzie woke up with an ear infection, so of course we had to take her to her pediatrician. He put her on antibiotics and ear drops. The next couple of days she was little cranky, but that was all! I can handle cranky. Christmas was great! The boys got a lot of cool things and Kenzie got a few baby dolls. But, I think her favorite is her new Elmo Live. It's such a cool toy, he tells stories and plays games. Very interactive. Corey got a dell laptop, from Grandma!! WOW! I'm jealous! Ryan got a few jerseys. It was a great Christmas! We had dinner here with all of the family and some very close friends!
On Thursday Ryan will be 9 years old! I can't believe it! My kids are getting so big! Wrestling is going great for him. He got first place in his first tournament on December 13th!
Corey's first basketball game is on January 17th! He can't wait for the game to start!
Kenzie will start therapeutic horseback riding lessons on Thursday! We are so excited, I think it will really benefit her! Although, in October we went to Cox's Farm and they had some horses. She was terrified! She loved horses a few months earlier, not sure what happen there! So I am hoping she will return to her love of horses! We will see!!!
Well, I think that is it! Things are really going well on the medical front here! We are so blessed! We have so much to be thankful for!
Don't forget to sign up with Team New Hope for the 3rd Annual National Walk for Epilepsy on March 28th in DC!! I hope to see you all there!
November 6, 2008
We are officially at 40 days! Wow, God is good! Kenzie does once again have a cold and is on her 2nd round of antibiotics. Her pediatrician thinks she may have allergies, just like the boys and me! How did they all get Wayne's good looks and my stupid allergies! How funny! We are doing really well! Her behavior is a little bit off, but I imagine being sick and the Topamax isn't helping either. We have her IEP coming up on the 18th of this month . We will be talking about getting her evaluated for kindergarten next year. Can you believe it! She is getting so big!
I have finally figure out how to put a slide show on here, I hope you all enjoy it!
I have signed up (as well as the rest of my family) for the National Walk for Epilepsy! I will be sending everyone an email inviting you all to join us on March 28, 2009. I'm so excited! This is such an awesome experience! Last year there were over 8,000 people and over $2 million raised! This year our team goal is $5000 and I am faithful we will reach it! So watch for my email!
October 27, 2008
Wow! God is so good! Kenzie has officially been seizure free for ONE MONTH!!! How amazing! She is doing really well! So well, she has new words! She said Corey for the first time yesterday, of course it was because she wanted something. She is amazing! When ever I am on the phone she runs up to me and says "hi" telling me she wants to talk. She will get on the phone and say hi really softly. She will say hi louder than start laughing. It's so great to see her so happy!
She had gotten a pretty bad cold about a week after her last seizure. It had me on pins and needles thinking for sure she would have a seizure, but she didn't. She is feeling so much better in more ways than one.
Our family went to Cox's Farm last Sunday as we always do every fall. We get our pumpkin and the kids play on the slides and whatever else they have there. They have goat farm. You can feed the goats and pet them. Kenzie as well as the boys really enjoyed that. They also had pony rides. Kenzie loves horses. So we got her ready to get on the pony and she freaked out! I couldn't believe it! She wouldn't go near that horse. She was scared out of her mind! I guess there goes her doing the therapeutic horse back riding. She is on a waiting list, it's suppose to be about a year waiting list. Well, next month is a year. We will see how that pans out.
Ryan's team is in the playoffs! I am so excited for him! They are 4-3, but I have faith that they can win the whole thing! Not sure if there first playoff game will be on Saturday or Sunday, we will see! I have signed him up for wrestling again and we start that next Tuesday! Can't wait!
Corey is signed up for basketball. He has never played regular season basketball, just summer league. What a crazy winter it's going to be!
November is Epilepsy Awareness Month!!!!! Now I hope all of you will get your purple ribbons (I have some email me for one!) out and wear them all month long and your wrist bands too! We need to erase the stigma and get the word out!
- Epilepsy effects 3 million people in the United States and over 40,000 of them are children under the age of 15!
- About 200,000 new cases each year!
- 70% of new cases no cause is apparent!
- More people are diagnosed with epilepsy or seizure disorders than with Parkinson's disease, cerebral palsy, multiple sclerosis and muscular dystrophy combined!
October 7, 2008
Wow, PRAISE GOD! We are on day 11 and no seizures! I just can't believe it! Kenzie is doing so well! She is "talking" and letting everyone know she is feeling good! She was up some of the night last night coughing, so I'm praying that she gets better. When she gets sick, she tends to have more seizures, being sick lowers her seizure threshold. So be praying for her to get well soon!
We celebrated her 5th birthday on Saturday! I can't believe she's 5, it seems like just yesterday she was born! We had her party at Burke Lake Park in Burke and she had a blast! They have a train and carousel. Kenzie loves the train, it's her favorite!! Most of the adults rode the train with her! You know it's just amazing how many people love this one little girl! Grown men she has wrapped around her finger, she's a very lucky little girl! We are lucky to have her!!
October 3, 2008 THE BOYS
So much to cover, and I forgot the boys! Sorry! Corey loves school! He is doing so well! I just got his interims today and he is getting all A's & B's! I'm so proud! He is so big and he knows it! I can't believe how mature he has gotten in such a short time!
Ryan is doing great! School is good, but it's hard for him. He struggles with his reading, but makes up for it in math! He is doing so good in football! He's such a leader! His team is 3 - 0! WOW! I'm so proud of my boys!!
October 3, 2008
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!
August 13, 2008
The visit to Johns Hopkins was great! We had an appointment with Dr. Eileen Vining and we were very happy with her! Dr. Vining has been practicing for 30 years! She said the course of treatment we are getting at Children's is what she would do. So for the time being to stay at Children's, but when it's time to get on the Ketogentic Diet we should come back to Hopkins. Dr. Vining also took a look at her last EEG and said it looked terrible! Kenzie was having seizures the entire time, with the exception of a few seconds rest! Her seizure pattern was characteristic of Lennonx-Gastaut Syndrome, but she is not a classic case. She has 2 of the required symptoms, but in order to be diagnosed with LGS, she has to have all 3 (characteristic EEG, 2 types of seizures and mental retardation). She does not feel at this time Kenzie can be said to have mental retardation. But, Dr. Vining wants her to be part of the new research study called the Epilepsy Phenome/Genome Project. Even though she has no siblings with Epilepsy, she does have some of the LGS symptoms. If that makes since. So Hopkins should be contacting us to set all of that up. All in all it was nice to have the confirmation from them that the treatment we are receiving from Children's is what Hopkins would do! What made it nice to was, Dr. Vining also knows both Kenzie's neuro and nurse practitioner personally! Dr. Gaillard (Kenzie's neuro at Children's) trained at Hopkins. So I think it went really well.
Kenzie is currently on Lamictal 25mg 2x daily and Depakene 2cc 2x daily. We are weaning her off of the Depakene and hoping to be done with it in 2 weeks. I do have a call in to her Neuro. Her seizure activity has increased. Over the weekend she had 26 a day! Yesterday she had a complex partial just a few seconds and 19 atonic seizures. We were doing so well!!
Friday was a very ugly day! I had a conference for church both Thursday and Friday. I had no cell service. Friday morning I was enjoying the speaker and my name flashed across the screen! I called Wayne, he was on his way to Fairfax Hospital. Kenzie had a seizure at school and hit her head! She end up needing 2 stitches and glue. The doctor in the ER, I was not pleased with. After it was all over I told Wayne how proud I was of him for not punching the doctor in the face!! Kenzie felt every stitch. Every time he went to "sew" her up she would scream at the top of her lungs! It was truly heart wrenching!!! I told Wayne it was as bad as watching her have a really bad seizure!! From now on we will go to Children's for her ER needs! I wish I would have listened to my gut and had them put her to sleep! So Kenzie did not finish her last week of school! I will just stick with her teachers during the school year and no more summer school!!!!
Corey is done with basketball and he had a great season. We are very proud of him! Now he wants to play basketball in the winter, it'll be a stench with wrestling, but we can do it! His school Open House for school is the 27th. He will get his locker and his schedule. He is so excited, and a bit nervous!
Ryan has started football! His positions are middle linebacker and running back! Look out LT! Wayne is the defensive coach this season! His Open House for school is on the 29th! I know he's not excited, but I know I am! Crazy as always around here! But that's just what we do!!
July 17, 2008
WOW! I know it's been a while, but I have some exciting news! We have an appt with Johns Hopkins on July 29th! I can't believe how quick we are getting in! I can't wait to hear what they have to say about her. We also have since had an appt with her neuro at Children's. We have changed her dosage again with her meds. We will weekly increase her Lamictal and decrease her Depakene. She is currently on 3tabs (15mg) 2x daily and 6ml (250mg per 5ml) of Depakene a day. Next week, we lower the Depakene to 5ml and continue that pattern until she is off the Depakene. The Lamictal we increase her pm dose then the following week we increase both am and pm dose. I know it sounds confusing, but her doctor wrote all this down and I have it all on the calendar! She has her good days and her bad days with her seizure activity. She is still having anywhere from 8-14 a day. Which is good, but needs to be better!! So that is where we are right now with the meds and the doctors.
Kenzie has been doing really well with her speech therapist! I have seen some improvement with her trying to communicate. Her therapist has also taught me some things as well! It's been a really good experience for both of us! Kenzie also starts summer school on the 28th of this month. She will ride the bus to and from school. I just have to get her back on a school schedule! She has been sleeping a lot more lately, but I know that has a lot to do with her meds changing weekly. I have to say though it's really nice to sleep in!!
We took a trip to the beach for a couple of days, just to get away. Kenzie really liked playing in the sand, and she even played a little in the water! We all had a great time! I wish we could have stayed longer!! I will try and put some of our beach pictures on here soon!
Corey is playing summer basketball and loving it! He scored 2 baskets at his last game and had 3 steals! I think we are going to try and work it out for him to play in the winter! Ryan wrestles so it's gonna be stretch!
Ryan goes to wrestling camp next week, just in the evenings at South County High School. He is really looking forward to that. He also has football practice once a week, and Wayne is coaching football this year! The two of them couldn't be more excited! Just busy as always here at our house!
June 27, 2008
Well, I wasn't able to post a soon as I had originally thought, but go figure! It's not like I have anything going on at my house!!! We have offically up Kenzie's dose of Lamictal to 20mg a day! I am seeing a difference with her seizures. She is averaging about 10 a day. She is also more sleepy than usual. I have to admit, it's nice that we sleep in until 9am now! I know I will have to get her on a better schedule once summer school starts. I am waiting to here from her neuro to see when we are going to start lowering her Depakene.
The genetics appt went really well. Dr. Tifft had a few other things she wants to test Kenzie for, I honestly can't remember what the test where for. By the end of the appt she had said that she did not want to rule out Angelman Syndrome just yet. It's still just a wait and see thing. Also, waiting to see what these other test results say. Although, she was very interested in the fact that Kenzie has a new type of seizure! I had brought up to her, what if the fact is Kenzie has Epilepsy and that's her dx?! That she may have been having seizures all along and we never picked up on it until she had her first big seizure. She did agree with that thought as well. I also mentioned to her about the EEG pattern and told her who read the EEG. Dr. Tifft said that if the doctor who read it (she is THE neurologist in reading EEGs) said that her spike and pattern was suggestive of Lennox-Gastaut, chances are Kenzie has Lennox-Gastaut Syndrome. Her neurologist have not given her that dx, saying she is not a classic case?! Not sure what that really means.
Wayne and I really had a neat experience on Thursday (the 19th). We had a conference at the Epilepsy Foundation in Landover about VNS thereapy. When we got there we were the only HOPE mentors there (HOPE is Helping Other People with Epilespy) so we had a chance to talk with the VNS representives. One of the women there was from Johns Hopkins!! I told her about the whole LGS thing and the medicine issue we have been having. I truly just want to get a second opinion. She took our information and I heard from her yesterday. She is trying to get us in with Dr. Kossoff (I was given his name by a family from the Walk for Epilepsy). I am very excited to see what he has to say. So hopefully the next blog will be about our trip to Hopkins!!!
