National Epilepsy Awareness Day

March 26th is National Epilepsy Awareness Day, also known as "Purple Day." There are many events going on across the nation to raise funding for children with epilepsy. There is currently nothing going on locally, but one day, Chris and I would like to change that. Maybe have a walk in Marion or something similar. We know how hard it is finding funding for families with epilepsy and would like to contribute to that fund in some way.

Cutter has been through a lot in the past year, but he has come so far. This time last year he was having 25 seizures a day, couldn't even hold his head up, and he just laid around. It was pitiful. Now, he is very active, gets into everything, and can totally light up a room.

However, Cutter is still having seizures and this has been a rough week for us. One of his seizures lasted over seven minutes, and that was the longest seven minutes of my life. But when he finally snapped out of it he played and laughed, and it was like nothing had ever happened! Thank God for moments like that. He gives us what we need exactly when we need it.

They have upped Cutter's meds again to see if it will control his seizures this time. They didn't want to up it but he has done so well on Zonegran they felt like he would do fine. However, if we start to see any side effects we can always drop him back down. So far, he has done well and hasn't had a seizure since Monday.

Once again, we thank you so much for your prayers and support. Our little boy is loved by many people, and we are so very blessed to have such wonderful friends and family.

Enjoy this spring weather!

Chapel Hill Update

Hello,

We went to Chapel Hill last Tuesday to see Cutter's neurologist down there. His name is Dr. Greenwood. It has taken almost one year to get an appointment with him! We actually didn't even get an appt. with him. We saw a Nurse Practitioner and Dr. Greenwood stopped by to see Cutter. We were at the hospital for FOUR hours. We left very discouraged, but it will be okay! Dr. Greenwood told us that he is very disappointed that Cutter is still having seizures. He expected that by this point he would have completely stopped. He was very happy with Cutter's development, but he was very worried about the future and Cutter's development if the seizures continue. He wanted to change his medication to Carbamezapine. He told us that he would be in contact with Dr. Huffstutter about what to do. We left discouraged because we think that Cutter is doing great, especially if you look back to where we were one year ago. However, we do understand that Cutter's development will suffer the longer he continues to have seizures.

We talked to Dr. Huffstutter the next day, and he told us that he agreed with Dr. Greenwood, and that maybe changing Cutter's medicine would do him some good. However, the longer we talked about Cutter's past and the past medications he has been on it dawned on him that Cutter has been on Trileptal before. Apparently Tripleptal is very similiar in makeup to Carbamezapine. Since the Trileptal did not work before Dr. Huffstutter was not sure that he should be put on this other medicine. After talking with Dr. Greenwood the next day they both decided against changing the medication. So, for right now, we are doing nothing.

We love having a Christian doctor working with Cutter. Dr. Huffstutter told us that we would just pray about the situation and what to do next if Cutter keeps having seizures. And we know how far prayers go! God is great, and He will not fail us. We just have to trust in Him!

Thank you for your continued support! We will update you soon!

Cutter the Clown

Hello!

Just a little update about Cutter. First, and foremost, Cutter is a hoot! He makes the funniest faces and loves to yell at everyone! We think he really just likes to hear his own voice. He is progressing so well with his physical development. He can take about eight steps on his own! He tries so hard! It is so funny to watch him waddle through the house. We certainly do enjoy having a little one in our house!

As far as his seizure activity goes he is doing fairly well. He continues to have a seizure every few weeks, but we know that this is something to be expected. However, it is still hard to watch him have one. :( His last seizure was this past Monday, and it lasted about a minute and a half, but after a quick nap he was ready to go again! :)

Thank you for all of your prayers. We greatly appreciate every one! We go back to Chapel Hill in March, so we will keep you updated!

Update

Hello,

Just a quick update about Cutter. He is still having some breakthrough seizures, though they are still mild and infrequent. He had one on January 10th and on January 17th. They still seem to be triggered by lack of sleep. (He still rarely sleeps all night long without waking up!) However, even though he is still having seizures, he is moving right along! He is taking more and more steps on his own and standing by himself. His physical therapist said she thought he might be walking on his own by 14months. He turns 14 months on Tuesday, so we will see!

Please continue to pray for us. We know that is by God's grace and the prayers of our family and friends that we are able to deal with this situation! We love you all!

Happy New Year!

Hello Friends,

Well 2010 has ended and what a year it was! We had many highs and many lows. Lots of laughs and lots of tears. Most importantly, there were a lot of prayers. Cutter is doing good and has made so much progress this year. From where we started January 22, 2010 to where we are now we are so very grateful. God has been wonderful to us and to little Cutter.

Until yesterday Cutter's last known "official" seizure was August 29th. (It is quite possible that he had a small seizure on November 1.) Yesterday, he had an episode that we are fairly certain was another seizure. The way he has them now makes it difficult to say whether or not it was a true seizure. He was drooling, staring and acting disoriented, all of his normal seizure activity signs. However, he did not fall asleep afterward and, in the past, this is something that always followed a seizure. Hopefully, it was a one time incident and he will not continue to have any more breakthrough seizures.

Thank you for your continued support and prayers. Please continue to pray for our little angel. God has been great, and we are fully trusting in Him. We are still hoping that through Cutter and his disorder someone will see the miracles of God and come to know Him and trust in His ways.

Best Wishes for the New Year!

Tis the Season to Count Our Blessings!

Hello Friends,

Just wanted to drop a line to tell you that it has been 15 weeks since Cutter's last known seizure! He is doing GREAT! Praise God! It is so wonderful watching him thrive and progress. He is not walking yet, but is getting closer every day. His physical therapist thinks that he may be walking by fourteen months.

Cutter turned 1 on November 25th. Wow. We can't believe how this year has flown by. So much has happened this year, and we really do have so much to be thankful for.

Please continue to keep us in your prayers. We are struggling with issues with our insurance company, and are hoping that things start to improve in that area. We don't want to just help Cutter, but we hope to be advocates for epilepsy patients everywhere.

Thank you for your support. Have a wonderful Christmas!

Still Doing Great!

Hello Friends,

It has been a while since I have posted, but that is a good thing! Cutter went 9 weeks without having a seizure. Then, this past Monday, it is very possible that he had a small seizure. He was so very tired, and I couldn't be sure, but it looked like he may have. However, there hasn't been any other seizure activity since then, so who knows? He seems to be doing great. He is very active, doing well in physical therapy and growing like a weed!

Thank you for your continued prayers. We would like for you to please pray for one more thing. Cutter's medication is very expensive each month, even with insurance. We have contacted several pharmaceutical companies and emailed LOTS of people about prescription assistance programs. We are praying that something helpful will come from that. If anyone has any suggestions we would be very grateful!

We are so appreciative of all of the support we have been given! We are so blessed!