Merry Christmas!

Merry Christmas, friends!

We have much to be thankful for this holiday season. First, and foremost, we are thankful for the reason that we celebrate Christmas, the birth of Jesus Christ. We are thankful for our salvation and for all of the many blessings God has given us.

On December 2nd we welcomed Maverick Lane to our family. Cutter adores being a big brother and is incredibly sweet to him. Maverick is already three weeks old, and we are all in love with him!

Cutter continues to do very well, though his seizures have started back. They started back on December 3rd, and we attributed this to all of the excitement and new routine since the new baby arrived. However, we feel like we have settled into a good routine, yet Cutter continues to have anywhere from 4-20 seizures a day. They upped his medicine (Dilantin) two weeks ago and lowered his Keppra based on his latest blood work results. We were hoping to see a positive change in all areas because of this but, so far, nothing. The good news is, however, that the seizures have not affected Cutter the way they have in the past. He bounces back very quickly and continues with whatever activity he was doing before he had the seizure. The seizures are very brief (seconds) and very mild.

We will call his doctors next week just to give them a report. We will continue to pray for God's guidance and will to be done when it comes to Cutter and his disorder. Thank you all for your prayers and support. We wish you all a very Merry Christmas!

Doing Great!

Hello Friends!

Cutter still continues to do wonderfully! Tomorrow will make 4 months since Cutter's last known seizure. We are so very thankful! God has truly, truly blessed us. Cutter is going through speech therapy right now and seems to be making very good progress. He is learning new words every day and how to use them, as well as show us what he is wanting when we ask him.

We are excited about the upcoming arrival of Baby Greene #2. We are anxious to see how Cutter does with the little one. We are sure he will do great. He seems to like babies, so we will see! In a little over 4 weeks his little brother will be here!

November is National Epilepsy Awareness Month....so in honor of this we would like for everyone we know to please spread the word about how our God has touched our little one's life. He has worked a miracle right before our eyes, and we are very blessed! And if you have never researched Epilepsy or Focal Cortical Dysplasia, please take a few minutes to do so, and you will understand more about Cutter's disorder.

Thank you for your continued prayers!

Great Report

Hello Friends!

We have not had to post anything in awhile because Cutter has been doing wonderfully! He has continued to be seizure-free. It has been over three months now. We are so thankful! We went to Chapel Hill yesterday for a check up, and the doctor said that he looks great! They did some blood work, but we don't know what his levels said yet. We do not have to go back for another three months!

Cutter is doing wonderfully in the area of motor skills. He is even getting to take a break from physical therapy right now! He starts speech therapy on Friday, and we are very excited about this! His speech therapist seems to be a sweet lady, and we look forward to working with her.

Thank you for all of the prayers and messages. We have wonderful friends and family! We love you guys!

Home Again!

We are home! Yay! The doctor came in this morning, said that she did not see any seizures on the EEG from Sunday to Monday, and that we could go home today! We feel so blessed to be going home already. There was not ONE SINGLE seizure seen on Cutter's EEG scans. Praise the Lord, Praise the Lord, Praise the Lord! They kept Cutter's medications the same, and we will go back in three weeks for a check up. We appreciate all of the messages, phone calls, and especially the prayers! Please keep praying!

Day 2-Chapel Hill

Hello!

We got great news yesterday about Cutter's EEG. The doctor did not see any clear seizure activity while Cutter was hooked up yesterday. Praise God! We are so thankful! The doctor said she was completely shocked, but we all know how God works in wonderful ways! The plan for now is that if Cutter does not have any seizures by tomorrow we get to come home! They are very pleased with what they have seen thus far. So, we are just waiting on tomorrow to hurry and get here. We are rejoicing and thanking the Lord for His many blessings. Thank you for praying!!!!!!

We're Here!

Hello!

We got to Chapel Hill yesterday around 11. When we got here, of course, they weren't ready for us. No one seemed to know that we were even coming, even though we were told a week ago that he was a "direct admission" and Thursday we talked to the neurosurgery team and neurology team on the phone! Anyway, while we were waiting on a room we went to the EEG clinic and got him all wrapped up and ready for his EEG. That was miserable. Just like last time. But after it was over he was fine and happy.

We are in room 6C01 in the Children's Hospital. It's bigger than the other rooms we have been in. This is great because Cutter can't travel very far due to the fact that he is hooked up to a computer. (And that cord isn't too long. We know this because Cutter jerked it out of the wall yesterday when he ran into the hallway going after a little car!)

Cutter is doing great! No seizures that we have seen, but they haven't read the EEG report yet. They are going to do that this morning and let us know what they saw. According to his neurologist, Dr. Greenwood, the plan is that if Cutter is not having any big seizures then after three days we will be coming back home. No surgery for him! They are not even going to inject the dye for the SPECT scan unless he has a big seizure. So, we are just waiting on the doctors to tell us what is going to happen from here on.

They did a blood level check and his Dilantin level was a little high. So they dropped his dosage just a little. We talked to the neurologist about possibly reducing all of his medications, but that is not an option right now. Cutter will have to go two whole years without having ANY seizures before they can reduce or completely remove any medications. :( So we will know with time.

Thank you for your prayers! God is good! We will update soon!

Updateym

Cutter is doing WONDERFUL! He still has not had any seizures (that we have seen) since July 9th. We are very aware of the fact that he could be having them with no outward symptoms, but we are hopeful that he has stopped. The doctors won't say for certain if they think it's his medications or if he is just going through a good spell. The longest Cutter has EVER gone without seizures is 7 weeks, so if he continues to do well, then this will be a record for him!

We leave for Chapel Hill on Friday. They are going to drastically reduce his medications, hook him up to the video EEG and check for seizure activity. Beyond that we are unsure of what will go on. His surgery is scheduled for Sept. 6th, but if he continues to be seizure free then they may not do surgery at all!

First, and foremost, we thank God for His hand in all of this. We know Who takes care of our little boy. Secondly, we thank you for your continued support and prayers. We will continue to update as frequently as we can!

Have a wonderful week!

Chapel Hill Update

Hello!

First off, Cutter is doing soooo good. He has not had any seizures in over a month! Cutter's neurologist at Chapel Hill called a couple of days ago to tell us that they did not need us to come on August 14th for testing. He wants us there on Sept. 2nd to do the testing and surgery at one time. There is one doctor that could not be present in August, and she specifically wanted to be there for all of Cutter's procedures. Chris told the doctor how well Cutter is doing, and he is very pleased. He said that they will reduce Cutter's medicine for his tests. If Cutter does not have any seizures after his medicine is reduced then there is a good possibility that he will not have surgery at this time. It would be wonderful if Cutter would go down to Chapel Hill, have his medicines reduced and continue to be seizure-free! Then, maybe, they would reduce his medications permanently and he will never have another seizure for the rest of his life! We are praying hard, and we know you are, too. God can work a miracle!!! He has already done so much for us and for Cutter.

We will keep you updated! Thank you again for all of the prayers and support!

Day 19!!!

Hello Friends,

Cutter has been 19 days without having any seizures!!! We are so very thankful! We finally talked to Chapel Hill this week and have plans for Cutter's surgery. His procedures will take place at two different times. We will go down on August 14th. They will drastically reduce Cutter's medications, put him on a video EEG for a few days and monitor his seizure activity. They will also inject a special dye into his body while he is having seizure activity. We are only scheduled for a three day stay, but this will depend upon whether or not he has a lot of seizure activity.

On August 28 we will go back down to Chapel Hill to start the surgical procedures. Cutter's first surgery will be on August 30th. His second surgery will be on September 6th.

Please keep us in your prayers! We are so thankful for all of the support! God is in control!

Surgery Is A Go...

Hello Friends,

We heard last week that Cutter will be having surgery. Two of them, actually. They are not sure how extensive the surgeries are going to be until they get started. We don't know when exactly everything will take place, but we know it will all start sometime in August. We should expect to be at the hospital around 3 weeks.

Cutter will first have a special type of MRI, then be injected with a special glucose-type dye during one of his seizures to see exactly what happens where when he has a seizure. Then, they will perform a surgery called "mapping" where they will place electrodes on the surface of the brain. They will close him up and monitor him for 3-7 days. This is like an EEG, only better. This is the test that will tell them exactly where Cutter's seizures are coming from. He will go about his normal routine while being hooked up to the electrodes. (I don't know how he will do with wires coming out of his head! I wouldn't think he would be too keen on this!) Then, they will do a second surgery to remove the electrodes. Depending on the data found this is also when they will (hopefully) remove the spot that is causing all of the problems. They just need to make sure that the spot is not sitting on his motor strip, which is a big concern right now. After the surgery is complete he will stay in the hospital another 3-5 days recovering. He should be back to his normal self in about six weeks after coming home.

This news was big to us. We have prayed for a plan, for direction, and we certainly have been given one. God never fails to provide. Now, we just have to wait and see when this process is going to start and how it will go. Regardless of whether or not they take out the spot we realize that this is what is needed to figure out a solution. If they are unable to remove the spot without damaging other functions they will come up with another solution to control Cutter's seizures.

Cutter is still have seizures almost daily, though they have decreased from an average of 50 a day to 20 a day, which we are very thankful for. There have even been a few days where Cutter has not had any seizures. Through it all he has been a trooper and continues to be a little ham! We love him so much. He is talking more and learning new things every day. There is no telling what he is going to teach the new baby!

Thank you, thank you for all of your prayers. God has provided us with such a wonderful, loving support system. We have the best friends and family members anyone could ever want. You will never know how much you mean to us. Please keep us in your prayers!

Today's Chapel Hill Visit

We went back to Chapel Hill today to meet with the neurosurgeon and the epileptologist. The neurosurgeon was great. He was very informative about the surgery if it turns out that Cutter is a good candidate. Unfortunately, it is not just up to him if Cutter is a candidate or not. There is a whole epilepsy team that consists of the neurosurgeon, the neurologist, two epileptologists, the radiologist and the neurosurgeon's assistant. They are going to meet next week to discuss Cutter's case and decide if surgery is the best way to go.

We met with the epileptologist also, and it didn't go as well. She said that she is not 100% certain that Cutter's seizures are coming from one spot, like we have been told in the past. If this is the case then Cutter might not be able to have surgery. It all depends on what the other epileptologist and the radiologist think about the EEG and MRI. We are crossing our fingers that something just wasn't read right. However, she is only one person on the epilepsy team. Everyone else will have to weigh in on the decision.

It is all in God's hands, and hopefully, a decision will finally be made next Thursday. Please, please keep praying! We greatly appreciate it!

Home...for a bit, anyway!

Hello!

Well, we got home on Sunday evening, and everything is going okay. Cutter continues to have several seizures a day, ranging from 10-25. He is tolerating his new medication well, so that is a plus! We will be going back to Chapel Hill on Thursday for an appt. with Dr. Perry, his neurosurgeon, and Dr. Elkay, his epileptologist. They will hopefully be making a decision about whether or not Cutter is a candidate for surgery. We will keep you posted!

On another note, Cutter had his first haircut today. It was quite traumatic! I will share some pictures with you!

Thank you for your prayers! :)

Day 4

Yesterday evening we learned that Cutter's MRI is still the same as it was when he was little. There are no new spots. We also learned today the information from his EEG shows that Cutter is still having seizures from the right frontal part of his brain, where he has been having them all the time. So, there are no new developments with his seizures. Praise the Lord!

So, the plan now is to add Phenytoin (Dilantin) to Cutter's current medications of Keppra, Zonegran and B6. The Phenytoin seems to be doing a good job right now of controlling Cutter's seizures. Yesterday he had 71. Today he has only had 14. They took the EEG leads off of Cutter's head today, a process that was not NEARLY as long as it was to get them off. Of course, he still screamed and cried, but it didn't last but about fifteen minutes. Now, the glue is stuck to his head, and it will be FOREVER until it comes off! But that is the least of our concerns!

We thought we were going to get to go home this evening but no such luck. No pharmacy around has Cutter's new medication, and our pharmacy at home said that they have not carried it in about ten years! So, we have to wait until the morning and get the prescription filled at the hospital pharmacy.

We will be home tomorrow and cannot wait! We are supposed to come back on Wednesday for an appt. with Cutter's neurosurgeon. He will meet with the epilepsy team here at UNC CH, and they will decide if Cutter is a candidate for surgery.

God has opened this door wide, and everything is working out well! I am reminded of a song: "God is in control. We believe that His children will not be forsaken." God has definitely not forsaken us and is taking very good care of us.

Thank you for your prayers! :) Hopefully we will update tomorrow!

Day 3

Today's events started early. At 8:00 the pediatric sedation team came to see Cutter and get his IV ready for sedation for the MRI and PET CT SCAN. Getting the IV in was HORRIBLE. His veins were not cooperating because he was not very hydrated. He couldn't have anything to drink or eat after midnight. (He did really good with that!) After poking him in the left arm, the right hand, and the right foot (twice) the IV finally took. They gave him an oral medication to make him "happy" before they sedated him. He was so funny during this time. He kept interrupting the sedation team and telling them "Hey!"

Then they took him down to the PET scan area. A PET CT scan is different than a regular CT SCAN because it look's at the brain's functions and not the anatomy. He had to have 45 minutes of quiet time before they sedated him. When they went to sedate him the IV no longer worked because it got kinked so they ended up putting the IV in his left foot. Mommy had to leave the room because of the new baby and the dangers of the radiation from the sedation. Mommy also can't be around Cutter for 24 hours. Boo. She can be in the room but can't touch him. After sedation Cutter had the PET CT SCAN. This lasted about 30 minutes. We then walked to the MRI station and he had an MRI that lasted about 45 minutes. He did really good during both procedures and came out of sedation quickly and easily.

We finally got back to the room somewhere close to 1:30. Cutter had not yet had his morning medications. We had no idea that we would be gone that long. He got his medications along with Fosphenytoin, which is a good anticonvulsant drug to stop seizures. He was given that through his IV. After that we headed down to the EEG room to have the electrodes put on his head for monitoring. Talk about a traumatic experience. It took about two hours, and he screamed and cried the entire time. He tried so hard to be brave. After it was over he politely told the tech "bye, bye!" He was certainly ready to come back upstairs.

When we got back upstairs Cutter fell asleep. He took a good nap and seems to be feeling good. His head is all wrapped in a turban and makes him a little top heavy at times. All day long he has had over sixty seizures. Hopefully, the Fosphenytoin will kick in soon, and the seizures will stop!

We will keep you updated! We feel the prayers! Thank you!

Day 2 Cont.

Whew. It's been a whirlwind of a day. We have seen several doctors, all of whom have had a different opinion. We finally got to talk to the neurosurgeon assistant, and she was very helpful. She was able to answer a lot of our surgery questions, and seems confident that if surgery is the route we choose to go then it will go well. The plan for now is that Cutter will have an MRI tomorrow and after that will be hooked up for an EEG. We don't know if it will be a 24 hour or 48 hour EEG. We are still not sure when we will be going home, but that does not matter right now. Cutter is still having many seizures, and this will continue until after his monitoring and imaging is complete. Then they will do something to try to control his seizures. This is so they can get a good idea of what his seizures look like and know exactly where they are coming from.

He has enjoyed his day playing with the many toys they have available. He has watched movies and listened to songs, and received a couple of presents from some of the hospital staff. He is spoiled rotten!

Thank you for your continued prayers. God is good! We know we are here for a reason. We will update tomorrow.

Chapel Hill...Again

Hello Friends,

Here is an update from last week: Cutter had over 200 seizures from June 5 to June 12. We talked with Dr. H. several times last week and decided to go ahead and try to make an appt. with the neurosurgeon at UNC Chapel Hill. We called on Thursday and were able to get in touch with Dr. Perry's secretary. They were going to go ahead and try to set things up for an EEG and an MRI. We didn't hear back from them before Wednesday. Monday, Tuesday and Wednesday were all very rough days for Cutter. He had lots of seizures, and they started to get harder. Dr. Huffstutter wanted us to get in touch with Chapel Hill and try to get Cutter admitted. After many phone calls and talking to many different people and waiting, waiting, waiting....they called us back and said they had a room ready for Cutter. Yay! So, yesterday we left for Chapel Hill and arrived at 7:00.

Cutter only had one seizure from 7:00 last night until 8:00 this morning. He has had a few today, and the doctors are working on a plan. He will have an MRI and an EEG at some point, but we are still waiting on those plans to be made.

Cutter slept great last night, right between us on a fold-out couch. :) He is thoroughly enjoying all of the many toys here and is currently in a toddler playgroup.

We will post more as we know more. Thank you for your prayers!!!

And Here We Go Again...

Hello,

It has been so long since we last posted because things had been going great for Cutter. He was having the occasional break through seizure, but other than that was doing very well. However, this started to change on Sunday. Cutter had eight seizures on Sunday. We haven't seen seizures like that in a long time. It hurt badly to see him start over again. We were both devastated. Then on Monday Cutter had 22 seizures altogether. The doctor has increased his Keppra again (it was just increased two weeks ago), and we now have another prescription for the Diastat, which is the "emergency" medicine that we can give him if his clusters of seizures prove to be too much for him.

Today has been slightly better. As of right now Cutter has had 17 seizures all day long. He has finally fallen asleep and will hopefully sleep well through the night. We hope to see an improvement tomorrow.

We know God is in control, and He is going to take care of our little boy. We just have to keep our faith and not lose sight of the fact that great things are to come for Cutter!

We thank you for your prayers and are continuing to ask for them! They are greatly needed!

The Lord Has Blessed Us Again

It has been over a month since we last posted, but we have had a lot going on. Throughout the month of April Cutter had a few sporadic seizures. As of right now, it has been three weeks since his last one. Thank the Lord! Despite the seizures Cutter is doing wonderfully. His vocabulary is picking up, and he is doing great in physical therapy.

We have been talking to Dr. Huffstutter about our options right now. They have upped Cutter on both Zonegran and Keppra. His Keppra causes him to be moody sometimes, but we know that this is something to be expected. We just have to learn how to deal with it the best we can. Dr. Huffstutter wants us to continue to pray about whether or not Cutter needs to have the brain surgery. We don't have to make a major decision right now, but we do need to be thinking seriously about it. Dr. H, as well as our doctors from Chapel Hill, have been discussing the pros and cons of having surgery, and not having surgery. It's a very hard decision to make, and will not be made without a lot of prayer. We are confident that God will lead us down the right path, and we will accept what He has to offer. It's all about His will and His timing.

Our other big news right now is that Cutter is going to be a big brother! God has blessed us once again with a child, and we are so excited!

Please continue to keep us in your thoughts and prayers! We could not do this without the love, support and prayers from our friends and family!

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!