8 Months of Seizure Freedom!

Today is a very important day (just like the 21st of every month)! Today marks 8 months of seizure freedom for sweet Cutter! We are praising God today, as we have every day that Cutter has been seizure free. We know that we were blessed with wonderful doctors, but we know who has healed our baby, and we praise Him for it! Cutter is doing so well and making great strides every day. OT, PT and Speech are going great, and we can't wait to see what he will learn next. Thank you all for your prayers, support and encouragement. Love sharing our happiness and blessings with you!

Great News

Yesterday went very well. We do not have any statistics or numbers yet, but the Dr. was so happy about the progress that Cutter has made. He could not believe how good he looked, how you couldn't even tell (physically) that he had brain surgery, and how he could do small tasks that he was not able to do last year, such as sitting in a chair and attending to a task for more than a few seconds. We feel good that his report will show lots of progress! Thank you for all of the prayers and support!

Testing, Testing...

Here in Chapel Hill for some neuro-psych testing. We were here two years ago and it was totally not fun. Whew. Thankfully, this time he is older and happier and seizure free!!! (7 months and 2 days!) and this time around he has NO BOTTLE!!! Surely to goodness it will be better! Looking forward to seeing how he has improved! Missing the littlest Greene bean, though. Thanks Mom for keeping him. (You must kiss him 37 times before he falls asleep! ) We will update tomorrow! Thank you for the prayers!!!

Many Blessings!

Wow! What a blessed day this has been. I have thanked God so many times today for the small things that have happened! First, Cutter counted his toys out this morning in the car. He counted to four with perfect 1:1 correspondence! (My fellow K teachers know the importance of this...Lol!) Also, while in the car Cutter said, "I am going to be a turtle for Halloween!" A whole sentence where he recalled a detail we had not just discussed!!! Every word was so clear! Then, Maverick asked me a question! He asked, "Is brother going, too?" I was shocked and excited at My little man's new vocabulary!! At school, Cutter's assistant, Megan Ziegler has been working with him on pedaling a tricycle. She called to the library and told me to come watch. He was doing it! Pedaling all by himself!!! Oh, this mama cried and cried! He has come so far. Lastly, Cutter started his horseback riding lessons for physical therapy today. I will post pics and videos next. He loved it! He will go for the next five Fridays! So thankful for his therapists and the students from the Early College for helping Cutter today. The therapy will help with his posture, balance, listening, attention, ability to follow directions, coordination, etc. We are super excited! It's the small stuff that makes me smile (and cry today)! I am so proud of my boys! I am blessed to be their mother. There are no words to describe it. Thank God for these blessings!!!

5 months!

Today marks 5 months!!! 5 wonderful months of seizure freedom for Cutter! We give God all the glory! The longest Cutter has ever been without seizures is 5 months. That was back in 2011. We have reached that mark again! Cutter had his evaluation with Play Again Therapy today. He did very well. We should get the results soon. We go to Chapel Hill Monday for Cutter's first post-op EEG. It will be an ambulatory EEG, meaning he will get the leads put on and we will leave the hospital. He will have the leads taken off on Tuesday. Then we will get the results. Please keep us in your prayers!

Continued Blessings!

Today marks four months and three days since Cutter's last seizure! We had an appt. with Dr. Elkay today. She was very pleased to see him and how well he is doing. She told us that hopefully in September she can start weaning him off the Dilantin since that will be six months of seizure freedom! She is glad that all of his levels are low. It means his body does not need that much medicine anymore. She does not plan to increase anything. We were thankful for that! Cutter did so good today. He was so brave! We will have an EEG in August a neuro-psych test in August and possibly an MRI in September. Thank you for all of your continued prayers and support! Love you all!

Family Vacation!

We took our first family vacation to Dollywood this weekend! The boys had a blast. Last year we were discussing how we weren't sure if we were going to get to go on vacation or not this year because we weren't sure what the future held. We didn't know how Cutter would do with surgery or if his seizures would be worse by then. However, Cutter is still doing very well post-surgery, and we have not seen any signs of seizures. Praise the Lord! He is doing very well with his OT, and we are seeing improvement in his development every day. We were able to go to Dollywood twice and Splash Country once. The boys were a little hesitant about the water park and had to get warmed up to it, but they really enjoyed it overall. We had wonderful weather and even got to see some great fireworks! Every small thing that Cutter learns how to do impresses us so much. This summer he has learned how to put on his socks. This may not seem like much to anyone else, but to us, we were so excited! We have been working on self help skills for quite some time now. He is learning!!! We are still working on potty training, but he has started talking about it a lot more so we are hopeful that it will just "click" one day! We are still dealing with some behavior issues and some "rages." We are not sure if this is medicine related or due to the fact that the part that controls his emotions is no longer present. We were told to expect this, so we are not terribly surprised. However, it is very upsetting when he has a meltdown, and we are unsure of how to help him. When he gets in those moods he can't talk to you and tell you what is wrong. He can't answer your questions yet, so he just screams and cries. Luckily, these fits are few and far between. He definitely has more good days than bad ones. I am thoroughly enjoying being home with the boys this summer. I have gotten to spend so much time with them, and I think they have grown quite attached to my hip! We have done some crafts, read lots of stories, taken some trips and had some much needed play dates (and naps!). They play so well together and love each other so much. It is sweet to watch them learn things together and teach each other, as well. I am convinced that having Maverick was the best thing we could have ever done for Cutter. I pray that they are always close and always look out for one another. I have seen through Cutter's visits to the Play Again Therapy clinic that Cutter needs his own sensory gym at home! I would love to build one of these for him (and for Maverick). Maybe sometime in the future.... I would love to find out if there are some kind of grants for things like that?!? Can't wait to see what the rest of the summer holds! Thank you all for your support!

3 months!

Feeling so thankful and blessed today. Today marks three months since we have seen Cutter have a seizure! Praise The Lord! Cutter is doing so well. He is doing occupational therapy twice a week over the summer, and they are pleased with his progress. Thank you all for your support! It has meant a lot! He has come a long way! Love you all!

Two Months!!!

Thank you, Lord, for this wonderful day! Two months today of seizure freedom! Thank you all for your support!

No More Surgeons!!!

Hello Friends! Cutter had an appointment yesterday with his pediatric neurosurgeon. He said that everything looks great! He also said that Cutter does not need to come back and see him, and that he will follow him through Dr. Elkay!!! This was awesome news! He also said that there are no restrictions for Cutter, and that he can do any activity he pleases. We were so thankful for this wonderful, wonderful news! Thank you for your continued prayers and support!

Full of Life and Energy!

Cutter Update ! Things are still going so well! He did much better with going to school yesterday. He asks everyday to go now. I hear that he is pretty wild in class, but I can handle that. I can remember a time when we wondered if Cutter would ever be wild and full of energy. There was a time in his little life when he laid around and slept a lot. There was a time when we wondered what he would be like as a preschool child. And Praise God we don't have to wonder anymore! He is acting like every three year old boy I know! So, yes, I will discipline when needed, and of course, he needs to mind his teachers NO MATTER what, but I have to admit that I am enjoying this little boy who is full of life and energy! (And i am incredibly thankful for patient, understanding, loving teachers!) :)

One Month of Seizure Freedom!

Hello Friends! Wow! We can't believe how this month has flown by. Yesterday marked one month since Cutter's second surgery. Since Cutter had eight seizures that day before the surgery began today is the actual one month anniversary of seizure freedom! We are soooo thankful and are still counting our blessings. We have so much to thank God for, and we are continuously praising His name. Cutter's hair is growing back and his scar is not bad at all. He is walking and talking and playing and developing just as he should. He has therapy five times a week (speech, OT, and PT). He is still on four medications, but that is okay! We can't wait until he is off Keppra because we really feel like that is what causes his frustration and emotional issues. Cutter will go back to preschool tomorrow. After last Monday (when he was not thrilled about going back and had a meltdown) we are nervous about sending him back. He just gets overstimulated so easily now. Hopefully, he will sleep well tonight and adjust well tomorrow. I am having the hardest time with going back to work. I have thoroughly enjoyed being home with my boys. We have learned and played and had a really good time. I wish I could stay home full time, but that is just not a possibility right now. I will let you know how tomorrow goes! Please continue to keep us in your prayers!

Sunny Days!

Hello Friends! We sure are enjoying this spring weather! Cutter is doing amazingly well. He is getting therapy almost every day during the week and is coming right along. He has still not had any seizures since the second surgery!!! The only medication that has been changed is Dilantin. Hopefully, we will see a big difference in his balance and walking now that it has been lowered. Cutter had speech therapy at school yesterday. It did not start out well at all. He had to get up early, which made him grumpy. Then I took Maverick to Nana and Papaw's, and that upset him. Then, when we got to school he was extremely overwhelmed and overstimulated. I am sure once he gets back in his normal routine he will do better! We are still dealing with some emotional outbursts and some frustration, but we can work through that! We are learning that too many choices make him panic, so we are learning how to not to do. It sounds easier than what it actually is! As parents we like to give, give, give, sometimes a little too much. We are having to learn to be simple! Thank you so much for your prayers! We will keep you updated!

Blessings Continued!

Hello Friends, Cutter continues to do very well! This week he has already had physical therapy twice and occupational therapy once. Not to mention the therapy he had on Monday in the hospital before we left. He is tired today, but for good reason. He is walking more on his own now, and is talking up a storm. Overall, he seems very happy. We have not seen any "s's." We are so thankful!!! God has provided us with more blessings than we can keep up with! He never fails! Thank you all for the many prayers and kind words. Our support system is wonderful, and we are very grateful to you all. Cutter has done much better than we could have ever anticipated. It is great seeing him and Maverick play together again. They are so cute together, and we are so thankful for them both. Such wonderful little boys, and they bring so much joy to our lives. We will update as often as possible. With both boys back with us they sure do keep things hopping around here! Thank you for your support!!!

Monday Morning

This morning has been very busy. We have talked to therapists and doctors and nurses. We may get to go home today, but we are not sure yet. It may be tomorrow morning before everything can get coordinated. We saw the physical therapist today. We will see the occupational therapist and speech therapist today. After that we should have a plan for home therapy! Cutter is doing great. He got to go to the play room this morning, which is always fun! Thank you for your prayers!

Weekend Update

Boy, we sure do wish we were at church today. We are missing it badly! We can't wait to get back. We all had a good night last night. We got more rest than we have been getting. So we are thankful for that. Cutter was so sweet last night. He was talking more and being really funny. He said that he wants to ride the tractor with Daddy. I said, "what do you want to do with Mommy?" He said, "I bite you Mommy!" Thanks, buddy. Mommy appreciates that. Lol. For those of you that do not know, "I bite you" is one of his favorite expressions. So, it was great to hear him say that, actually! Cutter started physical therapy yesterday. He did very well! He is weak, of course, but that is to be expected after a surgery like his and as long as he has been in bed. He was able to sit up some without support and walk a little around the floor. He got up two more times after therapy was over and walked around, too. By the end of the night he was able to walk one lap! It wore him out pretty quickly, but it will come! We just have to work hard! We may or may not have physical therapy today. If not, we will definitely have it tomorrow. In the meantime, if I can get him out of bed, we are going to work, work, work! Gotta strengthen those muscles! For now, him and Pappy are sleeping. Guess I should just let them. :) We hope you all have a blessed day!

Friday

Hello friends, We had a good night last night. Everyone got some sleep! He has been complaining a little bit about hurting, but he will get medicine for that. They are taking his drain out right now. They had to put him to sleep again for this procedure. This makes five times in in the last nine days. Bless his heart. Today should be a good day, though. We are going to give him a bath, bathe him (bedside) and let him go to the play area. He will really enjoy that! Praise God for another blessed day!

The Day After

Hello Friends, Cutter has had a pretty good day. He has not talked as much today and has been very tired. However, he has eaten solid food and was moved to a regular room. The drain is supposed to come out tomorrow. He will be sedated beforehand. Praying for a restful night! Thank you for your continued prayers!

Surgery update

Praise God!!! He did wonderful. We get to see him in about an hour. Dr. said it was very routine, very straightforward, no surprises. Update after we see him!

Tuesday update

We have decided to go through with the surgery. It will be tomorrow morning at 8:30. We know God will take care of him during surgery and afterwards. We have no guarantees about the outcomes, but we know that God will provide what Cutter needs. The good news is that the surgery will not be as extensive as we previously thought. We talked to the surgeon this morning, and he does not want to mess with anything other thank the frontal lobe. This being said, there may be another region that is showing abnormal activity, but there is no solid proof. That area is in a very risky spot, so the surgeon will not go there. He feels that the area he is going to focus on is going to give Cutter the best chance of seizure reduction or even seizure freedom. The surgery will last about four hours. Please keep us in your prayers! Love you all!

Monday Update

Cutter update: Well, we didn't know we were going to get an update so soon. Dr. Elkay came and talked to us after her meeting with dr. Hadar. They have decided that they would like to do a frontal lobectomy on Cutter. We were a little shocked by this. They want to take out more than originally thought because of how the Dysplasia is spread out. This area of the brain controls your emotions, personality, behavior, cognitive thinking skills, inhibitions, etc. The good news is that because of Cutter's age the left frontal lobe will eventually take over the parts that removed on the opposite side. There isn't guarantee that Cutter will be seizure free. However, there is a good chance of seizure reduction. This is a very big decision. One we need to pray for guidance about, we know that all of you have been praying, and we are extremely appreciative. God has a plan and a purpose, and He will get the glory! The prayers of the church were answered in a matter of hours just the other day. We once more are asking the church to call upon our God on Cutters behalf. So here are some words of encouragement from us to you. We are promised that if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my father which is in heaven. Also, Joshua spoke to The Lord and said, Sun, stand thou still upon Gibeon; and thou, moon, in the valley of Ajalon. And the Sun stood still. This is the same God that we serve today!

Sunday Update

Cutter has been able to rest some today, thank goodness! They came in and changed his head dressing today. We saw his head and incision for the first time. They said his incision looks good. No signs of infection. The whole process was quite an ordeal, but our little man was very brave! Tomorrow they will run some more tests and figure out a plan for Wednesday's surgery. Praying for a good night!

Friday update

Our God is so much bigger than this! We praise Him yet again as we received good news! Dr. Elkay came by and said that she is much happier today than she was yesterday! I was mistaken about the test performed today. I thought it would show the functions of the areas involved but instead it shows where the areas are located. Turns out the spots are very close together, so they can potentially be taken out without harm. Also, the spots are NOWHERE near the motor strip!!! Still not sure if the spots will be able to be removed completely. They need to do more monitoring and some more tests on Monday. Also, Dr. Elkay will need to confer with Dr. Hadar about the tissue to be removed before they can come to a full conclusion. Thank you, thank you for the prayers! They are working! Things are good. Cutter has not been awake a whole lot today because of the anesthesia from earlier. He has, however, eaten a little bit of baby food (only bananas) and drank a little bit of Pepsi. Chris got to hold him for the first time since surgery. He is not extremely mobile because of all his wires. Chris held him while I changed his sheets. They weren't really dirty or anything. We just thought it would make him feel better. They have brought us some bubbles for him to blow to work on his breathing. Hopefully,he will feel like doing that soon! Looks like another night in the PICU for us. No rooms available yet. Maybe tomorrow! Thank you for your support! I will update again soon!

Cutter Update...March 14 Evening

Cutter Update: Cutter is still in the PICU. He will be there until at least tomorrow. There are no rooms available in the EMU right now, and they are going to have to run some tests anyway on Cutter tomorrow. So...one more night in the PICU for us! Hopefully, it will be a much better night. Dr. Elkay did come by and see us today. (She is Cutter's neurologist.) She told us that the seizures are not all coming from one spot like we had been hoping for. For the past three years this has always been the case, but now that they have done more in-depth monitoring we find out that this is not exactly the case. However, they do all seem to be starting right there where the cortical dysplasia is located. What this means for now is that they are unsure of the next step. They do not know if they are going to be able to take out all of the tissue, or if they are going to have to take more than expected. At this point, they do not know how deep the cortical dysplasia runs or how far back towards his motor strip it extends. They are going to do some extensive testing tomorrow to see what functions are being affected by those areas. Please, please pray that we get answers tomorrow, and that there is something they can do to fix this. We know the power of prayer, and God has certainly taken care of our little boy. We know that He can fix this! We just ask for everyone to please continue praying, especially for the doctors and the decisions that need to be made. We love you all!

Surgery update

Hello friends! Surgery was a success! The neurosurgeon felt good about how the surgery went. Now, they will monitor him for a week. The second surgery is scheduled for next Wednesday. Below is an update that I placed on his Facebook page For the Love of Cutter... Good Morning! Whew, what a night. First of all, around 9 his right eye turned black and swelled shut. The doctor told us to expect this. So glad that Dr. Chris Rowland told us this first to prepare us! Secondly, only one parent could stay in the PICU, so Chris left to go to the waiting room to try and rest. He graciously let me stay with Cutter. Very thankful. Then, around ten thirty they gave him an in and out catheter to try to get him to wet is diaper. He had not had one since before two. That was miserable, and it didn't work! Around midnight they decided to give him a real catheter. Boy, I prayed hard. I saw how miserable it was the first time for him. Then right before they came back he peed! Praise The Lord! He was really nauseous last night and got sick several times. We had to change his clothes three times. He cried a lot and was up every hour. Since Cutter cannot tell us he is in pain they gave him some morphine to help him get comfortable. It did not help that much. We finally got some sleep around four. Then the doctors started coming by around 8. He asked for food, and the pediatrician said we could feed him. He ate two bites of a biscuit then fell asleep. He has had many seizures, so this is good news! Now, we wait. Hope to get to the children's floor sometime today. Thank you for the prayers! We will update again soon!

Cutter Update

Hello friends, Yesterday was a doozie. That is for sure! It was a long day. But we made it through! Today has went well. Cutter did not do terrible with the intra-nasal sedation. At least it was not an i.v. He will get an I.V. after he is completely under anesthesia. We suspect that surgery started around 9:30. He had a CT scan before surgery and will have one afterwards. I am guessing we will get to see him around 3:00. Chris thinks 4:00. So, we will see! Thanks for all of the prayers! We feel them! Praise God for the calmness we feel!

Here We Go (again)!

Hello Friends! We are back in Chapel Hill preparing for surgery yet again! Surgery is scheduled for Wednesday at 8:30 a.m. Tomorrow Cutter will have a CT scan without sedation (wish us luck and pray he does well), an appt. with the neurosurgeon, and pre-op. It will be a very busy day! He is supposed to be sleepy for the scan so we are going to get up bright and early! Whoo-Hoo! Mommy is not a morning person. We are feeling pretty optimistic and good right now. We certainly feel God's presence and the prayers of our loved ones! Please keep them coming. We can't help but wonder if it will really happen this time. For some reason God has just not seen fit for it to happen before now. It has been hard being patient, but we know it will be worth it! We will update as much as possible and as quickly as possible! We thank you again for all of the support!

Cutter News

Hello Friends, There is so much I need to blog about! I hate that I have not had a lot of time to keep the blog updated like I would have liked. First of all, on January 11th West Marion Elementary School held a benefit for Cutter and his medical expenses. We could not believe the turnout that we had. The benefit raised over $10,000! There are no words to describe that gratitude that we feel. What a blessing! God definitely has provided. The benefit was wonderful, and seeing our community come together for our son was a feeling like no other. The love we felt that night was overpowering. We are so blessed to have so much support from our friends, family and our entire community. You wouldn't believe the way West Marion swooped in and made the benefit the success that it was. All of those people working so hard for my family's benefit was humbling. We will forever be in debt to all of those that have raised money for Cutter. When we started this journey with this disorder we had no idea how expensive the medical bills and medications would be. Even with insurance we pay A LOT of out of pocket expenses. These benefits have helped tremendously, and we will never be able to thank everyone enough. We just hope that in the future we are able to provide someone with the same love, compassion, and financial help that everyone has provided us with. Cutter is able to go back to preschool for now (until the surgery date gets closer). He is going twice a week for a few hours each time. This has been wonderful for him. The teachers are all so helpful, caring and understanding. They handle him very well, even through his fits of excitement and reluctance. The patience that they with him makes sending him to school very easy. He got his first IEP progress report, and it looks like he is doing great! Right now he is getting speech and physical therapy services at school once a week each. On Thursdays we have an occupational therapist that comes to the home to do OT with him. She is seeing good progress, and she does a great job on giving us ideas about how to work with him at home. Cutter will be in this same preschool class until he starts kindergarten, so three years total. I think this is exactly what he needs to help with the delays that his disorder has caused. As far as his seizures go he is having between 2-5 a day. There have been a few days where he did not have any. The episodes are still brief, but they do make him a little tired still. His medications are all the same. They do not want to change his meds until after the surgery. His two surgeries are scheduled for March 13 and March 20. We have to go down on March 12 for his Pre-op and CT scan. They are going to try to do the CT scan without sedation. We are nervous about this. Cutter was only 3 months old the last time they did a scan without sedation. We are unsure of how he will handle this process. Hopefully, it will be quick and painless. I am sure there will be lots of Hershey kisses and Toy Story goodies given afterwards! Hey, we will give him whatever he wants. Poor little guy, he has been through enough! We continue to see great things happening developmentally. He absolutely loves his brother, and Maverick copies everything Cutter does! Maverick has been really good for Cutter, and vice versa. I am so thankful that they have each other. They love to sing and dance and pretend. Cutter has a wonderful imagination, and he is teaching Maverick how to "make believe" now, too. Though he still struggles with communicating all of his needs, and potty training is not going as we had hoped, we feel he is making good gains. We are learning that patience is the key, and we don't always have as much as we should! However, with lots of prayer, and lots of support and encouragement, we will get through this! God will keep us safe through this storm! We appreciate all of the prayers! We will update again soon!

Surgery Update

Hello Friends, Most of you already know, but for those that do not, Cutter was not able to have surgery yesterday. Maverick came down with the flu on Friday. Cutter ran a slight fever on Saturday, then started again Tuesday morning at 3:30. By the time it was time to go to the hospital his fever had broken, but he did still have a cough and some congestion. Because of this it was decided that Cutter could not have anesthesia. There were too many risks involved for the surgery to happen that day. They told us that he could have surgery in 4-6 weeks. We were on an emotional roller coaster yesterday, that is for sure! We were filled with confusion, relief, sadness, and frustration. We know that it is all in God's timing and that we must be patient. This definitely gives us more time to prepare and more time to pray for little Cutter and the doctors involved. West Marion Elementary School is doing a benefit dinner for our family on Friday night, and now we get to attend! We were sad that we were going to have to miss it, but now, we won't! We are so thankful for all of the hard work that our friends have done to get ready for the benefit. And the support from our community has been AMAZING. We are feeling so blessed right now! Chapel Hill called today, and Cutter's surgery has been rescheduled. He will have pre-op on March 12, his first surgery on March 13, and his second surgery on March 20. It is easier said than done to not question God's plans, but we are trying hard. We know God loves us, and we know He loves Cutter more than we do. He has his best interests at heart, even though it is SOOOO hard for us to understand. For some reason, it was just not time this time around. There is a bigger picture, and we hope that in time, God will reveal it to us! Thank you for your continued prayers and support! We will keep you updated!

Almost Here...

Hello Friends, Well, the day is drawing closer. Surgery Day will be here before we know it. It seems so surreal. It seems like it is finally going to happen this time. We have been trying so hard to keep Cutter from getting sick before Surgery Day. We haven't even let him attend preschool in a few weeks, and he has asked to go! However, no matter how hard we tried, sickness has arrived. Cutter is not sick, yet, but Maverick has the flu! We are all on Tamiflu as a precaution. We hope and pray that Cutter does not catch anything. We need him to stay healthy and germ free until time for surgery! It is hard to describe what we are feeling right now about Cutter's surgery. We are hoping that this is the solution, and that this is IT. We are scared about the process because surgery is a scary thing. We are sad that he even has to go through this. It just breaks our hearts. However, we KNOW that this is what needs to happen. We KNOW that God is going to take care of him. We KNOW that God will take care of us, too. He will handle our doubts and our fears. He will take them away. In the past we have felt God's grace and mercy. Both are very powerful feelings. We are expecting no less in this situation. We know He will provide. There is so much going on right now as far as support goes. People have donated days to Ashley so that she can take off work and be home with Cutter while he recovers. People have donated money to help with travel and medical expenses. People have given benefits in the past to help with medical expenses, as well. West Marion is hosting a benefit spaghetti dinner on Cutter's behalf next Friday, January 11th. They are working so hard to get this accomplished and make it a success. We can't begin to thank you enough for all EVERYONE has done for us. The support that we have received over the past 3 years has been phenomenal. There are no words to describe just how thankful we are. We will continue to update the blog as things progress in Chapel Hill. Right now, the next steps are to get Maverick better, get everything packed and ready to go, and pray about the days ahead. We love you all!