Cutter Update! :)

Just a little Cutter update! Things have been busy around the Greene household! Cutter is in preschool five days a week all day long. He is doing great. His teachers are very happy with how much he has progressed since June! He loves preschool! He is starting to write a couple of letters and is counting and sorting and matching.....all things that he has not been able to do before! We are amazed at the conversations that we are able to have with Cutter now. He makes jokes and can answer questions. He truly is growing up before our eyes!!! Every week he does something new. He loves his new little brother, Ryder and loves to play pretend with Maverick. He recently started horseback riding again with the students at his school. He absolutely loves horseback riding and the fun activities they do there. We are so thankful that he has this opportunity! Cutter has been seizure free for one year, six months, 1 week and 2 days! Praise the Lord!!! We are continually in awe of all He has done for us and for Cutter. Again, we thank you for your prayers and support!!!

Cutter had a wonderful summer! We were able to get most of his therapy building completed. He loves it! Maverick does, too!

He started preschool last Thursday and had a wonderful first day. We are so excited about what all he will learn this year. He will be going every day all day. We know he will make incredible progress!

Cutter became a big brother again last Tuesday to a sweet little boy named Ryder. He is in love with him and is such a big help!

Lastly, today was Cutter's last dose of Dilantin!!!! The weaning process is complete! This is a huge Milestone for Cutter! He is still seizure free, and we are so thankful for this blessing! Thank you all for your continued prayers and support!

It's Here!!! One Year!!!

Praising God today for His many blessings! 365 days of seizure freedom for my little bug. He has no idea what today is or what it means. He has no idea he had two major brain surgeries. And I am totally okay with that. When he is old enough to understand we will make sure he knows how important this was in his life and who we all give credit to. I absolutely can't wait to call his doctors today! They are going to be thrilled! Through the past four years I have not always been able to stay on the mountain and rejoice, but if weren't for the times in the valley I couldn't rejoice as loudly as I can today! Again I thank you for your support. If you see me crying today they are happy tears! (And I'm four months pregnant so my emotions are all over the places!) Have a great Friday!

March 20, 2013 (a look back)

Whew. When I think about where I was and what I was doing this time last year I am overwhelmed with feelings of blessing, grace and relief. This time last year Cutter was in recovery from his 2nd surgery. He had 8 seizures before going into surgery, and the surgeons couldn't tell us anything definite about his situation. They hoped his seizures would be reduced. They hoped he would be the same little boy that went into surgery that morning. They hoped that the mapping showed them all they needed to know. But they couldn't give us any definite answers. Chris and I were so sad when Cutter went back to the operating room. Our hearts were broken because it was hard to see that little guy go somewhere that we couldn't and let people do things for them that we could not. But when we walked out we were filled with grace and peace and were very calm. That strength can only be given by God! I even went downstairs to eat breakfast with my mom and sister and didn't cry the whole time. As the hours ticked by we were anxious to put our arms around him and hear the doctor say that he was all done. When he woke up from surgery he wanted "Pepi" (Pepsi) and to watch "Lawman" (Gunsmoke). That's when we knew that he was just the same as he was before. He hadn't been in recovery too long when he started singing Jesus Loves Me. The best sound we have ever heard. Can't wait to celebrate tomorrow. March 21, 2013 was the first day of Cutter's seizure-free life. Thank you, Lord, for your many blessings, and thank you, friends, for being there for me! Love you all!

Almost There!!!

Today is the 1 year anniversary of Cutter's first brain surgery. Wow. We can't believe that it has already been a year. There has been lots of research, just in the past year, about doing brain mapping (or gridding) on the brain before epilepsy surgery. Some doctors are really for it and others are not. The decision to do the gridding on Cutter's brain before the resection was the best decision that could have been made. It really helped the doctors see exactly what they were dealing with. They were able to make a plan before the second surgery. We are so thankful for the doctors that God put in Cutter's path. We really couldn't have had better care for him. Thank you for being on this journey with us. We are very excited about next Friday, the 21st. ONE YEAR OF SEIZURE FREEDOM. Praise God from Whom ALL blessings flow!

Chapel Hill Update

Cutter's visit went very well. Started out rough with him crying and not wanting to be there. He weighs 36 pounds now! Dr. Elkay wants to wean him off Dilantin. At first she said it would take 16 months. Then 8 months. We're thinking with the way it is written it will only take 8 months. Is not touching any other medicines. No MRI or EEG right now. She is not ready to put him to sleep again yet. She called him "delicate" and said when we take him for his vaccinations that he does not need to get More than one in one day. We need to be cautious if he were to get sick and run a fever. This causes his threshold to be lowered. Keep Him healthy as we can to reduce chances of having a seizure. Dr. Elkay is leaving Chapel Hill in June. Said it was confidential so we don't know why. We will see her one more time before then, in April. We were upset about this. We definitely don't want to change doctors, especially in the middle of medication changes. One of the current doctors will take her patients. So, that is all for now! On our way home! (With three new ninja turtle shirts, a plastic horse and two hot wheels cars....they spoiled both boys at the hospital!) Thank you for the prayers!!!

CIDD Results

We finally got the results back from the Neuropsychological Developmental testing Cutter had done in October. He did very well and has grown a lot! The tests completed were the same tests that were completed 17 months prior in May of 2012. They measure everything in "months" so if this seems confusing then just think about it in terms of his age in months! Gross Motor Skills: He went from performing at a 20 month age to performing at a 27 month level. He gained 7 months! Fine Motor Skills: He went from performing at an 18th month old level to performing at a 28 month old level. A 10 month gain! Expressive Language: He went from a 23 month to 29 month old level. 6 month gain! Receptive Language: He went from a 23 month level to a 24 month level. Only a 1 month gain, but we were not surprised by this. This is a HUGE part of his sensory issues. Visual Perception: He made a huge gain from 16 months to 31 months! A 15 month gain! We are very proud of him! He has a long way to go, but is gaining ground!!! We are excited!

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!