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!