Cutter Update ~ August

Hello, Friends! Just thought we would give you an update about little Cutter. He started having seizures again on July 6th. Since then, we have only had a few days where he has not had any seizures at all. They range from 1-10 a day. They are still very brief, but we just can't get them under control. Once again, they seem to be happening right when he wakes up. On August 17th we took him to Mission Children's Clinic near the hospital to have an IV of fosphenytoin. This is similar to the Dilantin that he takes in liquid form. In the past when Cutter has been in the hospital with seizures this is the only medicine that would stop them completely. So, we were hoping to have good luck with the IV. He did not have anymore seizures on the day that he had the IV. However, he started back the next day with the seizures. :( We do not go back to Chapel Hill until October. We are really hoping that they can schedule him sometime before then. Sometimes the seizures make him so tired and agitated. It's awful. We are so glad that they are not long and not very frequent. They have increased his Keppra tremendously, but so far, that has not helped. Please keep us in your prayers! We really appreciate them!

July Update

Hello Friends, Well to start with, in the last post we told you that Cutter's April MRI showed nothing, no trace of CD. However, his June MRI did. Dr. Elkay told us that she was going to talk to a reliable radiologist about all of his scans and see what he thought. She called us a few days later and told us that he saw the CD on every scan that Cutter has had. :( We were not surprised, but of course we were a little disappointed. We also got Cutter's report about his developmental status. Cutter is still developmentally delayed. He scored 10 months behind in gross motor skills, 12 months behind in fine mother skills, 7 months behind in receptive and expressive language, and 14 months behind in visual perception. So, what does this mean? We still have lots of work to do! We were very upset when we read the report. We thought that he was a little further along than what they had determined. For those of you that may not know: Gross motor skills are your large motion skills like running, climbing, walking, etc. Fine motor skills are the small motion skills like grasping, holding small objects, etc. Receptive language is what you understand when someone talks to you. Expressive language is what and how you speak. Visual perception deals with your ability to sort, put together puzzles, spatial reasoning, cognitive abilities, etc. We also had an appt. with the CDSA in Morganton for Cutter's yearly evaluation that they complete. (This is who we go through to get speech therapy for Cutter.) They agreed with what Chapel Hill said in their report. Cutter will continue to receive speech therapy, and they have suggested that Cutter start back with physical therapy and start occupational therapy, as well. Now, the CDSA will only serve Cutter until he is 3. After that, the school system is responsible for offering these services. We had our first meeting to discuss what will happen after Cutter turns 3 in November. It was determined that Cutter will get to attend West Marion for his therapy! We were so excited to hear this. I love the therapists and preschool teacher that we have at West Marion. They will be a major help with Cutter's development. This was an answer to prayers, that is for sure! Cutter will not go to the preschool every day. He is not ready for that. He will attend only a few hours a week. We will meet again in October to discuss all of those plans. As far as seizures go, Cutter did start back on July 6. He is only a few a day and some days none at all. Yesterday, he had 12. :( It was VERY disheartening to see him start this all over again. Once again, it had been almost five months! We have no idea why he has started having them again, unless it is because he is going through a growth spurt. He has an appt. tomorrow to get some blood drawn to see what his medication levels are. Please pray that we get some answers from that! To end on a happy note, let me just say this child is amazing. He is so sweet and loving. He is THE best big brother in the world. I have never seen a child so young love someone so much. And the feeling in mutual. Maverick thinks Cutter is king of the world! He is also talking so much more now. He is learning Bible verses by repeating after us. He sings several parts of Happy Birthday and Jesus Loves Me on his own (at random times)! And potty training is going well! Thank you for all of your thoughts and prayers! Please continue to remember us as we yet again figure out what is going on with his epilepsy!

Cutter Update (Spring)

Hello Friends! Just a quick Cutter Bug update. Cutter is doing wonderful! Still no seizures since Feb. 21!!! We are so very thankful! First, Cutter had a neuro-psych test on May 31st in Chapel Hill. They wanted to see where he is developmentally. The first part of the test went pretty rough. Cutter acted like every other typical two year old. A mind of his own! He did a little of what they wanted him to do, but not everything. We decided to take a break, grab lunch and try again later. When we came back from lunch he did MUCH better, and we were able to see him do some of the tests that they really wanted him to do. We have not gotten a report yet about their findings. We are anxious to hear what they think! Cutter did have to have a repeat MRI done on June 5th. However, they did not charge us for this MRI since they made the mistake of doing the wrong kind of MRI in April. We were very glad to hear this. We have not gotten the results from the June 5th MRI yet, but we are waiting on Dr. Huffstutter to read the scans, as well. Dr. Elkay said that the MRI in April did not show ANYTHING on Cutter's brain. They did not see that he had Cortical Dysplasia at all. So, before we get our hopes up we want to hear what Dr. Huffstutter says about the scans. This has happened to us before at Chapel Hill. When we first went down there two years ago they did not see anything on Cutter's MRI. They had to repeat the MRI and have different people look at them before they came to a consensus that they did see evidence of Cortical Dysplasia. It would be wonderful if Cutter no longer had FCD. Then this would probably mean that Cutter would not have anymore seizures, and that God has cured him. We know that God can certainly do that! Hopefully, soon, we will know more about this situation. Please, please keep praying! We wouldn't be where we are today without the support and prayers of everyone around us! We will update as soon as we know more!

Cutter Update

Hello Friends!

Cutter has done wonderfully since our visit at Chapel Hill. We have yet to see any seizure activity. We took Cutter to Chapel Hill on April 3rd for his MRI and a follow-up visit with Dr. Elkay. They gave Cutter Versed to help calm him down. He did great with that. They had to poke him three times to get an IV started. They thought that this might be because he was not able to eat or drink anything for six hours prior. When they started the sedation Cutter fought it terribly. Even though we know he was tired, he had the hardest time just giving in and falling asleep. Finally, the sedation really kicked in and he was sound asleep.

The MRI took about an hour. He woke up briefly after they unhooked the sedation. He was quite grumpy. Then he saw us and calmed back down and fell asleep for another hour. When he woke up the first thing he wanted was milk. Of course! The child goes through a gallon of milk every other day or so! We then went to Dr. Elkay's office and spoke with her about how Cutter had been doing. She told us that Cutter had had an FMRI today, and I told her that the nurse practitioner told me that it was just a regular MRI. An FMRI is a functional MRI that shows the functions of the brain. A regular MRI shows the structure of the brain. She was not happy that they did not follow her orders. She was hoping that maybe the NP just didn't know what she was talking about and that it truly was an FMRI. She scheduled his next visit for June 5. Sometime between now and then Cutter is supposed to have a neuro-psych evaluation to check on his development. She left his medications the same this time.

A few days later we called back to see if it was the right MRI or not. It was not. So, we were pretty upset that we had went through all of that for nothing. Putting your child to sleep is a terrible process. Draining for all those involved. However, she said that she was going to be able to use the images to do further study on Cutter. So, hopefully, she will get something out of the results. We are not sure at this time whether or not he will have to have another MRI later.

Thank you for your continued prayers and support!

Chapel Hill Day 3 ~ Going Home!

Hello Friends!

We get to go home today! Dr. Elkay came in this morning and talked to us about Cutter's EEG. She did not see any actual seizures but she did see several episodes of abnormal discharges on the right front side of his brain where the Cortical Dysplasia is located. She did not see these discharges in September during Cutter's last EEG. She adjusted his Keppra level from 3 ml to 4.5 ml and his Dilantin level from 3 ml to 2.4 ml. Hopefully this will take care of the problem.

We will be back next week for a follow-up appointment and then sometime in April or May for his functional MRI and Neuro-Psych evaluation. They are supposed be getting those appointments set up for us, so we are not exactly sure when they will be.

We hope to be going home in the next little bit. Take a look at some of the pictures we took last night and this morning of the boys. They have both been such good little troopers!

Thank you for all of the phone calls and messages. Most importantly, thank you for the prayers!

Day 2

Hello Friends!

We got to talk to Dr. Elkay this morning. She read Cutter's EEG from yesterday and saw no signs of any seizures! She did see what is called "the tendency to have seizures" but no seizures resulted from any of those events. The plan for this visit is to do monitoring for the next day or so, do some medication adjustments and go home.

At UNCCH they are getting a new epilepsy center with better equipment and better monitoring. This will be in July. She plans to have us back then for more monitoring. Between now and then we need to come back for a neuro-psych evaluation to see how Cutter is doing developmentally. We will also have to come back for a FMRI, which is a procedure where they will wait for Cutter to have a seizure and then inject him with radioactive isotopes to see exactly which parts of his brain are being affected by the seizure.

In July they will look more closely at surgery again. It will really just depend upon what all of the tests show. We are praying that God's will will be done and that we will accept what He has planned for us.

Thank you for all of your support and especially the prayers! We will update again later!

Chapel Hill

Hello Friends!

We made it to Chapel Hill just fine! (The trip was not super fun because Cutter cried the WHOLE time, but that is okay. We made it in one piece!) Cutter is hooked up for his video EEG and will be for the next three days. We have not seen any seizures since we arrived. Hopefully, it will stay that way! We have not seen his pediatric neurologist yet. I am assuming we will see her tomorrow and figure out the plan for the next three days.

Cutter is doing great. Well, as great as a two year old could be expected to do! Hooking him up for his EEG was awful, but it was not as bad as it usually is. He is confined to the room because of the length of his wires but we get to bring toys from the playroom in here. Maverick has done well, too. He gets to stay with us in the room, thank goodness!

I will update more tomorrow as soon as we here anything! Thank you SOOO much for all of the prayers and support!