Doctor Update

Hello, We got to talk to Dr. Elkay this afternoon. As far as the test went this morning, there was a small glitch. While he was having the seizure right before the injection the EEG did a routine maintenance check on the computer down in the lab. Therefore, part of the information was lost. (6 seconds) This was very frustrating for us, because Dr. Elkay said she couldn't read the EEG very well because of that. However, we do not have to repeat that particular test. On Wednesday, however, we do have to do another SPECT test, but this will be done during a non-seizure event. They need to have a baseline image to be able to compare today's image to. She told us that if does not see enough seizures on the EEG report then we will have to stay through maybe Thursday or Friday. Hopefully, she will see enough by Wednesday, and maybe we can go home after the SPECT scan that afternoon. So, the plan for now is just to monitor Cutter through Wednesday, do the SPECT injection and scan on Wednesday, and we will go from there. They took Cutter off two of his medications this morning, but has since had them again. Tonight he will be back on regular schedule with his medicines. As of right now, he has had about thirteen seizures today. This could possibly be due to not having his medications this morning. Thank you for your continued prayers! He is ready to out of here already, but hopefully, it won't be too much longer!

Chapel Hill Day 2

Good morning! Cutter slept very well last night. No seizures all day yesterday. Normally, that is great, but we needed him to have some while hooked up to the EEG machine, especially during his SPECT test today. We had told everyone to not wake him up until the test was set up because he is sure to have a seizure right upon waking up, and we didn't want to miss that opportunity. For the SPECT test a nurse and an EEG tech had to wait in our room until Cutter had a seizure. At that time, you have a matter of seconds to inject the nuclear medicine into his IV so that he could be scanned. We knew the medicine would not be Ready until 9:00 this morning. At seven the lab came up to fix some of the leads. Of course, this woke him up. And of course, he has a seizure. And of course, at that moment the EEG machine decides to mess up and is not on. And it is nowhere near 9:00. We were so worried he would stay wake and not have another seizure. Every time he started to get sleepy another doctor or two would come in. Four came by in a matter of minutes. We knew Cutter would need to go back to sleep so our nurse put a sign on the door to not come in. Around 9:35 Cutter woke up. The neurology team walked in at that moment. He had a seizure, the nurse injected the nuclear medicine and the event was recorded. All in a matter of 11 seconds. Who knew such an important test would be so time consuming, yet so short. It was a terribly complicated process, but one that went well After it was ready. About fifteen minutes after that the sedation team came to get him to be sedated for his scan. Luckily, Cutter had not had anything to eat or drink after midnight last night. You have a two hour window to be scanned after the medicine is injected. So, after fifteen minutes he was sent to the scanning dept. the scan is similar to an MRI but not quite the same. He did have the same medication that they use for MRIs. He has had it in the past, and usually does well with it. Right now, we are in the waiting room. The scan should take about an hour. Hopefully, they will see all that they need to see. I would love for the doctor to tell us we can go home a lot sooner than expected! We will update again soon! Thank you for prayers! God is so good! We give Him all the glory and praise!

Chapel Hill Day One

Here we are at Chapel Hill again! We will be here for the next three to five days. Cutter has continued to have seizures daily. In the past 100 days he has had seizures 79 of them. Some days only one. Other days as many as eighteen. Cutter will be hooked up to the video EEG in the next little bit. He cried when he got to his room. It was so pitiful. But now he is playing happily with a Toy Story Yahtzee game. Maverick is loving all the toys in the play area. He has fell in love with one of the riding toys! We will post more as ergo! Thank you for the prayers!

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!