For the Love of Cutter

For the Love of Cutter

Wednesday, November 21, 2012

Surgery Update

Hello Friends! We found out that Cutter will be having his first surgery on January 8th. We are supposed to be there by 7:30 a.m. to get started. We are not exactly sure how long we will be in Chapel Hill, but we do know that it is a ten-day minimum stay. It will all depend on how much information they get and how long it takes them to get that information. Hopefully, all will go well and his second surgery will be on January 15th. They said that Cutter will only have to stay in the hospital 2-3 days after his second surgery. After six weeks he should be fully recovered! Please keep us in your prayers. God has been so good to us, especially with this situation. He has laid everything in our path and everything has went very smoothly. We anticipate the same with the surgical procedure. Thank you for praying! We will update you soon!

Saturday, October 27, 2012

The Verdict

Hello friends! Dr. Elkay presented all of Cutter's evidence at the epilepsy conference on Thursday. Everyone decided that surgery is going to be the next route for little Cutter Bug. Cutter's initial surgery will consist of intracranial monitoring for three to seven days. They will place a grid on his brain that will allow them to pinpoint exactly where the seizures are starting, what parts of the brain are being affected by the seizures and the pros/cons of removing the cortical Dysplasia. This is very much like a regular EEG but there are many more leads and is a lot more precise. They are looking to start the procedures somewhere around January 5. Dr. Elkay is wanting to do the procedure during a time when she is not working so that she can monitor Cutter very carefully. This the road that God has led us down, and Grace He will provide! We will keep you updated! Thank you so much for your prayers!!!

Thursday, October 18, 2012

Home Sweet Home

Hello Friends, We are finally home and all settled in. Cutter had a rough night and didn't sleep very well. He has had 11 seizures today. :( They didn't change any of his medications this time, so hopefully, he will get back to his normal self and the seizures will decrease. Dr. Elkay came by this morning and told us that she would talk to us next Friday about the decision that the board makes about Cutter being a surgical candidate. So, that is all for now. Thank you so much for keeping up with Cutter and his progress this week. We haven't been able to get back in touch with everyone that has sent emails and messages, but we will try! And we certainly appreciate all of them! Thank you for the prayers. As we hear from Cutter's doctors, we will post again!

Wednesday, October 17, 2012

Day 4 Evening Update

Hello, Cutter's scan went well today, and we were able to get the information that Dr. Elkay needed. The sedation medication made him sleepy today, and he slept for a large portion of the day. He has been awake and pretty happy this evening, although he would love to just get down in the floor and run around and play. Dr. Elkay is going to let us go home sometime tomorrow. YAY! We got to meet with Cutter's potential surgeon this afternoon. His name is Dr. Eldad Hadar. He has been working at Chapel Hill for the past eleven years. He mostly practices on adults but used to only practice on children. He knows a lot about Cortical Dysplasia and has performed many surgeries on children with Cortical Dysplasia. He wasn't able to talk to us specifically about Cutter's case because he has not been presented with it yet, but he was able to answer some general questions. Next Thursday, the epilepsy board will convene to discuss Cutter and whether or not he is a surgical candidate. At that time Dr. Elkay will present all of the evidence and give her recommendation about what needs to be done. Dr. Hadar will let her know if surgery is the right route to go. So, we will know more next Friday. If surgery is not the answer, then I am sure the board will come up with another solution. It was a little overwhelming talking to the surgeon. Nothing he told us was scary or anything that we have not heard before. It was just overwhelming. The same sort of feeling that we felt last year before Cutter was presented to the board. We are fully aware that God is in control of this situation, just as He has been in the past. We know that He will not take us where His grace will not provide for us. However, we are human, and you can't help the feelings of anxiety and sadness. I think God expects this. This is just when we have to lean on Him the most. We know that God will take care of our Cutter. After all, He loves him more than we do! So, hopefully, Cutter will continue to have a good rest of the day. He has only had one seizure today, and that was without the extra medication that was given yesterday. We have been so grateful for all of the phone calls, text messages and prayers. We know that many people wish that they could be here with us right now, but your prayers and thoughts are just as important! A big thank you to Lester and Sara, though, for coming down with us this week so that we could have some help with the boys, especially Maverick. We couldn't have done it without them! Thanks to you all for your support. We will keep you updated. Love you!

Day Four Morning Update

Hello, Well, last night was eventful for poor little Cutter. He started crying about 11:30 and cried until 1:00 a.m. We couldn't figure out what in the world was wrong with him. He wouldn't tell us that anything hurt. We checked his arm but didn't see anything wrong. By 1:00 a.m. the nurse came in and unwrapped his arm where his IV was. The IV had gone bad, and his entire hand and arm were swollen. We felt awful! They gave him some Tylenol and some heat packs (which he did not use, of course). They decided to wait on giving him another IV, and we were all able to get some sleep, at least from 1:30 til 6:00. At 6 this morning they gave him a new IV and drew blood to check his medication levels. He has not had any seizures since yesterday around 11:30 a.m. He had an order for "nothing by mouth" after midnight, so we were eating at 10:30 last night! He didn't get to have his test until 12:30 today, and he is so hungry. He kept asking for cookies and prizes and something to drink. Talk about making you feel awful! Since he couldn't eat or drink, neither did we. So, he is gone for his scan right now. Just like last time, it will take about an hour to complete, and then we get to see him. We get to wait with him while he wakes up from sedation. He will be hooked up to the EEG monitor again once he gets back to the room. If all goes well, then we may get to come home tomorrow! YAY! Nothing like being at home! We will keep you updated. Thank you for the prayers. They certainly help!

Tuesday, October 16, 2012

Day Three Morning

Good Morning! Cutter didn't sleep as well last night as he did on Sunday night. He had a few episodes, though Dr. Elkay is not convinced that they were actual seizures. Chris and I were awake about every hour pushing buttons to record the events, describing what we saw and writing down the times. We are a little exhausted today. This morning, Cutter has already had about 15 seizures. He has already had a little nap because they made him so sleepy. Since his nap, however, he has been in a great mood. He was very excited to see his brother when he woke up. They have really missed each other. Dr. Elkay is going to give Cutter Fosphenytoin through an IV this morning to slow down his seizures. This is to prepare him for his test tomorrow. They will do the SPECT test again during a non-seizure event. The test will probably be sometime after lunch since he usually has most of his seizures in the morning. So, today we sit. And sit. And sit. And sit. And Cutter does not like it not one little bit. (Thought we would go for a little Dr. Seuss there!) It is very hard for a 2 year old to sit in one place for such a long period of time! Especially this 2 year old. Maybe he can play at some point in the near future. There is a big playroom upstairs that we can borrow toys from. We will go get some soon. That is all for now! More later when we have more news! Have a blessed day!

Monday, October 15, 2012

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!

Sunday, October 14, 2012

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!

Wednesday, August 29, 2012

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!

Thursday, July 19, 2012

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!

Tuesday, June 12, 2012

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!

Saturday, April 7, 2012

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!

Tuesday, March 20, 2012

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!

Monday, March 19, 2012

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!

Sunday, March 18, 2012

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!

Tuesday, March 13, 2012

March Update

Hello Friends,

Cutter is doing wonderfully! He has not had a seizure in three weeks! Praise the Lord! He continues to be such a joy and a hoot to be around. He loves his little brother, that is for sure! This two year old phase is not always fun, but we are getting through it! Ha, Ha! Since they lowered the Keppra we have seen an improvement in his behavior, so that is a definite plus. Now we know why he pitches fits (because he wants something or he cannot get us to understand him)! It has been awhile since he has gotten really angry and had "Keppra-rage."

We will be leaving for Chapel Hill on Sunday and will be there for three days. Since Cutter is not currently having seizures (that we can visibly see) we are not sure how this trip is going to go.

We can't believe how much Cutter has grown. He is now 26 months old and getting so big. He is potty training and learning to talk more. He is a wonderful little boy and quite a character.

We will keep you updated about our Chapel Hill trip! Please continue to pray!

Sunday, February 19, 2012

Latest Update

Hello Friends,

It is a lot harder to update Cutter's blog now that we have a new little one in the house! Cutter is continuing to have seizures, almost daily. There have been a few days since Dec. 3rd that he has not had seizures, though. He has had over 600 since December 3rd. We went back to the doctor two weeks ago and had another EEG. His EEG is still the same. We were thankful to see that his seizures are still starting in the same place, on the right side of his brain. Dr. Huffstutter's recommendation was to go back to Chapel Hill to discuss surgery once again. So, as of right now, we will be going back to Chapel Hill on March 18th for a 3 day video EEG. We are a little trepidatious about this trip, as we will have Maverick with us, too, and we are not sure what all tests he will have to go through.

We will update again soon. Please keep us in your prayers!