Day 3

Today's events started early. At 8:00 the pediatric sedation team came to see Cutter and get his IV ready for sedation for the MRI and PET CT SCAN. Getting the IV in was HORRIBLE. His veins were not cooperating because he was not very hydrated. He couldn't have anything to drink or eat after midnight. (He did really good with that!) After poking him in the left arm, the right hand, and the right foot (twice) the IV finally took. They gave him an oral medication to make him "happy" before they sedated him. He was so funny during this time. He kept interrupting the sedation team and telling them "Hey!"

Then they took him down to the PET scan area. A PET CT scan is different than a regular CT SCAN because it look's at the brain's functions and not the anatomy. He had to have 45 minutes of quiet time before they sedated him. When they went to sedate him the IV no longer worked because it got kinked so they ended up putting the IV in his left foot. Mommy had to leave the room because of the new baby and the dangers of the radiation from the sedation. Mommy also can't be around Cutter for 24 hours. Boo. She can be in the room but can't touch him. After sedation Cutter had the PET CT SCAN. This lasted about 30 minutes. We then walked to the MRI station and he had an MRI that lasted about 45 minutes. He did really good during both procedures and came out of sedation quickly and easily.

We finally got back to the room somewhere close to 1:30. Cutter had not yet had his morning medications. We had no idea that we would be gone that long. He got his medications along with Fosphenytoin, which is a good anticonvulsant drug to stop seizures. He was given that through his IV. After that we headed down to the EEG room to have the electrodes put on his head for monitoring. Talk about a traumatic experience. It took about two hours, and he screamed and cried the entire time. He tried so hard to be brave. After it was over he politely told the tech "bye, bye!" He was certainly ready to come back upstairs.

When we got back upstairs Cutter fell asleep. He took a good nap and seems to be feeling good. His head is all wrapped in a turban and makes him a little top heavy at times. All day long he has had over sixty seizures. Hopefully, the Fosphenytoin will kick in soon, and the seizures will stop!

We will keep you updated! We feel the prayers! Thank you!

Day 2 Cont.

Whew. It's been a whirlwind of a day. We have seen several doctors, all of whom have had a different opinion. We finally got to talk to the neurosurgeon assistant, and she was very helpful. She was able to answer a lot of our surgery questions, and seems confident that if surgery is the route we choose to go then it will go well. The plan for now is that Cutter will have an MRI tomorrow and after that will be hooked up for an EEG. We don't know if it will be a 24 hour or 48 hour EEG. We are still not sure when we will be going home, but that does not matter right now. Cutter is still having many seizures, and this will continue until after his monitoring and imaging is complete. Then they will do something to try to control his seizures. This is so they can get a good idea of what his seizures look like and know exactly where they are coming from.

He has enjoyed his day playing with the many toys they have available. He has watched movies and listened to songs, and received a couple of presents from some of the hospital staff. He is spoiled rotten!

Thank you for your continued prayers. God is good! We know we are here for a reason. We will update tomorrow.

Chapel Hill...Again

Hello Friends,

Here is an update from last week: Cutter had over 200 seizures from June 5 to June 12. We talked with Dr. H. several times last week and decided to go ahead and try to make an appt. with the neurosurgeon at UNC Chapel Hill. We called on Thursday and were able to get in touch with Dr. Perry's secretary. They were going to go ahead and try to set things up for an EEG and an MRI. We didn't hear back from them before Wednesday. Monday, Tuesday and Wednesday were all very rough days for Cutter. He had lots of seizures, and they started to get harder. Dr. Huffstutter wanted us to get in touch with Chapel Hill and try to get Cutter admitted. After many phone calls and talking to many different people and waiting, waiting, waiting....they called us back and said they had a room ready for Cutter. Yay! So, yesterday we left for Chapel Hill and arrived at 7:00.

Cutter only had one seizure from 7:00 last night until 8:00 this morning. He has had a few today, and the doctors are working on a plan. He will have an MRI and an EEG at some point, but we are still waiting on those plans to be made.

Cutter slept great last night, right between us on a fold-out couch. :) He is thoroughly enjoying all of the many toys here and is currently in a toddler playgroup.

We will post more as we know more. Thank you for your prayers!!!

And Here We Go Again...

Hello,

It has been so long since we last posted because things had been going great for Cutter. He was having the occasional break through seizure, but other than that was doing very well. However, this started to change on Sunday. Cutter had eight seizures on Sunday. We haven't seen seizures like that in a long time. It hurt badly to see him start over again. We were both devastated. Then on Monday Cutter had 22 seizures altogether. The doctor has increased his Keppra again (it was just increased two weeks ago), and we now have another prescription for the Diastat, which is the "emergency" medicine that we can give him if his clusters of seizures prove to be too much for him.

Today has been slightly better. As of right now Cutter has had 17 seizures all day long. He has finally fallen asleep and will hopefully sleep well through the night. We hope to see an improvement tomorrow.

We know God is in control, and He is going to take care of our little boy. We just have to keep our faith and not lose sight of the fact that great things are to come for Cutter!

We thank you for your prayers and are continuing to ask for them! They are greatly needed!

The Lord Has Blessed Us Again

It has been over a month since we last posted, but we have had a lot going on. Throughout the month of April Cutter had a few sporadic seizures. As of right now, it has been three weeks since his last one. Thank the Lord! Despite the seizures Cutter is doing wonderfully. His vocabulary is picking up, and he is doing great in physical therapy.

We have been talking to Dr. Huffstutter about our options right now. They have upped Cutter on both Zonegran and Keppra. His Keppra causes him to be moody sometimes, but we know that this is something to be expected. We just have to learn how to deal with it the best we can. Dr. Huffstutter wants us to continue to pray about whether or not Cutter needs to have the brain surgery. We don't have to make a major decision right now, but we do need to be thinking seriously about it. Dr. H, as well as our doctors from Chapel Hill, have been discussing the pros and cons of having surgery, and not having surgery. It's a very hard decision to make, and will not be made without a lot of prayer. We are confident that God will lead us down the right path, and we will accept what He has to offer. It's all about His will and His timing.

Our other big news right now is that Cutter is going to be a big brother! God has blessed us once again with a child, and we are so excited!

Please continue to keep us in your thoughts and prayers! We could not do this without the love, support and prayers from our friends and family!

National Epilepsy Awareness Day

March 26th is National Epilepsy Awareness Day, also known as "Purple Day." There are many events going on across the nation to raise funding for children with epilepsy. There is currently nothing going on locally, but one day, Chris and I would like to change that. Maybe have a walk in Marion or something similar. We know how hard it is finding funding for families with epilepsy and would like to contribute to that fund in some way.

Cutter has been through a lot in the past year, but he has come so far. This time last year he was having 25 seizures a day, couldn't even hold his head up, and he just laid around. It was pitiful. Now, he is very active, gets into everything, and can totally light up a room.

However, Cutter is still having seizures and this has been a rough week for us. One of his seizures lasted over seven minutes, and that was the longest seven minutes of my life. But when he finally snapped out of it he played and laughed, and it was like nothing had ever happened! Thank God for moments like that. He gives us what we need exactly when we need it.

They have upped Cutter's meds again to see if it will control his seizures this time. They didn't want to up it but he has done so well on Zonegran they felt like he would do fine. However, if we start to see any side effects we can always drop him back down. So far, he has done well and hasn't had a seizure since Monday.

Once again, we thank you so much for your prayers and support. Our little boy is loved by many people, and we are so very blessed to have such wonderful friends and family.

Enjoy this spring weather!

Chapel Hill Update

Hello,

We went to Chapel Hill last Tuesday to see Cutter's neurologist down there. His name is Dr. Greenwood. It has taken almost one year to get an appointment with him! We actually didn't even get an appt. with him. We saw a Nurse Practitioner and Dr. Greenwood stopped by to see Cutter. We were at the hospital for FOUR hours. We left very discouraged, but it will be okay! Dr. Greenwood told us that he is very disappointed that Cutter is still having seizures. He expected that by this point he would have completely stopped. He was very happy with Cutter's development, but he was very worried about the future and Cutter's development if the seizures continue. He wanted to change his medication to Carbamezapine. He told us that he would be in contact with Dr. Huffstutter about what to do. We left discouraged because we think that Cutter is doing great, especially if you look back to where we were one year ago. However, we do understand that Cutter's development will suffer the longer he continues to have seizures.

We talked to Dr. Huffstutter the next day, and he told us that he agreed with Dr. Greenwood, and that maybe changing Cutter's medicine would do him some good. However, the longer we talked about Cutter's past and the past medications he has been on it dawned on him that Cutter has been on Trileptal before. Apparently Tripleptal is very similiar in makeup to Carbamezapine. Since the Trileptal did not work before Dr. Huffstutter was not sure that he should be put on this other medicine. After talking with Dr. Greenwood the next day they both decided against changing the medication. So, for right now, we are doing nothing.

We love having a Christian doctor working with Cutter. Dr. Huffstutter told us that we would just pray about the situation and what to do next if Cutter keeps having seizures. And we know how far prayers go! God is great, and He will not fail us. We just have to trust in Him!

Thank you for your continued support! We will update you soon!