For the Love of Cutter

For the Love of Cutter

Wednesday, March 31, 2010

It's Going to Be a Good Day!

Well, yesterday wasn't the best day we have had (seizure-wise). Cutter had 4 altogether. So far, today has been great and he hasn't had any! We are praying that we have another good day! Thank you for all of your support!

Keep Praying!

Monday, March 29, 2010

What a Great 46 Hours

Well Baby Cutter went 46 hours without a seizure! At 7:00 tonight he had his first seizure of the day. :( We were really sad, but we know that it is going to be okay!
Please keep praying!

Sunday, March 28, 2010

Great News!

Lord I lift Your name on high...Lord I love to sing Your praises!!!

Cutter has not had a seizure since 9:00 Saturday night!!! This is his first seizure-free day in WEEKS! Praise the Lord! Only He can take this away from Cutter. We have had a wonderful day with him. He has been so happy and has talked more today than he ever has!

What a wonderful Sunday!

Keep praying!

Friday, March 26, 2010

Keeping the Faith

Hello Friends,
It is so hard to not get discouraged every time that I see my little boy having a seizure. It is a horrible thing to watch, and if I could have them for him I certainly would. I would take it away from him in a heartbeat. However, I can't, and we have to deal with this the best way we know relying on God. It is because of His grace that we are able to get through this. We know He has a plan for Baby Cutter. Even though we so desperately want to see this plan now, we know it will come in time.

We are overwhelmed with the many people who have shown their support. We feel incredibly blessed to be surrounded with such a wonderful community of friends and family. Thank you all. You will never know how much this means to us.

Please pray that God will continue to give us the strength that we need to hang in there and stay positive.

Thursday, March 25, 2010

Home At Last!

Hello Friends,
We got home from Chapel Hill last night around midnight. It feels good being home! Cutter started his new dose of medication last night along with his two new meds (which are prescription vitamins). Everytime we up Cutter's medicine it makes him a little grumpy. So, today he has not been his normal self. He is also tired and worn out. He has had five seizures today, and we are looking forward to when this medication kicks in (POSITIVE THOUGHTS) and he is seizure-free!

We will follow up with Dr. Huffstutter on Monday, April 5th and go back to Chapel Hill in six months (unless something drastic changes).

In the meantime, we are still playing the waiting game. Thank you for all of your thoughts and prayers!

Wednesday, March 24, 2010

The Latest

We just spoke with our doctors about Cutter’s case. We have always known that Cutter has a small brain malformation. When Cutter first started having seizures we thought that the brain malformation was called encephalomalacia, which is loss of brain tissue. However, due to high resolution imaging on his newest MRI we now know that the brain malformation is called focal cortical dysplasia, which mean more brain tissue and not less. (The spot on his brain has not always been something that is easily seen because of his brain still developing. So, his MRI in February is considered “old.” As his brain continues to grow that spot will become more noticeable and easier to see with an MRI.) What FCD means is that neurons in an area of the brain failed to migrate in the proper formation during pregnancy. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures and may be associated with some level of developmental delay(s). ( I have to quote Wikipedia here because this is the best definition I have found!)
So, what does this mean for Cutter right now? Well, for now they are going to up his current medication to see if this helps any. He is currently on two different medications (Keppra and Zonegran). We will follow up with Dr. Huffstutter to see what kind of timeline he would like to use when giving the new dosage. If Cutter is still even having just a few seizures we are going to try a new medication. We will give it adequate time to work.
If the seizures still persist then we will try other options. Other options include a special diet (ketogenic) which is a high fat diet. (We are actually going to speak today to a dietician just in case we have to go that route.) There is also something called Vagus Nerve Stimulation. (Thank you again Wikipedia for the following definition.) VNS uses an implanted stimulator that sends electric impulses to the left vagus nerve in the neck via a lead wire implanted under the skin. This would be tricky, though, because he is so little. We are going to meet with a neurosurgeon today to talk about that, as well as possibly surgery on that area if we need to go in that direction. (That would be a last resort, of course.)
Right now the doctors are concerned about the left side of his body. It is a lot weaker than the rest side. They aren’t sure if this is because of damage caused by seizures or if it caused by the malformation. Either way, we are going to work with some therapists on this. I have already talked with Allyson Greene, who is being wonderful enough to help me find people to help us out with this! 
We get to go home sometime soon. I am guessing tomorrow morning, though it hasn’t been officially said by anyone. There is no need to keep Cutter here any longer to run tests or do any other observations because they clearly can see what the underlying problem is. Thank Goodness! If they did not know the cause of the seizures he would have to go through all kinds of stuff. Even though we don’t love the diagnosis, it could be so much worse! We are so thankful that this problem is as small as it is. Though we still have a long road ahead of us we are hopeful that the medication will be the best solution and will work.
Thank you for all of your prayers and support! We will continue to keep everyone updated!

Keep praying!

Tuesday, March 23, 2010

We've Got News

What a day we have had. I will try to keep it short. Cutter had an MRI today. It did show that Cutter has a slight brain malformation called Focal Cortical Dysplasia. This is the same spot that our doctor in Asheville saw, but the higher resolution imaging here at Chapel Hill helped the doctors to see exactly what is going on with Cutter. We pretty much got the same diagnosis as we had before, which makes us all the more confident that we were doing the right thing by going to Dr. Huffstutter. We are glad that Dr. H. sent us this way, though, so that we could get an EXACT cause of the seizures.

Cutter developed the abnormality between the 8th and 12th week of pregnancy and there is nothing that could have been done to prevent it from happening. So far, Cutter has not really responded well to the medications he has been taking, but the doctors here are going to keep trying. All we know right now is that Cutter will be experimenting with different medicaitons to see if any of them are going to stop the seizures. This will go on for a few weeks to give his body plenty of time to respond. If he continues to have seizures then we will go from there.

We are incredibly thankful that we did not get a worse diagnosis. They think Cutter is doing great and will continue to develop normally, especially after the seizures stop completely. We appreciate all of the hard work that all of our doctors (in Asheville and Chapel Hill) have done to figure out what is going on. Now, we just continue to wait and see.

God is good, and we continue to be thankful for all of His blessings. Cutter has laughed and played and has had himself a grand ole time! (He doesn't understand that when you are at a hospital you are supposed to act sick!!!)

Thank you for your prayers! Please keep praying! We still have a long road ahead of us!

Monday, March 22, 2010

Here We Go Again...

Hello Friends,
Well, today was our first full day here at the hospital in Chapel Hill. We do not know anything more yet than what we did before. There have been a bunch of doctors in and out of here, but we haven't really discussed a plan of action yet. All we know is that he is having another MRI tomorrow morning. Which means he can't eat anything after midnight tonight. :( They also had to put in an IV so that he doesn't get dehydrated while he is fasting. The IV is in his foot this time. He was a brave little boy!

He has had more seizures and jerking episodes today. However, they have all been recorded and videotaped. He is continuously hooked up to an EEG monitor and video camera. (We have to be careful what we say! Ha,ha!) Several nurses have seen his episodes, too, so maybe that will be of some help.

We aren't really sure how long we will be here since they aren't quite sure what all is going with Cutter. They aren't sure why he is still having seizures, why he isn't responding to the anti-epileptic drugs, and what the jerking episodes really are. We will stay as long as we need to!!!

We will keep you updated. Thank you for your prayers!

Sunday, March 21, 2010

We're Here!

Well we made it to Chapel Hill. We had to wait 5 hours for a room but that's okay! Cutter has only had one jerking episode today. Yay! (Isn't that ironic, though?) However, we know that God has sent us here for a reason, so we are just sitting and waiting. We will see the doctors in the morning. We will keep you updated!

Keep praying! We appreciate all of your prayers!!!

Saturday, March 20, 2010

Tomorrow Is the Big Day!

Well, tomorrow is the big day! We leave for Chapel Hill first thing in the morning. We are supposed to be there by 12:30. Packing was not so fun. We just weren't sure what all to take! Please keep us in your thoughts and prayers. If there is wireless internet I will try to keep everyone updated.

Cutter has had a great day today. He has not had any seizures that we know of but has had several jerking episodes. Hopefully this week we will learn more about all that!

I also took some pictures of him today. We are so blessed to have this little guy in our lives. We love him so much.

Keep praying! :) God is GREAT!

Friday, March 19, 2010

To Chapel Hill We Go

Hello Friends!
I know everyone has been anxiously awaiting the news about our doctor's visit today. Cutter has actually had two good days now. He has only had a few seizures each day. First of all, I want to say that we are so very blessed and thankful to be working with a doctor like Dr. Huffstutter. He has been nothing but wonderful, and he always makes us feel better when we see him. It is so reassuring that he is a wonderful Christian man that prays!

Today Cutter had an EEG, and the doctor told us that the EEG has not deteriorated any, so he was pleased with that. He did tell us that it had changed since the last time he had one. He saw that Cutter is now having seizures on both sides of his brain. The part of his brain that has a malformation is now affecting the other part. So both parts of his brain have learned how to seize. Therefore, he wanted to send us to Chapel Hill to get another opinion there. Down there he will undergo a 24 hour video EEG. He will be continuously hooked up and monitored.

He did tell us that he is not for certain that Cutter is having infantile spasms. He is leaning towards no because they are not like regular infantile spasms. However, he did say that there was a possibility that this is where that is heading or that Cutter could be having an atypical type of spasms. He also told us that Cutter himself is not typical. He told us that infants usually do not have seizures this young and that is uncommon that he is not responding to the medication. He is hoping that by working with the doctor in Chapel Hill they will figure out what these jerking movements are and how to stop the seizures entirely.

Cutter is still on the steroid and will be until May, though starting next Tuesday he will be weaned off of them. He told us that his immune system will continue to be low until he is only taking 1 dose a day. Therefore, we are still "quarantined." He is also now on a new medication that I cannot pronounce, much less spell! Who knows? It may do the trick!

So, we leave for Chapel Hill on Sunday and will be there at least 3 days. Please keep us in your thoughts and prayers, and if there is wireless internet available in the hospital I will be sure to keep everyone up to date!

Thank you SOOOOOO much for your prayers and support. We appreciate them all!!!

Wednesday, March 17, 2010

Happy St. Patrick's Day!

Well Daddy had to stay home from work today to watch Cutter because Mommy wasn't feeling so great. Cutter's day has been just like the rest of this better, but no worse really. (Except for the number of times he is jerking during one episode.) We are anxiously awaiting Friday's appt. Taking him off the Trileptal has not seemed to help anything. He did go from 6 a.m. to 11 a.m. this morning without having a seizure. That was great! He has had several seizures since then, but maybe he will have a good rest of the day!

Keep praying! God is good!

Tuesday, March 16, 2010

The Best Blessing

Cutter had a rough day today. Already he has had 9 seizures. He is jerking a lot more now, and that really concerns us. However, there were times today when he would just look at me and smile. He fell asleep while swinging and again while sitting in his high chair. He was so sweet. Though he has been very fussy since he started medication, the times where he does laugh and smile and play makes us forget all about the crying. He has been such a blessing to Chris and me. We have both fallen IN LOVE with this little guy! God has His hand on all of us, and we are staying strong!

Keep Praying!

Monday, March 15, 2010

New Update

Hello Friends,
I talked to Dr. Huffstutter this morning. He told me that it can take 7-10 to see full results of the steroid, so by the time we have his appt. on Friday we will know if the steroid is working or not. He scheduled to have an EEG on Friday, too. He told us that if we do not see progress or if he gets worse then he wants us to get a second opinion at an epilepsy clinic, preferably the one in Chapel Hill. He also told us to take Cutter off the Trileptal completely. Maybe this will make a difference!

We will keep you updated.

Please pray that God's will be done in our lives and to be with Dr. Huffstutter, who is a wonderful Christian man that has been very kind to us and is genuinely concerned about Baby Cutter.

Sunday, March 14, 2010

It's Bound to Get Better

We all slept great last night (Friday night)! Cutter continued to sleep a lot all day. He ended up having 9 (yes, 9) seizures all day. ***Sigh. If I could do it for him I would. Even though we have an appt. Friday, I am calling the doctor back tomorrow. Just to see if we need to change the dosages around. It's hard to believe it hasn't even been two months since all of this started. It feels like a year!!!

And to beat it all, since we are pretty much qurantined we didn't get to spend a lot of time with Nathan while he was home, and we can't go visit our new sweet niece (and cousin), Davin. :( Makes me sad, but we have to do this right now. We cannot risk him catching anything!

On a happy note, this baby is LOVING baby food! He likes everything he has eaten so far! I take pictures and video every new food!!!

Thanks for all the support! Keep praying!

Just An Update

Cutter did have a better night last night. He actually slept five and a half hours! Yay! He had several seizures yesterday, though, and that concerns us. However, we have been told that sometimes it can take up to 7 days for a steroid to completely stop the seizures. So, with that, we are hoping and praying (lots and lots of praying) that the steroid kicks in and works a miracle. God is still in control. Though it's hard to see and understand now, there has a got to be a BIGGER reason that all of this is going on. This is not a test for Cutter at all. Whatever the reason, He needs to get all the glory for it! Please pray that we will stay strong and patient. We need His guidance more now than ever!

Keep praying!

Friday, March 12, 2010

Oh What a Night!

Cutter proceeded to have just a couple more seizures this evening. Then the crying spell started. For the past week and a half Cutter has started having a terribly crying spell almost every night at random times. They can last up to an hour at a time. The pediatrician said that Cutter is too old to be getting colic, so it is probably related to his seizure disorder. When we spoke to the pediatric neurologist about it he told us that his medication is probably making him very fussy and that he will grow out of that. Tonight he cried for over two hours. We tried everything: changing him, feeding him, playing with him, changing his clothes, gas drops, Tylenol, walking with him, bouncing him, rocking him, swinging him, and riding him around. We rode around at 9:00, and the car started acting up. So we came back home. After trying everything under the sun we put the car seat in the truck and headed out again at around 10:30. This time, it worked! He is sound asleep....for now! So, it's time for Chris and me to rest while we can.

Keep praying! :)

Still Hopeful

Well, since my last post earlier Cutter has had two more seizures. That makes three in all today but that is much better than seven or eight like he has been having! On a happier note, Cutter ate peaches today (Gerber peaches, that is). He loves them! :) On the whole, he is one happy baby!

Keep Praying!

Hooray! A Very Good Day!

So far Cutter has not had a seizure since 3 a.m. today! That is over 9 hours!!! It has been a very LONG time since he has gone more than 4 hours without having a seizure. We changed his medication yesterday (upped one and took one down a notch). Hopefully, with the combination of Keppra, Tripleptal and the Predinsolone, we will start to see some results!

Keep praying! God is good!

Thursday, March 11, 2010

Starting a Blog

Hello Friends,
Chris and I have been blessed with many people asking about Cutter and wanting updates, so I thought a blog might be the best way to communicate with everyone. As everyone already knows, Cutter was diagnosed in January with epilepsy. He was put on medication and was seizure-free for three weeks. Then in February the seizures started again, and this time we are having a hard time controlling them. He was put on two different medications, neither of which have stopped the seizures entirely.

This past Tuesday we met with Cutter's pediatric neurologist again and talked about other options. He told us that he thinks Cutter has a rare form of infantile spasms. Regular infantile spasms show an irregular EEG and other clinical symptoms that Cutter does not have. The type that Cutter is having is structural and only pertains to the left side of his body (because the initial problem is on the right side of his brain). Unfortunately, until a child has tried different medications for a length of time and been unsuccessful with them, this is not something that can be diagnosed right away. He was hoping that they could be controlled with simple medications and simple dosages, and that has just not been the case. Therefore, the aggressive approach is to put Cutter on steroids. No doctors like having to give steroids but sometimes it is necessary. The steroids are not the total solution to the problem, however. They are being used to stop the seizures, and his regular medication is supposed to kick in and keep them at bay. He is trying him on the steroids for a two week period. During this two week period Cutter will be pretty much quarantined. This drug will make his immune system very weak. He can't be exposed to any kind of environment that could possibly give him an infection. With this type of steroid it would be hard to tell if he was sick because it masks the normal symptoms of an infection such as running a fever. Dr. H. was very adamant about us taking these precautionary measures to ensure that Cutter stays healthy. Therefore, I will be out of work for the next couple of weeks to make sure that I don't bring something home to him. Also, he can't be in the sunlight. :(

So...we should start to see some results soon from the steroid. We go back to the doctor in two weeks to have another EEG. If the results are good and his seizures have stopped, then he will slowly wean him off the steroids. We have not discussed what will happen if the steroid doesn't work. He wants us to solely concentrate on this part of the treatment.

We GREATLY appreciate all of your support, concern, and prayers. We will definitely keep you updated! Let me know if you have any questions!