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!

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!