We finally know something.... ( I explain the surgery which can get graphic)

Today, Nov 6, we met with Allyson's Doctor who is in charge of brain mapping. He uses the most amazing technology to show where the misfire is inside Allyson's brain. According to this information, there is a 70% likelihood that her seizures are beginning in her frontal lobe. There is a 30% chance they are coming from the insular lobe which is much deep and a bigger mystery to most surgeons.

The plan is to go ahead with the beginning portion of the surgery. The first part is where they open her skull on the left side. They place electrodes over the area of the frontal lobe in question. The hole is covered with a hard lid (sort of like Tupperware but stronger) and she stays in the hospital for 7 days. The staff will induce seizures with the electrodes in place.

If they record activity, the seizures begin from the frontal lobe and they will continue with surgery to remove that part of the brain.

If the electrodes do not record anything, the seizures are starting from the insular lobe and the remove is not yet possible in the United States. Apparently, there have been some in France but they are rare. So we would need to wait until technology catches up with Ally's brain.

After her head is put back together, she can go home in 3 days. YUP! I said 3 days. I didn't believe it either. Apparently we don't have a whole lot of nerves inside our heads. That explains all those people walking around with rods and bullets in their heads they didn't know about.

We do not have a definite timeframe yet. I don’t think it could happen before the beginning of the year. I will let you know when the next step/appointment is.

Thanks for all the prayers,

Dana, Randy and Ally

What an Anticlimactic day!!

Well the day of the meeting arrived. We received our phone call from the doctor's office. However, the call was just to make an appointment for Tuesday at 11:30 am to go over the results of the meeting. So, we wait till Tuesday.

This is one of those things were I believe God is trying to teach Randy and me patience. We come from the age of instant answers. This situation however, fast is not always good. The doctors need to be right before they cut. I used to joke about never praying for patience because God will not wave a wand and give it to you. You will be given things to be patience about. So, God is teaching us patience whether we want it or not.

God Bless -

More on Tuesday -


Dana

We will know by Thursday.

The big meeting is going to be Thursday, November 1, 2007. Allyson's doctor's will meet with expert neurosurgeons from Children's and University Hospitals. All of the testing she has had revealed that the seizures have not been changing lobes as some as the doctors thought but they are in a deep lobe called the insular lobe. The seizure activity was masking itself in the lobes above it. This will make the surgery more difficult but not impossible. Please pray for our family and the those involved in making the decision.

More news to come.

Dana Clark

We're Waiting................

That's what we are all doing, waiting. The team of doctors meet on Wednesdays. They have all the info they are able to get at this time. Every Wednesday we don't get a call, we just assume we will hear something the next Wednesday. So the answer to what is going on is - we're waiting. They haven't said yes, they haven't said no.

On a good note, Allyson turned 16 yesterday, October 14. Many of you remember spending this month, 16 years ago worrying and praying for her. Seems things have not changed that much. God had a wonderful plan for her life and I'm sure He has plans for her now. Please continue to pray for Ally as she waits for news of her surgery.

Thanks,

Dana

Ally's back in the hospital.

Allyson is back in the hospital for more tests. The Doctor was not sure about one of the tests. He said it was fuzzy. He wondered if we would mind doing it again. We said no. After all, if anyone is going to touch her brain I want them to be sure.

We will be here until Thursday, Sept. 27. She will also have another test on Tues. Oct. 2. We should know something final by mid October. This process has taken much longer than we had originally thought. but again it's brain surgery. They better be sure.

Dana

Doctor is back from Vacation

Ally's Doctor is back from vacation. He is well rested but a tad behind.

Tomorrow, Aug 15, Ally's Neurology, Neurosurgery and neuropsychology team will meet. Dr. Lee is presenting her case and recommending the surgery based on the tests performed in July. She does have to re-do one test, just to be sure. As long as that test comes back ok. Her surgery will happen. The time line is even longer than I expected. Her surgery will be 3 - 6 months after her next neurosurgery appointment, which will be in 6 weeks.

Near as I can tell, We are looking at some time between December and February.

I'll post more as it comes available.

Dana

Tuesday 12:00 PM

Hello everyone,

Sorry I haven't posted recently. There was nothing to report. Sunday and Monday were just watch and wait. Today, Allyson had a MEG test. I don't completely understand it but it has to do with magnetic something that penetrates the skull better than the MRI and the PET. We also have the last MRI today at 2:30 PM and then we go home (Yeah!)

Last night we again stayed up until 4:00 am. Lack of sleep helps show the problem areas in the brain. This is why Ally has trouble when school is in. Getting up every day at 6:00 am is a lot tougher than her summer hours, sleeping till noon.

We talked with the doctor today. Nothing will be decided until the end of August. After that a time will be set up. The waiting is hard but it will all be for the better in the end.

God Bless,

Dana

Saturday 4:30 PM

Things are going rather slow here. The seizures are happening but mostly when she sleeps. By the way, That's what we told them would happen. Anyway, Allyson is now into mega-boredom. You can only do so many crossword puzzles or word finds in a day. I was able to get her a copy of the New Harry Potter book so at least she now has something to do. I got the last one at Kroger's for her. We had pre-ordered one for Sarah, but as much as Sarah loves Ally, parting with the first copy was not an option. Sarah is a huge fan and loves to read.

They have now asked that either Randy or I be here 24/7 until she is released. We are here until Tuesday afternoon. Doesn't that sound great? We can't leave unless we get a nurse to come in and sit with her. This is so we can push the seizure button. Once again, she only has them when she is sleeping. I think this will drive Allyson crazy. She loves us but she is 15.

I know I shouldn't complain. They are doing it all for Ally, but this place can get to you after a while.


Lots of love to all,

Dana

Friday 7:00 PM

It has been a very long day for Ally. Without her meds, she is very tried. They were able to get a good reading on one seizure but are hoping for another. I brought her something to read so she is not quite so bored...for now.

If you have been trying to call, the phone was not working. It is now working. Her number is 636-1744. She'd love to hear from her friends.

Dana

Friday 8:30 am

Good Morning. Well it's good for Ally. She now gets to sleep all day while a nurse watches her. They are trying to catch a seizure. As per usual, nothing actual happens while you are watching and wanting it to happen. We stayed up until 4:00 am. this is supposed to help induce a seizure. But the watched pot theory as begun.

John the nurse is now here watching everything she does. Oh what fun for him. Ally is just sleeping. His job is to inject dye at the onset of the seizure. This dye will collect in the area of her brain affected by the seizure. They will then do another PET scan to compare against the first scan.

I am continually amazed at what the doctors are capable of doing.

Thursday 11:00 pm

Ok. It's close to eleven and we still have 5 hours before we can sleep. This is like Ally's dream. She can stay up as late as she wants. Ally is watching movies.

I however, need to invest in some toothpicks and learn to drink coffee.

Dana

Thursday 4:30 pm

Ally is all settled in. You can call her @ 513-636-4200. Asked for her and they will transfer you to our room. We are in A7 South. She doing well. Tonight they need to get a recording of a seizure. They will be withholding her meds so they can be sure to get one. It will be a tough day but worth it if they can get the info they need.

Ally is bored. They video telemetery means she can't leave the room. They don't have many tv channels for teens here. Mostly Disney, Nick and Noggin.

Will update more soon.'

Dana

Tests start Thursday

Allyson's test begin Thursday, July 19, 2007 at 9:00 am. She will be staying at Cincinnati Children's for 5 days. She is allowed visitors and phone calls.

Allyson's surgery

After struggling with seizures for 11 years, Allyson's Doctors have decided to consider her for brain surgery. This operation will take out the portion of her brain that is misfiring. Randy and I have set up this blog to help keep everyone up to date on what is happening.

Allyson’s first date for testing will be July 19. She will be in the hospital for 5 days. The tests will be non-invasive i.e. – MRI, PET etc. Once the doctors get this information they will then either accept or deny her for surgery. If no, we go back to trying to use meds to control the seizures. If yes, she is scheduled for brain mapping. This includes putting small discs in her brain to find out what side effects the piece they take out will cause. This takes another 5 days or so. After that is determined and surgery is still recommended, the surgery to remove the piece is done. My understanding is that surgery takes about 8 hours. Recovery will be 2 – 8 weeks.

This is all we know right now. Will update as we know.