Almost Home

The week is almost over here. As I woke this morning, I just asked the Lord that today would be what he had it to be. I didn't know whether to ask for seizures for the sake of more data, or just rest with what we have so far and fly with the peace of mind that we are not up in the air in the midst of a flurry. He has been so faithful and knows how this story goes.
It is about 6:30 pm Ohio time and no seizures last night or today. Timmy was full of energy, hungry and busy busy busy. Not the best combo for a hospital room, but we are not complaining. He has definitely been doing better then I have seen him in weeks. I think the reduction in medicine and the huge break from a continued flurry has been so good for him. Tonight the plan is to add one more medicine back and giving him a dose of a sedative to get us home safely. He will still be monitored through the night, and then will be unhooked for an 8:00 am discharge. Jim will obviously not be home to preach, but Gus graciously said he would cover.
We are so thankful to have been here, but are ready to be home again. It looks like there is a great chance we will be back again in the future. Thanks for following the blog... It has been fun to process my thoughts of the day here and be able to communicate to so many at one time.
Keep praying for God's wisdom. When and if another Cleveland trip comes to pass we will continue our to Chronicle our adventures.
We are grateful for each one of you!
Stacy, Jim and Tim

Timmy's favorite Doctor is Doctor Pepper

Wow! Is all I can say... We met with Timmy's Cleveland neurologist today. She took a long time to not only tackle opening the format the past EEG's were done in, but she looked at each seizure, and all of his past records. She came to our room and met with us this afternoon and said the seizures she saw this morning as well as many that she saw on past EEG's had a right temporal lobe focus. She said that the couple that appeared to start on the left in the EEG in August could have started on the right and transfered in a place that would not have picked up on the EEG. What does all this mean you ask?? The surgery option is not a closed door. Not a definite, but what I love about this place is that they are going to have a large group of people in all areas of neorology including neuro-surgeons that will meet and discuss Timmy's epilepsy. I am so blown away at how completely thorough we they are here, and I love the team approach.
The neurologist spent so much time with us today answering question after question after question.
For now, they are hoping for a couple more seizures that are more "typical" meaning what we see on meds at home, that would really help make the case for surgery. She will have the team meeting in Jan. The other neuro doc we met with the first day will also be working on this
from a different angle so to speak. His expertise or focus is on the cause. He is the one who ordered all the labs to look at genetic and or metabolic breakdowns that could be contributors.
He will also be able to add in his piece at the team meeting. All of it will help with where to go from here. If surgery is not ultimately the answer, once they have the whole picture they can put together a plan that will help with the best quality of life he can have.

As far as Timmy goes, he did not seize again after this morning. He did well with his spinal tap as he sang the whole time the mask was on as he drifted off to sleep. The guy is a trooper, had a great attitude and was well rewarded with a whole Dr. Pepper. Who is his dad???? Like father like son.
We will not make it home tomorrow, they need to make sure with less meds that he doesn't flurry. We have changed our tickets to Sunday and that means we can still be back to Tucson by Sun. afternoon, which is sooner than we thought it might be.

Thanks mom, for taking such great care of our kids! It makes being here so much easier.
Thanks to all of you who have prayed for us. We know God is directing our steps.
Thanks to those who have helped us finacially to get here and to help with the bills that will come.
I will try to write an update on Timmy's night in the morning.
signing off for now...

Good Morning! Thanks for checking in on the blog.
Timmy slept pretty well with a blood draw again at 5:00 am
He began to seize around 5:45. I was sleeping next to him and
did not see it because it resembled the one that he had 2 weeks
ago when we called 911. It was very subtle and he was non-responsive.
The seizure lasted about 8 minutes and he was given some emergency meds
to stop it. He then had another one a couple hours later, so we added a
dose of the last med that we took him off of. It will take a little while to
stabilize him at this point, so coming home tomorrow seems like a long
shot. The neurologist will be looking at his past EEG's as well as todays
and doing a comparison to see where in the brain the seizures are coming from. If the
EEG's were clear and easy to read, we should have some more info to
go on by lunch time. In the meantime, he is sleeping soundly.
I will write again as soon as we know better what they have been able to
put together with all the info they have gathered and when we might be
able to head home. It is hard to be away this close to Christmas, but
I know it was the right thing to do to come. Jim and I are both tired so
continue to pray for stamina and peace. The Lord is good, we are
so thankful to be able to be here and have the kind of technology and
care to tackle this complex stuff. We feel so blessed to live in this country and
have this level of care... amazing.

Hello! We are into the evening here. We had a great meeting with the neurologist here. She is going to look over his past video EEG's tonight. She would really like a third one to compare, and is not ready to "throw in the towel" on surgery yet. I love that they are looking at all of his past tests as well as really wanting to get data of their own. For that reason, they are wanting to remove the last medication to precipitae a seizure. They are hoping to record it soon so that we can put meds back on board to make the flight back safer. To safely pull this off it might require staying longer than Sat. which is really making me sad... but it is why we came to this place.

The other kids are on Christmas break starting tomorrow so I am looking forward to getting home and being with them too!

In order to still make our flight... Timmy would have to have seizures tonight, and they would have to be able to get them under control well before they discharge us, a tall order.
If he does not seize, or the neurologist thinks we may need more time to get his med. level back up, over a couple days we are not going to be back Sat.
We will know better by tomorrow!
He will have another blood draw in the a.m and then a spinal tap at around 11:30. ( He will be sedated for that) not my favorite of all procedures. Pray for me and him
Keep praying for God's will to be done in all of this.
***Fun notes of the day... we are expecting a visit from old friends Kay and Micheal tonight. Timmy opened a fun present Barb sent with him, and Timmy has a great attitude, commenting on how he would like to "live here" ( I think he is getting a little bit of king syndrome.. hee hee)

Kaley, Bradley and Holly if you are reading this tonight
we love you soooo much and can't wait to get home and
make cookies and decorate gingerbread houses! Enjoy your
last day of school before break!

Hi! I am doing a morning post just for an update. Even after pulling him off 2 of his 3 meds, he has not had a seizure. We are planning to fly home on Sat. and they have asked how flexible our flight plans are. The doctors would really like to see the seizures first hand and be able to see where they are coming from. Keep praying for wisdom and timing for today. I would hate for the flurry to start right as they discharge us tomorrow afternoon especially with less meds on board and a 31/2 hour flight in the morning. On another note, Jim is preaching on Sunday.
God knows and is in charge, so we keep talking to him about all of it.
We are just letting you know so you can join us in talking to him about it too.
We are so grateful for no seizures! I guess you could call it a catch 22.
I will write again tonight so you can see how God works it all out.
Bye for Now....

Thumb's up is how we describe today. Timmy had more blood tests, and they were hoping to get some seizures recorded today after taking him off of one of his 3 meds last night. No seizures.... Strange, we did ask the Dr. about

possible environmental triggers, no connection at this time. Weird though that his biggest breaks have all been when we are on trips. So we decided we are leaving for Hawaii as soon as we get home from Cleveland! Just a joke...

Timmy did great today lots of energy feeling good. We made the best of it and enjoyed the time being with him. They plan to adjust the meds again because the Dr. can't see the origion of the seizures if he is not seizing.So, we will see how tomorrow goes. The dr.'s and nurses have been very nice, we are reading a book about epilepsy written by one of the neurologists on the team here as time permits. Their was a water main break down the road so the whole hospital is using bottled water until they can get it fixed. Adventure is Jim's middle name so no "local disaster" makes him flinch.

Testing continues as do our dialogues with the doctors here. We won't know very much for a while. Most of the tests resuls will take at least 6 weeks.

Thanks for continuing to pray, it is obvious to us!

Good night!

We had a great day. Timmy had a blood draw to start the day,

but he was half asleep and did not remember it. He had another

seizure free day, so we are adjusting meds tonight. The EEG has

preliminarily shown irregularities on both sides of the brain consistent with

what we have seen in the past. We have more tests tomorrow and a

spinal tap on Friday, so keep praying for that, and most likely seizures tomorrow.

On a fun note.. Santa came and visited and brought Timmy a lego

set. That was a highlight as were our walks to the playroom

and mulitple episodes of Curious George and Uno games. The weather outside is

frightful. In the 20's I had to go out and just let the cold air take my

breath away. It just started to snow this evening and for us Arizona

folk that is fun stuff.

Overall we had a good day, Timmy is in a good mood and doesn't

seem to mind being here.

Thanks for continuing to pray for him, for us, and for my mom and

kids at home.

I read this in the morning:

"I cried out to the Lord in my suffering and he heard me. He

set me free from all my fears. For the angel of teh Lord guards all who

fear him and he rescues them." Psalm 34:6-7

Until tomorrow...

We're here. We arrived last night after a long day of travel.
We were blessed to stay at the Cleveland Guest House. They
gave us a very discounted rate which one person commented that
they "don't typically do" for pediatrics. We slept at the hotel and
then came in the morning to the hospital. It was a chilly day, but
the fresh air was nice. We went to two different neurologist appointments
with very long wait times. I think we were in one office a total of 4 hours.
Needless to say Timmy was such a trooper! He had tremendous patience.
We did not check into the hospital room until about 6:30 p.m. Then came
the wires on his head for the video EEG, and 3 tries to get the IV in.
He was very tired and he did not take well to the
procedures this time. He quickly fell asleep right after. (see picture)
We have many tests that he will be getting tomorrow including labs and
even a spinal tap. Please pray for these as they are done as well as results.
They are very thorough here. They will be checking for a number of things he
has not been tested for before.
We are so glad he has gone a week without seizing, but once again the
timing is not the best. We are hoping if he is going to start a new flurry that
it happens without having to prompt him by adjusting his medicine too quickly.

We are happy to report too that we went from being 6th on the waiting list
to Jim getting a room at the Ronald Mcdonald house! That is such a great
place. Pray for sleep for both of us, I will be here in the room with Tim.
Thanks for reading about our day. We know that you are praying for us and
we are so grateful. I will try to update the blog tomorrow.
Trusting in the Lord,
Stacy

Welcome to Timmys official blog site for his trip to Cleveland.
We are taking him there because his seizures have gotten progressively
worse over the last few years and medicine doesn't seem to help him.
We are leaving for the Cleveland Clinic on Sunday, and plan to update the
site with any new information we get there.
Book mark this site for now.
Please pray for Timmy this week as he undergoes more testing, and for
Jim and I as we walk him through the process.
Thanks for walking with us in the journey!