Meeting with the Epilepsy Expert.

We began our day today with a visit to the GI doctor.  Everything is wonderful in that area, and Dr. Rosenblum cut Levi's Nexium in half!  The less meds the better, in my opinion.

Our neurology visit was great as well.  We saw Dr. Chrusciel (our favorite) and the epilepsy expert, Dr. Gibbons.  We liked him immediately.  They were both able to watch the video Patrick took of Levi's seizures before our appointment.  We were glad they found that and the seizure history I drew up helpful.  It's a good thing we had the video, because Mr. Levi only had one seizure the whole time we were there.  Go figure.

The plan now is to start Banzel tomorrow and begin weaning both Keppra and Clonazepam.  If Banzel works, then we will eventually wean Phenobarbital and Topamax.  If this is the case, then by Christmas Levi will be on only one seizure medicine!  I pray this works, I'm so ready for the seizures to go away.  I'd like to see this little guy's true personality.

So our day was a raging success, and we are looking forward to beginning Banzel tomorrow.  Please pray with us that this is the one that will STOP these seizures, and quickly!  Thanks for all your continued prayers for Levi!

One More Day Until We Meet the Epilepsy Expert!

Levi has had a great weekend!  Moga stayed with him yesterday while Patrick and I had a nice day out.  We went to yard sales and then bowled a couple games to brush up for the league we are starting next week.  I haven't bowled in years (except for on the Wii...does that count??) and wanted to at least see how bad I am before the league begins. lol  Fortuanately, I didn't shame myself too much.  We had a nice relaxing time, and came home to a happy little baby who was enjoying all Moga's attention.  Then church this morning and our small group facilitators meeting, which held lots of surprises and exciting new information.  It's been a wonderful weekend!  Patrick is off this week and we're looking forward to a fun, relaxing time.

Tomorrow is the big day!  Our neurology appointment is at 3:15 and we will be meeting the epilepsy expert.  I have condensed all Levi's pertinent information from the time he was diagnosed with Infantile Spasms to now on an outline so we will have hard dates to give the doctor. Too often when posed with questions my mind goes completely blank, and it's hard to keep things straight anyhow when you are counting seizures day in and day out.  It becomes a blur after a while.  So we have questions drawn up and a nice timeline of seizures and meds to keep everything organized and hopefully allow us to answer all his questions intelligently.  I'm extremely excited about this appointment!  Please pray with us that the doctor will see Levi's issues clearly and that God will give him wisdom to find the solution to stopping the seizures.  One thing I plan on asking for is to change the meds so he is not on so many sedating drugs.  It would be one thing if they stopped the seizures, but they haven't, so maybe we can find alternate meds that will not knock him out as these do.  We appreciate all your prayers for our little Levi!

Seizure Diary:

Rolling Over!

Yesterday Levi rolled from his side to his back and also from his side to his stomach!  The poor little guy has spent so much time in the hospital/being drugged/in a cast/in a brace that he hasn't had much practice, but he's doing great!  During tummy time he also scooted forward a couple inches!  Today he spent a while chilling in his swing, and since he naturally spread his legs to where they would be in the brace, I felt very comfortable leaving him there for a nice nap.  I think he enjoyed having something different.  I hadn't put him in the swing in quite a while because he wasn't liking it.  I guess he changed his mind yet again. All these things happening in one day is amazing, and we are so happy to see him progressing.

The PT brought a stander today for him to use, and he was absolutely amazing with it!  I didn't expect him to tolerate it for very long, but he stood in it for 40 minutes!  He fell asleep about halfway through, and it was too cute to see him sleeping standing up. lol  This is going to be wonderful, because it means that he will have consistent weight bearing on his hips, so he can be out of the brace more during the day.  It also has a huge tray that is perfect for toys and food, and gives plenty of room for him to explore things with his hands.

Monday is our appointment with the epilepsy expert, and we are super excited to meet him.  Please pray and believe with us that this doctor will be able to give us answers and a solution to STOP these seizures!

Seizure Diary: 38 Spasms in 12 episodes; Ticks - 3; Stiffs - 3; Both - 8

Levi's Seizure Video -- Infantile Spasms and Focal? Seizures

Here is a video of Levi's seizures.  I know the short ones where his eyes roll and his hands come up are Infantile Spasms.  Not sure what the stiffening and/or ticking seizures are.  Maybe Focal Seizures?  Maybe the stiffening is just muscular from the CP?  I'm not sure, but I hope to find out more on Monday when we see the epilepsy expert.

Catching Up

Seems like we have just been so busy lately I haven't had a chance to update.  Since my last post, Levi's seizures have gotten worse, and then better.  We increased Phenobarbital to 8mls last week, and 9mls this week.  I did not expect to see any improvement from the Phenobarb, I guess because he's been on it since he was 3 weeks old, and it controls the focal seizures, not the Infantile Spasms.  Well, I was wrong!  Monday and Tuesday the seizures decreased a bit, and yesterday they were drastically decreased!  It's noon now and he's only had 6 spasms and 2 of the ticking/stiffening seizures!  At the bad point he could cluster 10-20 spasms in one episode, so this is HUGE!  I'm so glad!

Tomorrow the PT is bringing a stander for Levi.  I'm super excited about this!  If he does well, it means that he can have the brace off more often because standing causes his hips to bear weight and develop normally.  We have already been doing weight bearing exercises, but I still worry when I have the brace off for very long.  It's challenging sometimes to find a good balance between wearing the brace, working on therapy, and trying to give him a nap in a position other than on his back.

Levi has been crying at night again.  I don't know why 7:00 is the magical hour, but he cries up to 2 hours.  It's not like it was when he used to scream, but it's still upsetting.  I believe it's his teeth, in combination with being overly tired and fighting sleep.  His little gums are swollen and have bumps everywhere.  Come on and  pop through already! lol

Otherwise he is doing very well.  We see the epilepsy expert on Monday, and looking forward to it very much!  I'm praying that God sheds light on the situation and we will leave there with some answers and solutions.  I'm ready for these seizures to GO AWAY!  Thanks to everyone for your prayers!

Seizure Diary:

Saturday 8/6: Spasms 110 in 16 episodes; Ticks - 11

Sunday 8/7: Spasms 73 in 18 episodes: Ticks - 5

Monday 8/8: Spasms 42 in 9 episodes: Ticks - 5; Stiffs - 6 (Since the stiffening/ticking seizures have changed and sometimes only tick or stiff, I decided to break them up.)  1:00am he had a combination spasm and tick at the same time.)

Tuesday 8/9: Spasms 62 in 12 episodes; Ticks - 1; Stiffs - 2; Both - 7

Wednesday 8/10: Spasms 43 in 10 episodes; Ticks - 1; Stiffs - 2; Both - 7

Thursday 8/11: Spasms 23 in 12 episodes (this is the least amount he's EVER had!!); Ticks - 2; Stiffs - 5; Both - 12

Me and my brother Tommy :)

Tummy Time!

Prayer that turned things around

This was the prayer that our church did back in early January on a Wednesday night. It was after this prayer that Levi's health took a turn for the better. We are just amazed how far our little man has come in such a short time. This was the first time Lynn and I got a chance to see this. We finally got around to watching the DVD from this church service. We both just want to give a shout out to all our family, church family and friends and thank each and every one of you for your continued prayers. We firmly believe Levi would not be where he is today without your prayers. Our God is truly an amazing and loving God! Now lets get these seizures under control, and our boy will be ready to tackle the world :)

Still a Lot of Seizures

Levi is still having a lot of seizures, but he is so much more alert and happy!  After church on Wednesday he started cooing and babbling, and every day he seems to "talk" to us more!  It's wonderful to see him doing something new.  Today in developmental therapy Mary put his right hand on a little fluffy ball, and he brought his left hand up to it!  I've also noticed that he seems to feel around and explore with his feet.  What a neat little guy he is!  Today he stayed with Moga while I went to the grocery store, and then tonight I went to the women's ministry meeting at church (which was awesome!) and he stayed with Daddy.  It was a busy day, but good.  I think he was making up for lost time from last week, because he did not want to sleep today.  A few cat naps was all he would take, and he didn't give in and fall asleep until around 10.  He's comfy and snoozing now though.

Seizure Diary from Thursday - Spasms 94 in 17 episodes; Ticks - 10

Seizure Diary for Today - Spasms 53 in 17 episodes; Ticks - 25

More Awake, But More Seizures.

This morning Levi woke up with smiles.  It was a wonderful thing to see!  He was still drowsy, and took several naps, but when he was awake he was much more alert than he has been in the last few days.  Before we went off the Sabril, he was lethargic. He just laid there and stared.  Now he is once again looking around with bright eyes.

He has had a LOT of seizures today, though.  The number of ticks was well above anything he's had before.  Please pray that tomorrow is a better day, that his seizures are much lower!

The physical therapists came out today, and we had a very productive session.  Levi was awake and cooperative the whole time.  Since Patrick is on days again (Thank You, Lord!) we were able to go to church tonight.  It was wonderful!  Afterwards Pastor Laura cuddled Levi and prayed healing over him.  She has a very strong belief in the Lord's healing, and she's taught on it on several occasions.

It's been a long day, so I'll end here for now.  Thank you all again for your prayers, please keep them coming.  We pray special blessings on all of you as well!

Seizure Diary - Spasms 99 in 21 episodes; Ticks - 23

So Long, Sabril!

Our doctor called today.  She and her boss agree that the Sabril should be stopped.  I cannot describe how relieved I was to hear those words!  I felt that it needed to be discontinued, but it really put my mind at ease to know that the doctors agree with me.  So the plan is to continue the Clonazepam twice a day, which helps him sleep, but does not cause him to be dazed and "drugged".  He's taken this medicine before as needed, so he's used to it.  We will also increase the Phenobarbital from 7mls once a day to 8mls this week, and 9 next week.  This will be temporary until we decide upon a new plan of action.  We have a neurology appointment on August 15, and will be meeting with an epilepsy expert.  He will go over Levi's medication, and I imagine he will come up with a new game plan.  It's only been one week since we started Sabril, and I was so excited that this might take away his seizures.  Now I'm excited to be off of it!!  We just have to find the right medication, or combination of medicine, that will work for Levi.  Please pray with us that God sheds light on the situation and we will find the correct medicine very soon!

We had a meeting today to add vision therapy, which went very well.  Our OT Diane was able to work with Levi and, ironically, he was more alert for her today than he has ever been.  The little trooper was awake a lot today, although he still looked dazed.  Poor little guy.  Tomorrow should be better for him.

Thank you all for your continued prayers.  Our little Levi is such a blessing to us!

Seizure Diary - Spasms - 82 in 21 episodes; Ticks - 13

Sabril Making Seizures Worse?

Have you ever had one of those days when everything you touch turns to chaos?  When you put one thing away in the cabinet, and five things fall out?  When you try to pour one small glass of soda, and the entire contents of the bottle somehow ends up all over your kitchen floor?  Yep, that about sums up my day.  One step forward, two steps back.  Have I been more positive today?  No!  I have been counting seizures, over-analyzing every move Levi makes, and driving myself crazy wondering what to do about Sabril.  I have been tired, sad, weary, exhausted, and frustrated.  I have had a headache and body aches that won't go away no matter how much caffeine I drink.  I have completely stressed myself out.  But tomorrow will be a better day.  I know this because 1) I'm choosing to change my attitude, and 2) I've made a decision about Sabril.  I really wanted this to be our wonder drug, but it seems to be making everything worse.  Levi ended up with 91 spasms today.  That's more than he had before he started Sabril.  So, I've decided to speak with the doctor tomorrow and ask her if there is any likelihood of Sabril becoming successful, given the way it's affected Levi so far.  If the chances are slim to none, we plan to stop it and discuss a different medicine.  I just don't know what else to do.

Levi was pretty much the same today as he was yesterday.  I had to wake him up at 8:30 to have breakfast and take his medicine.  Like me, he doesn't like to eat as soon as he wakes up.  He was sleepy, not yet hungry, and having so many seizures that it took me an hour to get everything down him.  That was a first, and I hope not to repeat it!  He was awake longer than I expected, but he has that dazed look on his face.  He actually looks feverish....glassy eyes, limp body, slow moving.  He just looks miserable.  It's heartbreaking to see him like that, especially when he just really perked up last month when the neurosurgeon adjusted his shunt setting.  I'm really looking forward to speaking with the doctor tomorrow.  I'm interested to hear her opinion.

Tomorrow we have a meeting with all the therapists and case manager to add vision therapy.  Becky will then begin visiting twice a month.  Diane, the OT, will try to get some therapy in with Levi during the meeting since I had to cancel last week.  I hope he's awake enough to cooperate.  But even if not, stretching and weight bearing exercises can be done while he's sleeping, and will be beneficial to him.

Seizure Diary - Spasms 91 in 20 episodes; Ticks - 10