Monday, August 29, 2011

Nice Weekend

We had a super busy but fun weekend.  Sunday morning we had the baby dedication at church.  I'll post the video on here later.  It was very nice, quite a few babies were dedicated.  Then we had a wonderful lunch with family and friends to celebrate, then on to a quarter auction to benefit ALS, and finally to our bowling league, where we learned we were in first place (yay!) and won all our games and maintained that status.  Today Levi and I walked in the park with Miranda.  It was a gorgeous morning!  I was able to get some stuff done while Levi took an amazing 4 hour nap, and we've had a pleasant evening.  The seizures haven't been too bad.  This morning he had very few, but this afternoon and evening he made up for it.  I still think we are on the right track with Banzel.  He is on half a pill twice a day, and we are due to increase to one pill in the evening tomorrow.  Next week he will increase to one pill twice a day, and that is our goal dose.  Please pray with us that Banzel completely takes away both types of seizures!  Thanks for all your prayers!  Hope your weekend was wonderful as well!

Seizure Diary:

Sunday: Spasms - 43 in 25 episodes; Partial - 31

Monday: Spasms - 33 in 20 episodes; Partial - 24

Saturday, August 27, 2011

Less Seizures Today!

Today was another very good day!  Levi woke up this morning with bright eyes and smiles for everyone.  He's such a little darling in the morning.  It's so funny, when he wakes up he clicks his tongue.  It's really loud and too cute.  We had breakfast and did a little shopping.  He was too busy checking everything out to nap much, just a few catnaps here and there when his eyelids were too heavy to hold open.  So I expected an evening meltdown, which did come but wasn't too bad.

We set up his playpen and put him in it for the first time this morning.  He really seemed to like it!  I noticed halfway through the afternoon that his seizure count was pretty low, and he ended up with a low count for the whole day!  I'm ready to see those numbers keep dropping until they are GONE!

Tomorrow is the baby dedication at church.  He has a sweet little suit to wear that Moga bought him for Easter, but he was unable to wear because we were in the hospital.  I didn't think it would fit, but I tried it on and, although snug, he will be able to wear it!  I'll post pics of the handsome little guy.  Thank you for all your continued prayer that the seizures will go away!

Seizure Diary: Spasms - 32 in 19 episodes; Partial - 15

Friday, August 26, 2011

A Good Day!

Levi was such a good little guy today!  After breakfast (he really seems to like banana raspberry oatmeal) we went for a walk in the park.  He absolutely loves riding in the stroller and checking everything out for a few minutes before he falls asleep.  I put him into a more upright sitting position today, which he seemed to like, and he did pretty well holding himself in the center.  Our next stop was the grocery store.  He was quiet but very alert.  It's so wonderful to see his bright eyes taking everything in!  He seems to be seeing more than before as well.  His head control continues to get better!  We are definitely on the right track!

Seizure Diary: Spasms - 42 in 24 episodes; Partial - 34

Thursday, August 25, 2011

Lots of Smiles

This morning we had a nice breakfast with Moga (my mom).  It was nice to get out of the house and just visit a little bit.  Levi was lounging in his bean bag when Moga came in, and he started moving his arms and legs.  I think he was excited to see her!  He's never done this before, so I was as excited as Levi!  He's been super smiley the last couple days.  He used to only smile when bounced and, strangely, sometimes with a spasm.  But now he smiles a lot.  I do believe it's the decrease in Keppra.  I spoke with the neurologist today because Levi has had a lot of seizures the last couple days, and I assume it's the fact that we are decreasing Keppra and still on a very low dose of Banzel, but I wanted her to be aware of it.  She said we could return to 2 mls of Keppra, or wait and see how he does when he gets to a higher dose of Banzel.  We decided to wait.  We've seen so much progress in the last week and a half since the first decrease that we don't want to risk regression.  Then today, praise the Lord, he didn't have quite as many seizures!  One thing I find interesting is that the spasms and partial (or focal) seizures are almost equal.  The spasms used to highly outnumber the partial.  I don't know if it means anything, but I'm sure glad to see the spasms going down again!  Please keep the prayers coming!

Seizure Diary:

Wednesday: Spasms - 50 in 32 episodes; Partial - 47

Thursday: Spasms - 34 in 26 episodes; Partial - 30

Tuesday, August 23, 2011

Making Progress

Today we decreased Keppra again.  We were at 2 mls twice a day and now are down to 1.5 mls twice a day.  Last week we saw some better head control, a bit more arm movement, and he was more alert.  This morning Levi had a huge meltdown when I put him in the stander, and although I took him out after a few minutes, he proceeded to cry for almost an hour.  I'm sure his teeth were bothering him.  He was biting down hard, and once the Tylenol kicked in he finally fell asleep.  I was pretty sure he wouldn't do anything in therapy, but I was wrong!  He woke up when Mary came in and cooperated with her very well.  She gave him a piece of gold crinkly paper to play with.  He held it with his left hand and actually brought his right hand over to it and felt it!  Not just once, but a few times.  I was so amazed I almost had a meltdown of my own.  I'm really looking forward to more progress as we continue to come down off Keppra.  Unfortunately, the partial seizures seem to be on the rise, but hopefully once we get to a good dosage of Banzel they will go away!  He is on half a pill once a day right now, and tomorrow we will go up to twice a day.  I'm praying we will begin to notice less seizure activity!

Seizure Diary:

Saturday: Spasms - 38 in 29 episodes; Ticks - 1; Stiffs - 6; Both - 26

Sunday: Spasms - 41 in 22 episodes; Ticks - 5; Stiffs - 4; Both - 22

Monday: Spasms - 48 in 22 episodes; Ticks - 2; Stiffs - 0; Both - 41

Tuesday: Spasms - 43 in 24 episodes; Partial - 26

Friday, August 19, 2011

Levi's First Haircut

I know, I know, no one wanted those curls cut off, but he was becoming a cross between Buckwheat and Rapunzel, so it just had to be done.  Moga came over and tried to cut them off, but they decided to stick around!  So for all of you who begged me not to cut them, you will be glad to know that, although much shorter, the curls remain intact.  He was amazingly good the whole time, and let Moga snip away as much as she wanted.  I'm loving his new do, it's soo adorable!

He's had a pretty good day.  He slept in his crib for the first time in almost three months!  Which means, of course, that I was able to sleep in my lovely memory foam bed for the first time in almost three months! lol  I definitely felt better for it this morning, and he must have, too.  He woke up with smiles and let out this darling "gummy" grin.  What a way to start the day!  He had a couple cranky episodes, I'm sure due to his teeth, and was much more awake and alert.  I love seeing that sparkle in his eye!  He's standing very well, too.  Any time we pick him up (when he's not in his brace) he sticks those legs out and wants to stand on them.  He plants his feet flat on the floor, not tippy-toed like a lot of babies, and straightens out his legs.  It's so adorable, and so on target developmentally that I'm amazed.  This kid is awesome!  His head control is getting better as well.

We are looking forward to a fun weekend.  Hope you all have the same!

Seizure Diary: Spasms - 23 in 11 episodes; Ticks - 0; Stiffs - 0; Both - 23

Before Pics

First Haircut!  So Handsome!

Thursday, August 18, 2011

First Dose of Banzel (Rufinamide)

We had a hold up with the insurance, so it took us a few days to get the Banzel, but we picked it up and gave him the first dose late this afternoon.  It's in pill form, so we crushed it up and put it on top of his baby food.  He's used to taking Topamax like that, so it went off without a hitch!  He turned cranky about half an hour after he had it, which was quite a bit earlier than his normal crying spells.  The first day on Sabril he was extra clingy.  I think it's just the first day on a new drug makes him feel different and he doesn't understand.  Hopefully tomorrow his crankiness will be gone!  Please pray with us that this new med will STOP both types of seizures quickly!  The least amount of meds he's on the better.

We had a fun day spent in Edwardsville today.  We had lunch with a friend of Patrick's, and this evening went to a concert at the amphitheater on the riverfront, featuring a Journey tribute band and a Bon Jovi tribute band.  They were both pretty good.  I liked the Journey band the best.  It was warm, but we had a cool breeze, and it was definitely nice to relax outside.  Levi liked most of the music and of course he loves to be outside!  He's snoozing in Daddy's arms now, all fresh, clean and ready for bed :)

His seizures have still been down today.  They have been consistently low since last Monday.  The Banzel doesn't have too far to go to take them completely away, so hopefully that will happen very soon, on a low dose of medicine.  I will keep everyone posted.  Have a wonderful weekend!

Seizure Diary:

Tuesday: Spasms - 43 in 14 episodes; Ticks - 0; Stiffs - 1; Both - 25\

Wednesday: Spasms - 34 in 12 episodes; Ticks - 1; Stiffs - 0; Both - 23

Thursday: Spasms - 24 in 12 episodes; Ticks - 0; Stiffs - 0; Both - 24

Looking cute before church last week

Levi and Mom at the concert

Monday, August 15, 2011

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!

Sunday, August 14, 2011

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:

Friday, August 12, 2011

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.

Thursday, August 11, 2011

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!

Monday, August 8, 2011

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 :)

Friday, August 5, 2011

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

Wednesday, August 3, 2011

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

Tuesday, August 2, 2011

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

Monday, August 1, 2011

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