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

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

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

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

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

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!

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

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