Fasting Day Two

Levi was awake and alert all day yesterday, except for a small morning nap.  His head and trunk control continued to be excellent, and he seemed very interested in looking at the toys dangling over his chair. The seizures were still very short in duration.  For the third night in a row, he cried for his supper!  He was a bit fussy while he ate, but by that time I think he was exhausted!  He ate just about everything.  Then he had a warm bath and cuddled in Daddy's lap, where he drifted off to sleep.  He had no teething pain, and again no seizures after supper!  He slept until we were ready for bed, but woke up when I put him in the crib.  He was content to lay there, went back to sleep on his own, and slept all night long.  It really was a wonderful day!

Having fun bouncing on Aunt Mishy's lap.

Watching his fishies.

All dressed up :)

Fast Day One

The first day of the fast brought some wonderful blessings!  Last night, Levi cried for his supper for the second night in a row!  This is huge because Levi has not really been hungry since May when he started taking Topamax.  He ate his entire meal, and every drop of his bottle!  This is probably the first time he's ever done that at dinnertime.  His head and trunk control have been awesome as well.  I picked him up from his crib this morning and he had excellent control, there was not a sign of floppiness!  The number of seizures was still in the same range, but they are very light and quick, and we didn't see any after he ate supper last night!  Thank you, Lord, for healing him!  My prayer is that we are walking out the final stages and he will be seizure free very soon!


Mar 11:22  Jesus said to them, "Have faith in God! Truly I tell you, if anyone says to this mountain, 'Be lifted up and thrown into the sea,' if he doesn't doubt in his heart but believes that what he says will happen, it will be done for him. That is why I tell you, whatever you ask for in prayer, believe that you have received it and it will be yours. 

Fasting and Praying for Seizure Freedom!

I've been feeling the need for another fast.  Last May was a difficult month.  We were at Cardinal Glennon frequently, receiving new diagnosis like Infantile Spasms and Hip Dysplasia. On June 1 we began a fast, and that very day we received our first piece of good news.  It only got better from there.  I know that God honors fasting.

This coming Saturday marks Levi's next med change (increase Clobazam, decrease Phenobarbital), so I thought it appropriate to begin fasting today through Friday and praying for seizure freedom.  I looked back at the seizure log, and it seems the seizure count was around 30-50 a day, give or take, before starting Clobazam, and they have remained there until present.  So although we have not seen a lessening, at least we have not seen an increase.  Clobazam is supposed to be very effective at treating both types of seizures that Levi suffers from, and I'm praying and believing that the Lord will use this to heal him completely!  We still have 2 increases before we reach the goal dose.

Beginning today until Friday, I will be fasting meat.  I ask that, if God puts it on your heart, to join me in fasting and praying this week.  Fasting can be from one thing or many things, and does not have to be food.  Some examples: coffee, chocolate, facebook, video games...anything that is difficult to give up.  Even if you decide not to fast, please join us in praying for complete seizure freedom. When we all come together in prayer, the Lord is in our midst! (Matthew 18:20 - For where two or three come together in my name, there am I with them.")

Thank you so much for your thoughts and prayers for Levi!  Every one is greatly appreciated, and we will be praying special blessings on anyone who says even the smallest prayer for our baby!  God Bless!

And....We're Back to Formula

So the switch to regular milk did not go as smoothly as planned.  After Levi had a bottle of only milk, he had a super bad night.  He was teething, but it was so extreme I thought maybe his tummy was bothering him, too, so we went back to half formula, half milk, and rice cereal in every bottle.  Over the past 2 to 3 days he has been drinking less and less.  He would start to drink, then make "icky face" and stop drinking.  I couldn't get him to take more than 2 ounces at lunch today.  I thought maybe he had a sore throat, but he's been eating solid food very well.  The nightly teething has been worse each night as well.  So for dinner I made just formula and rice cereal.  No icky face!  No problem drinking!  He downed almost the whole bottle!  So, we will continue with formula for a while before trying milk again.  I'm glad it was such a simple fix!

Many Changes

Levi has tolerated the change from formula to milk very well.  We began by adding 1/2 ounce of milk to his formula, and increased from there.  Today at lunch he had his first bottle of only milk, with rice cereal, and did very well, so he had all milk at dinner as well.  So far so good!  In a week or so I will begin weaning the rice cereal from his bottles.  It will be very nice to be able to buy regular nipples, rather than the Y cut silicone nipples that stretched out so fast, or cutting bigger holes in regular nipples.

On Saturday night we increased Clobazam from 5 mg to 7.5 mg, and decreased Phenobarbital from 7 ml down to 6.  That first night he was already totally wiped out by the time he finished eating, and took a long nap, which of course ended when I was ready to go to bed. lol  He's taking long morning naps again, but this afternoon he was very bright eyed and smiley.  Pretty floppy, but definitely happy and alert!  It takes a few days for his body to get used to the new dosage.

Last Friday our PT brought a gait trainer, which is an adaptive walker.  Patrick calls it his Mustang.  I've been excited about this because Levi is doing very well walking with me.  His legs are ready to learn, but his upper body is still pretty floppy.  He likes the gait trainer!  We have it set to lean forward a bit.  He is standing up and leaning over a large tray, which we put toys or swirly mats for vision therapy.  The most amazing thing is that it's really helping his head control.  Instead of letting his head loll forward, he is picking it up and looking around!

That brings us up to date on all the changes going on right now.  I'm excited to see how the seizures and his alertness are affected by this latest med change, and the things he will learn from the gait trainer.  Please continue to keep him in your prayers!

Today Levi had his 12 month checkup.  He's a bit behind because he was sick during his original well checkup, so we had to use it for a sick visit.  He was in a good mood today!  The nurse kept commenting on how happy he was.  We got to chat with my dear friend Pam for a while, which was wonderful.  Since he spiked such a high fever with some seizure activity on the last round of shots, the neurologist wants him to have only 1-2 at a time, and I feel much more comfortable with only 1, so he had the MMR (measles, mumps, rubella).  He fussed only a little bit.  The nurse was hugely impressed. Then the poor little guy had to have some blood drawn.  Again, only slight fussing.  He got his very first sticker for being a good boy at the doctor's office!  A big picture of (who else??) Lightning McQueen!  Way to go, Levi!

The pediatrician says he can switch from formula to regular milk, as long as the GI doctor doesn't have any reservations about it.  She is checking his electrolytes and nutrition because she's concerned about slow weight gain.  I'm not too concerned.  Miranda was always a tiny little thing.  Also, Levi is on so much medication it's a wonder he eats as well as he does!  So we will also be checking with the GI doctor about what types of food would be best for him nutritionally, that will help him gain weight.

A few days ago Levi had his very first milk and cookies.  I soaked vanilla wafers in a bowl of milk and chopped it up like cereal.  He wasn't too fond of it.  I'm not sure if it was the cold temperature, the taste of the milk, or all of the above.  The pictures below are of this experience.

The seizures remain about the same.  Some days are light, some are heavy.  One day he didn't have any seizures until two hours after he woke up.  That was a first!  He is still sleepy, but doesn't sleep as much through the day, and is definitely more alert in the afternoon.  Saturday we will increase Clobazam and decrease Phenobarbital again.  Hopefully we will see very positive results!!

A Great Few Days!

Since the new med changes, the number of daily seizures had gone up 10 to 20 a day, bringing the total to 40-60 a day.  I tried not to let discouragement set in, knowing as I do that any med change can mess up the system for a while.  Even still, it was hard to see him go through extra seizures.  He didn't seem bothered by them, though!  He has been very content lately.  Certainly he's drowsy throughout the day, but instead of sleeping a lot, he has begun taking a long morning nap, and maybe a catnap or two in the afternoon.  Since the third tooth popped through (he has one on the bottom and the two top front teeth now) he hasn't had much teething pain.  He smiles more, makes funny faces and is showing more expression, and is more inclined to work on therapy he previously hated (such as laying on his belly and resting on his elbows).

Before the med change Levi would have seizures sprinkled throughout the day and then a large amount in the evening around dinnertime.  That made sense, considering he was due evening meds at that time.  When we decreased Phenobarb, he began having a large amount of seizures in the morning, and they would taper off through the day, which didn't make sense to me, but oftentimes in this crazy world of seizures, things just don't make sense, so I shrugged it off.

Well, the seizures have dipped this weekend! We were busy Saturday so don't have an actual count, but we all noticed a huge difference.  Yesterday the count was down around 25 for the day! This morning so far he has had only 3!  Praise GOD!  We are finally headed in the right direction, and I'm thrilled!  Thank you for all the prayer!  Let's watch God work!

Neurology Appointment...New Med Plan

We had a neurology appointment today and were pleased to see Dr. Aldohondo, the very first neurologist who saw Levi last year when we were rushed to the ER.  He was definitely at the top of our list of favorites.  He will be filling in for Dr. Chrusciel while she is out on maternity leave :)   Since starting Clobazam a little over a week ago, we haven't seen much difference in the seizure activity.  He is still having 30-40 a day, give or take.  It does seem to be lower today, but we spent most of the afternoon at the hospital, so I don't have a good count.  We saw Dr. Gibbons, the epilepsy expert.  He likes to set long term goals, and so scheduled a new med plan, which I'm very excited about.  He said at this point we don't really know what is keeping Levi from progressing, the seizures or the meds.  I certainly agree with that point!  So we are on a schedule to both increase Clobazam and decrease Phenobarbital every three weeks through Easter, unless there is a reason to stop (ie no more seizures or extra seizures, etc).  We were able to decrease the Phenobarb by 1ml tonight.  This is a long time coming.  We've been wanting to bring that down for a while now.  We have brought Topamax down to a level that we know is effectively helping the seizures, and are looking forward to doing the same with Phenobarb.  It is my hope that we can eventually wean him completely off.  It is the most sedating of the meds he takes.  It will still be several days before we may notice any difference in his behavior after decreasing Phenobarb because it remains in the system for a while, but I'm so much looking forward to a more alert baby!  I believe this will further his head control as well!

Currently Levi is taking: Phenobarbital 7mls once a day; Clobazam 5 mg once a day; Topamax 60 mg twice a day; Lamictal 4 mls in the am and 5 mls in the pm; Keppra 1.5 mls twice a day; and Nexium 10 mg twice a day.

Please keep Levi in your prayers, that we find a good med combination to both take away the seizures and allow him to be a more alert, happy little guy.  Also please pray for Dr. Chrusciel and her baby, for a safe delivery and a healthy baby!  Thank you :)

Second Day Clobazam/Second Tooth!

Levi just took his third pill of Clobazam.  Yesterday the partial seizures were way down, spasms remained about the same, and today both types of seizures were about the same.  I'm sure it will take a little while for the new med to make a difference, and for his body to get used to the change in medication.  Looking forward to watching those seizures wind away to nothing!

We noticed Levi's second tooth today!  It's a top center tooth, directly above his first tooth.  It's just barely through, but so darn cute!  

Starting Clobazam (Onfi) Tonight!

Praise God!  Clobazam is finally here!  The reason I'm so excited about starting this new med is that it's in the same family as Clonazepam, which Levi has been taking for months.  Clonazepam works well on the seizures, but it has a side effect of extreme sleepiness.  In fact, it was originally prescribed when Levi had daily screaming fits that lasted hours, so that he (and we!) could get some sleep.  Since it worked so well at bringing the number of seizures down, we tried increasing the dose, but each time we tried he became almost lethargic.  Now the new medicine Clobezam will hopefully work just as well, if not better, on the seizures, but does not have the side effect of extreme sleepiness.  We are praying that this is the medicine to finally stop the seizures!  Our neurologist said they have had children achieve complete seizure freedom and come off all other anti-epileptic meds with Clobezam.  We are believing this for Levi!  My friend Shannon's son Easton will also be starting Clobezam shortly.  He has different types of seizures, but like Levi, he has many each day.  We are believing that this will be the med to stop his seizures for good as well!

Our prayer for Levi and Easton:
Dear Lord, we lift Levi and Easton up to you and ask that, through Clobezam, you heal the boys of this devastating affliction.  The seizures have been going on for months, and we have tried everything we can think of to free them, so far to no avail.  Please touch them, Lord.  I know you still work miracles, I have watched you work.  Levi would not even be here today without your healing touch! We long to see our boys progress to meet developmental milestones that they are overdue for.  We are tired of counting seizures, weary of the weight of constant indecision and wondering what it is we can do to make this all go away.  But it is not in our control.  It's in your control.  Help us lean on you and allow you to lead us down the path according to your plan.  I am asking, and I BELIEVE and RECEIVE, complete seizure freedom for Levi and Easton.  That Clobezam is the medicine to take away the seizures, and indeed even take away all the other anti-convulsants they are currently taking.  I believe in you!  I ask all this through Jesus' precious name!  Amen!

Mr. Easton