Monday, January 30, 2012

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!

Monday, January 23, 2012

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 :)

Saturday, January 14, 2012

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!  

Thursday, January 12, 2012

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

Pray for Japeth!

My dear friend Shannon's son Japeth is currently in the hospital for pneumonia.  Please pray for his quick and complete healing and recovery!  Let's all send up prayer so the poor boy feels better fast!  Thanks so much!!

One Year Ago Today...Levi Woke Up from Coma!

First of all I'd like to say Happy Birthday to my wonderful mom!  She received the most precious gift last year when Levi opened his eyes for the first time after being brought out of a coma.  It's amazing to think that it's been a year.  So much has happened in that short (although sometimes it felt so long!) time.  Here is an excerpt from the blog on that day, and the picture of his gorgeous brown eyes.

He's Awake!!!

Well, not that we have seen it, lol, but our wonderful nurse Marie told us that during his bath last night Levi was finally able to heft up his puffy little eyelids.  He's retaining so much water he's earned the nicknames of Stay Puff Boy and Michelin Man. He's been on a diuretic and is finally starting to lose some of his puffiness.  Most or all of the antibiotics and seizure meds have been changed from IV to oral, which means we have gone from a huge tree of medicine pumps down to one or two leaves.  We are hoping that his breathing tube and arterial line come out very soon (like today!) so that we can hold him and snuggle him again.   Thanks to all for your past and continued prayer!

Monday, January 9, 2012

Endoscopy Went Well!

Levi was a little trooper today, as always.  His surgery was scheduled at 11, but they were running behind and didn't take him in until almost 1:00. I wasn't upset since that rarely happens at Cardinal Glennon.  It was a quick procedure.  The doctor showed us pictures of his esophagus, stomach, and intestines and took biopsies of each.  He said everything looked great!  The test results will be in in about two weeks.  Levi was a bit cranky when he woke up, but after a quick nap he gulped down a good amount of apple juice and, unlike most babies just out of anesthesia, popped his head up and looked around and stayed awake the whole ride home.  THEN he decided to be cranky.  Once he'd eaten a good meal and had a warm bath he returned to his normal calm self.  He's cuddling on Daddy's lap now.  Thank you for your prayers!    

Sunday, January 8, 2012

Endoscope Tomorrow

Well, tomorrow is the endoscope.  The cold is just about over, the congestion much improved, so I don't think it will pose a problem.  The GI doctor will be putting a camera down Levi's throat to check his esophagus, stomach, and intestines.  His vocal cords were red and swollen last month at the ENT appointment, so I'm curious to see if there's been any difference.  We've been giving Levi Nexium an hour before meals instead of with a meal in the hopes that this is what was causing the return of acid reflux, but it doesn't seem to have made a difference.  He still swallows and spits up if he lays flat on his back.  We would just really like some answers.  His poor little nose is red from the suctioning we have to do several times a day.  Please pray that this gives us some answers, and that the problem is simple to fix.  Levi has already been through so much!  I'm hoping we can wrap up the remaining issues (seizures, congestion, acid reflux) soon, so we can enjoy a year without so much struggle.

After church today we went out to lunch and put Levi in a regular high chair with our jackets around him to give him some stability.  He sat in it through the majority of the meal, holding his head up and being a big boy! Of course we had to take a pic to commemorate the occasion!  Way to go, Levi!!

Saturday, January 7, 2012

More Rolling Over

Levi is learning, learning, learning!  The other day he was laying on the floor looking at his light box (for vision therapy) and he rolled from his back to his side, and continued onto his stomach!  This is the first time he's rolled completely from one side to the other. Previously he has been able to roll from side to back or stomach, but this time he completed the entire roll!  We are so proud of him!  Yesterday he rolled from his back to his side while he was sleeping!  It was so adorable, he was all curled up around his blankie.  It's so encouraging to see him doing so many new things even though he is still on so many medications.  I can't wait to start Clobezam!  We will be at Cardinal Glennon on Monday for the endoscope, and hopefully I'll be able to speak with the neurology department and see when we can expect to begin it.  Levi is getting over his cold, thank the Lord, but still has a runny nose.  At least it's better than a stuffy one!  Please pray that the cold is over by Monday.  If he has a lot of extra congestion we will have to reschedule the surgery.  Also please pray for his safety during and after the procedure, and some answers!  Thank you!

I laid Levi on the bed next to Snickers.  Too cute!

Wednesday, January 4, 2012

Screaming Fit

Levi continues to feel kind of crummy.  He's been congested and sneezing all day long, not real hungry.  He's taken his meds well, and is drinking well, so I'm glad about that.  At suppertime tonight he was super cranky.  Usually when he cries like that it means his teeth are hurting, so I gave him Baby Orajel, and  he chewed on my finger, which typically calms him right down, but not tonight.  Nothing I did made any difference to the poor little guy.  It scared me a little bit, because it's been a long time since he's had screaming fits, which of course was due to acid reflux.  I wonder if his arms are hurting.  He won't let us do anything with them.  We had a Jacuzzi bath and I just let him soak in the warm water and bubbles.  He did calm down and enjoy the bath.  Now he's cuddled in Daddy's lap and content, thank goodness!  We have the endoscopy on Monday.  He definitely needs to get over this cold before then.  We would certainly appreciate prayers sent his way!

Tuesday, January 3, 2012

Another Cold??

Well, Levi has been more congested again, sneezing, and let's just throw a little teething in the mix.  I really hope he's not getting another cold! He certainly needs to be healthy this week. He goes in this coming Monday for the endoscope to check his esophagus, stomach lining, and intestines. We know that he is still having issues with reflux.  Seems like anytime we lay him down flat he starts swallowing, getting fussy, and spitting up.  He spit up quite a bit of phlegm three times today.  Hopefully he will stay healthy, and this procedure will show us what's going on with his acid reflux and constant congestion.

We've not started Clobezam yet, I'm not sure exactly what the process is since it's just been approved in the US.  Hope to have it soon.  Please keep Levi in your prayers.  We are praying for you, too!