Tuesday, June 26, 2012

Diet Change and Sippy Cup Success!

Mr. Levi has once again taken a huge jump on the scale this week.  Last Monday he weighed in at 19.8 pounds, and yesterday was a surprising 20.4 pounds!  Needless to say, his daily calories have been cut slightly from 660 a day to 630.  We are hoping to see the seizures start lessening more with this new diet tweak.

We have begun using a sippy cup with great success!  He only will take the bottle with ketogenic formula and absolutely refuses to take anything else from it, so we were left with using a syringe to get small amounts of water down him, and not coming anywhere close to meeting his daily fluid needs.  Thankfully we found sippy cups that we can hold to his mouth and squeeze slightly and all he has to do is swallow, which he does very well, even with the thinner fluids like water.  What a relief!

He is still doing great on the ketogenic diet and we are looking forward to even better results as time goes on!

Friday, June 22, 2012

Neurology Visit

I know some of you are waiting to hear how the neurology appointment went, and I would have posted sooner but we have been very busy.  On the way home from Cardinal Glennon we were cruising happily along 255 and all of a sudden lost the transmission.  Thankfully we were close to home and able to easily have the car towed while Mom came to pick up Levi and me.  So Patrick had to take off work while we frantically shopped for a new car.  We got a great deal on a nice Dodge Caravan.  I think the last time I owned a van Tommy was Levi's age (17 years ago!)!! 

So on to the neuro appointment:  It was an emotional roller coaster of happy and sad.  Our favorite neurologist, Dr. Chrusciel, is leaving next month and this was our last time seeing her.  She has been with Levi since the beginning when he was in the ICU, and it will definitely be hard to lose her, but it's a wonderful opportunity for her family and we are excited for her!  We were so glad that she was able to see Levi so active and happy.  We spoke about the daily seizures and she said she'd like for us to stop counting seizures.  At first this felt like utter chaos to me.  I've been counting seizures almost every day for the last year.  How will I know what's going on if I don't keep a log?  What on earth will I do with myself if I'm not watching him every moment of every day?  It didn't take long for the initial shock to ease into a feeling of euphoria.  No more seizure counting!!  No more overanalyzing at the end of the day!!  What a relief!  I have to say, it's been wonderful!  When I came home, I picked up the seizure log and stuffed it in a drawer, out of sight, and definitely out of mind. 

So everything looks great.  Both doctors were thrilled to see that Levi has gained nearly two pounds in the last six weeks since he started the ketogenic diet.  He has always been below the growth curve and now, for the first time ever, he is ON the curve!  Go Levi!  He really showed off, it was so cute.  He was holding his head, kicking his legs, and grinning from ear to ear.  He actually learned how to raise his shoulders (from a reclining position) and sit up just that morning, and he was practicing it over and over!  This is something that he used to try to do to no avail, and then completely lost even the desire to try.  Now he not only is trying again, but succeeding!  What a blessing! 

I thought we would be tweaking the diet, but Dr. Arun wants to hold steady and give it time.  I have no issues with that.  As long as he keeps progressing at this rate I'm a happy camper.  The seizure control will come.  Sometimes it just takes a while.  As far as medication goes, we are weaning off everything but Phenobarbital.  We have already begun the Lamictal wean, which will be followed by Keppra and then Clobazam.  This is exciting in and of itself.  The less meds he's on, the more he will gain in alertness and progression.  It will take a while, but by Christmas he will be on only Phenobarb and Nexium. 

When we think of how far Levi has come from that five pound little peanut hooked up to life support and trees of IV medications, we are just so thankful.  God has healed Levi, and he is finally beginning to show all signs of moving toward the milestones he has missed.  This is a wonderful place to be, and we are looking forward with great anticipation to the future.  Thank you all for your continued prayer!

Thursday, June 14, 2012

Excitements and Frustrations

Levi has been on the ketogenic diet for almost six weeks now.  Parts of it are immensely frustrating while others are a light in the dark.  Don't get me wrong, the diet itself is not really difficult.  In fact, it's much much easier than I had anticipated.  The more comfortable I get with calculating and making his meals, the easier it gets.  The early days of weighing and measuring at every meal are over.  I make up a few days worth of meals at a time so I just have to pull them out of the fridge and maybe warm them a little depending on the meal.  His favorite, and mine, right now is peanut butter mixed with whipped cream.  This blessedly small meal meets all the qualifications for fat, protein, carbs, and calories allotted for one meal.  He likes the taste and texture, and I'm just thrilled to have found something he actually wants!  He's not a big eater.  This is one of the most frustrating issues we are having right now. He's never been a big eater, but I was hoping that once he was weaned completely off Topamax his appetite would come back full force.  He took the last pill on Monday, with still no significant difference.  When he wants to eat, it's super easy and he does a great job!  But when he doesn't, it's a battle of wills that I would like to say I win all the time, but I'd be lying! 

I know I mentioned before that he gained a pound within one week and I expected, and hoped, that his daily calories would be reduced because it seems that when he doesn't eat everything, the seizures go down.  Well, this didn't pan out.  The dietitian wanted to wait another week to see if he continued to gain weight, but he's maintained around 19.4 pounds, so the calories remained the same.  I've started documenting on the seizure log when he doesn't eat all his meal.  I should have thought of that a long time ago.  This week the seizures have gone down into the 50s and 60s!  Unfortunately the last two days have been gradually increasing.  Interestingly enough, he has been finishing all his food on those days.  We have a neurology appointment on Wednesday that will hopefully shed some light on the situation and lay out a plan.  I like plans.  Groping in the dark is not fun, but something I've found myself doing much too often of late.

So as you can probably tell, I've been feeling more of the frustration today than excitement. I'm so weary of counting seizures, overanalyzing everything, forcing food, and wondering, wondering, wondering what I can do to make it stop.  I really need to let go and rely on God and wait for His timing.  I know He has a plan and everything will work out as He has ordained and I don't need to worry.  If I know all these things, then why is it still so hard?  Why do I still struggle to take control when I have no control?  In the world of epilepsy, there is no control.  The sooner I learn that the better.  I need to focus on the positive.

On the positive side, Levi is holding his head much better.  He smiles all the time, kicks his legs and moves his arms, swipes at toys, LOOKS at toys, enjoys sitting in the high chair with toys.  All of these are things that he either could not do at all, or with very limited success, just six weeks ago.  When I hold his hands to help him walk across the floor I don't have to nudge his legs, he KNOWS what they are supposed to do!  He can lay on his belly, prop on his elbows, and lift his head to look around.  When I look at him, I no longer see huge sad brown eyes looking back with a blank, dull, and drugged stare.  I see bright eyes smiling back at me!  And then today, I put him in the Bumbo chair, which we have not used in a while, to help him practice holding his head.  He did well!  Of course he would lean to the side or front, but was able to pull back up to center.  At one point he leaned forward so far his face was resting on the tray.  It was everything I could do not to reach over and lift his head for him.  I wanted to give him some time to do it himself, although I didn't think he'd be able to.  Just as I was about to give in, that little head inched up and he brought it all the way up and in the center!!!  I am not ashamed to say I bawled like a baby.  Some moments, like this one, are frozen in time.  This will always be a ray of sunshine in the darkness.  It can only get better from here! 

Sunday, June 3, 2012

Gaining Weight and Prayer Request

As many of you know, Levi has always been small for his age.  I was never too concerned, considering all the time he spent in the hospital, and my daughter Miranda was always tiny as well.  A month before starting the diet his formula was switched to Nutren Jr in the hopes that he would gain some weight.  It helped a little, but Levi was still weighing in the 17 pound range, and had been stuck there for months.  Tomorrow marks 4 weeks since we started the ketogenic diet.  His weight was just under 18 pounds at that time.  We are supposed to weigh him weekly to be sure he is gaining enough, but not too much.  Well, over this past week he has gained 1.4 pounds!  In one week!!  I'm thinking that his calorie allotment will most likely be reduced.  Patrick and I had noticed that it seemed when he didn't eat all his food, or when he threw up, the number of seizures went down.  We discussed a calorie reduction with the dietitian at the time, but it was decided to wait and be sure that he was growing at a healthy pace before making any changes.  I could be wrong, but I'm pretty sure that he's gaining way too fast!  On this diet, the right balance of calories/ratio is very important, and sometimes just a small change can make all the difference.  If you could please pray for a calorie reduction that would be the diet tweak we need to END the seizures, we would be so grateful! Levi has come so far already, I really believe if he were seizure free he would start catching up on the development he's been behind on.  I'm SO ready to see him crawl, walk, run, and LAUGH!!!  Thanks to all our faithful followers and Levi lovers!!