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!

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!

Happy Father's Day to Levi's Daddy!

Happy Father's Day, Daddy!!  Love, Levi

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! 

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!!

Ketogenic Chef

The last few weeks have definitely been a roller coaster.  Some days Levi eats well, some days he doesn't.  The seizures have climbed back up to pre-diet numbers, but yesterday and so far today have not been so bad.  He was really hating the Gerber turkey and beef, so the dietitian gave me access to the ketocalculator, which is a program loaded with ketogenic-friendly ingredients and recipes that automatically calculates the ratio and calories.  What a relief!  I've developed several meals that I think he will enjoy, and just spent the entire morning cooking keto meals for him.  I picked up a Baby Bullet pureeing system because he still can't eat foods that are too chunky.  That thing works wonderfully!  I made a chicken and veggie soup and the Baby Bullet ground it right up into a small textured meal that he can handle.  I also made him a chicken stir fry meal and refried beans mixed with cheddar cheese, with a whipped cream and jello parfait.  He hasn't eaten any of it, so I have yet to see how he likes it, but I have high hopes.

Levi loves the pool!  He kicks his legs and grins each time we take him out.  Memorial Day we had a terrific time with family.  Patrick barbecued and we had lots of yummy side dishes and poolside fun.

Now that we're three weeks into the diet and I have the control of designing meals for him, it finally feels like we are getting more comfortable with it.  We will be gone all day Saturday, which will be a true test.  We'll have to pack meals for him and fit that into our day.  I'm a bit nervous but I'm sure it will go well.  Here are some of the meals I made today.

Ketogenic Chicken Soup

Pureed Chicken Soup

Adorable Baby Bullet container

So Far So Good

Levi is still doing well on the diet.  He doesn't seem to like the food, but he does tolerate it and is eating everything at each meal now.  The seizures have gone up some, but are still slightly less than when we started the diet.  He is still so much more alert than he used to be, and happy!  He smiles all the time.  His head control has grown by leaps and bounds!  He gives us kissed, moves his arms and kicks his legs, plays and looks at the toys on his gym, successfully gets his hand to his mouth to chew or suck on, and more!  We have noticed that he is maneuvering the trunk of the elephant on his gym into his mouth.  It's too cute!  Although he doesn't yet grasp toys, he does touch them repeatedly.  We have been on the ketogenic diet for only two weeks, and I'm amazed at the strides he's making developmentally.  I'm excited to see where he'll go from here!

Ketogenic Diet Update

Sorry I haven't updated sooner, I have been busy!  We were able to go home on Wednesday, which was day 3, as planned.  Levi's blood sugar remained stable the entire time, his ketones were steady, and all was good.  I've been busy making formula and meal recipes, which are very simple since he's still so little.  Thursday night he was running a fever of 101.1 and just as I was about to feed him he threw up.  I didn't know if he had caught a virus, if the many seizures were causing the fever, if he just gagged on the medicine/water combo, or what was going on.  I stayed up with him most of the night to be sure he was alright.  The next morning he was bright eyed and chipper and has not had any issues since.

When we left the hospital his daily meal plan consisted of four meals: a 5 ounce ketocal bottle twice a day, scrambled eggs/applesauce/heavy cream for breakfast, and Gerber turkey/canned green beans/heavy cream for dinner.  He has let us know in no uncertain terms that he does not like scrambled eggs, so we replaced it with Gerber beef, and he didn't like the texture of canned green beans, so he now has Gerber green beans.  I think that will work out better.

I have to say the actual diet is very much easier than I had anticipated.  I just weigh out everything and feed him.  The extremely difficult part is getting him to eat it.  Most kiddos are hungry and want to eat.  Not Levi.  He is better since we've decreased Topamax so much (4 pills a day down from 12!) but he's just not as hungry as I would like him to be.  When he wants to eat he does a great job, but when he doesn't want to it's all I can do to get the food down him.  Talk about stressful!  BUT we are only on day 6 and we've already seen a huge difference in many areas: he's so much more alert, his eyes are wide open and bright, he doesn't have much of the rapid eye movement anymore, he's more active, kicking his legs and moving his arms.  Whatever we have to go through is worth it to see the positive changes we've seen so far.  The seizures are lessening as well, in duration as well as in number.

So please keep Levi in your prayers!  Things are going very well, but he still has a ways to go to reach seizure freedom.

Ketogenic Diet Day Two

The day started well today.  Levi slept comfy all night, and I was so tired I actually slept good as well.  The morning bottle went down fine; we changed his clothes and headed out onto the playground for some sunshine and fresh air.  Levi loved it!  We relaxed on a bench and after a while he fell asleep.  When we came back to his room he slept for 2 hours.  Poor little guy was all tuckered out.  The dietitian came to see us shortly after we returned.  This meeting was very clarifying for me!  I thought Levi's meal plan of four meals a day included four bottles and 2 solid food meals.  I was wrong.  He does not get a bottle of ketocal with the solid food.  Suddenly everything made sense!  I swear I could feel the tension in my shoulders begin to melt away.  So the plan is for Levi to have a breakfast of scrambled eggs, applesauce, and cream at 8, ketocal bottle at noon, dinner of Gerber turkey, real green beans, and cream at 4, and a ketocal bottle at 8, supplementing with flavored water in between.  I like this plan very much for a few reasons: 1) He takes solid food better than liquid right now, and I don't have to spend all day trying to force feed him formula; 2) He used to get supper at 6ish, which made it difficult to go out during the evening.  Now we will be free to actually take him out if the mood so strikes; 3) The meds will be much easier to give than they were before.

Every morning and evening I used to measure out several liquid medications, putting them in an ounce or two of formula, fix his bottle, fix solid food, and proceed to feed him as much as possible.  Most often he took the meds no problem, but there were times that he was super stubborn and it would take a long time.  Now we will be giving 2 of his meds on a spoonful of sugarfree jello, and the rest will be dissolved into 2 mls or so of water and given by syringe.  Of course he doesn't like the taste, but he takes it like a champ, and it's all so much EASIER!  All this time I thought the diet would be so difficult to administer, but I'm finding that it will make my life better.  I like that!

The seizures have been very high.  Yesterday the count was around 178, and today 193.  This is not a sign that the diet will not work.  Many children go through this in the beginning because of all the changes going on at once.

Today he did a wonderful job of eating his very first ketogenic meal.  The bottle at 8 was again the most difficult, but he managed to only leave a little under an ounce this time.  His blood sugar has held steady in the 80s to low 90s which is terrific.  Thank God for that!  The urine check this afternoon revealed his has attained a state of ketosis!  Everything is going very well.  We should be home tomorrow!

Below are a couple pics of Levi in the swing at the playground.

Ketogenic Diet Day One

We arrived at the hospital at 8 am and went through the usual admitting.  We got Levi settled into a room, and were thrilled that he didn't need to be hooked up to monitors.  That meant we could take him to the cafeteria to eat with us, or go for walks, or what have you.  Definitely nice to have other options besides being stuck in one room!  I met with the dietitian, Jamie, and went over the meal plan.  Levi was to drink 3 five ounce bottles of ketocal today, with no solid food.  I learned how to test his urine with keto strips.  They took his blood sugar level to get a baseline, which was a finger stick, but he barely whimpered.  Such a good boy!  We met with the neurology team and discussed medications.  Since sugars are strictly limited on the diet, we had to switch four of his six meds to pill form, and in some cases the dosages had to be changed slightly.

Levi had his first bottle of ketocal at noon.  I have to admit I was nervous.  First, he doesn't typically eat much at lunchtime, and I didn't know how he would respond to a new formula.  He did amazing!  Either he liked it better than Nutren Jr, or he didn't really notice a difference.  He got through his usual three ounces and started to stall out.  He was making sucking motions but not drinking.  Remembering the early days when he was a newborn and the OT had to use a lot of chin and cheek support, I squeezed his little cheeks slightly, and lo and behold, he was drinking again!  What a relief!  He finished every drop of that bottle, and the four o clock bottle.  The eight o clock bottle was a completely different story.  The meds started trickling in from the pharmacy (once we got them all straightened out), but of course they were pills, and we had no food to sprinkle them on.  SO the nurses put them in a bit of water and squirted them in his mouth with a syringe.  I have to say, he did better than I would have!  Except for gagging once, he took all of them.  However, he just couldn't make it all the way through the eight o clock bottle.  He has never liked taking food late in the evening, and he was getting tired.  He did drink half of it.  By the time 10:00 rolled around we were both exhausted.  So I will speak with Jamie in the morning and see what she wants to do about it.  My guess is we will leave the meal plan as it is and see how he does tomorrow night.  Maybe he just has to get used to it.