Holy Crap!

So Levi tolerated the first one ounce ng tube feed fine.  I was concerned about the planned 6 ounce feeds, given over the space of an hour, because of the recent vomiting issues, but the doctors wanted to try it to see if he could tolerate it.  Well, about three quarters of the way through he started throwing up and pooping at the same time, just all of a sudden.  We got the feed stopped and began cleaning him up, and noticed that the poop had climbed all the way up his back.  And what did he happen to be wearing?  You guessed it, a white onesie!  A particularly cute one, with little fuzzy baby animals on the front.  One of the nurses was nice enough to hose it off and soak it for me in the hopes of saving it.  I'll venture up to the Ronald McDonald room tomorrow and throw it in the wash while keeping my fingers crossed.  But honestly, there's very little white left!  Kudos to our nurse Caroline, she had a huge mess to clean up, and she did it with a smile!  And of course everyone needed to call her phone while she was elbow deep in Levi poop.  Poor woman was BUSY!!  The little guy is all clean and settled in now.  It didn't really bother him, he slept through the entire mess!  At least it wasn't a boring night :)

New Updates

We were happy to see that Molly was indeed the OT who came to evaluate Levi's eating.  I was hoping she would say he did well, but that was not the case.  She said he still chews everything pretty much in midline, like an infant, instead of pushing food to the sides of his jaw and chewing.  She has a few concerns, but we'll know more once the swallow study has been done.  He is scheduled for both the swallow study and an upper GI tomorrow.

Levi couldn't eat much of his food for gagging.  We just went ahead and stopped trying so he wouldn't vomit what he'd taken in, which included the antibiotic for the ear infection.  He now has an NG tube down his nose, and is at the moment trying a one ounce feed to see how his tummy tolerates it.  If all goes well they will start with 6 ounce feeds four times a day of the ketogenic formula and mct oil, which adds fat needed for his diet ratio. 

We have decided to go ahead with the G tube.  All teams of doctors agree that it is necessary.  I did my very best to keep him from it, but we just can't get enough volume down him.  Evidently the tube feeds will be continuous through the night, then he can have a couple snacks or meals during the day.  It doesn't sound as bad as I thought.  So I've come to terms with it and am now on board. At this point, I'm hoping they can do the G tube while we are here, so we don't have to come back for it.  There again, we'll know more after the tests tomorrow.

When we went down to the cafeteria to get supper we were surprised to run into our friends Amy and Doug.  You just don't expect to run into people you know at the hospital. lol  Their daughter broke her hand.  Poor Cassidy!!  They are in our prayers, and it was so great to see them and their daughter Allison!!

Going for a ride!



In the Hospital Again

So for the past few weeks Levi has not been feeling well.  For almost two weeks now he's had flu-like symptoms of gagging with and without meals, and vomiting with meals.  I thought it was a flu bug, but now not so sure.  We went to the ER last Friday.  They gave him some fluids but he was only slightly dehydrated, and took many tests, all which came back normal, thank God.  They figured he had a virus.  Once Tuesday rolled around and he was still sick, not eating or drinking much, no urination or bowel movements, we knew we had to take him in again. We were admitted overnight for hydration, but I've still been concerned that so many new symptoms cropped up at the same time, I wondered if it was not a virus, but some other underlying cause.  Thankfully, the neurology team agreed with me, and we are in the midst of running tests.  The normal phenobarb level test, which may result in a dose of IV phenobarb, and a test to check his thyroid.  They want to rule out seizures as a cause of the new symptoms.  I don't really feel like it's seizure related because the seizures have been less frequent and more mild since he's been sick, but you just never know.  I love that they are very thorough and look at every possible cause!  I've definitely been known to be wrong at times in the past. lol  In fact, I allowed IV fluids with a small amount of sugar (which is very restricted on the ketogenic diet) because I was mostly concerned with hydrating him.  Now he's been having many more seizures today.  I'm thinking that was the wrong decision!  The dietitian has let the nurses know which IV fluids he should have, so hopefully that will resolve in time once the fluids are changed.  Right now he's sleeping peacefully with Daddy. 

We did have the dreaded G-tube discussion.  I have spent the last year force feeding this little guy in the attempt to avoid any type of tube feeding.  I completely broke down in front of a whole team of doctors and med students this morning when they brought it up, even though I knew at some point it would be discussed.  How embarassing!  I'm feeling better now, though.  Even though it was something I never wanted to happen, I really have to look at the greater good here.  1) Levi would get all the fluids and nutrition he needs every day, 2)  We wouldn't have to spend a large part of the day making him eat food he doesn't want.  That being said, I'm still praying that this whole thing is due to a nasty virus and once he gets over it and is well hydrated he'll have more of an appetite! 

The OT is coming up at 3:00 to watch him eat and evaluate him.  It would be nice if it is Molly.  She taught him to suck the bottle again after he was in a coma when we were here originally. On the bright side, Levi has been very happy and animated today!  We haven't seen him this happy in weeks!   I'll try to keep fresh updates as I have information.

Levi and Daddy

So Many Changes!

I've been meaning to update the blog for quite a while now, but have been so busy!  This will be a long post!

First off I am so happy to say that our grandson Charlie will be home more often now, and in December the guardianship is dissolved and his parents take permanent custody of him!  The guardians live 5 hours away and did not allow us to have contact with him, so this is a very exciting and long-awaited development!  We have all been praying throughout this ordeal.  God is always faithful!!  I will post pics below.

As far as the Ketogenic diet goes, we raised the fat:carb/protein ratio from 3:1 to 3.5:1 last Wednesday.  The seizures are better than they were prediet in number, duration, and severity, but he still has multiple a day.  We no longer count, but I would guess around 50-60 a day.  The first 2-3 days after the ratio increase the seizures were very low and mild, and the focal seizures were pretty much gone.  Then they went back up again, and I'm really not sure why.  It could be that for 3 days before the ratio increase Levi was refusing bottles so he didn't get as many calories.  We have been thinking all along that a calorie decrease may help the seizures.  This is just one more instance that points to that.

He has decided that bottles and formula are a thing of the past.  He refuses to take anything from a bottle, and will not take the formula at all.  So he is drinking from a sippy cup and eating 4 solid meals a day!  This is going very well, except we have not been able to meet his fluid requirement, but then we never have been able to.  He is doing remarkably well with a cup, and each day his fluid intake increases.

He is sick today, so we are using "sick day" guidelines.  This means he can actually drink dilute pedialyte (which he loves and can't have anymore) and we are hoping he will be able to take sugar free jello at mealtimes.  Poor little guy threw up with his first bite of breakfast.  So we are cuddling and relaxing today.

He's awake now, so I'll save the rest of the updates for later.  Enjoy the pics below :)

Thank God for Coconut Oil!

As you know, the ketogenic diet has been a bit of a challenge, in that the volume of food is sometimes more than Levi can take.  Over the past weeks I've been trying to create meals that he likes, and we've had great success, but have still had to force feed him once he is full.  (Sometimes he begins the meal already full!!)  He won't drink the heavy cream from a bottle, it's too much to give him in a cup, and although he likes it whipped, he just can't always eat it all.  So I set out on a quest to find alternate choices of keto friendly foods that are high in fat.  Enter coconut oil.  I know that this is high in the good fats, triglycerides, and helps to raise and maintain ketones.  We have been using it as a skin moisturizer since, sadly enough, Johnson's baby lotion is not keto approved because it contains glycerin, which contains carbs. Yesterday I calculated a meal with coconut oil and absolutely NO cream!  It mixes easily into many foods, and the volume is so much less! 

Today I made him a peanut butter cup using unsweetened baking chocolate, coconut oil, peanut butter, vanilla extract, and liquid sweetener. I'll be trying it out at lunch.  I'll also be trying to put it in his mouth and have him bite pieces off.  Now that he has 5 teeth (he just cut a new one!) this shouldn't be a problem for him.  The best thing about it is that this little peanut butter cup, about the size of 1 Reese's, is his entire meal!   I tasted it and it was pretty darn delicious!  I hope he likes it!  So continues the quest for new meals sans heavy cream.  All I gotta say is, thank GOD for coconut oil!

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!!