Two Week Update

I talked to Levi's neurologist today and since there have been no obvious seizures we will begin giving him lower doses of the steroids starting tomorrow!  I'm very excited about this for several reasons.  First, I hate pumping chemicals into my children.  Second, hopefully his night time raging will come to an end and we will ALL sleep better.  But there is one more little benefit that will come from this.... by "little" benefit I mean hopefully he'll get little again!  I'm pretty sure I've already shared that the steroids make him absolutely ravenous.  After he's finished an adult-sized meal, he still wants more!!  So, to say the least, he's gained a little weight.  Most of it is water weight from the steroids, but the kid is HUGE.  His belly is so big that his belly button is COMPLETELY out.  COMPLETELY.  It's so big that Jeremiah was actually worried something was wrong with him.  His face has chubbed up so much that he can't open his mouth as wide as normal.  His lips are swelling too and are almost constantly pursed  because everything is so swollen.   I'm pretty sure he's gained three to five pounds in the two weeks that he's been on the juice.  So, the hope is that he will start to lose some of that water weight as we reduce his medication.

The scary part of it is that he could start having seizures again once we lower the dosage and we'd have to raise it back up.  So, please be praying for no seizures!!

We have our follow up appointment next Friday and he'll have to have another EEG.  So, I'm going to buzz his head.  I'm not a fan of the buzzhead look on little guys, but it will make it easier on him in the long run so that's what we're going to do.  The appointment should only take one day, but if he keeps having the night terrors (which could be a side-effect of the steroids or signs of seizures) after we lower the steroid dose, they might want to keep him overnight.  But, even then it would probably be just one night so I can't complain about that!

Well, there you go!  That's the news!

Here are Levi's before and after pictures.  Enjoy the chubbiness!

         

                                                                           BEFORE                                

                                   


                                                                         AFTER

Some creative title about how life is going with Levi

This one will not be long.  I'm tired.  Tired and Emotional.  Tired because Levi has been up screaming throughout the night for the past three nights.  We're pretty sure it's the steroids.  I got two hours of very interrupted sleep last night and then another two hours split up and both equally interrupted this morning.  The night before wasn't as bad, but two nights ago was pretty rough.  I called and left a message for the doctor this morning and haven't heard back yet.  Hopefully we can give him melatonin or something.  I don't know how long I can do this without any sleep.  So, I'm tired.  Emotional because Levi has been  up screaming throughout the night for the past three nights (wait, I already said that).  I'm supposed to be going to a fun and free breakfast for artistic people in Minneapolis tomorrow morning.  I've been looking forward to it for weeks, but right now I'm so tired that I don't even want to go.  That makes me kind of emotional too.

So, there you go.  I don't want this to be a place where I can just vent so I hope I haven't been a downer to anybody.  We're still trusting God and Levi is doing well overall.  He's just not sleeping.  Even after getting such little sleep, himself, he still barely napped at all today.  It's currently an hour past his bedtime and he is up and rearing to go.  So, it's just where we are in the process of it all.  I wouldn't mind this part coming to an end very soon.  In the mean time, God is faithful and I know I can find my rest in Him.  I just have to actually do it.

Goodnight!

One Week

Levi has had one week free of seizures!  This is a good thing.  I think his meds were getting to him today so he wasn't quite himself again.  With all the days when he's perfectly normal, you think I'd be okay with a day or two like today but I'm not.  It just messes with me to see my baby so drugged and emotional.

The good news is that if he stays seizure free for another week, we'll begin to decrease the dose of steroids.  The scary things is that with this reduction the seizures could return.  We are hoping and praying that they never return, but as the doctors begin to regulate the medication, they could come back.  So, he could have to stay on the steroids for quite awhile (or forever). Our hope, though, is that we can completely eliminate all medication within the next couple of months.  There is a chance that this treatment could cure his seizures completely (a small chance, but a chance!).  So that's what we're praying for.  Feel free to join us!  :)

Lastly, Levi started yet another medication today.  Steroids lower our immune systems.  I knew this.  I've known several people who have stayed away from large groups of people and lived very cautiously because they were on steroids.  Apparently, Levi is on such a high dose of steroids, though, that his immune system is SO compromised that he now needs to take preventative antibiotics to help keep him from getting sick.  They're concerned that if he were to get sick, it would be severe.  So, he started his preventative antibiotics today.  Please also be praying that he stays healthy through all of this.  Most of you know how I hate pumping chemicals into my babies' bodies.  It's just not right!

So there you go, things are still looking up, but I am nervous that reducing the steroids won't work.  Thank you again for all of the prayers!

Meds, Moods, and Foods

Levi has been seizure free since Saturday!!!  I hope this means his steroid treatments are helping and maybe we can start reducing the dosage soon.  The steroids have been rough on him.  He's pretty up and down emotionally during the day and hasn't been sleeping well at night.  But, I've been watching the clock and have noticed a consistency between his moods and his meds which makes me feel better to know that it's not some permanent change in his personality from the seizures. 

Aside from being a bit moody, he's also HUNGRY all the time.  And I mean HUNGRY!!  He just can't seem to get enough food. Our amazing doctor friend said not to let him eat too much and to try to give him only healthy snacks since he'll be wanting to snack all the time.  I haven't been grocery shopping since a week before we were in the hospital so I don't have much to feed him.  But I'm going grocery shopping today and am hoping to find healthy, all-natural, very low-calorie snacks.  I do plan on steaming some veggies, but if you have any other ideas please leave me a comment!  I'm wracking my brain trying to think of stuff and just don't know what to do.   It's so hard to deny your child food when he's so obviously hungry and I don't think I'm doing a very good job at it.  Not that I think we're supposed to completely deny him food when he's hungry, but we do need to keep it very healthy and only until he's just satisfied.

Overall, I think we're adjusting as well as we can to all the medication.  His mood is getting a bit more consistent as time goes on and we'll figure out the food thing.  Most importantly, of course, is that he hasn't had any more seizures!!  We have a follow-up appointment on August 3 and possibly a short phone consultation before that to adjust the steroids (which they will need to be adjusted if he continues on this streak of no episodes!)  So, please continue to pray for no more seizures.  Apparently, there's a chance that if this treatment works, he can go off the meds and continue to be seizure free forever!  I do believe it's only a 30% chance, but I have hope for it!

Moving forward

As far as we know, Levi hasn't had any seizures since Saturday.  There have been a couple of jerks while he was sleeping, but it seemed more like the usual sleeping jerks than seizures and they didn't repeat in clusters like the normal ones do.  So, hopefully that means the steroids are working.  With that, though, the steroids are definitely affecting him.  He was either cranky, crying, or screaming from the time that he woke up till 6:00pm yesterday.  He did give us 3 or 4, 5-10 minute breaks.  But, overall, he was a mess.  He just wasn't himself and that was hard to deal with.  I feel like I can handle 17 different medications and shots and probes and whatever crazy tests or treatment we have to face, but when my son is not my son it kills me inside.  So, the past couple of days have been a bit more difficult emotionally.  It's all starting to soak in.  I'm really realizing that life is going to be different for awhile and I'm not quite okay with that yet.  But, I know I will be.  Why?  Because Jesus is holding me!  Here is a scripture he's speaking through today.  I'm saying it aloud as I type each word.

"My sheep hear my voice, and I know them, and they follow me; and I give eternal life to them, and they will never perish; and no one will snatch them out of my hand.  My Father who has given them to me is greater than all; and one is able to snatch them out of the Father's hand."  -John 10:27-29

Here's another scripture that I am speaking over Levi's life.

"For in Him all the fullness of Deity dwells in bodily form, and in Him you have been made complete, and He is the head over all rule and authority."  -Colossians 2:9-10

Lord, PLEASE, let Levi be made complete through You!

Home Alone 2

That' right.  I planned the title for this post before I titled the last one.  The good thing is that since there were like five of those movies, I can write like three more posts before I have to come up with a creative title again.  The bad thing is my sense of humor.  But, I digress.

So, Levi is doing well.  He had four seizure on Friday, two yesterday, and none, so far, today.  He's doing pretty well taking his medication, which I can tell is starting to affect him.  Apparently steroids make you pee your entire body weight by the end of each day (this may be a slight stretch...) so Levi has had the most full diapers EVER.  Not a big issue to deal with so I'm not complaining.  The steroids are also having the usual side effects - irritability, aggressive behavior, hyper-activity.  As many of you will know, Levi is a very active child.  If I turn my back on him for more than three seconds he has either climbed up on top of the highest piece of furniture in the room or he has put some sort of choke hazard in his mouth.  In between climbing and eating everything, he runs.  There is no walking with him, only running and climbing.  That's pretty much a normal day with Levi.  So, now please imagine that sweet normal Levi with a little (or large) steroid boost.  Levi on steroids is even more active, but with a pinch of aggressive and a dollop of cranky.  But, he's still my sweet boy and I wouldn't have him any other way.

In other news, we broke down and bought wrist watches yesterday.  If Levi does have a seizure we have to be able to time it accurately and our phones just weren't cutting it.  It actually feels really weird to wear a watch again, but I'm getting used to it.  Of course our watch purchase is completely irrelevant to how Levi is doing, so feel free to skip this part.  Oops.  Too late.  I guess I should have said that before hand instead of after.  Sorry.

So, overall we're all doing well.  We're tired.  I'm still nervous about being able to properly parent a child who has seizures.  But, I have a firm belief that God gives kids the parents that they need to have and parents the kids that they need to have.  So, God must think we can do it.  So, we will.  With Him, we will!

Home Alone

They sent us home today.  Like I mentioned before, I don't know that I'm ready to be home, but here we are.  We're getting on with life.  It will be a whole new life, for awhile at least.  For instance, Levi had four seizures today.  My job, as stay-at-home-mom is to make sure none of those seizures last more than five minutes and that he doesn't have more than two in an hour, otherwise I have to administer emergency medication and call his doctors.  So, I pretty much have to watch him every moment of the day until we've found a treatment that manages the seizures.  And that is the next step - finding a successful treatment.

And the current treatment plan is:

We were sent home with five prescriptions!  We have already begun weaning him off of one, which will be finished tomorrow.  Another is the emergency medication that I mentioned previously, so we'll only use it if we absolutely have to.  But, that still leaves three that he has to take on a daily basis - the vitamin B6 - twice daily, prednisolone (a strong steroid) - 4 times/day, and Zantac once/day (because the steroid will upset his stomach).  So, they are hoping (WE are hoping) that the steroid will help to calm/stop the seizures.  We have a follow-up appointment in two weeks to determine whether the steroids are helping.  This will include another EEG (with all the wires connected to his head).  Depending on EEG results and whether the seizures have increased, stayed the same, or decreased they will either increase the steroid dosage, keep it the same, or begin to gradually decrease it.  We'll have another similar appointment 2 to 4 weeks after the initial follow-up appointment. The hope is that we can gradually taper Levi off of the steroids completely and stop the seizures altogether.  At the very least, though, we'd like to get them under control and potentially put him on a milder medication to manage them.

There will be more test results coming in a few weeks as well which could change the treatment plan if any of them come back revealing a specific cause for the seizures.

So, there you go.  This is the plan as I understand it. (Speaking of "as I understand it", I would like to throw a disclaimer out there.  All of the information/conclusions. in this and previous posts, from the doctors is "as I understand it".  Seizures are such a complicated condition that even the neurologists don't claim to completely understand them and then I'm expected to understand the neurologists as they try to explain something that they don't completely understand.  With that, I'm sure I have plenty of misconstrued information about seizures, etc...., but it's what I understand is going on at this point.)

Thanks again for the calls and texts and prayers!!  Even just seeing the huge numbers of people reading this everyday is amazing and so encouraging!  We have a HUGE support group.  Thank you!