The Details-Infantile Spasms, Treatment, and Coming Back

Ok, finally, a few details from last week. But first, a picture. Here's our sweet girl in her hospital bed. Poor baby!All hooked up for her EEG.
Like I said, we went up to UVA for an appointment on Monday. At that appointment, the neurologist said it looked like she was having Infantile Spasms (IS), but had to catch it on an EEG just to be sure. So, he wanted us to stay for an extended EEG (which I've been wanting for her anyway). We figured we might as well, so we stayed.

They quickly determined that she was indeed having IS. Even though the name sounds less "scary" than "Seizures", Infantile Spasms are actually very bad and very damaging. Waverly had gotten to where she was having them all the time, 6 or 7 episodes a day that lasted anywhere from 5-25 minutes. She'd have them every few seconds during the episode, meaning she was having as many as 100-200 at a time (each episode). Poor thing was worn out!

After confirming that she indeed was having the IS, we were given a few treatment options. After much research and prayer, we decided on one form to try. So she is now on corticosteriods (prednisalone) for 45 days. She started on a heavy dose, and will gradually decrease over those 45 days. In that time, we have to watch her closely for side effects. She may gain a lot of weight and be irritable. We also have to test her urine three times a week for glucose, do two stool samples a week, and check her blood pressure twice a week. Once a week she will get blood drawn to check her electrolytes. So, that means we have three extra doctor's appointments every week, from now till the middle of December. Plus we'll be heading up to UVA for several checkups, including another 4-hour EEG in 2-3 weeks.

It's all pretty overwhelming, to be honest, but we are really hopeful that we will get these IS kicked out for good. Since starting these IS three weeks ago, we have really seen how they've affected Waverly. She doesn't smile as much, sometimes not for days at a time (as I write, I can't remember the last time she smiled). She's not as talkative or interactive. It breaks our heart to see our little girl just "not there". We hope that as we get these seizures out that she'll return to us.

While in the hospital, she had a big seizure, that lasted for about 30 seconds and made her turn blue. She desatted to 44, so now we also have a pulse oximeter machine at home, along with oxygen, just in case. That was not an IS, but another type of seizure. Because of her condition, she will always battle seizures. It's just a matter of trying to keep them under control and at a minimum. However, since the IS are such a bad type of seizure, they want those eradicated completely.

This is a picture from the day they unhooked her EEG. We came home the next day. Since she had the leads on for so long, they left a few sores on her head. But they are healing up now.
Since coming home, these past two days have been much improved regarding how many seizures she's had. However, she remains pretty non-interactive still. Please pray that we get these IS kicked out completely, that we get the other seizures controlled, and that our little girl will "come back" to us very soon.

First Hospital Stay

Well, we have completed our first hospital stay! Exciting, I know! We had an appointment at UVA on Monday with a neurologist up there, ended up being admitted for an extended video EEG, and came home on Thursday. I am too tired to post all the details, but the basic facts are that Waverly was diagnosed with Infantile Spasms (which I'd been suspecting for two weeks). So we decided on a treatment plan (again, more on that later) and started implementation of the treatment. She is continuing to have the IS, but we should see within a week if the new medication is working. If not, we'll try something else in another week. We will continue to be followed by the neurologist up there, so we'll be making somewhat regular trips to Charlottesville for treatment and consults.

I haven't slept well in three nights and have been up since before 3a.m. this morning, so that's about all I can muster for now. I will update soon with more details. Thanks to those who stepped in to help us in this unexpected hospital stay that was out of town.

Heart Thoughts-Reality

Today we had an appointment with the geneticist. We saw her when Waverly was in the hospital, but that was a long time ago and just after her diagnosis, and we were so overwhelmed at that point that it was more of a listen wide-eyed appointment than anything. So today I was able to go in and actually ask more questions, and learn more. It was a good appointment in that way, but difficult also.

I saw the MRI images of Waverly's brain that they took when she was 2 days old. We saw them the day that we got her Lissencephaly diagnosis. (I will write a post about that at some point. I just haven't felt quite ready yet. It's a tough day to bring back to mind.)

Of course, we were so shell-shocked with all the information that they were telling us about our brand new baby that we briefly saw the MRI images, but don't remember much about them (and didn't really know what we were looking at). So, to see them again, this time with a little more clarity of thought, was interesting but hard. Below is a picture of a normal brain scan on the left and a lissencephaly one on the right. Waverly's looks like the one on the right, although with a little more open space in the two lower sections as well (where she is missing brain matter also). Image credit: http://www.newswise.com/articles/researchers-identify-cause-for-severe-pediatric-epilepsy-disorder

There are different degrees of "smoothness", and the doctor showed those to me. Waverly's is pretty much as smooth as you can get. I already knew the answer to some of my questions, but I still had to ask (again).

Was it anything that I did or didn't do to cause this?

My pregnancy was pretty difficult with her, with lots of sickness and just not feeling great. But she assured me that that would not affect it. The chromosomes that were already a part of Waverly already existed, from the moment she was formed. Johnny and I both got the genetic test to see if one of us had a rearrangement of our 17th chromosome that could be passed on to her to cause the deletion, but neither of us did. It was just a "random" mutation that caused the genes to be deleted off of the chromosome.

She said it was just "one of those things that happens", but of course we know that she was "knit together" in my womb. We truly believe that she is God's special gift to us (just as our other two children). But to see it, to hear the prognosis, and to talk frankly about the future is still emotionally draining, as sometimes the reality is grim.

Of course we know that we have a big God, who is in control and has all the power in the world. We know He can choose to heal her if He wants (although it'd be a pretty amazing healing to make a brain where there isn't much!).

But the larger reality is that her healing will probably be in heaven. How cool is it, though, to think that her first steps will be toward the outstretched arms of Jesus? That her first words will be His praise on her lips? What an amazing picture of her healing, and I can't think of a better way for that to come about.

Lord, may I focus on Your glory in this, and not on the sadness, on the hope that we have instead of on the loss that we feel. May Your light shine in and through this little girl.

Seizure Update

Waverly had an EEG yesterday afternoon. The results are that there was an increase in myoclonic seizure activity, but also an increase in normal brain activity as well. It was just a message, so I'm not sure exactly what that second part means since I wasn't able to ask. But it does explain the increase in seizures we've seen. We are to increase her Keppra dose from 1.5mL twice a day to 2.5mL twice a day, and report back to him in a week. So, we will continue to wait and see. They said the EEG did not show an Infantile Spasm pattern, which is good. Those are the really damaging kind of seizures. However, I am still concerned as she has just not been herself the past several days. She seems to be having seizures especially at nighttime the past few nights, so if you think of her, please pray for her then in particular. Last night she got so upset by them that she screamed for over an hour until she threw up, but then went to sleep. We'll see what this increase in Keppra does to hopefully help keep the seizures at bay a little more.

Also, she seems to be fighting some kind of cold or virus. She's been kind of snotty and her eyes are watery. Like I said earlier, she just hasn't been herself since Friday, although I did see a little smile from her earlier today (the first one since Sunday morning). Pray for that sweet little smile to come back to us.

ER

We had our first trip to the ER this morning...During church Waverly started having seizures. She was having 5-10 spasms every minute for 20 minutes. After a call to the doctor (and a look-over from our friend at church who happens to be a Physician Assistant at the ER), we took her in. Of course, by the time we got there she was completely asleep, and slept the whole time. They checked her vitals, blood sugars, etc. and then gave us the choice to stay overnight for observation or go home and come back in the morning for an EEG. Since they wouldn't do anything to treat her, we opted to come home and return in the morning.

Please pray for her tonight. She slept most of the afternoon, but has woken up for the evening. She's going back to sleep for the night now, but had about an hour of being really agitated, and possibly having some more seizures (it's hard to tell sometimes...). Pray that she does ok overnight, and that we're able to get an appointment for her EEG tomorrow. Thanks, and we'll keep you updated.

Big Bad Seizure Monster

Well, we are now on seizure meds. Waverly has been having "suspicious movements" for quite some time now, where she kind of flips out her arms (and sometimes feet) over and over while falling asleep. But we weren't quite sure they were seizures, although the past couple of weeks I've come to the conclusion that they are seizure-like activity, at least. But they haven't seemed to affect her much or anything. However, on Sunday while we were at small group, I was holding her upright to give her some head control exercise, and she did a different kind of movement. It was like she was starting to hiccup or gag, but she only made the movement with her core, and had no other outward signs of anything. She did that movement every few seconds for about 60 seconds, and then it was over. As soon as she started, I mentioned it to hubby and told him I thought it was a seizure. Then, yesterday, she was starting to doze off and did the same movement. However, this time she grunted each time she did it (it was almost like she was contracting from her core), and her legs were involved. She did it every few seconds for a good 2-3 minutes, then continued for another couple of minutes but less often (and with a few random twitches in there as well). We went ahead and gave her her first dose of Keppra, per the neurologists instructions, at a loading dose (twice the prescribed dose). We've continued with her regular doses since then.

Thankfully, the seizures were not the big, bad, scary kind. But, it's still heartbreaking to watch your baby go through something that takes over control of her body. To know that it was uncomfortable for her, to see the effects of her brain misfiring. Seizures are one of the things that I've been dreading most with all this, and it looks like we are starting down that road. And for me, that was pretty upsetting. But, we know that even when it seems like all control is lost, He is still in complete control.

5 months old!!!

Our sweet girl is 5 months old today!! Just one more month until the big 1/2! A few days ago, she was super smiley and talkative all day (and I mean ALL day...she didn't even nap the whole day!). I got some really cute pictures of her on my phone that day. Here are a few.
Even though this one is blurry, I love how she's sticking her tongue out!

Waverly has started to chunk up a little bit, especially in her legs. I noticed a couple weeks ago that she has knee dimples, and I think they're simply precious!
She looks so chubby in this picture (her cheeks)! This is how she sleeps now. On her side, with a blanket over her middle and legs, with her hands crossed in front of her. So sweet! This picture makes me laugh because of her hair sticking up in the back. It also shows her silly hair...still lots of it in the back, but none on top! She's also worn that spot on the back of her head completely bald, so it looks even funnier!
Waverly got to spend an afternoon with her little "boyfriend" Ryan. We met him and his mom for lunch when they were in town for some appointments. Ryan has Miller-Dieker Syndrome like Waverly, and lives about an hour away. It's totally crazy that with how rare MDS is, that there is someone who lives so close with it! We are so thankful for their family and their friendship! Aren't they cute together!
Waverly had an EEG a couple of weeks ago. Thankfully it isn't showing any overt signs of seizures yet, but the neurologist did say that her brain activity was disorganized and immature (what he'd expect), and that there were several "blips" that were pre-seizure kinds of activity.
We have been noticing some seizure-like movements more and more, especially as she's falling asleep. The doctor was a little unsure if it was true seizures or not (and definitely thinks they're not Infantile Spasms, which are the really damaging type of seizures), so we are holding off on medication for now until they start up for sure or more frequently. I have been so scared of the seizures starting, but we know that it's just a matter of time. I am so very thankful though that we have managed to go for 5 whole months now without any major seizure activity or issues. Thank you, Lord!

As Waverly has been growing, she's been able to wear more of the clothes that her big sister wore. This dress is one that I have a picture of K in when she was a baby. How fun! I love seeing Waverly in those sweet little hand-me-downs. She's mostly in 0-3 month clothes, but can wear some 3-6 month size also. However, we still have trouble with pants. They are all loose around the waist! I'm not sure what's going on with that!
Waverly had her first big sickness this month. J had said his tummy hurt for a few days. A couple days later, Waverly spit up, then she started throwing up. She threw up for two full days, after every feed. We finally got her switched to Pedialyte, and she tolerated that a little better, and then we slowly reintroduced milk. We are so thankful that it wasn't worse. We almost had to take her to the hospital, but I think she heard us talking about that and got scared! We're so thankful to have avoided that this time!

A few more facts about our girl at 5 months old:

-we've started actually putting her to bed (instead of keeping her up with us until we go to bed)! I know, it's a novel thought! She goes down about 9:00p.m., when her nighttime feed starts. At some point in time during the night, she usually fusses and then I transfer her to her carseat, where she finishes sleeping for the night. That usually happens around 3a.m., but can be anytime during the night (as early as 11p.m. or as late as 4a.m.). She sleeps until around 8:00 in the morning.

-during the day she naps on and off. She doesn't really have much of a schedule for naps. Sometimes she sleeps a lot, other times not much at all! It really varies from day to day!

-she is still able to eat by bottle some, but we take it slow and only do it when we have time to really stop and focus on it. If she acts like she's uncomfortable or unhappy during the feed, we stop and try again at another time. When she's handling it well, though, she really LOVES to eat, and sucks down what she's allowed to have in no time at all!

-she weighs 11lbs 13oz and is 23 inches long.

-she is usually the most smiley in the mornings, and will flash us some very sweet grins! She also has times where she'll coo at us when we talk to her, and it's about the sweetest sound you've ever heard!

-she doesn't like loud noises...they scare her!

-she still loves to be held, and adores her older brother and sister!

Update

This past week, Waverly has had some sort of tummy bug. She threw up two times on Wednesday evening, and then several times over night that night. On Thursday she threw up after each feed, although I had decreased her feeds to only half the normal volume. Finally on Friday we switched her to Pedialyte and she seemed to do better with that. So we are hoping that she's on the mend. So far today she hasn't thrown up any. We are trying half strength formula now to see if she will tolerate that. The doctor gave her till last night to stop throwing up before we needed to take her to the hospital. I'm glad that we didn't have to go that route (at least not yet!), and hope we're able to keep her improving here at home. Please pray for our girl to get all the way better! Thanks!