Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, March 11, 2013

An Old Visitor and God's Joy

"Absence makes the heart grow fonder...."  This saying crossed my mind a few weeks ago because we were into week #1 past Meagan's 3 month mark with no seizures.  I thought.. uh, no it doesn't.  We are just fine without seizure thank you very much! No fondness here at all.  Of course, I should have known, the day I was thinking about this I thought I noticed Meagan have a seizure.  It was faster than her usual partials though so I brushed it off.  I saw it happen a few more times over the next several days and then I started to notice that she would literally not be with us for a short period of time each time I saw the behavior.  Her eyes went dead, as did her mouth, and there was no reaching her. She is an extremely social little girl, so I was pretty sure she was having seizures again.  This was an old visitor I did not like to see.

So sleepy at times...
She did it a few more times and I happened to catch one on video.  After doing some of my own research and also seeking advice from my trusted Hydro parents, I was convinced Meagan had started to have absence seizures.  I wasn't overly concerned as seizures are not something new to Meagan, and I knew what they probably were.  However, being that they are fast and can happen frequently, they were being disruptive to her day and interrupting her communication or her awareness at times.  I decided to go ahead and give the Neurologist a call.

Typical Absence Seizure in Meagan. Around 22 seconds you will notice her mouth and eyes go "dead" even though I try to get her attention. Then about 12 seconds later she snaps back into reality. Her Neurologist said this is very typical of this kind of seizure.

The Neurologist told me to go ahead and send the video to her email and she would get back to me.  Within an hour, she called me back and said yes, the video showed a classic absence seizure and there was no question Meagan was having them.  She said sometimes even if one type of seizure becomes well controlled by medication, the brain still tries to find a way to seize.  When one path is blocked, sometimes it will figure out a new path and so we will see a different type of seizure show up in the child.  It made sense to me, because on a positive note, the brain re-routing itself is also how a lot of children with brain damage recover or renew certain skills.  It just stinks that seizures can work this way too.  She said instead of switching medications we would just increase Meagan's Keppra for now.  The Keppra is working well keeping her partial seizures away, so increasing it is probably a better strategy than switching medications which may allow her partials to return.  I agreed and so we got the new dose for Meagan and started her on it.  Honestly, other than an increase in her sleeping, we haven't seen any negative effects of the increased medication.  She does sleep more times during the day and for longer periods, however, when she is up, she is herself, back to being happy and doing all the things she used to do.  So we are satisfied for now.  We just hope this works and we don't see an increase in these absence seizures or have them turn in to any other type of seizure. She is still my happy girl a lot of the time, though,  and I'm thankful she's been able to cope with this new development so far without any setbacks.

On a different note, Meagan has been doing well at PT.  She is hanging in there with her therapist, Miss M, who is pushing her very hard.  She is really trying to get Meagan to be an independent sitter by 2.  She is constantly pushing Meagan to work on her head, neck, trunk and back.  Meagan is of course resistent in some cases (ie: her trunk and belly) but actually enjoys supported sitting now while she is playing.  She is nowhere near me just leaving her to sit and play...she still arches, gets tired quickly and flops over, or will start leaning to one side or the back and fall... however she is definitely getting stronger.  

One concern her OT, Miss K, had was Meagan's curving spine towards her lower back.  She said even though her supported sitting is giving her strength, her spine and lower back are still really weak.  She said the best way to increase this tone is to give her even more belly time and force her to lift her head up off the ground.  Meagan is good at holding it up if she is set upright, as in someone's lap, but she hasn't been very good at dead lifting it off the ground from a prone position.  She fights as hard as possible to not be on her belly so it literally takes her PT, OT, or me practically "sitting" on her to get her to stay there so she finally gets mad enough and lifts up her head. 

Today at PT we had some progress in that area.  Miss. M was able to hold Meagan on her belly and Meagan did lift her head up for about 3 seconds! She held it up and then "plop!" .. back down it went.  Of course then we had tears because she does not like to be on her belly or lift her head that way! But, we all know it's for her own good.. we are trying to prevent any further damage or curvature of her spine and lower back.  So for now, our focus will be to try and get Meagan to lift her head more from a laying down position to help those lower back muscles support her spine.

Meagan working hard - a 3 second lift today!

And then the tears of course. She absolutely hates this position!

Another improvement we have had is the use of her Exersaucer.  For the past several weeks, we would place her in it, pad a bunch of blankets around her to support her trunk and try to work with her on putting weight through her feet or let her "play" and practice holding her head up.  But the way she had to lean in the Exersaucer is basically the same feeling as when she would be in the prone position, so she didn't like it.  As much as we pushed blankets in with her, we could never get enough support to her upper belly for her to feel secure enough to get quality time.

Another Hydro mom emailed me one day asking if we would like their Hugga-Bebe.  I remember reading about these a while back but had just not purchased one for Meagan.  With so much other stuff we needed, this was put on the back burner.  The mom was nice enough to offer theirs to us for free, and for that I was extremely grateful! So of course I said "yes!" and it arrived in the mail a few days ago.  Since then, Meagan seems to tolerate her Exersaucer time a lot more!  We still have about a 6 minute time limit before she totally loses it, but, she is not upset the whole time.  She feels secure enough to play a little bit, and even more importantly, the Hugga-Bebe helps make this playtime more enjoyable for her. So thank you to C's mom (you can see his story here)for the wonderful addition to our therapy tools for Meagan! We are loving the use we are getting out of it already and really appreciating the positive time it is giving her to play with her different toys.

Lounging against her Hugga-Bebe in the Exersaucer

Confident enough to reach for the higher toys

We are awaiting our appointment with the new GI in a few weeks from now.  They were "nice enough" to "let us" see the new doctor... we are so thankful! (And yes I write that with heavy sarcasm...) Obviously we had regressed in Meagan self feeding small pieces of food.  She is not finishing her bottles fully still, so in the meantime, I was trying to think of new ways to let Meagan try and eat.  She did like to hold her small pieces of food, but they would go in and out, in and out...without hardly anything actually making it into her stomach.  I'm not sure why she took this turn, but, she did. But since she still shows interest food, we just scratched that off the checklist and move on to other methods.  I hesitated giving her large pieces of food before because she would try to shove the whole thing in her mouth, or couldn't hold it very well and would drop it.  Knowing she could hold food better now, I figured we would try again with large pieces of food and see what she did. I would watch her closely and felt comfortable enough knowing how to grab food out of her mouth and being trained in infant CPR. So on a whim last week I started to give Meagan very large pieces of food.  She actually does pretty well with this.  Yes, there is more dropping of her food. Yes, there is more gagging.  But nothing dangerous and I am always right with her.  She seems to enjoy holding the big piece of food like a big girl and chewing on it.  We are still working with her on biting off pieces to eat, but she is definitely trying.  She seems to enjoy listening to us so we have started to give Meagan a lot of instructions verbally and by using signs with her.  She seems to be catching on.  We will see where this leads.  She is still not taking in what she needs orally, but, if this is at least a step to let her continue to enjoy food, it's worth it.  No matter where she ends up on the GI spectrum, we want her love and interest of food to keep going, whether she needs to be supplemented or not.  It seems to be working so far and we wait anxiously to see what the long term plan with GI will be.

Meagan not too sure of the piece of ice cream cone I gave her

Last night we had Pizza.... she really enjoyed trying that....

Of course the combination of more medication and harder PT and OT sessions means a lot more sleep for Miss Meagan.  She is certainly more tired at times, but we are so pleased that we seemed to have caught her new seizures early on, and pray the meds work for these as they have started to work in recent months for her others.  We are also so thankful she is enjoying her playtime more and more.  Of course to be Meagan is a lot of hard work day in and day out... and that's ok.  But as a parent, the most important thing we want our children to feel is loved and happy. To know God and the beauty of His world.  And that is really what I am thankful for with Meagan's new progress.  Not that she is a little stronger.  Not that she is a step closer to sitting.  But that she is happy.  She smiles now when we sit her up to play.  She at least tries to reach for her toys in the Exersaucer with a whole new curiosity opened up within her.  And when she does have to work really hard, with a quick snuggle and a kiss from mommy, she smiles and seems to immediately take pride in the work she just did rather than be in an inconsolable frenzy.  We want Meagan to accomplish what we feel is the most important goal - to love life find God's joy in it.  I think so far, she's doing a pretty good job.  

Daddy's version of funny push ups... Meagan thinks it's hilarious!

 Enjoying a friend's ice skating competition

Somehow I think I got more of a kick out of this than she did.....

 Girl's gotta have a purse right?


  1. I've been reading your blog for a while now. I just have to say I love reading and Miss Meagan is just too adorable. I loved the eating pizza clip.

  2. Oh, hahaha! She looks like, "puh-leez, you cannot be serious about these bunny ears!"

  3. I have to say that Meagan eyes look so bright and alive in all of your pictures. She is a beauty. I hope the med increase controls the seizures. We suspect that Ellie may be having abscence seizures as well (currently she has never had any other kind of seizure activity thank goodness). I haven't pursued it with the dr though b/c I don't want her medicated for it unless it becomes more of an issue or develops into something different. I love the pizza clip, especially where she signed "eat". That was great. Does she use any signs to communicate or was she just imitating?

    1. Kim - we only did eat to encourage her because of all her gaining issues... she clearly understands that and can tell us now on her own so yes, we are going to start incorporating more signs with her. She seems to understand quite a bit of what we say.. .just can't get it back to us verbally. Her OT and PT are also going to start using more signs as well with her.

    2. Oh and re: medications and seizures.. yes, she was already medicated for the last 1 year + due to her partial seizures.. they took so long to build up and slow down.. and at times would give her parlysis on one side of her body afterwards, medication was an easy decision. I hesitated calling about her absence seizures.. but.. she is so social and doing well that I started to notice it really interrupting her day.. plus I wanted them under control so later on if she continues to progress and can do school work, they don't interrupt her school work by making her pause constantly. That's really a big concern with absence seizures - the interruptino of thought and older kids when they are trying to do any kind of work... or even things like swimming because a 13 second absence seizure can make them in danger of drowning..etc.