We're Home

We made it home tonight from four full days in Wisconsin.  It was great to be away from it all and take a breather from life.  It was great to talk to family and be assured of everyone's ongoing prayers and support.  Sunday, Sophie started the two pills at night--she was knocked out by them.  It was almost as if she was drunk as she walked dizzily and bumped off of walls.  Over the week she's also picked up the side-effect of non-stop hunger.  Every hour, no matter what she's already eaten in the day, she's begging for more food--the amount she ate today on our drive home alone was jaw-dropping.

Back to our vacation, for me, the greatest moments of the trip were those when I was with Joe in an aluminum boat, gliding over the water.  The beautiful blue sky above us sprinkled with fluffy white clouds, the green trees surrounding the lake, the water surrounding me and lapping against the boat under my feet, the pure air.  I know it may be cliche but I do feel closer to God in the Northwoods.  As we rode over the waves, I tipped my head to the Heavens and poured my heart out in prayer.  I'm confident they were heard.

On a more disappointing note, I have not yet noticed any big reduction in seizures.  I feel like the medicine makes her so tired that she has a lot more time drenched in drowsiness which is filled with seizures.  Tonight as I put her to bed, she had a large one and it broke my heart.  I long for her to go to bed, take her medicine without a seizure in the middle of it.  Tonight when she had it she was saying, "Mommy, I love y...Tara, you're beautiful".  I feel the same about her.

Things I'm learning

Yesterday when we woke up, Sophie had a sore on her face near her mouth.  I've now recognized that I am going to become one of those paranoid moms who thinks everything little, is something big.  I think I was in the midst of a panic attack all morning, worried that the sore was an alergic reaction to her medicine.  Unfortunately because we were heading up to Wisconsin, I decided not to take the time to call the pediatrician.  On the drive north, she put A&D on it about once every 30 minutes.  I'm glad to say that as the day went on, it did improve and this morning there were no more sores and that one is not bigger.  I'm very relieved.  As I said though, I now recognize that nothing with Sophie is going to seem like nothing to me anymore.  I grieve the abilitiy to just "pass it off".  I pray that this sore is something okay to pass off because we'll be near Hayward until Tuesday and I'm looking forward to relaxing, not worrying.

My second lesson of this trip is that Sophie needs a strict bedtime on this medication.  Wendi wouldn't fall asleep last night alone because she isn't used to her grandparent's house, so I laid with her and ended up falling asleep myself.  Since we never discussed a bedtime for Soph, I heard her being brought to bed at 11 pm after spending the evening outside with family!  Again, because of unfamiliarity, Wendi woke up at 6:30 am wanting to play with everyone so unfortunately Soph was awoken.  That equals 7.5 hours of sleep for a girl whose medication's strongest side effect is drowziness--you can guess what her mood is this morning. 

For the next four days we'll be up at a cabin near Hayward and I won't be able to get online as far as I know.  Hopefully Sophie gets better sleep, we all relax a little, and we're filled up with joyous family time!

"Full Speed Ahead"

This afternoon I heard back from the neurologist, after leaving two messages begging him to call before I head out of town for the weekend.  The conversation went a little like I expected, but it's easier to expect something than to experience it.  He did confirm that there is a great amount of abnormal activity on the EEG and that the activity is "indicative of Absence Seizures", but he added that not only does she have a high frequency of seizures while awake, she has an even higher frequency of them while sleeping--abnormally high. So, the take-home from the conversation is that my daughter seizes all night rather than sleeping.  Although this sheds light on her volatile attitude, it also makes me very sad to know it's been a long time since she's had a good night sleep.

Our path now is to speed up the titration of the seizure medication so that rather than one in the morning and one at night until we see him again at our next appointment, which was August 14th, we now go up to one in the morning and two at night on Sunday, then two in the morning and two at night next Thursday.

Also on Thursday we have to be at the hospital by 6:30 am for an 8:00 am sedated MRI. I'll update on that process another time, but after she's out of sedation and cleared to leave which is expected to be at 11:00 am if all goes well, the doctor asked that we come straight from the MRI to his office.  This is one of those terrible doctor's appointments when rather than scheduling it, they just ask you to come to their office to talk.  I'm sure you can guess how Joe and I feel about that.

The doctor closed our conversation by saying he's hopeful and that he thinks the medication at some point will be able to stop the seizures, we'll just have to see how much medication it takes.  Needless to say, I left work a couple hours early after talking to him and went home to just cuddle my daughter--who by the way came down with a fever yesterday after getting up at 3:00 am for her test.  So now she's not only epileptic but also sick.  On a good note, Wendi is over the cold and enjoys reminding us, we're sick and she's healthy.

"Sticker Day"

Sophie's been taking her Depakote for one week now, and although it does seem the seizures are less often, they are no where near gone.  She continues to have about one every twenty minutes if not every five.  I've learned it's not uncommon to have 50 to 100 seizures a day with this condition, it seems to me that many days she has more than that.


Today, Sophie and I woke up at 3:00 am to prepare her to be fully sleep deprived for her EEG.  We started our morning with cartoons, then Walmart, then Denny's for breakfast (I highly recommend their new Strawberry Pancake Puppies by the way), next was a park and then home around 7:00.  The family spent the morning running errands until it was time to head to the hospital.  Sophie handled the exam perfectly, she sat still and was quiet while the "stickers" were put on her head, she closed her eyes and opened them when asked for the strobe light, she blew on a pinwheel for three full minutes (hyperventilation again), and then fell sweetly to sleep for the finish of the test.


I saw her have various seizures during the hyperventilation, but no other time.  When it was over, I said to the tech, "She twitches a lot in her sleep but I don't know if that's due to seizures..."  She replied, "It was, she had a lot of activity while sleeping--she's pretty bad.  I probably shouldn't say anything, but I'm a mom too and I'd want to know."  There went the air.  I was hoping for normal or not-so-bad, I was betting against, "pretty bad".  The tech was going to call the neurologist to get him to read the test stat since we head out of town Friday for a vacation in northern Wisconsin.  


Tomorrow we start the morning dose of Depakote along with the evening one.  I'm guessing with time, we'll end up at three doses if the tech was right and it's as bad as she said.  I've trusted God through all of this, and find peace knowing "The Kingdom of God is at hand".  I stared at her beauty and prayed for her while she slept during the EEG.  I know she is so much more than this and I don't want it to become her.  I hope that by journaling about it here I can remember each stage and look back someday to see how far we've come.


I've attached a picture of how we're continuing to let her live her life. This is what gives her the most joy even though we hold our breath that she won't have a seizure while doing it.  She tends not to lose her hands when she goes absent though, just her eyes and train of thought so I think we're safe.  Even so, this will probably soon be on the list of things the doctor tells us not to do, but we love her smile and her laugh and won't let this new journey stifle them or the fun in her life.

"Take a Deep Breath"

On July 3rd, at Sophie's Kindergarten check up with the pediatrician, we explained to him a habit that she's had for the past few months which has recently become more frequent and more mysterious.  The pediatrician immediately expected "Absence Seizures" when I described how they began when she was tired, how her eyes flutter to the ceiling for just a moment or two while she pauses briefly from speaking or eating, and then how she returns to whatever she was doing as if nothing happened.  


At the appointment, he repeatedly said to her, "Take a deep breath....Again...Again...Again..." until her eyes fluttered up and she laid down on the table in exhaustion asking to stop. At that point he confirmed his diagnosis and referred us to a Neurologist.  It took three weeks to meet our new doctor, and when we did he was disappointed that we hadn't got in sooner.  After a brief exam, he stated, "She should have been on medicine yesterday!"  He began her on Depakote that night.  He also ordered blood work to get baseline counts before starting the medicine because it can be hard on the liver, an EEG to confirm the diagnosis, and an MRI.


The blood work was rough on her, but I think the anticipation was worse than the event.  She cried the entire wait to get into the lab, the entire time the phlebotomist prepped her arm, and screamed when she was stuck.  It was over quickly though, and she got a Cake Pop at Starbucks on the way out.  


She left her ID bracelet from the lab on through her Birthday party on Sunday.  I guess even though she hated the experience, she loved the free accessory.  The Birthday party was a huge success--more friends than we'd ever expected.  It was great to get together with friends and family and to get back to "normal" life.