Epilepsy Walk

Please donate to the Epilepsy Foundation.  We are doing the National Walk this year!  Just click on Epilepsy Walk and it takes you to the donation page.

The Fun at the Hospital

Before you read on, please take a moment of silence for the parents that are watching their child have a seizure right now.

I guess it was inevitable that she was going to have seizures, between the sickness and the weening of Dilantin.  They came to the conclusion that it was from the sickness.  So good news is that we get to keep weening her off Dilantin.

Here's a glimpse of what my day was like.

At midnight I was still awake.  If you know me at all, that never happens.  Something was not letting me even want to fall asleep.  12:30 comes and there's whimpers on the monitor.  I go over and just know she is going to have a seizure and she does.  I sit there watching and pretending to time it since it's dark and there's no clock.  I start yelling for Drew to go get her meds.  I wasn't clear and just said meds so he goes to get tylenol I guess.  I'm starting to get mad that he didn't know what I meant.  What if we don't give her Diastat in time?  By the time he gets it, she comes out of it.  She is usually tired after a seizure so she fell back asleep.  We did give her some Tranxene before she fell asleep.  Believing that the extra med will help us continue peacefully throughout the night, I finally fall asleep.

3 hours later I hear crying on the monitor.  I get up and just know another one is coming.  I sit down with her in my arms and watch the whole thing.  She is whimpering and shaking her left arm.  It's almost a little hard to tell she is having a seizure.  It's really hard to hold your daughter in your arms while she has absolutely no control over her body, even her breathing.  Thoughts just rush through your head.  I actually start to think about all of the other parents that are going to the same thing at the same time.  I start to think about her future and how will she ever be able to live alone.  5 minutes seems like an eternity.  How is the beautiful, innocent child going through this?  What did she do to get such a life long punishment?  The 5 minutes finally come around and I start undressing her and lube up the Diastat.  I give her the meds and change her diaper and dress her again.  I pick her extremely limp body up into my arms and just rock her back and forth, waiting for some sign of my daughter to appear.  2 more minutes pass and my daughter finally arrives, but very grouchy.  She sounds like she's in pain, but how would I know anything about what she feels, she can't talk.  I take her over to my bedroom and lay her in between my husband and I.  I'm to scared to have her sleep alone.  I call the doctor and see what our next steps are since the meds aren't working.  She said to come to the hospital if she seizes again.

I guess we fell asleep and my husband moved her back to her room.  I wake up at 8 hearing my daughter.  I take her downstairs to play and relax since I didn't get much sleep.  She seems to be doing better.  We want to make sure she gets her regular dose of meds, so my husband takes her to the kitchen to get them ready.  After the meds were given, she seizes again.  I just head right upstairs to get dressed and pack a bag.  I mean how are we not going to be admitted?  We have been admitted every other time but once.  And if the emergency meds aren't working, how can we care for her at home?

No matter how many times I've packed that bag, I still can't remember what I need to pack and it seems like an eternity to get ready.  I've told myself a hundred times that I need to make a mastery list of things to pack and have it sitting in my closet so I know what to grab.  I guess deep down I feel that would make it official.  If I type it up and prove that I'm ready for her to have seizures, than I am admitting that she's always going to have epilepsy.  Isn't it weird that we feel if we speak something or write it down that it makes it official.  Like it's not going to happen if we don't say it.  The truth is, I knew we were going to have problems 2 weeks ago.  Livy was supposed to have a birthday party today because she turns 2 on Monday but I canceled it.  It was mostly because we didn't have a date yet for getting the feeding tube, but I knew she wouldn't get it that soon.  I canceled anyways.  I just knew we were going to be in the hospital.  Isn't weird that as parents we know.  I can usually tell when she is going to have a seizure before it happens.  But I never tell anyone because then she actually will.  But reality is, she had seizures even though I didn't say it.

We are off to the hospital and it's more crowded than usual.  By the time we are called back, there's even more people in the waiting room.  The student doctor comes in to get details about everything and she starts to seize again.  I don't think the doctor ever saw one before.  She asked us what we do when this happens and we tell her just watch.  I think she was scared.  At least Liv comes out of it in 2 minutes this time.  We continue telling her everything and then we are left alone.  We eat in shifts.  Livy sleeps.  It takes a long time for neurology to come in. And to make an already long story short, they took blood, gave us directions, and we went home.  We didn't have to stay overnight.

When I'm at the hospital, I'm very emotional.  I cry every time.  I read post that people leave on facebook while I'm eating in a room full of people and I still cry.  Most of the people there eating are people that work in the hospital and probably have no idea what it feels to be in my position.  I try to hold back the tears but everything is usually overwhelming.

I'm just blessed that my daughter is a healthy girl.  Sure she is a lot more unhealthy than most kids, but she doesn't have a terminal illness and has no big threat for failing organs.  It could always be worse.  I always realize that at the hospital because you usually do see worse.  Sure we have doctor appointments out the wazoo and go to the hospital frequently and have many therapist, but she could have it much worse.  My long term goal for her now is for her to walk.  I think it will take another 2 years, but she loves to be mobile and I really want that for her.  She enjoys her walker the most.  She could spend all day in that.  I guess it gives her the feeling of independence.  Isn't that what we all want for our children, no matter if there's delays, health issues, or nothing wrong at all?  I'm just so blessed to have a child that is amazing and has taught me so many things!

Snow Day!!!

Ok so we got hit with almost 15 inches of snow and there's no where to put it.  That means a day off of work!  Nothing like spending the day with my whole family.  Livy is feeling better and playing all over.  It's great to see her not clinging to me all day.  I can breathe.  Downfall to a snow day, no dance class.  We can't even get off of our block.  A plow truck has not come anywhere near our area.  Hoping for another snow day tomorrow.

Working on Myself

I recently got a self help book for special needs parents.  It's just a reminder of how I have to take care of myself too.  I forget to do that sometimes.  I even have days without food due to worry or being busy with Olivia.  I'm starting to realize that I can't care for her if I don't care for myself.  So I went to dance class last night and I have a goal of spending quality time with my husband every night.  We have always laid in bed watching tv and talking, but now the tv has to get shut off so it's a more valuable experience.  I hoping that I'm off to a good start but even more that I can keep up with giving myself time and care.

Livy is still sick.  I stayed home with her today.  Of course the weather is bad and there ended up being a half day.  At least my hubby is home early.  I like having a day off with my baby.  It makes me wish I didn't have to work.

A Great Help

There's this couple that I talk to occasionally online. We met through a HI group and are now friends on facebook. I sometimes don't know where I would be without them. It's great to talk to a family that has the exact same experiences with raising a child with HI. They only live a state away and I would love to meet them personally sometime. I guess Livy's seizures need to calm down before that happens.

So if this reaches you, I just want to say thanks for everything. You have helped me to see light at the end of the tunnel. And that tunnel gets long at times.

Still Sick

Liv is still sick so I am home with her today. Even I have gotten sick from this. She gives me all of her sicknesses. It's so cold out that I don't want to take her to the doctors.

I ordered some books on raising special needs children and I would love if they came today. I finished a book last week and I'm wanting to read something. If it doesn't come soon, I will have to start a guilty pleasure book.

Hopefully I can work done around the house. It's looking messy lately!

A Rough Night

Livy has a cold and kept waking up last night. She was having trouble breathing. I feel so bad that she gets sick all of the time. At least this morning she seems to be doing better. Since it's so cold outside, it looks like we are keeping her inside today.

Splish Splash

I took Liv swimming at the Kroc Center yesterday. She was crying at first, but when she saw two other little girls playing, she gained confidence. I considered putting her in a mommy and me swim class, but after yesterday, I realized that it might not be the best thing. She can't physically do anything in the water. She won't go on her belly in the water that's only 1 in deep. I figured that I'll keep working with her and sign up for the next one in six weeks. On a good note, she was loving it by the time we got out.

A New Trick

Yesterday during Livy's bath, she clapped. She is always rubbing her hands together, but she finally clapped. You could even hear it.

The neurologist called today and we are to start weening her off of dilantin. I have my fingers crossed for no seizures.

Ready for the Weekend and It's Only Wednesday

Well last night's dance class was great. I never realized how getting away for an hour and focusing on myself for once would produce such a great feeling. I have class again tomorrow.

School is so boring today. I just feel like watching movies with the kids and that's it, but that's not the best thing for them. You really can't have an off day being a teacher, it throws the kids off as well.

Livy has speech today so the day is even longer. She usually has OT but that's canceled, so I was hoping to have a quiet evening off, but no. Speech is coming. Of course I forgot to write it in the book. We sometimes call it the bible because it organizes our lives. Those of you with special needs children know how hard it is to keep all the the therapist and doctor schedules together.

I miss my baby right now. It's lunch and I'm just sitting here. That's when I start thinking about her and how great she is. I will soon be busy with 3 classes in a row and then off to pick up my baby from daycare. For those of you that don't know, she's in a medical daycare. Thank God for that since she is getting a feeding tube.

Well I'm just hoping for a great evening with my daughter tonight. Last night she slept better because she came into our room first. I guess that's just how it's going to be. Yeah she's spoiled. She's my only baby, what do you expect?

Some Time for Myself

I have really wanted to start taking dance classes and I'm starting tonight. We joined the Kroc Center and they have modern dance classes on Tues and Thurs. I finally get to do what I want and worry free. I think this will be a great step forward in me taking care of myself so I can care for Livy. I wonder if I'll be sore tomorrow?

2nd Night

Even more yuck!!! She took about 2 hours to fall asleep and was wide awake at 3:30 am. So we have decided to abort. We are going to continue the routine, but let her fall asleep in our room (like before) or stay in there until 8:15. I think she just realizes that it means its time for bed when you relax with mom and dad in their bed. I guess it just gives me more time for snuggles anyways. She is going to be going through a lot of changes soon and I just want her to be comfortable. I'm sure we will all sleep well tonight.

1st Night

Yuck!!! Well the routine worked well and she fell asleep at 7:45 (earliest yet). But 10:30 came around and she was wide awake. We eventually realized it was due to gas, but she was still up until 12:30. She woke up at usual time 6:30 this morning. Hopefully we are on the right track.

A Bedtime Routine

Since Livy has always had issues with eating, we have allowed her to have pedisure at night. Well sometimes we don't get a lot of sleep. We are really starting a bedtime routine tonight. I hope this goes well. We have been weening her a night, but she got up 6 times last night. It was awful. She's almost 2 and should be sleeping through the night, but her therapist said to go more on the level she is rather than her age. That puts her at about 11 months. Fingers crossed for tonight!

Something Good and Something Annoying

I'll start with annoying so I can end on a good note. Today I was in the bookstore looking for books for parents of special needs children. The lady next to me tells me that my daughter sounds congested. Olivia has sounded that way her whole life. I said to the lady to just leave it alone. As if I don't take care of my daughter. So she tells me that she used to work with children and that she was a pre-school teacher. Like that means you know everything about children. I said that she has a lot of health problems and I was really trying to get out of the conversation, but the lady couldn't take a hint. So then she said that she is probably fussing because she wants to get out and walk around. I'm like she doesn't even walk. Grrr. I just wish some people would mind their own business.
Something good- Last night Livy fell asleep in our bed and out of nowhere she starts laughing. I mean really laughing. She never does that. We have talked to her therapist about why she doesn't laugh and they said that it takes certain muscles that she probably has to work out first. She definitely shows us that she is happy and squeals joyous sounds, but never an actual laugh. It was so cute.

Walking Around Like a Zombie

Yesterday we found out that Olivia needs to get a feeding tube. I knew it would happen if she didn't gain weight, but I just put a lot of hope into her gaining weight. She is almost 2 and weighs the same as a 1 year old.

The silent tears roll down my face when we get into the car. My mind races so fast I can't keep up with it. The music is on and I don't even hear it. I keep wishing my husband would reach over and tell me it's going to be ok. I guess I never considered how he is feeling at the time, only my feelings matter. Not to mention that we had to tell her step-brother and I don't even care how he feels about it at this time. My feelings are the most important.

We get home and I really want to call out of work for the next day. Teaching kids when you feel like a zombie isn't the best way to get them inspired about learning. If only we made enough money so I could stay home with my child. I guess that still wouldn't change the fact that she has health problems.

It's time for bed and I savor every moment with my child before she falls asleep. Just the few days before this she was very clingy to me due to teething and I was completely annoyed. Now I wish I would have savored those moments. Sometimes you just need a break and then something happens that makes you wish you never felt like that in the first place.

It's quiet and the thoughts are uncontrollable. The tears silently drip down my face and onto my pillow. I don't want to wake my husband. Will my child ever be healthy enough for her to take care of herself? Will I go through these roller coaster emotions throughout her whole life? Would it be irresponsible to have another child? What would happen to her if something happened to me? Would I be able to survive if she didn't?

Working in a school can have it's ups and downs when it comes to these situations. I feel horrible and just need to get it off of my chest, but the only people I speak to are children. Surely this is not their burden. They don't need to know all of the complications of my child. I have told them some things to explain why I might need to answer a phone during class. I also find myself getting extremely mad when the children call each other retarded. I used to do the same thing and now it's not a word in my vocabulary.

It's amazing how having a special needs child can change your whole outlook on life. You really see what matters. I can't begin to explain how sick I used to get when I saw her have a seizure. I would dry heave over her body as it lays there turning blue and there was nothing that I could do. At least I've gotten better at watching them. I never realized how difficult parents have it when dealing with a child that has problems. And now I have to reach out to them for support. I guess it's time to start reading some books about special needs children. I need all of the help I can get.

Hopefully they won't schedule her surgery on her birthday!

A Lazy Day

It was so lazy that Livy is still in her PJs. I did eventually get around to going to Target. Livy is teething so of course she is really clingy, but only to me. So I spent most of the day lounging with her on the couch and doing some internet shopping for a new bathroom vanity.

Snowing Again

I was hoping to go to the mall today since I have 3 family birthdays at the end of the month. By the time Drew gets home from Blake's soccer game, I'm sure the roads will be too bad to travel on. Hopefully I can go tomorrow. I can't believe my baby is turning 2!!

Seasons 52

I ate there for the first time tonight. The food was excellent. Even Blake said the dessert was amazing. That has never come out of his mouth before. Livy had a goat cheese ravioli and ate the whole thing! I highly recommend the place.

Evil Boss

Today I was making a flyer for everyone in our school announcing that my family is going to the National Epilepsy Walk in DC and to see if anyone would donate. My boss walks by and says, "I hope that's not school paper because when it runs out, it runs out." Thanks for having sympathy for the condition my daughter has. Yes, I will replace that 60 sheets of paper if that makes your day.

Epilepsy Strikes

Yesterday, Thursday, Jan 7, 2011, my daughter awoke me by crying funny over the monitor at about 2:30 am. She was having a seizure. It lasted for longer than 5 minutes, so we gave her the emergency meds. My husband and I had her sleep in bed with us for the rest of the night. At 7 am, she had another seizure for about a minute. Concerned that we will have to go to the ER, I tell my husband to call out of work. I was already taking the day off to take Olivia to the ENT. Of course the boss gives an attitude about both of us taking off (yes we work together). Olivia seems to do well the rest of the day so we got to take her to the appointment. She had some blood work done to test her thyroid levels. It came back normal. At the hospital, I met a family that has a son a little younger than Olivia that has epilepsy. It's nice meeting people going through the same thing you are. Some people just don't understand how difficult it is having a child with epilepsy.

Quick Info on My Daughter's Life

My daughter has Hypomelanosis of Ito and Turner's Syndrome. Both are rare chromosomal disorders. The HI has caused her to have epilepsy and delays, she also had lazy and and fluid in her ears which were correct with surgery. The TS has caused her to have trouble growing in height and weight. She is only 23 months old.