We Got a Video Monitor

Hello all!!

Today I wanted to share with you something that was recommended to me by a mom of two epileptic children: a video monitor.

When my daughter’s seizures started we were scared to let her out of our sight. This was hard on her since she is extremely independent and it was hard on us because sometimes you just need to be in a different room.

I met an amazing mom who said they had bought a video monitor to help her watch her boys while they were in a different room.

This has been a wonderful buy and totally worth the money.

The monitor we bought has two cameras and you can purchase more, and it has a handheld monitor you can take with you. We have one camera in her bedroom so we can watch her while she sleeps and the other is in her playroom. You can see and hear what is going on, you can also talk through it to the other person, and the camera plays music which my daughter likes at bedtime.

Click here to see the one we bought. (Ours I’d the first one listed, but you can also look through others below it)

The cameras can be plugged in or run off batteries and the monitor has a battery that charges while plugged in.

This has been such a useful thing to have! It is because of this I saw her having a seizure in her sleep one day, without it I would have never known.

If you are looking for a way to have some peace and allow your little one or even an adult you take care of some freedom I highly recommend it!

Until next time,
Jennifer

First Day of Kindergarten

Hey everyone!!

Last week my daughter started kindergarten!  She was beyond excited and we were to.  She was awake and dressed and in our room before 7am ready to go!

Last year when she was really struggling she was having seizures everyday, when they finally stopped she was not herself.  She wouldn’t play, wouldn’t talk, and had trouble with her coordination that made it hard for her to feed herself. She couldn’t even say her abc’s.  I would watch her and just cry.  We didn’t know if this was going to be permanent or if it was from the seizures and the medication.  We didn’t know if she would go back to the way she was and the doctors couldn’t guarantee anything.  I started thinking she would have to be homeschooled and I started searching Pinterest for plans.  Slowly over a few weeks she returned to normal.

When I had to fill out extra forms for school describing her seizures and what needed to be done if she had one, I just cried.  It is so hard to have to entrust her care to others, and know I won’t be right there if something happens.

But, it is something we have to accept.

Now she is in school and loving it, making new friends and learning.

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We continue to seize hope everyday!

Until next time,
Jennifer

One Year Seizure Free

Hello all!

I am excited to say that the end of July brought a wonderful blessing for our family!! Our daughter made it one year with no seizures!

We are so thankful for all the prayers and support that we have been given this past year!  We are so overjoyed that God had protected our daughter and kept her safe.

We still appreciate your prayers and support. We know that she could have another seizure at any time, but we continue to seize hope everyday that goes by without a seizure.

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To celebrate we took a family trip to the beach!!  (This picture was taken after the actual day, but it is my favorite) We had lots of fun and made wonderful memories!

Until next time,
Jennifer

It’s Not Fair

Hey everyone.  Today I am going to share a very hard moment I had with my daughter at preschool.

Since her seizures started my daughter lost some of the freedoms she used to have. She had to be in our sight, we were so scared that she would have one and we shouldn’t be there to make sure she was safe, to time it, to comfort her and take care of her when it was over, the list goes on and on.

At home this isn’t too hard. She just had to go with me downstairs, and wasn’t able to go downstairs by herself. She could still play in another room we would just check on her, listen for her, and call out to get every so often to be sure she was okay. At school this is a little difficult.

Her class is upstairs and in the mornings the kids usually go right to their room and start playing while the teachers get things ready for the day, and talk to parents and other teachers. The hard part is that this means sometimes her teacher isn’t upstairs where she wants to be with her friends. So she wasn’t allowed to go upstairs unless a teacher was up there. I know if she were to start having one another child would more than likely come say something was wrong, but that is scary to me.

One morning she had gone upstairs when there was no teacher up there yet, something happened and one of the girls came and said that my daughter had done something and another kid got hurt. Well the comment was made that she wasn’t supposed to be up there. I went to check it out, the other kid was fine he wasn’t hurt, I don’t know what happened but it was some sort of playing accident.

When I got up there my daughter came to tell me what happened, but immediately two other girls made comments to the effect of “she isn’t supposed to be up here anyway”. My daughter immediately started to cry.

So I took her out to talk to her. She said something that I had thought, but never said to her. She simply said “Momma it’s not fair”. Then she started to cry more. I sat there holding her while she cried and went on about how it’s not fair that her other friends get to go and she doesn’t. She wanted to just play with her friends like all the other kids and it’s not fair that she couldn’t.

My heart broke for her, because I completely understood what she meant. I tried my best to explain to her why I didn’t want her up there without a teacher. (She knows she has seizures and she knows what happens when she has one, as best as we can explain to her)

So we sat there, I held her and we both cried. It was a very hard time for her, she is only 5 and no matter how you slice it….She wants to do all the things the other kids do.

She had missed events last summer because she had a seizure, and because following her two weeks of lots of seizures and medication changes she was not herself. This was the first time she ever expressed her feelings about it.

I really didn’t know what to do or say, so I did my best.

It is so hard to let go and give your child this freedom to be out of your sight. My best advice is to talk to your child. Try your best to help them understand, and listen to them. She has slowly, since then, been allowed to go upstairs. I would just go check on her and listen for her.

She is such a social butterfly and of course, a kid. Kids just want to play and be with their friends.

You have to let go and know that it will be okay, but you can explain to them what is going on and your fears.

I have had my moments watching her during and after a seizure thinking that isn’t not fair. But this has changed our lives, lead me to meet a wonderful family dealing with epilepsy, helped me build my faith in God, and helped me to slow down and appreciate the little things. It has not been easy by any means, but it has strengthened me in ways I couldn’t imagine. I pray that it will strengthen my daughter and we as a family and individually will try our best to help others, raise awareness, and raise funds for the epilepsy foundation.

Well,I don’t know what more to say, but I hope this helps you in some way to deal with any issues you may have.

Until next time,
Jennifer

Trying to be Prepared

Hey all.  So one of the things that we learned is that we have to be prepared when we go in public.  You never know when a seizure will happen, so all you can do is try your best to be ready. I wanted to share one of the things we have done that has let me feel more prepared, I hope that it may help someone who reads this.

Following her first seizure we were given the emergency medicine that was to be administered in case she had a seizure lasting more than 5 minutes, this medicine has to go everywhere with us. That really wasn’t an issue since I carried a massive pocketbook (31s retro metro bag), but after she started having more seizures, we realized we needed to have more things on hand and there were somethings I thought would be helpful so I had to come up with a new idea.

I went and pulled out the bookbag we used to use as a diaper bag and it has worked out well.

In the bag I store what I think are essentials and then other things that are nice to have on hand. (The bag eventually took the place of my pocketbook, simply because I didn’t want to carry two bags) So here is what is in our bag:

1. Emergency mediation for seizure over 5 minutes.
2. Other medication to be used if she starts having cluster seizures.
3. A change of clothes.
4. Baby wipes
5. A towel, I wanted to have something to put over her in case she had one in public, something to shield her a little from strangers.
6. I also have a small blanket, one of her baby blankets, I put it in there too use to have something soft under her head, but I usually end up holding her head so I haven’t used it for that purpose, but following one of her seizures we used it to wrap around her while taking her inside a store to change her.
7. A small first aid kit. You can usually find them in the travel bins of stores like Wal-Mart or Target. They hold bandaids and neosporin wonderfully! And let’s face it, with a child, those are always good to have on hand.
8. I have one of those travel hand sanitizer things from Bath and Body works clipped to a zipper.
9. I try to also keep snacks in it for when we are out.
10. The small packs of tissues, you can get packages of them the cheapest at the Dollar Tree.
11. My bag has the mesh pockets on the outside on each side of the bag which are great for holding my cell phone and a drink.

I also have added small things to keep her busy when we are out, like crayons and small notebooks. Again this took the place of my pocketbook for a long time so I kept everything in it.

Anytime we use something in the bag I replace it as soon as we are home to be sure it is ready for our next trip out.

I recently have really missed carrying a pocketbook, and started using my retro metro bag again and keeping all medication in my purse and a change of clothes in the vehicle we are driving, but I don’t feel as prepared when we are in public this way. So before we left for vacation ordered a new bag from 31 (I really love them!) I think it will work even better, so once I get it and have used it for a while I will let you know!

Well this is something we have done too help ourselves feel more prepared, and I hope it can in someway help you or someone you know. Nothing can ever really prepare you for a seizure, but we have found having our “seizure bag” has helped us have necessary things and offers some security knowing we have what we need.

I hope you are seizing hope everyday in the little things!

Until next time,
Ginger

The 2014 National Walk for Epilepsy

Hola all!! Sorry I am behind in blogging…..just haven’t been making time for it.

But I have been so excited to tell y’all about our trip to D.C. to participate in our first ever National Walk for Epilepsy!!

The walk was on March 22nd.  We went down a few days early so we could enjoy some quality family time, not be rushed for anything, and of course tour our nation’s capitol!! I LOVE D.C.! I was so excited to take my daughter and show her the different sights.

The morning of the walk we road the metro into the city and meet a sweet woman who was also walking, she has epilepsy and has been seizure free for a few years!! Yay!! My daughter has never met a stranger, so of course she instantly starting talking to her.  It was touching to hear her tell the woman that she was walking for epilepsy because it is important and she has epilepsy.  My daughter has gotten to where she will tell people “I have seizures” and then she proceeds to tell then what happens when she has one.  And the sweet woman told her that she had seizures to and that it was okay, and that on that day they were going to see lots of people who have seizures.  Yes, I was emotional!!

We got down to the starting area, they had a beautiful course planned out! It started at the Washington monument, then circled around past Lincoln and the Jefferson, then past a huge park, and back to the Washington to finish up.

At the “walkers village” they had tons of booths set up.  There was information on everything! Seizure dogs, medications, SUDEPS, and tons of free swag! We got reusable shopping bags, ice packs, cinch sacks, shirts, all kinds of things that said National Epilepsy Foundation.  My daughter enjoyed getting her special shirt….regular walkers got white shirts, people with epilepsy got purple shirts.

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One of the most surprising things to me was that at the kids tent they had coloring books set up and of course face painting and tattoos, but when she got her coloring book to bring home I realized it was a story about a little girl having her first seizures and being diagnosed with epilepsy.  They also had comic books about a boy who had a seizure and then these super heroes come and explain to him in a really cool comic book way what a seizure is and how to be careful.

While we were walking my daughter started talking to a man who was there.  He was so nice!  It turned out he was there with a lot of people from his company.  He and the others with him talked to us so nicely.  He asked about what happened, he asked if we were happy with our care, he even said he could help put us in contact with more families near us that are living with epilepsy.  It was just so touching to have a stranger care so much.  That has been one of the most humbling things over the past year. 

Our First walk was so amAzing. We met sweet people, we saw a wonderful family that we have gotten to know over the past year, and thanks to all the generous donations of our friends and family we raised over$500 for the epilepsy foundation!!!! Thank you all so much for your support!

I can hardly wait to do the walk again next year, it is so amAzing to see so many people united and seizing hope for seizure free days!

Until next time!!
Ginger

Here are some pics from our trip!

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During the walk.

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Kaitlyn petting a seizure alert dog.

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Me and my sunshine on the metro

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In front of the white house

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Telling her new friends a secret

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At the Marine Corps museum

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At the National History Museum

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At the Air and Space Museum

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Playing in the woods at the campground

We are so blessed to have gotten to take this trip and show our daughter that she is not alone and there are more people than she realizes having seizures.  We are beyond thankful for everyone’s support and continued prayers.

Our First Year

Hey y’all.  As I write this I am realizing that at this time on this same day last year we were rushing our daughter to the emergency room following her first seizure.

I will never forget finding her on the couch or the look in her eyes when she came out of it, she looked at me as if meeting someone new and simply asked “who are you?” She didn’t know I was her mommy, then she cried for hours. She would cry, then go to sleep, then awake too start crying again.  I remember sitting in the emergency room just crying, we didn’t know what happened or what too do.  I remember hearing our preacher coming by the sound of his boots, I remember the look of concern on her preschool teachers face as she and her daughter came in, I remember the women who came in and hugged me, I remember my husband talking to doctors, I remember feeling so blessed that a member of our congregation was a doctor and he was working that day, I remember the sweet family that stayed with us the whole time we were at the er, I remember Kaitlyns teacher leaving and coming back with a bag of goodies for her which made her smile for the first time that afternoon, I remember a sweet friend braiding Kaitlyns hair, I remember seeing so many people from our congregation show up as soon as services was over too check on us, I remember the long ride in the ambulance too the hospital we stayed in for her first eeg, I remember she talked to the emt the whole way.

I remember so many things from this day last year….but I also realize how much we have learned this last year.

We have learned about epilepsy, the treatment of it, the different medications, seizure alert dogs, different triggers, signs that one may be coming, we learned November was national epilepsy awareness month, we learned that purple is the color for Epilepsy, we learned March 26th is National Wear Purple for Epilepsy Day, we learned that it is hard to explain to a very independent child why they no longer have the same freedoms, we have had to learn to trust others too take care of her and be responsible for her, I have learned that I am a lot stronger than I ever thought I was, but I have really learned how much love others Vann show you.

We have had so much love showed to us by others. Friends have brought us supper, two of my friends offered to drop everything and drive to Knoxville too see is, a sweet friend would come and stay with me so I wouldn’t have to be alone in case something happened, we had people praying for us that we haven’t even met, we got countless cards from people showing their love and concern, some cards were from congregations we have never been to, I have made new friends that I can talk to anytime about everything, I have learned so much about the love and kindness of others.

It has been a long year of so much new for us, but as I look back over the year I am always amazed at the love my family has been shown.

Until next time,
Ginger

March 26th is National Wear Purple for Epilepsy Day.

Hey everyone!! 

I just wanted to do a quick post to let you all know that this week on Wednesday March 26th it is National Wear Purple for Epilepsy Day!

This day was initiated a few years ago by a little girl who has epilepsy living in Canada, now it is a national day! You can click here to read more about that: National Wear Purple for Epilepsy Day

I know it sounds like a small thing and you may think it doesn’t matter, but as a parent of a child who has epilepsy I can assure you it means more than you know!  It was so touching to me when my friends and family wore purple during epilepsy awareness month…..it is a small thing that means so much!

I hope that you will join me in wearing purple on this day to show your support for those living with epilepsy and those who have lost their lives to epilepsy.

Thank you for all your continued love and support!

Until next time,
Ginger!

We Went for a Walk-Without a Stroller

Hey everyone! 

It is amazing how such small things have become big accomplishments.

I love to walk with my daughter.  We live in a wonderful walking neighborhood….not to busy, not to many hills, and it makes a loop that is exactly a mile.  We also live in a wonderful walking town….perfect main street and and other streets.  We used to walk all the time before her seizures started.

Well after her seizures started I was to scared to take her for a walk, much less take her for a very long walk. Slowly I would start taking her for short walks, but I always pushed her in her stroller….that way if something happened I wouldn’t have to carry her all the way back home. And we did go to a festival in town, but we always went with another adult and again I used the stroller.

I know it may sound silly, but I was so scared of her having a seizure while we were walking and then I wouldn’t be able to get her back home or to the vehicle. She isn’t exactly light!

Well this month we have actually went on 3 walks around our neighborhood without the stroller!! It was such a wonderful feeling. I felt so relieved to be able to just let her walk and run and get exercise!

The fear of a seizure is still there, and I carry her medicine and other essentials in a book bag while we walk, but it is just so nice to go out and walk with my little girl and enjoy her.

They say not to let your child’s epilepsy affect your activities or to keep you from doing things…..I think that is insane because it will always affect our activities and keep is from certain things……but you can slowly work past some of the fears and enjoy the little things.

Just remember to simply enjoy every seizure free moment you get because you really never know when one will happen!

So seize hope for the moment and enjoy the little things in life with your child.

Until next time,
Jennifer

She Ran a Race

Hey all!

So I am a little behind on sharing this, but in October my daughter ran in her first ever race!

A girlfriend told me about it and we went and her kids ran and so did my little girl. It was really exciting! She was so eager to run and have fun.

What we didn’t realize though was that with the set up there were times where we couldn’t see the kids unless we ran with them…..well when I realized this I started to really panic.

I don’t like when my daughter is out of my sight. What if I loose sight of her and she has a seizure, what if I don’t realize she’s having one and can’t time it properly, what if she falls in a dangerous place and I’m not there quick enough to keep her from getting hurt, what if I’m not there fast enough to keep her somewhat shielded from any onlookers?……basically the list goes on and on……this may seem like some pointless worrying or overreacting, but once you watch your child go through a seizure you worry A LOT…..all the time. I’m her mom and she’s my world.

Well she ran and my girlfriend filmed her and I ran where I could see her at all times. It was an experience for me! I was so worried and holding back tears all while trying not to let her see it and cheering her on.

There was so much emotion in the moment of her getting her trophy. She was smiling from ear to ear and so proud of herself!

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I don’t know how to even explain the emotions that went through me once she was finished and was standing there with her trophy. I was soooo thankful that she got to have the experience, I was so proud of her not quitting, I was so thankful to get to share this experience with her, and most of all I was so thankful that she didn’t have a seizure.

It has been so hard to let her have some freedom and enjoy things like other children since this started. It is hard when you are always scared. I don’t know how to handle it or what the right balance is.

I just know that I want her to have the same fun that other children have…..I just have to lean how to monitor her and how to give her some space…..and I have to learn to keep my emotions under control, because trust me the tears flowed after the race was done. There was so much relief and so much happiness all at once!

Well until next time!
Ginger Donovant 😉