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6 Days…

Hello all. Jenn here.

It has taken a while for me to post about my daughters 6th seizure….probably because it had been the hardest to cope with.

It was Friday, July 21st. The first day if summer. We had a fun day! We spent time with some new friends playing in their bouncy house, playing in the sprinkler, and having a blast!

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I don’t remember everything we did that day. But when my husband got off from work we had planned to meet him at Lowe’s to get stuff for the house. (We are remodeling)

Well about an hour before he got off, my daughter suddenly had a fever. She was acting completely normal, but she had a temp of 101.2. I naturally started to panic. None of her past seizures had come after a fever, but a seizure following a fever is a common thing and since she is epileptic and this was the first fever she had since this all started I was panicked. I texted my husband and told him she had a fever and we were going to the drug store. I got there and spoke to the pharmacist to see what she could take. The pharmacist said she couldn’t help because she wasn’t comfortable recommending anything and I would have to call her neurologist. Well, it was after 5 on a Friday so I had to call and leave a message for the answering service to page the doc and have him call me.

I left Rite Aid and went to the church building to get my class stuff because I had forgotten it….I forget a lot of things lately. When we got there I texted my sis in law and my best friend and told them what was going on and to please pray because I was upset and didn’t know what was going to happen. Not long after getting there the on call doc returned my call and told me what medicines I could give that wouldn’t affect the seizure medicine.

So we bought that and I gave it to my daughter right when we got in the truck. Then we went home. By the time we got home she no longer had a fever and was her normal happy self. (This all happened in a span of probably 40 minutes-we live close to the building and the drug store). I just figured it was a weird thing that happened. Her temp was normal and she was completely fine.

Once home I don’t remember everything we did. My husband called or texted and told me what time to meet him. When it was time to leave I sent my daughter to get her shoes. As she was going down the hall I heard a “thud”.

I looked and she was laying in the hallway on her stomach with her face and arms up….I naturally panicked. I started to call out to her….falling is not unusual for her…but before I got her name out I heard the unmistakable unforgettable sound she makes during a seizure.

I ran to her and rolled her to get her on her side. It was something I will never forget no matter how hard I try. When she fell she busted her lip and hit her nose. So she had blood running from her nose and mouth. It was one if the scariest moment of my life, words can not explain what I felt watching her have a seizure and watching her lips turn blue while blood was running out of her mouth and pooling on the floor.

I sat there waiting for the seizure to end and singing to her…..while trying to keep myself together. When it was over she just cried. I held her and tried everything to console her, but she just cried and cried. I called my husband who rushed home. She was having some moments during crying where she would stop crying and make the sound she makes during a seizure and some of the jerking movements she makes during a seizure, this was the first time that had happened. So I called a doctor from church and asked his advice, he said if it continued an hour after the seizure to go to the ER. The doctors at church have been such a blessing.

She was still just crying when my husband got home. We sang to her and consoled her until she finally stopped crying. She asked to be held while I walked around so we walked her around the house. Then she asked to sit on the couch and not long after she fell asleep.

The next morning when she woke up she had a bruise between her nose and upper lip, a bruise on her lip, a cut on the inside of her bottom lip, and 2 of her teeth were loose.

We took her out that day for ice cream and went to see Monsters University, but the only showing at that time was 3D and call us over protective but we decided against that for now. So then we went to the playground.

After this seizure the doctor upped her medicine dosage and moved our follow up appt from August to July.

This was the first time she had gotten hurt during a seizure. This was the first time I was alone during a seizure. It was very hard to cope with and get past.

I think the hardest things I have come to realize during the past few months is that you can’t unsee your child having a seizure and you can’t unhear them having a seizure, and you have no control over their seizures. When I close my eyes to try to rest the image of her having a seizure finds its way into my head, I try to replace that with an image if her laughing. My advice is to pray, a lot! I pray for them to stop, but I also pray for her to not get hurt during a seizure. Her getting hurt has been very hard for us. But you also have to lean on others for support. I don’t know how I would have handled this without my husband, my family, my friends, and my amazing church family. We have had some amazing people constantly praying for us, coming to visit us, checking on us, sending us cards, and letting us know to call them anytime day or night.

If you ever have to deal with this I hope you can take my advice and lean on God and others, you can’t get through it alone.

Bye for now,
Jennifer

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6 Days 23 Hours

Hi, Jenn here.

On Saturday June 15th were having a great day!

We went to see awesome friends and celebrate their little mans birthday. We had so much fun! The kids played outside with water and these cool bopper things…..some of us adults played to ;). Then we enjoyed cake, goodies, and talking to everyone.

We then left there and went to get our swim suits and head over to my in laws camper. Kaitlyn napped a little on the way there and woke up once we got her out of the car. Then we put on our suits and went to the pool! Kaitlyn is my little waterbug! She LOVES playing in water in any form so she had a blast.
She played with Daddy, then me, and then new friends she made there at the pool, one guy was so nice he let her jump off his knees…..and she enjoyed watching him do a headstand in the water and go across the pool with just his feet sticking up above water.

Then we got word that my brother and sister in law were headed that way so we went and changed. After we changed my mother in law took me for a ride in the golf cart around the campground, while Kaitlyn stayed with her daddy and Peepaw at the camper. We came back to find her helping him get the fire pit ready for later.

Once my brother and sis and the kids got there us women folk took the kiddos to the playground where we had fun sliding, climbing, and swinging. Then all of a sudden my mother in law said “their starting the train!”. The campground has this cute train car thing that you can ride that goes around the campground……needless to say the kids love it! So we went and got on the train.

The kids were having a blast! It was so much fun! We went around the grounds picking up people, and even in the woods a little! Then the “conductor” asked if we wanted to go on a long ride, about 20 min…..to which we naturally said “YEAH!”. So we went on down a little ways and he stopped right in front of where my in laws camper is…..he had to put gas in the train for our trip. While we were stopped we were looking around and talking then I heard a thud and my mother in law yelled “Kaitlyn!” I turned to see my daughter laying on the floor of the train.

She was having her 5th seizure.

I picked her up and carried her off the train to get her in the grass on her side while I yelled for the time. Someone said 6, and I heard my mom in law say she had her cell, she said it was 6:11. I got her on the ground on her side and sang to her. My husband was there in a flash, I never heard it but later he said that my mother in law had yelled for him and his dad. My husband got her medicine out of the book bag that we take at all times and we sat there consoling her waiting for it to end. One of the moms from the train came and said she was a nurse. It didn’t last long when it ended she said it was 6:12. When my daughter opened her eyes her daddy picked her up, my father in law had brought a blanket so we put that around her to carry her. The train conductor asked if she was okay and we said yes and my mother in law told him she has these. A woman asked if we wanted something cool for head and we said no.

Her daddy carried her back to the camper, and my brother walked with us. We were all consoling her. We took her inside and laid her down. She talked a little, through slurred speech she said “comeone everybody!” I think she thought we were still on the train because that is what we were saying to invite others. We asked her if she knew who we were and she said our full names, then she fell asleep. She slept for awhile.

When she woke up my nephews were inside, it was so cute my littlest nephew was so excited to see her up! He said “Kaitlyns all better”! She played with them a little while, then they had to go because it was late. Then we went back to my in laws house and put her to bed.

This was the first time she had one in public, she had one at church, but they are like family.

We were talking later about God and how he works. I know some people don’t agree, but I see Him working. We were going to be going on a long train ride, but the train had to stop to get gas. Not only was it stopped, but it was stopped right near my in laws camper. I can not imagine if it had happened while the train was moving or if it had happened and we were 20 min away from the camper. I truly believe God works in our lives everyday and I saw it that day.

I talked to her doc office on Monday and they said for now they would leave her medicine as it was because she had only been on the higher dosage for less than a week, but if she had another they would look at it.

Have faith and trust in God, He is there for you and working in your life….wether you see it at the time or not.

Until next time,
Jennifer

4 Weeks and 6 days

Hello everyone Jenn here.

On Saturday June 8th it was a nice day. We woke up, had breakfast, worked in the garden, played, and worked around the house.

My husband and I talked about riding the motorcycle. We haven’t ridden in a long time for not wanting to leave our daughter for fear of her having a seizure. But it had been 4 weeks and 6 days, and we were starting to feel more comfortable. So I texted our babysitter, but found out she was out of town. We then decided that after supper we would go to a nearby trail and ride bikes as a family.

I started cooking supper and heard him on the phone, he had his atv for sale and a guy was coming to buy it. We decided we would go ride bikes after he left. So my husband got them ready. My daughter played and read some of Hop on Pop. The guy was later than he originally said, but that was okay because we got to finish eating. Then we started to think it might be to late to go for a ride.

After supper my daughter and I went to play and the guy came to load up the 4 wheeler. My husband and him were outside talking so my daughter and I continued to play. We read some books and then decided to have a tea party while she ate her dessert. We were having our tea party and talking about planning a tea party for her friends and discussing who we could invite.

I don’t remember every detail, but my daughter stood up and then our fear happened. She went stiff. She was having her fourth seizure. I grabbed her and laid her on her side, with her face titled down in case she vomited. I screamed for my husband on the off chance he could hear me, but he didn’t realize what the scream was. (he thought it was from playing or the dog had gotten one of her toys and she was yelling at him…. That does happens often) I ran through the living room, glanced at the clock it was 7:18, and yelled for him. He came running. He had his phone so we could track the time and he got her medicine. (We have a medicine to give if the seizure last more than 5 minutes) We sat there consoling her and singing to her while she had the seizure. (A friend who is epileptic recommended singing a familiar song she said it helps her) She finally came out of it. It was 7:19. She came out and tried to get up and walk around. She, at that point was no longer having a seizure, but was not aware of what she was doing. I got her and held her as she pulled on my dress and through slurred speech started to try to talk. (slurred speech is normal after a seizure) she kept pointing to her daddy’s shirt trying to say something we couldn’t understand, she couldn’t find the words. He asked if she liked his shirt and she nodded yes. I then asked her who he was and she said daddy, then she started pointing at my face and listing body parts (mouth, nose, eyes, eyebrows). Then we took her to her bed and she fell asleep (this is normal, called post dictal sleep).

There is nothing you can do while someone is having a seizure other than to make sure they are laying on their side with their mouth pointed downward in case of vomit, make sure nothing is around their neck, make sure they are not somewhere dangerous (can’t fall off something, hit something while thrashing, or knock something over on themselves), make sure they can not get injured during the seizure, time the seizure, wait for them to come out of it, and be there to comfort them afterwards. Do not try to hold them down, or put anything in their mouth.

She slept for a couple hours, during which we called/texted friends and family, I requested prayers via Facebook, my husband called the guy that he left standing outside to apologize and explain….poor guy I cant imagine what he was thinking, and we watched her sleep.

She woke up when I gave her her medicine. She was still very groggy and said her face, elbows, and knee hurt, but her speech was back to normal. We kept consoling her and talking to her. I then started trying to get her back asleep, it was after 9. She asked for a bedtime story, I read two pages and she fell over in the bed and said her back hurt and she couldn’t sit up. So I rubbed her back until she fell asleep.

My husband held me while I cried. And we talked about how God works. We had tried twice to leave our house and it never worked. If her babysitter had been available we would have been out riding the motorcycle and she would have had her seizure with the sitter. Or if we had went to ride bikes we would have been on the trail. We were so glad we never left the house. So thankful that God works the way He does.

She woke up the next morning her happy go lucky self, but seemed hyper throughout the day and a little sleepy.

I emailed a women whose info I was given that has two children with epilepsy. She responded and was so helpful and informative to talk to. I will be talking to her more.

My husband went to church in the morning and I in the evening so we could keep her home all day

I know that this is a part of our lives now, and we have to account for that. And we have to be aware of situations and the what ifs. We have to find that balance of protection while not keeping her from doing fun things.

So now we are back to no level of comfort, and more questions. There are things we were planning and hoping for (trips on the motorcycle, counseling at bible camp, weekend getaways, mission trips, another child). They are all on hold and may never happen, but that is okay. I know how I felt when she had a seizure and we were 300 miles away…..I couldn’t handle it if we were in another state or country. Things could change 6 months from now or even a year from now. But right now I can’t leave her, and have no intentions of doing so for more than her being down the hall in bible class or her being with her daddy while I run out. And as for another child, God doesn’t always answer prayers the way we want Him to, this may be the answer to that 2 year prayer.

I am so blessed with the love of family and friends, and the strong support group that we have. My husband was talking to the father of the girl who babysits for us and he said that he was going to go online so they could read up on seizures and what to do. That was so touching, to know that they are willing to educate themselves so that they can be prepared to watch her for us. Her preschool teacher told me she was going to read up on epilepsy. A new friend texted me to check on us and to say we were in her prayers. So many people have been so kind to us. It is really humbling.

Remember that God is in control and He knows. Lean on him and your friends and family through trying times. They are there for you.

Love
Jennifer

Another 4 Weeks

Hola y’all. Jenn here.

Last month I shared a post title “A Long 4 Weeks” that gave you a glimpse of the 4 weeks that started with my daughter having a seizure and ended with her starting medication and being diagnosed as epileptic.

We have been living on pins and needles wondering when she would have another one, I have been sleeping with her just in case. We haven’t left her alone at all. Every time she falls down or gets quiet we worry. She hasn’t been able to sit with anyone else during services or run off to play while we fellowship, she hasn’t be allowed out of our sight…..that has been very hard for her.

I can not even begin to tell you how touched we have been by the care and love that has been showed to us and our daughter over the past four weeks. We have gotten so many cards and calls from friends to check on us and her. We have gotten cards from people we haven’t seen in years just to tell us they are praying for us. One of my aunts had been messaging me via FB to check on her and sent her a card with ice cream money. I got texts and messages from from friends to check on us and to tell us their own battles with seizures. One of my friends even sent me contact info for a woman who has 2 children having seizures for me to have someone to talk to that has/ is going through the same thing, that was so touching and heartwarming! We have gotten cards from members of other congregations that have put our daughter on their prayer list. My daughter has gotten cards with stickers in them from members of a congregation that we have never met. She has gotten cards with money in them. I have had so many women just call to say they are here for me. I have gotten hugs from people that I really needed. She was sent a prayer blanket from a church that put her on their prayer list. She has gotten gifts from friends. We have had so many people tell us that when are ready they would watch her for us to go out. I have been blown away by the outpouring of love and tears shared by friends. We are so blessed with such wonderful friends and family.

My husband and I had our first date night in a long time while she stayed with his parents. We went to watch a movie and he leaned over to tell the couple beside us that we would be checking our phones and we weren’t trying to be rude but our daughter was epileptic and it was our first night leaving her…..we found out that the man had seizures as a child and was able to come off medicine in elementary school and hasn’t had one since. It was so amazing to me that we just happened to sit next to them and have the chance to talk to them!

As of Sunday June 2nd she has been seizure free for a month! Yay for answered prayers!!

We are still nervous, but like the neurologist said the longer we go seizure free the more comfortable we get. But our first trip to the pool I was so nervous! Even though we were in the kiddie pool I was worried the whole time. I know it will get better. I know that God is in control!

I want to thank everyone for their prayers and continued prayers. You have no idea how much it means to hear prayers for her and us, and to hear we are bring prayed for.

I am so blessed that we have had four weeks without a seizure!

Thank you all and if you ever have questions or go through this yourself know that God is in control and I am here for you if you have any questions or need someone to talk to and I will gladly pray for you.

Love,
Jennifer

A Long 4 Weeks

Hey, Jenn here.

As I write this it is 12:32 am and even though I have to be at preschool in a few hours and I know I need to sleep…..I can’t. I am sitting in my daughters bed watching her sleep. I am watching every movement, every twitch, every breath…..yesterday my daughter was diagnosed with epilepsy and tonight is her first night taking her medication…I am scared of how it will effect her….so I am wide awake when I should be asleep.

One Sunday afternoon almost 4 weeks ago now, my daughter was laying on the couch watching tv and I was downstairs doing laundry. When I came upstairs I found her stiff, drooling, eyes half open, and unresponsive. As I talked to her she just kind of sounded like she was humming or groaning under her breath. Whe she finally opened her eyes she looked at me as though I was a stranger and asked through slurred speech “who are you?” To which I said “I’m mommy” she said “your a mommy?” And I said “yes, I’m your mommy”. I then ran to get my husband who was outside mowing, and he came in. By that time she was more awake and knew who we were and her name and age, but her speech was still slurred (very unlike my child) and she kept falling back asleep. We would talk to her and get her awake, but when she was awake she would just cry until she fell back asleep. So we ran to the truck and raced to urgent care who said we had to go to the ER. once at the ER she was given an IV, had a chest X-ray, Head CT, blood work, and a urine test….all of which came back normal. So we were sent to a children’s hospital for 24 hour observation and an EEG. She was quite happy to ride in an ambulance…..she talked that poor EMT’s ear off I think, but that is my little girl. Her EEG came back normal so we were sent home with medicine to give if she were to have another that lasted longer than 5 minutes and were told if she had another she would have to see a pediatric neurologist and more than likely go on medication. But that all children were given one seizure before any medicine was used and it was not uncommon for children to have one seizure.

Well as you can imagine we were on pins and needles watching her.

My husband and I were signed up to counselors at the teen retreat for the local Bible Camp which was 2 weeks after her seizure. Well everything had been fine, so I took her down to stay with her granny. I left her on a Thursday and I texted my husband and my best friend that I was having a very hard time leaving her. Friday at 1:38 I got a phone call I will never forget. I still hear it at least 5 times a day in my head. My mother in law out of breath and panicked calling to tell me my daughter was having another seizure. I don’t remember what my first words were to her, but I know I told her to make sure she was on her side and couldn’t get hurt and to call 911. Luckily my brother in law lives behind them so he was able to come up there and be there with her. I got off the phone and tried my husband who I couldn’t get the first couple of times…..the next minutes are a blur….I know I screamed a lot, cried a lot, screamed some more, and managed to put on a shirt before I ran out of the house. I didn’t know what to do. I was shaking from head to toe. I was flying down the road with my hazards on. Knowing that my only purpose at that moment was to get to my child who was 200 miles away. Once I talked to my husband I called down more. Then I talked to my brother in law who told me she was out of the seizure and I calmed down more. Then I talked to the EMTs who told me all vitals were good and I calmed down more. Then I talked to the preacher and a doctor from our congregation and I calmed down more. Then I met my husband and we drove to our little girl, and I cried the whole way down there. There are not words to describe how my heart felt when we pulled up and I saw my little girl playing with her cousins and my father in law as though nothing had ever happened. Just to see the smile on her face while she rode on his shoulders and run bare foot through the grass…..there are no words for the feeling of holding her and telling her I loved her. We came back home that day.

I called the doc office and left a message that she had another seizure so we needed to get into a neurologist. I was called back with appointments for July and told that was the first openings at 2 different clinics and they would put us on a waiting list for cancellations. I cried she I got off the phone and we discussed talking to doctors at church to see if there was anyway in sooner. This was on a Friday.

Sunday morning in between Sunday school and worship my daughter was sitting in her daddy’s lap and had just given him a hug when she leaned backwards…we thought she was playing. Then we saw her eyes…it was a look of surprise and then fear…then her whole body went stiff…she was having her third seizure. I still see her like that so many times during the day, it is not something you forget. We yelled for a doctor….I meant to call one but said another, but he was there fast. I grabbed my phone to check the time and grabbed her medicine for if it lasted longer than 5 minutes, my husband had checked his watch and was still holding her. The doctor walked us out to the foyer and we layed her on the couch….another member that’s a doctor was there….I am still not sure how he got there so fast. They watched her and talked us through it and made sure that others gave us space. I don’t know who was with us when we first went out there, I know there were people there because one of the doctors asked them nicely to give us some space. I do know that I was knelt down so I could be as close as possible to her and that I was scared out of my mind and crying and one of the women knelt behind me and hugged me and put her hand on my shoulder and that meant more than I could ever express to her. I know that it lasted about a minute and a half and she opened her eyes and one doctor asked her who I was and it took a few seconds, but through slurred speech she said “Mommy”. Then she fell asleep. Then the doctors asked us questions and talked and reassured us she was fine and she would sleep because that was normal after a seizure and that it was unacceptable to wait until July to see a neurologist. One of them said he would call our doctor after services and get things moving because she needed to get in.

On Tuesday we went to the pediatric neurologist and he answered all our questions and
told us that she was epileptic and we needed to start her on medicine. He explained the medicines and the side effects and was very helpful.

The drug store had to order her medicine so tonight is her first time taking it. She took it before bed and I am not sure if it was the medicine or just that she has had a long few weeks but she was very sleepy tonight and as I type this she is sleeping soundly….although tossing and turning, but she’s a wiggler or mover (how she describes herself when she is asked to be still).

I think I write this as an outlet for all that has been in me over the past month, but I have really come to realize something. Gods providence is amazing. I had been thinking about this and my mother in law and I talked about it today. We were so blessed with our move to this town and this congregation.
– I am blessed to get to be a stay at home mom now, I had a hard time handling working while Kaitlyn was healthy…..there is NO WAY I could have handled leaving her knowing that she could have a seizure at any moment.
-I am blessed that Kaitlyn goes to preschool at our church. I help out there a few days a week so I get to be with her and not leave her. They also are my friends and sisters and understand that I don’t want to leave her and they are okay with me staying there even when I am not working. That way she gets a sense if normalcy and I still get to be with her.
-We are blessed with doctors in our congregation who have helped us with advice in the ER, over the phone, administered to her and us during her third seizure, helped with getting in to a neurologist, and have told us they are there if we need anything at all.
-We are blessed with a sister in our congregation who is epileptic. So she has lots of knowledge, experience, and understanding to share.
-I am blessed with a congregation that has kept us in its prayers, sent cards, gifts, visited us at home and in the hospitals, called, texted, offered to be there to listen, been there with hugs, the list goes on and on.
-Since the first seizure we haven’t let her out of our sight for very long…this has led to some unexpected bonding time. She sorted laundry all by herself and had fun! We play more. We color more. We are together more.
-We have wanted a second child for a couple years now, and I am always disappointed when it doesn’t happen, but the doctor feels the seizures are genetic…from me….what if I passed that on to another child? What if we had a baby and I was distracted with the baby and Kaitlyn had a seizure and I wasn’t there to get her to a safe place?

I would much rather she not be epileptic but she is, now we know, now she is on medication, and now we can move forward. But moving forward is so much easier knowing that God is in control, and knowing that he has given us such a tremendous support system between our family, friends, and our brothers and sisters in Christ. No matter how sad you may be, no matter how it may seem that things aren’t going your way, no matter how scared you are, no matter what……remember God is in control and working in your life. You may not see it today or tomorrow, but one day you will.

Bye for now!

Jennifer