6:41am, I am up showered, dressed, making coffee. I told Tony I'd wake him in 10 minutes so he could get ready. We are going down to one of the pediatric neurologists at Arnold Palmer for evaluation and then to make a plan for treatment. Our appointment is at 9:45, it is about an hour away.
Yesterday was a wonderful day. Sophi and Troy played outside for about 3 hours before nap time and it was great watching her run and jump and scream and dig in the dirt. We are so very blessed. A lot of times when children have as many seizures as Sophia has had they also have lots of developmental/behavioral/physical delays. When I talk to someone on the phone about Sophi's medical history they will ask me about her developmental level- I'm so joyous and thankful to be able to say that she is meeting every milestone and then some. :)
We still have some difficult moments, as I am sure most parents of children with epilepsy will find. She was very afraid yesterday. She was nervous that she was 'going to have one of those headaches again' It is hard to explain this to a child. We do the best we can and use resources when they are available to help explain it to her, but yesterday even our normal explanations of what happened were frightening to her.
Tony and I were talking after the kids were in bed, about Troy. Troy just slept through the whole ordeal. The fire trucks and ambulance (all which where right outside his window), Sophi screaming when they pricked her foot for blood sugar test, all of it. We wondered about how Troy will handle all of this when he is older and doesn't sleep through an ordeal. Will he be scared? We have read a lot about the affects of epilepsy on the family, siblings, parents, grandparents.. I wonder how Troy will handle all of this. As it does affect us all. Troy wandered around the house yesterday morning. He knew something was wrong. Sophia was suffering from a terrible headache and was laying in the dark in my room with Tony. Troy was playing quietly by himself. I was on the phone making doctor appointments and trying to get in a functioning mode. And all the meanwhile, there was Troy. Quiet and content playing with his racecars. He occasionally would walk over to me and show me a car and then walk back to his racetrack. Sweet boy.
We really did think that she was growing out of this, and she could be, but we didn't expect this seizure. We really didn't weren't expecting it. My friend Kelly said, "you just weren't in epileptic mom mode." Sounds funny, but there is an 'epileptic mom mode'. Having the medication a finger tip away, knowing where the clock is to time the seizure, checking every sign that you know to check to make sure your child is ok, remembering which direction her eyes were looking. This is all part of 'epileptic mom mode'.
Tony installed a new video monitor in her room last night. In her search for independence she broke her last one. She blamed it on Troy and said that he didn't like that 'Sophi Movie'. I always called it a monitor and she would scream 'no it's a camera!' Oh, independant child.. Sophi was very nervous watching him install a new monitor she would yell for him to 'get out of my room with that'. We watched her on it and for a while she stared back at it. I'm surprised she wasn't waving and sticking her tongue out at us.
She was scared to go to sleep. She cried and said she didn't want to firefighters to come again. She didn't want all the cords on her. She said she didn't want the doctor in the hospital to choke her again (I don't know why but they did a strep test - and it made her gag). I told her we were going to the doctor in the morning and she was really upset about that. She used to love doctors and visiting the office and the hospital- I guess three years of seizures, tests, and doctors would do that to you. I stay positive to her and encourage her but really I feel the exact same way she does!
Oh, here is a really sweet and funny thing to end this blog. Sophi was really attached to her pacifier yesterday (as she is everyday after a seizure). I was so glad that the 'boogie fairy' didn't come and take it away yet. We all needed her to have it this time. Anyway, she was laying on the beanbag watching Bindi the Jungle Girl and Troy was laying on top of her, staring in her eyes, then he'd lean over and kiss her pacifier. Over and over and over and over again, he would lean back look in her eyes and lean in and kiss her. She said "he's kissing my boogie!"
Tuesday, March 31, 2009
Monday, March 30, 2009
not again.. another seizure
I am so sad.
Last night Sophia had a pretty serious seizure. I put her to bed around 8pm, she had said that she had a headache, but I figured since Tony had been suffering from sinus headaches over the past few days that maybe she was being a little copy cat. Tony said she felt warm when he went to kiss her good night. I check her temp and it was 99.0, I really didn't worry about it because she was under the blankets and I figured she was just warm. I went back up to check on her about 9:30 because I was getting tired and wanted to check her temp before I went to sleep. She was still awake and felt about the same as before. When I walked out of her room she said, "mommy, come back and check on me in a little while ok?" I said ok and went down stairs and fell asleep. Tony was awake watching a show about sharks. He woke me about 1045 and said he heard a noise in her room. I run up stairs to check on her and at first I thought she was sleeping. She was face down on her pillow, but I noticed her hand was jerking, I pushed her onto her side and she was seizing. I picked her up, carried her down stairs, told Tony she was seizing. We took her into the kitchen and laid her on the cool floor, she was warm, but not hot, we got dishcloths and cooled her off. This seizure lasted a long time. I had the diastat but it has been so long since we have had to use it(about 8 months), I didn't know if it was expired or not and I couldn't find the expiration date... I had no contacts in and was kinda' disoriented from sleeping. I was timing the seizure and it was about 8 minutes since the time we found her and she was still seizing so I decided to just call 911. She was grey and her lips were purple, we were reminding her to breathe but her breaths were short and shallow. The ambulance got there and they started her on oxygen, the seizure stops but she was postictal -postictal state is the altered state of consciousness that a person enters after experiencing an epileptic seizure, such as those occurring with frontal lobe epilepsy. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine and other disorienting symptoms. Additionally, emergence from this period is often accompanied by amnesia or other memory defects. It is during this period that the brain recovers from the trauma of the seizure. She stayed postictal for a long time, she had her fists clinched up by her head (like a baby) she was grinding her teeth and she wouldn't look at us. Her eyes were fixated to the left, she wouldn't blink, wouldn't talk, wouldn't respond. She stayed like this for a very long time. The firefighter was asking me to have her speak, ask her the dog's name. She wouldn't I would ask her if she wanted the dog, if she would tell the firefighter the dog's name, anything to get her to talk.. nothing. Then once the ambulance got there she was still postictal she wouldn't move her arms but her eyes would look around the room and her jaw was clinched but she would mutter "uhhuh" and "nah" for yes and no. At one point they stuck her foot for a blood sugar test and she screamed "Daddy" that was great to hear but she was still very much not 100% They EMT asked me if she was always like this, if this was "her normal" I said no. They said ok, we are going to the hospital. So off we went. She was posictal the whole 25 minute trip to the hospital. Then when they opened the back of the doors to the ambulance she opened her eyes, looked around and said "We are at Mimi's work everyone!" SOPHIA!!!! I can't believe it. Then though, she did get a bit disoriented, talking about the weather and saying that she was upset that it was spring time.. at least she had words. By 130am she was much more coherent and was asking for her Mimi and she wanted to go home. Mimi got there and took us home. My poor sweet baby. It was beautiful to watch her this morning driving her motorcycle around the driveway and coloring with chalk and kicking her soccer ball. Praise God! We are going to head to the doctor tomorrow and to Children's Hospital to figure out what is going on with her. We are probably going to have some MRIs, EEGs, and CAT scans- to get up to date especially since it has been so long and she is currently on no medication. Please keep her in your prayers. Thanks.
Last night Sophia had a pretty serious seizure. I put her to bed around 8pm, she had said that she had a headache, but I figured since Tony had been suffering from sinus headaches over the past few days that maybe she was being a little copy cat. Tony said she felt warm when he went to kiss her good night. I check her temp and it was 99.0, I really didn't worry about it because she was under the blankets and I figured she was just warm. I went back up to check on her about 9:30 because I was getting tired and wanted to check her temp before I went to sleep. She was still awake and felt about the same as before. When I walked out of her room she said, "mommy, come back and check on me in a little while ok?" I said ok and went down stairs and fell asleep. Tony was awake watching a show about sharks. He woke me about 1045 and said he heard a noise in her room. I run up stairs to check on her and at first I thought she was sleeping. She was face down on her pillow, but I noticed her hand was jerking, I pushed her onto her side and she was seizing. I picked her up, carried her down stairs, told Tony she was seizing. We took her into the kitchen and laid her on the cool floor, she was warm, but not hot, we got dishcloths and cooled her off. This seizure lasted a long time. I had the diastat but it has been so long since we have had to use it(about 8 months), I didn't know if it was expired or not and I couldn't find the expiration date... I had no contacts in and was kinda' disoriented from sleeping. I was timing the seizure and it was about 8 minutes since the time we found her and she was still seizing so I decided to just call 911. She was grey and her lips were purple, we were reminding her to breathe but her breaths were short and shallow. The ambulance got there and they started her on oxygen, the seizure stops but she was postictal -postictal state is the altered state of consciousness that a person enters after experiencing an epileptic seizure, such as those occurring with frontal lobe epilepsy. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine and other disorienting symptoms. Additionally, emergence from this period is often accompanied by amnesia or other memory defects. It is during this period that the brain recovers from the trauma of the seizure. She stayed postictal for a long time, she had her fists clinched up by her head (like a baby) she was grinding her teeth and she wouldn't look at us. Her eyes were fixated to the left, she wouldn't blink, wouldn't talk, wouldn't respond. She stayed like this for a very long time. The firefighter was asking me to have her speak, ask her the dog's name. She wouldn't I would ask her if she wanted the dog, if she would tell the firefighter the dog's name, anything to get her to talk.. nothing. Then once the ambulance got there she was still postictal she wouldn't move her arms but her eyes would look around the room and her jaw was clinched but she would mutter "uhhuh" and "nah" for yes and no. At one point they stuck her foot for a blood sugar test and she screamed "Daddy" that was great to hear but she was still very much not 100% They EMT asked me if she was always like this, if this was "her normal" I said no. They said ok, we are going to the hospital. So off we went. She was posictal the whole 25 minute trip to the hospital. Then when they opened the back of the doors to the ambulance she opened her eyes, looked around and said "We are at Mimi's work everyone!" SOPHIA!!!! I can't believe it. Then though, she did get a bit disoriented, talking about the weather and saying that she was upset that it was spring time.. at least she had words. By 130am she was much more coherent and was asking for her Mimi and she wanted to go home. Mimi got there and took us home. My poor sweet baby. It was beautiful to watch her this morning driving her motorcycle around the driveway and coloring with chalk and kicking her soccer ball. Praise God! We are going to head to the doctor tomorrow and to Children's Hospital to figure out what is going on with her. We are probably going to have some MRIs, EEGs, and CAT scans- to get up to date especially since it has been so long and she is currently on no medication. Please keep her in your prayers. Thanks.
Saturday, March 28, 2009
Wednesday, March 25, 2009
Crazy Child
Troy has turned into a looney tune! We are pushing two hours now that he has been in his bed jumping, shouting, singing, banging his bottle on the rails, throwing his blankets on the ground. He is insane! Naptime isn't a battle it is a free for all for him. He is nuts. Not crying, screaming or upset in the least.. but acting like a crazy person and keeping poor Sophia awake. It must be something in the moon, or the tides... I can almost gaurentee during a full moon he sleeps great. New moons are like new energy for him and he won't sleep and acts like a nut. Last night he was up from 130-5am, singing and shouting in his room. Like indian chats or something. He is crazy! I can't take it.. Lord just let him sleep!! For the love of God, let there be rest in this house!!!
Friday, March 20, 2009
new hobby taking up my time <3
I starting making bows. I got sick of paying $10 for a hairbow that I know I could make... so I started. Not- as easy as I thought.
This was my first one, yikes!! Really not as easy as I thought.
So, I practiced, looked online and found website after website and I am proud to show... the latest bow! LOVE IT!
I love them. I want to keep making them!!! Good thing Sophia loves bows! Because she is going to have a lot of them.
Sorry for not being around much, but I have been busy busy with every free moment making bows! ;)
Tony's birthday is this weekend. The big 3-0!!! We are going to have family over on Saturday then Sunday our church is having a family day lunch so we will be busy then too. I do plan on catching up on all of your blogs- I miss you guys ;)
This was my first one, yikes!! Really not as easy as I thought.
So, I practiced, looked online and found website after website and I am proud to show... the latest bow! LOVE IT!
I love them. I want to keep making them!!! Good thing Sophia loves bows! Because she is going to have a lot of them.
Sorry for not being around much, but I have been busy busy with every free moment making bows! ;)
Tony's birthday is this weekend. The big 3-0!!! We are going to have family over on Saturday then Sunday our church is having a family day lunch so we will be busy then too. I do plan on catching up on all of your blogs- I miss you guys ;)
Wednesday, March 11, 2009
attributes
Tony and I have really been struggling with Sophia's 'attitude' in the past few days. So I printed and we read an article about 'spirited' children, which my wonderful daughter is indeed a spirited child. After reading it we decided to make a list of ten things attributes of our children. We used this part of the article to inspire us..
This list was to take things that we often say with a negative connotation and say it as a positive attribute. I would encourage ALL parents to do this. It was fun and it really gave us a good outlook to what is sometimes a difficult part of our kiddo's personality.
Here is our lists-
Sophia
1. sensitive
2. caring
3. protective
4. intelligent
5. good helper
6. independent
7. artistic
8. friendly
9. imaginative
10. articulate
Troy
1.loving
2. energetic
3. fun
4. silly
5. strong willed
6. caring
7. inquisitive
8. physical
9. happy disposition
10. loves the outdoors
When we wrote it out like that it's hard to think that any of these attributes could ever be a negative.
I love my kids!
This is an excellent exercise to do as parents! I am going to type these words and hang them in their bedrooms, that way my darlings will have lots of positive words around them while they sleep and play :)
OK- your turn... I want to see your lists!!!
Most important of all, examine the way you describe your toddler. The "wild child" who is "stubborn," "exhausting," and a "crybaby" is also a spirited child who is persistent, energetic, and sensitive — all traits that are admired in adults. Use positive labels when discussing your child with relatives and teachers, and they'll come to see his wonderful attributes too.
And with increased self-esteem, your spirited child will want to learn to behave well. You'll know you're on the right track when your 3-year-old announces to Grandma, "I had lots of energy today!" instead of saying, "I was a bad boy." When you focus on your child's positive features and strengths, it changes your behavior, and that in turn changes your child's behavior.
This list was to take things that we often say with a negative connotation and say it as a positive attribute. I would encourage ALL parents to do this. It was fun and it really gave us a good outlook to what is sometimes a difficult part of our kiddo's personality.
Here is our lists-
Sophia
1. sensitive
2. caring
3. protective
4. intelligent
5. good helper
6. independent
7. artistic
8. friendly
9. imaginative
10. articulate
Troy
1.loving
2. energetic
3. fun
4. silly
5. strong willed
6. caring
7. inquisitive
8. physical
9. happy disposition
10. loves the outdoors
When we wrote it out like that it's hard to think that any of these attributes could ever be a negative.
I love my kids!
This is an excellent exercise to do as parents! I am going to type these words and hang them in their bedrooms, that way my darlings will have lots of positive words around them while they sleep and play :)
OK- your turn... I want to see your lists!!!
Monday, March 9, 2009
i feel like the long lost blogger
Doesn't that happen sometimes when we get so busy then you come and look at your blog site and say.. oh my.. it's been so long.. well, it happens to me :)
So- time to update-
Troy ended up winning a $100 gift card for his red shoe dancing contest. Awesome right! But what is a 1 year old going to do with that? I am working a deal on craigslist to trade one of the two $50 cards for a play yard for the yard so that I can stick Troy in it while we are outside.. lol, it's big enough that I can put the slide in it and a few toys so he can play and not run into the neighbors yard after there dog. They have a nice, but big dog that is chained up outside and it barks and barks at the kids, wanting to play, but I am afraid that Troy would just walk right up to it and end up getting hurt. So- that's something we could use for Troy. The other $50 card I am giving to myself for Tony and I to go out on a hot date :) I mean if it wasn't for us Troy would have never been on this planet to win the giftcard in the first place. :)
Tony and I went camping this weekend.. here are some pictures.
And.. on Thursday the kids got two new pets. Sophia's in the white and grey one, she named her "Peas" and Troy's is the grey one, he named his "Dew". They love them! :)
Well, hope everyone is having a good week so far, I'll try and catch up on all my blog reading this week. :)
So- time to update-
Troy ended up winning a $100 gift card for his red shoe dancing contest. Awesome right! But what is a 1 year old going to do with that? I am working a deal on craigslist to trade one of the two $50 cards for a play yard for the yard so that I can stick Troy in it while we are outside.. lol, it's big enough that I can put the slide in it and a few toys so he can play and not run into the neighbors yard after there dog. They have a nice, but big dog that is chained up outside and it barks and barks at the kids, wanting to play, but I am afraid that Troy would just walk right up to it and end up getting hurt. So- that's something we could use for Troy. The other $50 card I am giving to myself for Tony and I to go out on a hot date :) I mean if it wasn't for us Troy would have never been on this planet to win the giftcard in the first place. :)
Tony and I went camping this weekend.. here are some pictures.
And.. on Thursday the kids got two new pets. Sophia's in the white and grey one, she named her "Peas" and Troy's is the grey one, he named his "Dew". They love them! :)
Well, hope everyone is having a good week so far, I'll try and catch up on all my blog reading this week. :)
Tuesday, March 3, 2009
Red shoe wearing, feet tapping, dancing, wild boy!
Well, two sick kiddies have kept me busy! I think they are down for the count -napping that is. LOL
Anyway, Saturday we went to 'A Day of Dance' it is like a nationwide day of dancing for women's health. It's like a big health expo for women with dancing. It is so much fun. The icon for the event is a red high heel. They had a red shoe contest, and Troy just so happened to be wearing his red Lightening McQueen crocs. I entered him in the competition.. I felt like such a pagent mom. LOL But guess what, he won! First place... I still don't know what he won. I guess they mail the prizes. It was so cute. He LOVES shoes. "Shoe" was actually Troy's first word. And his favorite shoes, are his Lightening McQueen shoes, so how perfect is that!? He was dancing around the stage, saying "shoooes shhhoooes shhoooes" kicking his little feet. It was perfect. Troy and like 20 other women, hysterical!
Well, I'm going to eat some icecream- great for watching my weight, huh!? :)
Anyway, Saturday we went to 'A Day of Dance' it is like a nationwide day of dancing for women's health. It's like a big health expo for women with dancing. It is so much fun. The icon for the event is a red high heel. They had a red shoe contest, and Troy just so happened to be wearing his red Lightening McQueen crocs. I entered him in the competition.. I felt like such a pagent mom. LOL But guess what, he won! First place... I still don't know what he won. I guess they mail the prizes. It was so cute. He LOVES shoes. "Shoe" was actually Troy's first word. And his favorite shoes, are his Lightening McQueen shoes, so how perfect is that!? He was dancing around the stage, saying "shoooes shhhoooes shhoooes" kicking his little feet. It was perfect. Troy and like 20 other women, hysterical!
Well, I'm going to eat some icecream- great for watching my weight, huh!? :)
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