Madison is doing better but still not completely herself.
Her eyes are glazed and sometimes she looks like a drunken sailor. She is much grumpier than usual and gets tired very quickly. Jeff and I think she is getting chubbier which is very possibly a side effect from the medication. It's funny they don't know when and whether the medications work, but regardless the side effects are there.
We are starting to think that is not the right medication for her. But what is? Every medication will have its side effects some better some worse.
She has a fourth tooth coming- which is another reason why she hasn't been feeling all that well. and for all we know the pain or a slight fever we didn't detect could have triggered the seizures last week.
She is enjoying exploring new foods. She has already had a french fry and some mashed potatoes. She really enjoyed her first bagel ( picture to come).
I feel lost. I hate seeing her like that. I am not sure what to do because there is nothing I can do. I keep thinking how her life is going to be- what are the things she wont be able to do, how is going to be different, how is she going to handle it.
At this point I just want her to be happy. I want to see my little girl giggle and laugh like she used to be. That's the only thing I can try to do- make sure she has the right attitude and is happy with who she is.
E
Monday, September 29, 2008
Friday, September 26, 2008
and it keeps on going
it actually never stops.
Madison 's been having a rough couple of days.
After her Seizure on Wednesday the neuro upped her dose of Trileptal to 3cc twice a day.
I was expecting her to be grumpy and throw up but she was actually doing pretty well.
Until late last night when she threw up while asleep- that was already scary since it was only luck that we were in the room with her. The thought that she could have choked still bugs me. I will now definitely have trouble leaving her alone. Poor thing had pureed veggies coming out through her nose.
Fortunately daddy always knows how to make her feel better so they took anice hot bath together and she felt better.
She threw up once more but was obviously doing better. The question was whether to give her another full dose of Trileptal. The doctor said yes, but we decided on giving her less and then giving it to her again earlier than usual.
She actually slept better than she had in days, woke up around 5 am and we gave her 2cc ( the dose remained the same but we'll be giving ti her 3 times a day now instead of 2)
At 7:16 I woke up from her jerky movements. She was having another seizure- full body and face. We gave Diastat right away and she stopped seizing at 7:24.
she has been out of it all morning and gets tired very quickly but is recovering pretty well.
She learned to clap her hands this week so whenever she wants to make me happy she claps her hands and smiles at me.
She is such a strong little girl. The seizures and the tons of medications never make her want to stop moving and playing and be around people.
She is my sunshine
E
Madison 's been having a rough couple of days.
After her Seizure on Wednesday the neuro upped her dose of Trileptal to 3cc twice a day.
I was expecting her to be grumpy and throw up but she was actually doing pretty well.
Until late last night when she threw up while asleep- that was already scary since it was only luck that we were in the room with her. The thought that she could have choked still bugs me. I will now definitely have trouble leaving her alone. Poor thing had pureed veggies coming out through her nose.
Fortunately daddy always knows how to make her feel better so they took anice hot bath together and she felt better.
She threw up once more but was obviously doing better. The question was whether to give her another full dose of Trileptal. The doctor said yes, but we decided on giving her less and then giving it to her again earlier than usual.
She actually slept better than she had in days, woke up around 5 am and we gave her 2cc ( the dose remained the same but we'll be giving ti her 3 times a day now instead of 2)
At 7:16 I woke up from her jerky movements. She was having another seizure- full body and face. We gave Diastat right away and she stopped seizing at 7:24.
she has been out of it all morning and gets tired very quickly but is recovering pretty well.
She learned to clap her hands this week so whenever she wants to make me happy she claps her hands and smiles at me.
She is such a strong little girl. The seizures and the tons of medications never make her want to stop moving and playing and be around people.
She is my sunshine
E
Thursday, September 25, 2008
A new one...
We had our first seizure while we were outside yesterday. I've been fearing this day would come and like everything inevitable it did.
I was walking down the street arguing on the phone with Daddy when I noticed that she was staring at me, which is not like her. Sitting in the stroller her head was turned up and back toward me, as if asking for my attention. Her body was still, there were no convulsions although he right arm was rigid, holding on the water bottle strap. The only sign that was having a seizure was that she was blinking rhythmically and not responding to me calling her name.
Of course I freaked out and asked Jeff to bike over. Pushed the stroller to the side of a building, lied her down on her right side and undressed her to give her the diastat. I didn't know how long she had been seizing and certainly wasn't going to wait another 5 min.
I soon as I pulled out the diastat I saw the blinking was slowing down and the seizure stopped. I am pretty sure it stopped on its own - the diastat never wrks so fast.
Of course she was a drunken sailor for the rest of the night but didn't want to go to sleep right away. Finally around 8 she passed out. Until about 12:30 when she decided it's time to play- mommy was already exhausted so daddy took her in the other room to tire her out as well. She was restless again for the rest of the night. I believe that the Trileptal is giving her nightmares. Although some people say it actually gave them night terrors. In either case our family is sleep deprived again. She's been sleeping now since about 8:30 and I just woke up.
We love her so much.
E
I was walking down the street arguing on the phone with Daddy when I noticed that she was staring at me, which is not like her. Sitting in the stroller her head was turned up and back toward me, as if asking for my attention. Her body was still, there were no convulsions although he right arm was rigid, holding on the water bottle strap. The only sign that was having a seizure was that she was blinking rhythmically and not responding to me calling her name.
Of course I freaked out and asked Jeff to bike over. Pushed the stroller to the side of a building, lied her down on her right side and undressed her to give her the diastat. I didn't know how long she had been seizing and certainly wasn't going to wait another 5 min.
I soon as I pulled out the diastat I saw the blinking was slowing down and the seizure stopped. I am pretty sure it stopped on its own - the diastat never wrks so fast.
Of course she was a drunken sailor for the rest of the night but didn't want to go to sleep right away. Finally around 8 she passed out. Until about 12:30 when she decided it's time to play- mommy was already exhausted so daddy took her in the other room to tire her out as well. She was restless again for the rest of the night. I believe that the Trileptal is giving her nightmares. Although some people say it actually gave them night terrors. In either case our family is sleep deprived again. She's been sleeping now since about 8:30 and I just woke up.
We love her so much.
E
Tuesday, September 23, 2008
Sunday, September 21, 2008
oooohhhhhhmmmmm
Everything seems to be just fine these days.
Madison hasn't had a seizure in more than a week. Last weekend was tough because daddy was away and she just had a seizure on Friday. so she wasn't feeling very peachy. Grandma came over and Madison welcomed her with a vomit volcano on the shoulder. she felt much better after that- Madison not grandma.
We are now joyfully exploring finger foods and she loves gumming everything from cheerios to pears to prunes.
We went back to our mommy and baby yoga class after missing many of those. she got to see her old friends Maggi and Leora and they played together ever so nicely. Maggi pulled Madison's pants down while trying to pull herself up on her and Madison went for another Mammy's boob.
LAst night I went to a Hebrew chanting class while daddy stayed home with her and had to figure out how to grow a boob- he is very inventive, I don't worry about him much.
so now mommy has found her long lost inspiration for yoga, chanting and meditation and looking forward to more of that experience that brings some sense into her chaos of a life.
E
Madison hasn't had a seizure in more than a week. Last weekend was tough because daddy was away and she just had a seizure on Friday. so she wasn't feeling very peachy. Grandma came over and Madison welcomed her with a vomit volcano on the shoulder. she felt much better after that- Madison not grandma.
We are now joyfully exploring finger foods and she loves gumming everything from cheerios to pears to prunes.
We went back to our mommy and baby yoga class after missing many of those. she got to see her old friends Maggi and Leora and they played together ever so nicely. Maggi pulled Madison's pants down while trying to pull herself up on her and Madison went for another Mammy's boob.
LAst night I went to a Hebrew chanting class while daddy stayed home with her and had to figure out how to grow a boob- he is very inventive, I don't worry about him much.
so now mommy has found her long lost inspiration for yoga, chanting and meditation and looking forward to more of that experience that brings some sense into her chaos of a life.
E
Saturday, September 13, 2008
Censorship
This blog was started for fun - for me to write my experience during pregnancy and then when Madison was born, so that I can go back and read and laugh and one day she can read it too. It was so I can keep my friends can keep up with the fast growing Madison and our daily adventures. It wasn't so that my parents can hardly understand what I am saying and then pester me questions and phone calls.
But hey, here they go ruining it all again. so I am going back to the original title "My buldging belly" it may not be spelled right but that was not the point in the first place. I felt that there should have been a "d" there to emphasize the bulging and since it is my blog it is my spelling too. I hardly ever write any more because before I write I have to think what my parents would think and what are they going to call and ask. So many events go unrecorded. If that is not Censorship I don't know what is. So here we are back to the original title and hopefully back to the original idea- to just write To write because it feels good not because someone would read it.
and the harsh truth is there are hardly any friends left to update too. No one seems to give a crap any more- no one calls, no one emails, no one says how are you, do you need someone to talk to, do you need a hug.
But that's fine because when hard times hit only true friends hang around.
And here we are hard times are here but there is no one around. and the silence is deafening. It Screams. You are alone.
And that's fine too- after all haven't I been alone all my life. There were very few passers by who stuck around long enough for the bad times and eventually they all went their way too. But I am still here and I still stand. I've been through enough to know that I can take it. Especially now when I know that there are people who love me and who need me. My own family. Not the one that for years took for granted that I should love them and be there no matter what they do. And they still haven't realized that that love and care are not an entitlement that runs through one's veins. They are a privilege that has to be earned. Through unconditional love and affection. And they are still in denial when it comes to our relationship- denial that I have anything in common with them.
I have the family I chose- it may be dysfunctional but it is mine. And I would never take it for granted that they should love me and be close to me.
E
But hey, here they go ruining it all again. so I am going back to the original title "My buldging belly" it may not be spelled right but that was not the point in the first place. I felt that there should have been a "d" there to emphasize the bulging and since it is my blog it is my spelling too. I hardly ever write any more because before I write I have to think what my parents would think and what are they going to call and ask. So many events go unrecorded. If that is not Censorship I don't know what is. So here we are back to the original title and hopefully back to the original idea- to just write To write because it feels good not because someone would read it.
and the harsh truth is there are hardly any friends left to update too. No one seems to give a crap any more- no one calls, no one emails, no one says how are you, do you need someone to talk to, do you need a hug.
But that's fine because when hard times hit only true friends hang around.
And here we are hard times are here but there is no one around. and the silence is deafening. It Screams. You are alone.
And that's fine too- after all haven't I been alone all my life. There were very few passers by who stuck around long enough for the bad times and eventually they all went their way too. But I am still here and I still stand. I've been through enough to know that I can take it. Especially now when I know that there are people who love me and who need me. My own family. Not the one that for years took for granted that I should love them and be there no matter what they do. And they still haven't realized that that love and care are not an entitlement that runs through one's veins. They are a privilege that has to be earned. Through unconditional love and affection. And they are still in denial when it comes to our relationship- denial that I have anything in common with them.
I have the family I chose- it may be dysfunctional but it is mine. And I would never take it for granted that they should love me and be close to me.
E
Monday, September 1, 2008
not knowing
another day, another trip to the ER, another doctor saying she looks fine. I am getting tired of going from hospital to hospital and getting the same lame answer- we don't know. She looks good.
She was improving. Last night before we went to bed she was almost back to her normal self- playing and smiling and crawling around.
This morning she woke up and was very lethargic again. She would drift in and out of sleep, twitch and vomited all over me.
We called our doctor- he said go to the ER. He assumed she might have had another seizure.
The ER doctors saw nothing wrong with her. It could be something viral, it could be just the new meds, it could be this and that.
I wish someone would give me a definitive answer and tell me what is wrong.
The fact that I can do nothing for her drives me crazy.
I just want to hear her giggle again.
E
She was improving. Last night before we went to bed she was almost back to her normal self- playing and smiling and crawling around.
This morning she woke up and was very lethargic again. She would drift in and out of sleep, twitch and vomited all over me.
We called our doctor- he said go to the ER. He assumed she might have had another seizure.
The ER doctors saw nothing wrong with her. It could be something viral, it could be just the new meds, it could be this and that.
I wish someone would give me a definitive answer and tell me what is wrong.
The fact that I can do nothing for her drives me crazy.
I just want to hear her giggle again.
E
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