CHEERLEADING......
starts...........
TONIGHT!!!!!!!!!!!!
She is soooo excited! This is her first year and I think we have NO idea what we are in for.... ;)
But, I LOVE seeing her happy.
especially lately....
Tuesday, August 3, 2010
Friday, July 30, 2010
absence seizures.... again
Hannah went to Epilepsy camp last week, and as usual, had a blast. She loves seeing all her friends there and made a couple new ones. There were two new campers and Hannah took them right under her wing! SO cute!!
When she got home we noticed that she was wetting her pants. I got into her bag to wash her clothes and noticed that her clothes were wet as well... I knew she was having seizures... I started to pay very close attention to her. Then we saw it.... She is having absence seizures again. These are the type she had when she was first diagnosed with epilepsy. She hasn't had absence seizures since Kindergarten. And even then she would wet her pants. But, it didn't seem like it was as often.
So, at the start of the week, I took her into the pediatrician because I know the first thing docs will want to rule out is a UTI. Her doctor tested her, but absolutely no infection. She agrees they are absence seizures. I have noticed several seizures... she stares towards the ground and completely misses whatever conversation was occurring... then she wets her pants. She is wetting 2-5 times every day, but I have seen some seizures without her wetting, so who knows how many she is having....
I was talking with my sister in law (who watches the kids while we work) and our neighbor....Both of them said they have seen her zoning out and then all the sudden coming back to the conversation. I am thinking if they are noticing them, they are probably happening often.
The good news is that Blitzen picked right up in them. I can tell that he knows they are different. He will sniff her and then paces back and forth between Hannah and me. Sometimes he even whines...
I have been really racking my brain as to why these are coming back. It hit me like a ton of bricks this morning...... puberty. I know, I am a little slow. I have been warned and even telling the school teachers, anything is possible when she hits puberty. ugh. How many more years of this????
Since we are currently "in between" neurologists, I am trying to get her into see a doctor. I have no idea when that will be. In the mean time, I am trying to help her not be completely embarrassed when she soaks her pants; not an easy task at all....
When she got home we noticed that she was wetting her pants. I got into her bag to wash her clothes and noticed that her clothes were wet as well... I knew she was having seizures... I started to pay very close attention to her. Then we saw it.... She is having absence seizures again. These are the type she had when she was first diagnosed with epilepsy. She hasn't had absence seizures since Kindergarten. And even then she would wet her pants. But, it didn't seem like it was as often.
So, at the start of the week, I took her into the pediatrician because I know the first thing docs will want to rule out is a UTI. Her doctor tested her, but absolutely no infection. She agrees they are absence seizures. I have noticed several seizures... she stares towards the ground and completely misses whatever conversation was occurring... then she wets her pants. She is wetting 2-5 times every day, but I have seen some seizures without her wetting, so who knows how many she is having....
I was talking with my sister in law (who watches the kids while we work) and our neighbor....Both of them said they have seen her zoning out and then all the sudden coming back to the conversation. I am thinking if they are noticing them, they are probably happening often.
The good news is that Blitzen picked right up in them. I can tell that he knows they are different. He will sniff her and then paces back and forth between Hannah and me. Sometimes he even whines...
I have been really racking my brain as to why these are coming back. It hit me like a ton of bricks this morning...... puberty. I know, I am a little slow. I have been warned and even telling the school teachers, anything is possible when she hits puberty. ugh. How many more years of this????
Since we are currently "in between" neurologists, I am trying to get her into see a doctor. I have no idea when that will be. In the mean time, I am trying to help her not be completely embarrassed when she soaks her pants; not an easy task at all....
Wednesday, July 14, 2010
is there a connection???
We had our follow up with Dr Sleep/Dr. Neuro... This appointment was with her Dr. Sleep "hat" on. She went over the reports from her stay in the hospital a couple weeks ago.
She said "has anyone shown you these reports?"
Me: Ummm. No.
Doc: But the home healthcare company came out and changed the settings on her BI PAP machine, right?"
Me: Ummm. No.
Doc: No one has told you anything then?
Me: Ummm.... (you got it...) No.
She looked rather puzzled and said well, let's go over them then. "yes, let's do!"
Her sleep study proved to be the most telling. (I found this interesting because she just had a sleep study last October and didn't need any changes to her BI PAP machine). She is still having apnea and really high CO2 levels. The respiratory therapist had to increase her settings so it was set appropriate for her needs. For the hours that she was sleeping, she had 114 arousals; 17 per hour... GOOD GRIEF!!! Apparently what is happening is that she isn't getting enough oxygen (to much CO2) and her body wakes her up just enough to take a deep breath and get some more oxygen. 114 times worth!!! So she never gets in a really good sleep... therefore, very tired the next day.
The MSLT (daytime study) was negative for narcolepsy. Out of the 5 naps, the person with narcolepsy has to get into the REM sleep cycle at least 2 of them. And, the average time they fall asleep must be less than 8 minutes. Hannah did fall asleep 4 out of 5 naps, but never got into REM. Her average time of falling asleep was 14 minutes.
Dr. Sleep is really hoping that increasing her settings on her BI PAP machine at home will improve her quality of sleep enough that she won't be so tired. She wants to give it a couple of weeks and see if we notice changes. If we don't, we will probably be looking at adding a medicine to her regiment. Ugh. She stressed the importance of Hannah wearing her mask every night. Actually her words... She really HAS to wear it every night. This did not go over well with Hannah. She doesn't like it. Never has... Sometimes it's a battle I choose not to fight. Make that...CHOSE not to fight. She has no choice in the matter now. She WILL wear it every night (maybe with just a little bribery... just a little). We go to home healthcare this Friday to get the settings changed as well as try on new masks. Apparently there are new and wonderful ones since we got her style three years ago. It would be nice if someone would just make a PINK one... Is that too much to ask??? Make it just a little...girlie??? It would make my life sooo much easier.
For whatever reason, the EEG report was nowhere to be found. She said she had read it, but now it was lost somewhere in the system. She will call me and/or send it to me when they get ahold of it. Kinda weird, but okay...
Meanwhile though, she thinks, (here comes why I think it's great to have a sleep doc and neurologist all in one....) there is a possibility that her high CO2 levels and seizures could be connected. She said there are some studies that are linking the two.... hmmm. This could be very exciting!!! High CO2....sleep deprivation.... increase in seiuzres..... I think it has validity...How bout you???
She said "has anyone shown you these reports?"
Me: Ummm. No.
Doc: But the home healthcare company came out and changed the settings on her BI PAP machine, right?"
Me: Ummm. No.
Doc: No one has told you anything then?
Me: Ummm.... (you got it...) No.
She looked rather puzzled and said well, let's go over them then. "yes, let's do!"
Her sleep study proved to be the most telling. (I found this interesting because she just had a sleep study last October and didn't need any changes to her BI PAP machine). She is still having apnea and really high CO2 levels. The respiratory therapist had to increase her settings so it was set appropriate for her needs. For the hours that she was sleeping, she had 114 arousals; 17 per hour... GOOD GRIEF!!! Apparently what is happening is that she isn't getting enough oxygen (to much CO2) and her body wakes her up just enough to take a deep breath and get some more oxygen. 114 times worth!!! So she never gets in a really good sleep... therefore, very tired the next day.
The MSLT (daytime study) was negative for narcolepsy. Out of the 5 naps, the person with narcolepsy has to get into the REM sleep cycle at least 2 of them. And, the average time they fall asleep must be less than 8 minutes. Hannah did fall asleep 4 out of 5 naps, but never got into REM. Her average time of falling asleep was 14 minutes.
Dr. Sleep is really hoping that increasing her settings on her BI PAP machine at home will improve her quality of sleep enough that she won't be so tired. She wants to give it a couple of weeks and see if we notice changes. If we don't, we will probably be looking at adding a medicine to her regiment. Ugh. She stressed the importance of Hannah wearing her mask every night. Actually her words... She really HAS to wear it every night. This did not go over well with Hannah. She doesn't like it. Never has... Sometimes it's a battle I choose not to fight. Make that...CHOSE not to fight. She has no choice in the matter now. She WILL wear it every night (maybe with just a little bribery... just a little). We go to home healthcare this Friday to get the settings changed as well as try on new masks. Apparently there are new and wonderful ones since we got her style three years ago. It would be nice if someone would just make a PINK one... Is that too much to ask??? Make it just a little...girlie??? It would make my life sooo much easier.
For whatever reason, the EEG report was nowhere to be found. She said she had read it, but now it was lost somewhere in the system. She will call me and/or send it to me when they get ahold of it. Kinda weird, but okay...
Meanwhile though, she thinks, (here comes why I think it's great to have a sleep doc and neurologist all in one....) there is a possibility that her high CO2 levels and seizures could be connected. She said there are some studies that are linking the two.... hmmm. This could be very exciting!!! High CO2....sleep deprivation.... increase in seiuzres..... I think it has validity...How bout you???
Saturday, July 3, 2010
testing....
We stayed in Cincinnati Children's last week a couple days for Hannah's testing. She had an EEG, a regular sleep study and an MSLT (daytime study) the next day. All in all, it was a very good stay. I think we got tons of information that will hopefully give the doctors a direction in which to go...
First off... For the first time since we have had Bltizen, he alerted at the hospital...........
wait for it...... wait for it........
WHILE SHE WAS HOOKED UP TO EEG LEADS!!!! I know, shocker, right??? We were actually on the sleep lab floor and not the VEEG floor, so the nurses weren't nearly as excited. She had a complex partial (first one we caught on EEG). And this was on all meds too!!! I am excited for Dr Neuro to check it out on EEG!!
So then about 9 pm. they hooked up all her sleep leads. She has had many sleep studies before, so it really doesn't phase her anymore. She fell asleep fairly quickly and had an uneventful night (with the excpetion of having to get up to go potty what seemed like a gazillion times!! The Respiratory Therapist started to get really annoyed that she had to keep unhooking her.... But, whatya gonna do???) Although, I did notice that her carbon dioxide levels were on the high side (this is why she wears her BI PAP while she sleeps.... but she had her BI PAP on during testing and it was still high.... maybe need some changes there??)
The RT came in and woke us up at 7 am. She was able to get to unhooked from the wall, move around a little and have breakfast. So hears how the MSLT works....
Wake up at 7 am.... At 8:30 the room is made completely dark and she is given 20 minutes to fall asleep. Once she falls asleep she is only allowed to sleep 15 minutes. They come in and wake her up. We did this all day long. Every 2 hours she was "encouraged" to go to sleep. 8:30, 10:30, 12:30, 2:30 and 4:30.... In between each nap, she was unhooked and allowed to leave her room to go to the playroom, cafeteria, and gift shop!!! She was so stoked. She is never allowed to leave her room!!!
Hannah was able to fall asleep 4 out of 5 naps!! I really couldn't believe it. I think she would have fallen asleep for the last one, but she was too excited to go home... What they are looking for is for her to get into REM sleep 2 out of 5 naps. If she does, she will be diagnosed with narcolepsy. (so even though she slept, the question is whether she went into REM sleep.... I don't know....)
I really didn't think we were going to get this diagnosis (and still haven't... have the follow up on the 13th), but I was hoping to shed some light on why she falls asleep so easy and so often. While school was still in session, she was falling asleep in school and still falls asleep in the middle of the day, even on summer break.
So, I am really looking forward to the follow up to see what Dr Sleep and Neuro has to say.... Meantime, Hannah is doing pretty well. It is summer.... Seizures always slow down in the summer. Why???
NO SCHOOL!!! School is her biggest stressor. We see this trend every year.... She is only having a complex partial about 2-3 times a week!!! I will take it!!!!!
First off... For the first time since we have had Bltizen, he alerted at the hospital...........
wait for it...... wait for it........
WHILE SHE WAS HOOKED UP TO EEG LEADS!!!! I know, shocker, right??? We were actually on the sleep lab floor and not the VEEG floor, so the nurses weren't nearly as excited. She had a complex partial (first one we caught on EEG). And this was on all meds too!!! I am excited for Dr Neuro to check it out on EEG!!
So then about 9 pm. they hooked up all her sleep leads. She has had many sleep studies before, so it really doesn't phase her anymore. She fell asleep fairly quickly and had an uneventful night (with the excpetion of having to get up to go potty what seemed like a gazillion times!! The Respiratory Therapist started to get really annoyed that she had to keep unhooking her.... But, whatya gonna do???) Although, I did notice that her carbon dioxide levels were on the high side (this is why she wears her BI PAP while she sleeps.... but she had her BI PAP on during testing and it was still high.... maybe need some changes there??)
The RT came in and woke us up at 7 am. She was able to get to unhooked from the wall, move around a little and have breakfast. So hears how the MSLT works....
Wake up at 7 am.... At 8:30 the room is made completely dark and she is given 20 minutes to fall asleep. Once she falls asleep she is only allowed to sleep 15 minutes. They come in and wake her up. We did this all day long. Every 2 hours she was "encouraged" to go to sleep. 8:30, 10:30, 12:30, 2:30 and 4:30.... In between each nap, she was unhooked and allowed to leave her room to go to the playroom, cafeteria, and gift shop!!! She was so stoked. She is never allowed to leave her room!!!
Hannah was able to fall asleep 4 out of 5 naps!! I really couldn't believe it. I think she would have fallen asleep for the last one, but she was too excited to go home... What they are looking for is for her to get into REM sleep 2 out of 5 naps. If she does, she will be diagnosed with narcolepsy. (so even though she slept, the question is whether she went into REM sleep.... I don't know....)
I really didn't think we were going to get this diagnosis (and still haven't... have the follow up on the 13th), but I was hoping to shed some light on why she falls asleep so easy and so often. While school was still in session, she was falling asleep in school and still falls asleep in the middle of the day, even on summer break.
So, I am really looking forward to the follow up to see what Dr Sleep and Neuro has to say.... Meantime, Hannah is doing pretty well. It is summer.... Seizures always slow down in the summer. Why???
NO SCHOOL!!! School is her biggest stressor. We see this trend every year.... She is only having a complex partial about 2-3 times a week!!! I will take it!!!!!
Monday, June 14, 2010
Random funnies....
We were driving this morning to drop the kiddos off to their prospective childcare facilities (ugh, don't ask).... the subject of the boys' birthdays came up (not all too uncommon these days...both coming up in July)...
Josiah.... how long will it be until my birthday?
Me.... Just about 5 weeks away...
Josiah... So, just over a month?
Me...yep
long pause...........
Josiah...Well do we have to go to the babysitter that day?
Me.... Depends on if it's a work day for mom...
Josiah... (in SHOCK) you mean they don't give you the day off when it's your kid's birthday????
Me... I wish, but no....
Josiah... Well, I think they should!!!!
Ahhh....... the innocence... : )
A few weeks ago Josiah had a fairly decent BMX crash. As evening rolled around, his knee started to get really swollen, so I thought I better get it looked at (sometimes hard to tell real from drama with that middle kiddo!!)
So, we are sitting in the exam room waiting on them to come from x ray.... trying to entertain the best I can with what I have...
After long pause with no conversation...... Eli (my ever so funny 4 year old) says..........
SO........ YOU WANNA TALK ABOUT ARMPITS???
I immediately burst into laughter. He says WHAT????.....
(lifting his arm pointing to his armpits)
YOU KNOW.... ARMPITS.... YOU WANNA TALK ABOUT EM???
Man, I love that kid!!!!!
My mom just reminded me of another funny story.....
The kids just spent the week with my parents (God bless their hearts!). They had taken the kids to Dairy Queen for ice cream one evening. They were sitting next to an older couple at the next picnic table...
Hannah's ice cream fell off her cone and onto the table.... Moments later, Josiah's ice cream fell on the table. Good grief!!!
Just as straight faced as he could be Eli turned to the older couple and said....
WE EAT LIKE PIGS HERE!!
They all burst into laughter. Once again....Eli wondering what was so funny? : )
Josiah.... how long will it be until my birthday?
Me.... Just about 5 weeks away...
Josiah... So, just over a month?
Me...yep
long pause...........
Josiah...Well do we have to go to the babysitter that day?
Me.... Depends on if it's a work day for mom...
Josiah... (in SHOCK) you mean they don't give you the day off when it's your kid's birthday????
Me... I wish, but no....
Josiah... Well, I think they should!!!!
Ahhh....... the innocence... : )
A few weeks ago Josiah had a fairly decent BMX crash. As evening rolled around, his knee started to get really swollen, so I thought I better get it looked at (sometimes hard to tell real from drama with that middle kiddo!!)
So, we are sitting in the exam room waiting on them to come from x ray.... trying to entertain the best I can with what I have...
After long pause with no conversation...... Eli (my ever so funny 4 year old) says..........
SO........ YOU WANNA TALK ABOUT ARMPITS???
I immediately burst into laughter. He says WHAT????.....
(lifting his arm pointing to his armpits)
YOU KNOW.... ARMPITS.... YOU WANNA TALK ABOUT EM???
Man, I love that kid!!!!!
My mom just reminded me of another funny story.....
The kids just spent the week with my parents (God bless their hearts!). They had taken the kids to Dairy Queen for ice cream one evening. They were sitting next to an older couple at the next picnic table...
Hannah's ice cream fell off her cone and onto the table.... Moments later, Josiah's ice cream fell on the table. Good grief!!!
Just as straight faced as he could be Eli turned to the older couple and said....
WE EAT LIKE PIGS HERE!!
They all burst into laughter. Once again....Eli wondering what was so funny? : )
Sunday, June 13, 2010
A BRAND NEW LOOK!!!!!
Well??? Watcha think of the new look? I have been wanting to "update" the look for quite some time. I am pretty happy, but will probably continue to tweek!!!
Hannah is back from nana and papa's house. The kids spent 8 days with their grandparents. COMPLETELY SPOILED, I might add... : ) It has been a teeny tiny bit rough getting back on schedule. You know, convincing the kids they DO STILL have chores....they DO STILL have to read and do flash cards...the animals STILL need to be fed and cared for, even though it's summer break!!! What they really get mad about is this all has to be done BEFORE they go out and play.... I know, I know...
MEAN MOMMY!!!!
I am confident they will get back into the routine of things.... : )
Hopefully sooner rather than later!!!
Hannah is back from nana and papa's house. The kids spent 8 days with their grandparents. COMPLETELY SPOILED, I might add... : ) It has been a teeny tiny bit rough getting back on schedule. You know, convincing the kids they DO STILL have chores....they DO STILL have to read and do flash cards...the animals STILL need to be fed and cared for, even though it's summer break!!! What they really get mad about is this all has to be done BEFORE they go out and play.... I know, I know...
MEAN MOMMY!!!!
I am confident they will get back into the routine of things.... : )
Hopefully sooner rather than later!!!
Monday, June 7, 2010
officially a 5th grader!
Wow...Where does the time go??? Seriously. It really does feel like a blink of an eye. It is so scary to think she is over half way to an adult. {insert shiver....} Where did my FOUR pound baby go???
IEP for next year is done. For the first time since Kindergarten, we are trying inclusion next year. I am so, so happy for Hannah. She will love it. I am also so, so scared. After much discussion, I decided to give it a whirl. I would rather her be given the opportunity to excel and pushed a little more and maybe not make the highest grades (very hard coming from an over achiever), than have her work watered down and get all A's. She will still have her one on one aide. Modifications will still be in place. She will just remain in the regular ed room; of course Blitzen will be with her. Some days her intervention teacher will be in the room with her. Everyone is on board and will be watching her very close. The teachers will re-evaluate after three weeks into her 5th grade year. If she is struggling, changes will be made. I am happy....but nervous.
She is staying with her grandparents this week. I am sure getting spoiled rotten and having a ball. My mom is really the only person I trust for her to stay with. My mom has been there from the very beginning. Hannah is very special to her. She goes with us to all of our week long hospital stays. I don't know what I would do without her.
Hannah has been fairly stable. She is still having complex partials about every other day. Some days, all day long...some days, we have none. She hasn't had a tonic-clonic in 5 weeks now! That is almost a record!!! Her sleeping patterns are still very different. We go for her sleep study, EEG, and day time study the 23-24th of this month. I hope it shows something as to why she is falling asleep during the day. Even though school is out, she will still fall asleep late morning. She is even sleeping in a bit more now. As always....hoping to get answers.....
IEP for next year is done. For the first time since Kindergarten, we are trying inclusion next year. I am so, so happy for Hannah. She will love it. I am also so, so scared. After much discussion, I decided to give it a whirl. I would rather her be given the opportunity to excel and pushed a little more and maybe not make the highest grades (very hard coming from an over achiever), than have her work watered down and get all A's. She will still have her one on one aide. Modifications will still be in place. She will just remain in the regular ed room; of course Blitzen will be with her. Some days her intervention teacher will be in the room with her. Everyone is on board and will be watching her very close. The teachers will re-evaluate after three weeks into her 5th grade year. If she is struggling, changes will be made. I am happy....but nervous.
She is staying with her grandparents this week. I am sure getting spoiled rotten and having a ball. My mom is really the only person I trust for her to stay with. My mom has been there from the very beginning. Hannah is very special to her. She goes with us to all of our week long hospital stays. I don't know what I would do without her.
Hannah has been fairly stable. She is still having complex partials about every other day. Some days, all day long...some days, we have none. She hasn't had a tonic-clonic in 5 weeks now! That is almost a record!!! Her sleeping patterns are still very different. We go for her sleep study, EEG, and day time study the 23-24th of this month. I hope it shows something as to why she is falling asleep during the day. Even though school is out, she will still fall asleep late morning. She is even sleeping in a bit more now. As always....hoping to get answers.....
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Beautiful Hannah...
