Since a few weeks ago when I wrote about Lindsay wanting to keep her tv and lights on at night, it has been a learning experience and a reminder to me that sometimes my husband is so smart!
We did learn to let it go, let her keep the tv on and not worry, however we did unscrew all the light bulbs! Some nights she would keep it on with no volume and other nights, we would wake from a deep sleep to hear her tv blaring with noise from C-Span or the Spanish channel!
She seemed to be adjusting during the day to less sleep until the seizures started to occur with frequency. She had one bad seizure followed by a day when she had four. Thinking she may have an infection or cold that could have triggered them, we went to our regular doctor to find her in good health but due to a lack of sleep, it could have triggered the onset of more seizures. We also saw her neurologist and after 2 years on one medication, which hasn't worked as well as it should, we are now trying a new one! Quite a process and hoping for better management!
But back to the tv! I think she just likes to have it on, as it gives her comfort of some kind. The volume thing is what we needed to figure out. She could turn the volume up on her remote but wouldn't turn it down. So to ensure OUR better nights sleep.....Jerry figured out a solution! He duct taped her remote with only the volume and channel buttons visible. Now she can turn up the volume only so far, can change channels to her hearts desire, while we have a secret remote where we can lock the volume control!
She still has her tv at night, a little volume AND we both get to sleep without learning spanish in our sleep!
Sunday, January 23, 2011
Tuesday, January 11, 2011
Is there such a thing?
Is there such a thing as Sugarless Gum poisoning? I wonder.
I like gum, Lindsay likes gum. She is usually good with it, when it is monitored. But like when you start eating certain candy you like, it is hard to stop because it tastes so good. Just one more piece! Well, that is what it is like with Lindsay and gum.
I ask this question because as I was getting her ready for bed last night, noticed her purse open (well, one of her purses) with three packages of gum, all empty. The little wrappers all neatly tucked inside as well. Yikes, her poor stomach! I found no evidence of her spitting the gum out and I wonder what it must feel like having all that gum in your system.
Note to self.....find a better hiding spot!
I like gum, Lindsay likes gum. She is usually good with it, when it is monitored. But like when you start eating certain candy you like, it is hard to stop because it tastes so good. Just one more piece! Well, that is what it is like with Lindsay and gum.
I ask this question because as I was getting her ready for bed last night, noticed her purse open (well, one of her purses) with three packages of gum, all empty. The little wrappers all neatly tucked inside as well. Yikes, her poor stomach! I found no evidence of her spitting the gum out and I wonder what it must feel like having all that gum in your system.
Note to self.....find a better hiding spot!
Thursday, December 30, 2010
What to do??
WE ask ourselves what to do with our latest "battle" with Lindsay. Maybe not a "battle", more of an "issue" or "phase" she is going through. Looking back over her life, there are periods of time where we deal with these issues, phases or battles, whatever they might be.
When she was about three years old, all of a sudden one night at bedtime she didn't want to sleep in her bed. We would put her to bed, she would get up and after getting tired would fall asleep on the floor by her door. After many nights of trying to get her to stay in bed, we gave up and she literally made a bed on the floor. Her big bed was never slept in and it stayed made up with bedspread, sham and pillows while she had her blankets and pillow by the door that she really slept on. This went on for about two years! We finally did get her to sleep in her bed but had to move to a new home, get a new bed and either Jerry or I would literally have to stay with her until she fell asleep for her to stay put! I remember thinking, "will this ever end?"
Well, it did! Now onto this next phase! Now she wants to have her lights on AND her tv on all night! We will put the tv on timer only to have her turn it back on again with the volume up. We started unscrewing the light bulbs in her lamps which only made her frustrated and she broke the turn knob trying to make it work. We have now started unplugging the lamps at bedtime and we haven't figured out the tv situation yet.
We worry that she isn't getting a good nights sleep, however, she seems to get up and go about her day without any naps. So, are we over-reacting? Just because we like the room dark and quiet when we sleep, does she? Is it just a side effect from the seizure medicine she is on? Just like we gave in and let her sleep on the floor for two years, should we just let it go, let her keep the lights on, watch tv with one eye open all night?
We are realizing that as she gets older, more independent, knowing what she likes and dislikes, that we have to give up some control. Yet, when her tv is waking us up in the middle of the night, we ponder, what to do?
This too shall end, just hopefully sooner than two years!
When she was about three years old, all of a sudden one night at bedtime she didn't want to sleep in her bed. We would put her to bed, she would get up and after getting tired would fall asleep on the floor by her door. After many nights of trying to get her to stay in bed, we gave up and she literally made a bed on the floor. Her big bed was never slept in and it stayed made up with bedspread, sham and pillows while she had her blankets and pillow by the door that she really slept on. This went on for about two years! We finally did get her to sleep in her bed but had to move to a new home, get a new bed and either Jerry or I would literally have to stay with her until she fell asleep for her to stay put! I remember thinking, "will this ever end?"
Well, it did! Now onto this next phase! Now she wants to have her lights on AND her tv on all night! We will put the tv on timer only to have her turn it back on again with the volume up. We started unscrewing the light bulbs in her lamps which only made her frustrated and she broke the turn knob trying to make it work. We have now started unplugging the lamps at bedtime and we haven't figured out the tv situation yet.
We worry that she isn't getting a good nights sleep, however, she seems to get up and go about her day without any naps. So, are we over-reacting? Just because we like the room dark and quiet when we sleep, does she? Is it just a side effect from the seizure medicine she is on? Just like we gave in and let her sleep on the floor for two years, should we just let it go, let her keep the lights on, watch tv with one eye open all night?
We are realizing that as she gets older, more independent, knowing what she likes and dislikes, that we have to give up some control. Yet, when her tv is waking us up in the middle of the night, we ponder, what to do?
This too shall end, just hopefully sooner than two years!
Monday, December 13, 2010
Always amazed at Lindsay's intuition
It is "looking a lot like Christmas, everywhere you go". Some people are happy, some are sad or too busy to know how they feel! The list of things to do becomes longer, our recipes from last year are revisited, cleaning the house for guests to arrive and it is all very exciting.
With all that is going on, I was made aware of my mood today when Lindsay and I were at the grocery store. I did pretty well to get out of the house and run errands early since I have lots on my to-do list. Rush and multi-task, for more rushing and more tasks! She kept coming up to me and giving me a big hug and kissing my cheek. I found myself irritated at first as she would come up in front of me when I was looking at the shelf for an item. After the second or third time, I said to her, "you are awfully lovey today". Then "aah-ha", it donned on me. She, as usual, was intuitive to my mood and was trying to slow me down. She was telling me in her own way, "it's okay, mom and you need a hug". So true and just what I needed and after my aaah ha moment, our hug lasted longer.
I have come to realize that things always work out and that often the obstacles we face our ourselves. If we stop moving and thinking and fixing, that we often find a treasure under our agitation. My treasure today was that my daughter sensed my mood, saw what needed to be done and thankfully, I stopped the stirring of my mind enough to realize what she was telling me.
Thank you Lindsay for your intuitiveness, for your long hugs and for reminding me of the treasure of staying in the moment!
With all that is going on, I was made aware of my mood today when Lindsay and I were at the grocery store. I did pretty well to get out of the house and run errands early since I have lots on my to-do list. Rush and multi-task, for more rushing and more tasks! She kept coming up to me and giving me a big hug and kissing my cheek. I found myself irritated at first as she would come up in front of me when I was looking at the shelf for an item. After the second or third time, I said to her, "you are awfully lovey today". Then "aah-ha", it donned on me. She, as usual, was intuitive to my mood and was trying to slow me down. She was telling me in her own way, "it's okay, mom and you need a hug". So true and just what I needed and after my aaah ha moment, our hug lasted longer.
I have come to realize that things always work out and that often the obstacles we face our ourselves. If we stop moving and thinking and fixing, that we often find a treasure under our agitation. My treasure today was that my daughter sensed my mood, saw what needed to be done and thankfully, I stopped the stirring of my mind enough to realize what she was telling me.
Thank you Lindsay for your intuitiveness, for your long hugs and for reminding me of the treasure of staying in the moment!
Wednesday, December 1, 2010
The simple things sometimes aren't so simple
Hello again. FYI, the code word is still used from time to time, but who doesn't need to go back to the feelings of vacation in our everyday lives?
After giving Lindsay a shower tonight, many thoughts came to mind. Ever since she was a baby, until now at the age of 25, helping her bathe is just something we do. From adjusting the water temperature, to making sure she gets enough shampoo on her hair or sometimes to the other spectrum, making sure she doesn't use the entire bottle too! Shaving her under-arms and her legs, making sure she doesn't get the urge to pick up the razor and do it herself. Like all of us, she likes to stand in the shower and feel the warm water for long time. We thought Taylor was a long shower taker! To save time, I will often shower with her and she soon ushers me out when she wants her water hog time.
Tonight, however, it occurred to me that as she is getting older, she wants more and more independence when yet, she needs all the help that we give. Sometimes it isn't so easy to clean her ears, to clip her nails, floss her teeth. We give in, to avoid the struggle and then when I think of it, that it has been awhile, I feel so bad. How could have I forgot to to do that? She doesn't know to do it herself, some of the daily things we do for ourselves.
I will be honest. It isn't very often that when it is my shower time, that I don't include Lindsay. Sometimes it is just easier to, as they say, "kill two birds with one stone". I realized tonight, she doesn't like the idea of sharing shower time with me either! Sometimes having a few minutes alone in the shower with the warm water trickling down upon your head is just what someone needs.
But....it is so hard to let go of the simple little things we need to do for ourselves or others without letting the necessities of every day life come into play. Do I let her stand for long moments soaking up the water, forget about the forest growing on her legs, and not worry if she uses conditioner instead of shampoo? I do let up on some of those things and then like tonight, after letting things go for awhile, I realize that she depends on me/us to help her with these simple things, even if she doesn't like it.
So, as in everyday life, we learn to adapt to the situation. Okay then... not tonight.... then tomorrow I will clean your ears, shave your legs, etc but I am realizing that remembering to do those simple little things isn't so simple!
After giving Lindsay a shower tonight, many thoughts came to mind. Ever since she was a baby, until now at the age of 25, helping her bathe is just something we do. From adjusting the water temperature, to making sure she gets enough shampoo on her hair or sometimes to the other spectrum, making sure she doesn't use the entire bottle too! Shaving her under-arms and her legs, making sure she doesn't get the urge to pick up the razor and do it herself. Like all of us, she likes to stand in the shower and feel the warm water for long time. We thought Taylor was a long shower taker! To save time, I will often shower with her and she soon ushers me out when she wants her water hog time.
Tonight, however, it occurred to me that as she is getting older, she wants more and more independence when yet, she needs all the help that we give. Sometimes it isn't so easy to clean her ears, to clip her nails, floss her teeth. We give in, to avoid the struggle and then when I think of it, that it has been awhile, I feel so bad. How could have I forgot to to do that? She doesn't know to do it herself, some of the daily things we do for ourselves.
I will be honest. It isn't very often that when it is my shower time, that I don't include Lindsay. Sometimes it is just easier to, as they say, "kill two birds with one stone". I realized tonight, she doesn't like the idea of sharing shower time with me either! Sometimes having a few minutes alone in the shower with the warm water trickling down upon your head is just what someone needs.
But....it is so hard to let go of the simple little things we need to do for ourselves or others without letting the necessities of every day life come into play. Do I let her stand for long moments soaking up the water, forget about the forest growing on her legs, and not worry if she uses conditioner instead of shampoo? I do let up on some of those things and then like tonight, after letting things go for awhile, I realize that she depends on me/us to help her with these simple things, even if she doesn't like it.
So, as in everyday life, we learn to adapt to the situation. Okay then... not tonight.... then tomorrow I will clean your ears, shave your legs, etc but I am realizing that remembering to do those simple little things isn't so simple!
Monday, November 15, 2010
Reality is good
Jerry and I just returned from a 10 day getaway by ourselves. Yes, it was wonderful! Time to ourselves, time to relax and do as we please. But as they say, "all good things must come to an end" and after the first day back we have realized that as watching the sun rise and set against the waves of the ocean is indeed wonderful, reality back in Grand Junction, Colorado is good too.
In reality, we really stressed over how Lindsay would react to us being gone for so long. We have gone on trips before but not for this long. We worried if she would have seizures while we were away and if she would be so stressed that she wouldn't sleep. We wondered if in her mind, she would understand us going away by ourselves, if she comprehended that we would be back and things would return to normal. We just didn't know how she would react to the changes to her life in 10 days. In reality, all went great. We had a wonderful friend, Kelli (yes, another Kelli with an "i") stay at the house with her and they had a great time! We would call home and Kelli would say she couldn't believe how Lindsay acted so sad when we called! It was as though she wanted to make us feel like she missed us but in reality, she was having a great time!
In reality, it was so sweet to see Taylor pick us up at the airport with Lindsay and Babygrr in the front seat of the car. All three of them with smiles on their faces, happy to see us. We were chatting with Taylor in the car about things and Lindsay reaches over to turn up the radio dial volume to hear the song playing. Taylor grins as he looks at Lindsay and says "you must like this song, uh?"
In reality, Lindsay reminded us right away of the important things! To "go to the store", "get my papers", "babygrr eat", " call my mom" and that we needed bandaids! (Band aids- future blog entry!) At bed time last night, she was right back in the routine asking us about our next day. She asked me, "you get your "caca", mom?" (coffee) and then, a new question! She asked Jerry, "you get your caca-pop?" We looked at each other and smiled. She knows Jerry doesn't drink coffee but likes a diet coke in the morning, kind of like a morning coffee. Therefore, "caca-pop"! We giggled!
In reality, it was back to our Sunday routine of cooking a Sunday dinner and then watching America's Funniest Videos. Nothing better than hearing Lindsay and Jerry laughing out loud at the silly videos. Then on to Extreme Makeover Home Edition, having tears in our eyes of the good things people do for each other and watching Lindsay "get it" too. She smiles and says "aaah".
In reality, after not having to cook dinner for over a week, I was out of practice and burned myself with the lid to the pot . To make things better, I got a big hug from Lindsay, telling me "aaah, mom", that she liked her dinner.
In contrast, Babygrr, now that is a different story! She did not have the welcome home attitude that Lindsay had. No, I got the silent treatment from her, the "how could you have done this to me" and "I got you back by throwing up on your comforter while you were gone" look, which she did! She is slowly acting like she loves me again. The reality that a animal loves you so much that she got depressed with you gone is amazing! Or could it be that Lindsay drove her crazy trying to hold her the whole time and she is just really mad at me!
We all need to get away from it all once in awhile, but home can be a comforting real thing. Jerry and I came up with a code word to say to each other at moments when "our reality" gets overwhelming. A word that can take us back to those relaxing moments together on the beach, listening to waves come to shore. Having a chance to have those quiet moments helps you realize the precious moments of our everyday reality. The importance of finding the wonderful in our world at home each day.
Yes, reality is good .....but alright, I admit, we have had to use the code word already. :)
In reality, we really stressed over how Lindsay would react to us being gone for so long. We have gone on trips before but not for this long. We worried if she would have seizures while we were away and if she would be so stressed that she wouldn't sleep. We wondered if in her mind, she would understand us going away by ourselves, if she comprehended that we would be back and things would return to normal. We just didn't know how she would react to the changes to her life in 10 days. In reality, all went great. We had a wonderful friend, Kelli (yes, another Kelli with an "i") stay at the house with her and they had a great time! We would call home and Kelli would say she couldn't believe how Lindsay acted so sad when we called! It was as though she wanted to make us feel like she missed us but in reality, she was having a great time!
In reality, it was so sweet to see Taylor pick us up at the airport with Lindsay and Babygrr in the front seat of the car. All three of them with smiles on their faces, happy to see us. We were chatting with Taylor in the car about things and Lindsay reaches over to turn up the radio dial volume to hear the song playing. Taylor grins as he looks at Lindsay and says "you must like this song, uh?"
In reality, Lindsay reminded us right away of the important things! To "go to the store", "get my papers", "babygrr eat", " call my mom" and that we needed bandaids! (Band aids- future blog entry!) At bed time last night, she was right back in the routine asking us about our next day. She asked me, "you get your "caca", mom?" (coffee) and then, a new question! She asked Jerry, "you get your caca-pop?" We looked at each other and smiled. She knows Jerry doesn't drink coffee but likes a diet coke in the morning, kind of like a morning coffee. Therefore, "caca-pop"! We giggled!
In reality, it was back to our Sunday routine of cooking a Sunday dinner and then watching America's Funniest Videos. Nothing better than hearing Lindsay and Jerry laughing out loud at the silly videos. Then on to Extreme Makeover Home Edition, having tears in our eyes of the good things people do for each other and watching Lindsay "get it" too. She smiles and says "aaah".
In reality, after not having to cook dinner for over a week, I was out of practice and burned myself with the lid to the pot . To make things better, I got a big hug from Lindsay, telling me "aaah, mom", that she liked her dinner.
In contrast, Babygrr, now that is a different story! She did not have the welcome home attitude that Lindsay had. No, I got the silent treatment from her, the "how could you have done this to me" and "I got you back by throwing up on your comforter while you were gone" look, which she did! She is slowly acting like she loves me again. The reality that a animal loves you so much that she got depressed with you gone is amazing! Or could it be that Lindsay drove her crazy trying to hold her the whole time and she is just really mad at me!
We all need to get away from it all once in awhile, but home can be a comforting real thing. Jerry and I came up with a code word to say to each other at moments when "our reality" gets overwhelming. A word that can take us back to those relaxing moments together on the beach, listening to waves come to shore. Having a chance to have those quiet moments helps you realize the precious moments of our everyday reality. The importance of finding the wonderful in our world at home each day.
Yes, reality is good .....but alright, I admit, we have had to use the code word already. :)
Thursday, October 28, 2010
Update on Lindsay's Knee
Thanks for everyone checking in on Lindsay and her knee! Here is an update......
Thankfully, after the frustrating process of the MRI, the doctor was able to get one good image showing that she didn't have any damage to the knee but it did show some fluid around the area. He watched her walk around the office with no indication of severe pain or limping and after discussion, we have decided to take a step by step process.
First step, is to get blood work to see if anything else is going on. We belong to a Registry of parents and affected individuals with abnormalities of the 18th Chromosome. There are several abnormalities, of which Lindsay was diagnosed with 18P- (minus) Syndrome. It is a short deletion on the top arm of the 18th Chromosome. The slight deletion has affected her communication, learning and cognitive development. Others who have 18P- sometimes have more of the Chromosome missing, which involves many more physical ailments, for which we are grateful that Lindsay doesn't have. The Registry is called Chromosome 18 Registry and Research Society and they continue to study the development, life and medical aspects of those who have these chromosome abnormalities. One area of interest is the possibility that those who have what Lindsay has may be subject to an early onset of arthritis. So, this may be something that may be shown in blood work.
Second, we are going to continue our routine of wearing her knee brace, icing the knee a few times a day and we report back in a few weeks. Lindsay rather likes her knee brace, it has become an accessory that she enjoys and doesn't mind sitting on the couch with her feet up, while her knee of being iced either! :)
We will keep you posted!
Thankfully, after the frustrating process of the MRI, the doctor was able to get one good image showing that she didn't have any damage to the knee but it did show some fluid around the area. He watched her walk around the office with no indication of severe pain or limping and after discussion, we have decided to take a step by step process.
First step, is to get blood work to see if anything else is going on. We belong to a Registry of parents and affected individuals with abnormalities of the 18th Chromosome. There are several abnormalities, of which Lindsay was diagnosed with 18P- (minus) Syndrome. It is a short deletion on the top arm of the 18th Chromosome. The slight deletion has affected her communication, learning and cognitive development. Others who have 18P- sometimes have more of the Chromosome missing, which involves many more physical ailments, for which we are grateful that Lindsay doesn't have. The Registry is called Chromosome 18 Registry and Research Society and they continue to study the development, life and medical aspects of those who have these chromosome abnormalities. One area of interest is the possibility that those who have what Lindsay has may be subject to an early onset of arthritis. So, this may be something that may be shown in blood work.
Second, we are going to continue our routine of wearing her knee brace, icing the knee a few times a day and we report back in a few weeks. Lindsay rather likes her knee brace, it has become an accessory that she enjoys and doesn't mind sitting on the couch with her feet up, while her knee of being iced either! :)
We will keep you posted!
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