Today started off like any normal day. John went to work, I fed the kids breakfast, cleaned up, sent the kids into the family room to play while I swept and did the dishes, you know, the typical morning.
As is often the case with me, I got a little distracted by an idea for a new kit I'm designing, so I was at the computer jotting a few things down. I figured the gate was up, the kids were safe, and they were all watching "Backyardigan's" so I had a few minutes.
Chipper's shriek from the other room, quickly reminded me that I really should never leave Sam out of my sight for even 10 seconds. He somehow had managed to climb up in the family room, lean over the gate into the pantry and get down a bottle of honey. He then proceeded to dump and smear the honey all over the new slide and jungle gym that Olivia got for her birthday. When Chipper yelled, it was because both Sam and Olivia were trying to slide down it and didn't make it real far. Don't ask me what the three older kids were doing while Sam pulled this whole thing off. They were in the room, but they aren't always the most observant!
Needless to say, the two little ones were quickly wisked off for baths and we had to clean the slide, floor, arm of the couch and part of the bean bag several times and I still think there are sticky spots!
I think I really lucked out with my first three kids, because they really didn't make many messes. But Sam will truly be the death of me, in one way or another! He certainly is trying to keep me on my toes.
I also wish I could say that was the only need for baths today, but several hours later, while the kids went outside to play, I was called out to find that they had completely buried Olivia in the dirt, except for her little head sticking out! Aah, the joys of parenting!
Friday, May 30, 2008
Tuesday, May 27, 2008
Sam's Evaluation
Well, today, I spent 3 hours at the school for Sam's evaluation in preparation for his annual IEP review which will be held tomorrow. It was exhausting. I know it's important to give a thorough record of his past and present behaviors, learned skills, what he can and can't do, etc., but it is so difficult to go through this over and over again! He is such a sweet and wonderful little boy, who tries so hard, but you could tell today during the evaluations that he didn't really want to be there. I think he gets frusterated when expected to do things in a timely manner, if he can't. I know that the purpose behind the evaluations is to get a guage of what he can and can't do, but I think it is also difficult for a little person who is working so hard and knows that he can't quite get some of these things.
As John and I were talking later in the day, mostly in preparation for tomorrow, we came up with the comparison of a computer. So, I'm going to record it here, partly for us, and partly for anyone else out there who is trying to fully understand what Sam is dealing with. I had never heard of a "motor planning disorder" or a "processing disorder" before having Sam and facing his diagnosis of Apraxia. But, one way to think of it is with a computer. How many of us remember the really "old" days of DOS. In the beginning, we didn't just turn on a computer, have Windows Vista pop up with all the wonderful things it can automatically do for us. Remember when we had to type in the commands by hand? Okay, I admit I'm spoiled, I have very limited memory of the DOS days, but I think we all know, where we're going with this. Most of how a computer works, is automatic to us. We don't have to know each individual process. For most of us, when we speak and communicate with one another, it is automatic. We've done it a million times, we learned how to do the simple stuff beginning as an infant. We don't break down each step, each word, while taking in the other person's dialogue. Most of it is an automatic plan that we established long ago. For a child, like Sam, it is as if he is working in DOS. He can't automatically formulate those plans, therefore, he has to work through each and every process, one by one.
To add to that, because of the white matter abnormality and the low muscle tone, he has physical difficulties with those automatic steps. If you go to say the word "cat", you don't have to think "my tongue goes here and then moves to here, my jaw opens this wide and then closes, my breath strength needs to be stronger part way through the word", etc. We just say the word cat. For Sam, he not only struggles with those steps, but also having the physical capabilities of moving his tongue, holding and stabilizing his jaw, having strong enough breath sounds, etc. So, part of the struggle and the therapy, is to strengthen all of those components, and then work on teaching his brain to do automatically what comes so easy for most of us.
And the school wonders why we aren't happy with their therapist who thinks that Sam is not only "too lazy to speak" but also that just playing with him will eventually get him to speak.
Needless to say, it's been very complicated! I'll post tomorrow and let everyone know how things go. John will be going alone, as I was not able to find anyone available to watch the kids. I have a more in depth knowledge of Sam's disorder, but he is the one much better at presenting everything. Plus, we spent several hours today going through his evaluation that we had done just over a month ago, by a private speech therapist in Vegas. Wish us luck tomorrow. In a District with limited resources, I'm not sure what they will be able to do for us, but it should be an interesting meeting!
As John and I were talking later in the day, mostly in preparation for tomorrow, we came up with the comparison of a computer. So, I'm going to record it here, partly for us, and partly for anyone else out there who is trying to fully understand what Sam is dealing with. I had never heard of a "motor planning disorder" or a "processing disorder" before having Sam and facing his diagnosis of Apraxia. But, one way to think of it is with a computer. How many of us remember the really "old" days of DOS. In the beginning, we didn't just turn on a computer, have Windows Vista pop up with all the wonderful things it can automatically do for us. Remember when we had to type in the commands by hand? Okay, I admit I'm spoiled, I have very limited memory of the DOS days, but I think we all know, where we're going with this. Most of how a computer works, is automatic to us. We don't have to know each individual process. For most of us, when we speak and communicate with one another, it is automatic. We've done it a million times, we learned how to do the simple stuff beginning as an infant. We don't break down each step, each word, while taking in the other person's dialogue. Most of it is an automatic plan that we established long ago. For a child, like Sam, it is as if he is working in DOS. He can't automatically formulate those plans, therefore, he has to work through each and every process, one by one.
To add to that, because of the white matter abnormality and the low muscle tone, he has physical difficulties with those automatic steps. If you go to say the word "cat", you don't have to think "my tongue goes here and then moves to here, my jaw opens this wide and then closes, my breath strength needs to be stronger part way through the word", etc. We just say the word cat. For Sam, he not only struggles with those steps, but also having the physical capabilities of moving his tongue, holding and stabilizing his jaw, having strong enough breath sounds, etc. So, part of the struggle and the therapy, is to strengthen all of those components, and then work on teaching his brain to do automatically what comes so easy for most of us.
And the school wonders why we aren't happy with their therapist who thinks that Sam is not only "too lazy to speak" but also that just playing with him will eventually get him to speak.
Needless to say, it's been very complicated! I'll post tomorrow and let everyone know how things go. John will be going alone, as I was not able to find anyone available to watch the kids. I have a more in depth knowledge of Sam's disorder, but he is the one much better at presenting everything. Plus, we spent several hours today going through his evaluation that we had done just over a month ago, by a private speech therapist in Vegas. Wish us luck tomorrow. In a District with limited resources, I'm not sure what they will be able to do for us, but it should be an interesting meeting!
Monday, May 26, 2008
Check this out...
I know I posted awhile ago about my scrapbooking blog, but I wanted to share some of the fun things I have going on over there! I am posting daily free downloads, along with challenges and tips and ideas for journaling and writing your personal history. If anyone is interested in any of this sort of stuff, check it out
here
here
Saturday, May 24, 2008
Happy Memorial Weekend
I hope everyone is enjoying a weekend full of barbeque, memories of loved ones and speculation of McCain's running mate (or shape of his colon, whichever they WANT us to speculate about)! And it will be interesting to see if we can have a weekend free of assasination talk or whether or not Jason Taylor will ever dance again--er, I mean play football.
But for most of us, unwilling to take out a second mortgage to afford gas, we will probably stay home, visit with family nearby and memorialize the days when we could fill up for under 20 bucks.
Personally, I love Memorial Day and I don't even barbeque. I love that it is the official start to summer, a chance to relax for 3 whole days and an opportunity to visit the graves of those who have come before. I love sharing this with my kids. I love telling them the stories that have been handed down to me or the ones that I remember. And whether it's remembering my grandmother who lived next door to me for my first 15 years of life or the grandfather who was a POW in World War II, I have a rich family legacy. I hope that everyone can take a few moments out of their busy lives, this weekend to remember the ones who made it possible that a woman could run for the white house, a mormon may end up as a running mate for the white house or that a black man will most likely be in the white house!
Happy Memorial Day!
But for most of us, unwilling to take out a second mortgage to afford gas, we will probably stay home, visit with family nearby and memorialize the days when we could fill up for under 20 bucks.
Personally, I love Memorial Day and I don't even barbeque. I love that it is the official start to summer, a chance to relax for 3 whole days and an opportunity to visit the graves of those who have come before. I love sharing this with my kids. I love telling them the stories that have been handed down to me or the ones that I remember. And whether it's remembering my grandmother who lived next door to me for my first 15 years of life or the grandfather who was a POW in World War II, I have a rich family legacy. I hope that everyone can take a few moments out of their busy lives, this weekend to remember the ones who made it possible that a woman could run for the white house, a mormon may end up as a running mate for the white house or that a black man will most likely be in the white house!
Happy Memorial Day!
Wednesday, May 21, 2008
Wind, Wind and more Wind!!
Can I just say that I HATE wind! Sorry for a mini-rant, but I'm ready for a week or more of quiet, tranquil days and no wind. I won't even care if they are hot days, I'm just tired of wind!
Okay, I feel better now.
Things are pretty good here. Sam is pretty much all over his illness, off treatments, etc. Olivia is also doing better. Chipper has been sick all day, but I think his are mostly due to allergies (worsened by the aforementioned wind!) and has spent the day in bed. I took Mitchell to the clinic yesterday, and he is one sick little puppy. He had two really bad ear infections, that he swears don't even hurt, but according to the doc, they looked awful! His asthma was acting up and he has a sore throat. He started on antibiotic this morning, and I'm hoping by tomorrow he will begin to feel better. It's almost summer, when will the sick days end? LOL! I swear, it's all the wind's fault!
Okay, I feel better now.
Things are pretty good here. Sam is pretty much all over his illness, off treatments, etc. Olivia is also doing better. Chipper has been sick all day, but I think his are mostly due to allergies (worsened by the aforementioned wind!) and has spent the day in bed. I took Mitchell to the clinic yesterday, and he is one sick little puppy. He had two really bad ear infections, that he swears don't even hurt, but according to the doc, they looked awful! His asthma was acting up and he has a sore throat. He started on antibiotic this morning, and I'm hoping by tomorrow he will begin to feel better. It's almost summer, when will the sick days end? LOL! I swear, it's all the wind's fault!
Saturday, May 17, 2008
Dance
I have some exciting news! As many know, I have gotten really hooked on digital scrapbooking. I've started designing a little, as well as scrapping a lot of layouts. I applied to work on a creative team for a designer at Divine Digital and was accepted. I'm very excited about this opportunity! I get free products in exchange for sharing the layouts in their gallery. The layout above is one I did tonight of my precious little girl! She is growing up way too fast! I had to run to Vegas today to do some errands, grocery shopping, etc. I talked her into going and keeping me company. We also went to Prince Caspian, which was so awesome! I loved spending the day with her. She always asks me to tell her stories of when I was a little girl or when me and daddy met. I know I've repeated them a dozen times, but she never tires of hearing them. Thanks Abby, I love you!
Thursday, May 15, 2008
My Trip to Paradise
Tuesday night, I was visiting Rachelle with the three youngest kids (John and the two older boys had headed to Magic Moutain for their annual Father and Sons outing). We were looking forward to a wonderful evening of quilting for her new baby and visiting about all the books we've recently read or want to read.
Sam started in wheezing and breathing really fast. It hit kind of sudden, and even the breathing treatments we gave him, did nothing to help. So, I headed into the emergency room (a routine I'm all to familiar with!) After about an hour of them rushing around to get him stable, he fell asleep, and I took the nice hard chair beside him and kicked my feet up on the side of his gurney. They had hooked him up for an 8 hour nebulizer treatment, put in an iv to give him steroids and antibiotics, so we were set.
I started thinking about the money I've spent between insurance premiums, co-pays, deductibles and our 10% portion, and the dollars really added up. I thought about the type of wonderful vacation I could have spent with that money. I mean, let's face it, 3 weeks on the beach in Barbados had to be more fun that nights of worry in an ER. But sometimes, life chooses for us, and we do what we have to do for the sake of our children. But, wanting to make the most of what was bound to be a very long night, I decided to draw my comparisons. If this was the paradasical vacation I was going to get, I might as well enjoy it, right!
One of the nurses took pity on me and brought me a cup of juice and some crackers, which I have to admit was nice just to pass the time. So, as I chomped on ice chips and spread cheese on my crackers, I took in my surroundings. The snoring 89 year old next door, the radio going off every few minutes with information of someone else in distress and the constant beeping of machines were the sounds that flooded the air. Not very tropical. I won't be too graphic about the smells, but let's just say that the adult down the hall that didn't make it in time to the bathroom, certainly made things interesting for the rest of us. The cold room, neutral colors and bright lights made the atmosphere feel chilly, not exactly how the sun might feel if I were laying out on a beach.
The night was very long. By 2 a.m. they transferred us to UMC and I followed the ambulance through town. We had to go to their pediatric emergency room first, and I spent another 5 hours, waiting and answering questions. By this point, it was all I could do to keep my eyes open, and not slur everything together as I spit out his medical history to the 4th Resident that wanted to go through the same sheet of questions. I found myself seriously wondering why they couldn't all have laptops that were networked, so they would only have to ask for the info once!
By 7 a.m. we were shown to our room. It was a lovely, rectangular room with 3 colorful, metal cribs. Next to Sam's new bed, was a chair that I could tell had the potential of being pulled out into a cot, but I was quickly informed that it could only be pulled out from 8 p.m. to 7 a.m. I looked at the nurse, with serious hate building in my eyes, and asked, "...you mean I have to wait until tonight to get any sleep?" to which she nodded and said yes. I knew it was going to be a long day! I wasn't even rational by that point, so I'm just hoping I didn't say anything too mean to her. It wasn't her fault, but I was just so tired.
Sam was diagnosed with viral pneumonia and needed constant oxygen through the night and the first part of the day, but he began to respond well to the treatment and we were able to wean him off the oxygen by around noon. The oxygen was the only thing keeping him there (as usual) because everything else we are able to monitor from home. So, I watched the monitor all day, hoping that number wouldn't fall too low. 93 meant freedom, 92 meant more oxygen and a definate night there. It is very difficult to spend your day obsessing about a number on a machine!
It stayed at 93 often, but didn't dip, so we were realeased around 5 p.m. that evening. I was still wearing the same clothes from the day before, no makeup, no deodorant, a pounding headache (not that this was all about me) but I'm sure I looked a sight as I carried Sam (weighing 48 pounds) still in his hospital gown, his chest x-rays and all the other misc. things that collect in a day at the hospital, down the street to where I was parked.
As we made the 2 hour drive home, I pondered the experience, and all the previous ones. It definately has never been anywhere close to paradise or a vacation, but I have learned a thing or two that I would like to note for future references:
1. might be a good idea to have an overnight bag always packed, in the car and ready to go. You'd think I could have learned this maybe 6 visits ago!
2. pink toenails on a little boy can get more attention from every nurse in the room than just about anything else.
3. hospital food tastes better when you're too tired to know what's going in your mouth.
4. it would be nice to have at least one bathroom for the parents, closer than out the door of the ped's floor where you have to repunch in a code and wait for someone to open the door every time.
5. the kindness of strangers can brighten a long day, even if all they're bringing is a cold bologna sandwich.
6. A bathroom break is a great excuse to use, when they come with needles and gauze to draw blood or put in a line.
7. and things could always be worse, as I learned from the little girl sharing our room who was 13 months old and had burns covering most of her face and scalp or the 7 month baby girl in the crib next to ours who eats with a feeding tube and faces a liver transplant and possible dialysis for her sweet life or the door down the hallway that had info about chemotherapy posted to it.
I am very blessed. Life has not always been easy with the scares that Sam has given us and the things he has taught us about faith, but I am very blessed. I have family who will help us out in a pinch, a husband who was willing to drive back from CA and cancel their day of fun, just so he could help me out. I have a wonderful little boy, who challenges us, but loves us unconditionally. When things were at their worst, he could smile at me and put his arms around my neck and everything else just melted away. So, for now at least, I'm happy to keep those trips of fun and excitement and utter relaxation on the shelf of someday and just be content with my own day in paradise.
Sam started in wheezing and breathing really fast. It hit kind of sudden, and even the breathing treatments we gave him, did nothing to help. So, I headed into the emergency room (a routine I'm all to familiar with!) After about an hour of them rushing around to get him stable, he fell asleep, and I took the nice hard chair beside him and kicked my feet up on the side of his gurney. They had hooked him up for an 8 hour nebulizer treatment, put in an iv to give him steroids and antibiotics, so we were set.
I started thinking about the money I've spent between insurance premiums, co-pays, deductibles and our 10% portion, and the dollars really added up. I thought about the type of wonderful vacation I could have spent with that money. I mean, let's face it, 3 weeks on the beach in Barbados had to be more fun that nights of worry in an ER. But sometimes, life chooses for us, and we do what we have to do for the sake of our children. But, wanting to make the most of what was bound to be a very long night, I decided to draw my comparisons. If this was the paradasical vacation I was going to get, I might as well enjoy it, right!
One of the nurses took pity on me and brought me a cup of juice and some crackers, which I have to admit was nice just to pass the time. So, as I chomped on ice chips and spread cheese on my crackers, I took in my surroundings. The snoring 89 year old next door, the radio going off every few minutes with information of someone else in distress and the constant beeping of machines were the sounds that flooded the air. Not very tropical. I won't be too graphic about the smells, but let's just say that the adult down the hall that didn't make it in time to the bathroom, certainly made things interesting for the rest of us. The cold room, neutral colors and bright lights made the atmosphere feel chilly, not exactly how the sun might feel if I were laying out on a beach.
The night was very long. By 2 a.m. they transferred us to UMC and I followed the ambulance through town. We had to go to their pediatric emergency room first, and I spent another 5 hours, waiting and answering questions. By this point, it was all I could do to keep my eyes open, and not slur everything together as I spit out his medical history to the 4th Resident that wanted to go through the same sheet of questions. I found myself seriously wondering why they couldn't all have laptops that were networked, so they would only have to ask for the info once!
By 7 a.m. we were shown to our room. It was a lovely, rectangular room with 3 colorful, metal cribs. Next to Sam's new bed, was a chair that I could tell had the potential of being pulled out into a cot, but I was quickly informed that it could only be pulled out from 8 p.m. to 7 a.m. I looked at the nurse, with serious hate building in my eyes, and asked, "...you mean I have to wait until tonight to get any sleep?" to which she nodded and said yes. I knew it was going to be a long day! I wasn't even rational by that point, so I'm just hoping I didn't say anything too mean to her. It wasn't her fault, but I was just so tired.
Sam was diagnosed with viral pneumonia and needed constant oxygen through the night and the first part of the day, but he began to respond well to the treatment and we were able to wean him off the oxygen by around noon. The oxygen was the only thing keeping him there (as usual) because everything else we are able to monitor from home. So, I watched the monitor all day, hoping that number wouldn't fall too low. 93 meant freedom, 92 meant more oxygen and a definate night there. It is very difficult to spend your day obsessing about a number on a machine!
It stayed at 93 often, but didn't dip, so we were realeased around 5 p.m. that evening. I was still wearing the same clothes from the day before, no makeup, no deodorant, a pounding headache (not that this was all about me) but I'm sure I looked a sight as I carried Sam (weighing 48 pounds) still in his hospital gown, his chest x-rays and all the other misc. things that collect in a day at the hospital, down the street to where I was parked.
As we made the 2 hour drive home, I pondered the experience, and all the previous ones. It definately has never been anywhere close to paradise or a vacation, but I have learned a thing or two that I would like to note for future references:
1. might be a good idea to have an overnight bag always packed, in the car and ready to go. You'd think I could have learned this maybe 6 visits ago!
2. pink toenails on a little boy can get more attention from every nurse in the room than just about anything else.
3. hospital food tastes better when you're too tired to know what's going in your mouth.
4. it would be nice to have at least one bathroom for the parents, closer than out the door of the ped's floor where you have to repunch in a code and wait for someone to open the door every time.
5. the kindness of strangers can brighten a long day, even if all they're bringing is a cold bologna sandwich.
6. A bathroom break is a great excuse to use, when they come with needles and gauze to draw blood or put in a line.
7. and things could always be worse, as I learned from the little girl sharing our room who was 13 months old and had burns covering most of her face and scalp or the 7 month baby girl in the crib next to ours who eats with a feeding tube and faces a liver transplant and possible dialysis for her sweet life or the door down the hallway that had info about chemotherapy posted to it.
I am very blessed. Life has not always been easy with the scares that Sam has given us and the things he has taught us about faith, but I am very blessed. I have family who will help us out in a pinch, a husband who was willing to drive back from CA and cancel their day of fun, just so he could help me out. I have a wonderful little boy, who challenges us, but loves us unconditionally. When things were at their worst, he could smile at me and put his arms around my neck and everything else just melted away. So, for now at least, I'm happy to keep those trips of fun and excitement and utter relaxation on the shelf of someday and just be content with my own day in paradise.
Thursday, May 1, 2008
My Two Boys
I just wanted to post and brag a bit about my two oldest boys! First of all, I can't believe they are growing up so fast, but I couldn't be more pleased with the young men they are growing into.
Last night was pack meeting. Chipper is no longer a cub scout. It was definately a feeling mixed with pride and sadness and wonder that it had all come and went so quickly. It seems like just yesterday, I was attending his first pack meeting with him. Last night he earned his Webelos patch, his Religious knot and his Arrow of Light award. He has worked very hard to earn these. Even with us moving to Vegas and back, he has attended scouts every chance he could. Last night, he missed baseball practice in order to go to Pack meeting, and afterwards as we drove up by the ball park to see if he could still catch some practice, he had such a good attitude about things. No one was there, and because of him being sick the first 2 days of the week, we both knew that it meant he probably wouldn't be playing in tonight's game, but his response was, "that's okay, it was much more important for me to earn my Arrow of Light". I'm thankful for a sweet boy who shows me every day where priorities should be. He is bright and cheerful and such a joy to have as a son. He is always willing to help out, even Sunday at Brodie's baptism, there was no one to lead the music, so he did. He had learned how to lead at his Webelos day camp last year, and wasn't afraid to share that newly learned talent. I hope he continues on through life with that type of willingness. I love you Chipper!
Also, last night, Mitchell graduated from a Wolf to a Bear and earned his Wolf badge as well as a gold arrow point. He was so excited. He's already brought me his shirt and badge this morning, so I can stick it on. I love to see his enthusiasm. He has been blessed with good leaders and so far, loves scouts! I'm so thankful that these types of programs exist and that my boys have had the opportunity to participate. Mitchell attacks everything in life with a great big smile and a lot of passion. Even when he is upset about something, he doesn't just mope, you "know" he's upset! But I wouldn't have him any other way! Once he calms down, he's always sweet and willing and just a wonderful boy! It seems like just yesterday, he was a tiny baby in the NICU struggling to breathe, and now, he is so full of life and energy! I'm very thankful to be his mother and for the past 9 years, as well as the many, many more years to come! I love you Mitchell!
Last night was pack meeting. Chipper is no longer a cub scout. It was definately a feeling mixed with pride and sadness and wonder that it had all come and went so quickly. It seems like just yesterday, I was attending his first pack meeting with him. Last night he earned his Webelos patch, his Religious knot and his Arrow of Light award. He has worked very hard to earn these. Even with us moving to Vegas and back, he has attended scouts every chance he could. Last night, he missed baseball practice in order to go to Pack meeting, and afterwards as we drove up by the ball park to see if he could still catch some practice, he had such a good attitude about things. No one was there, and because of him being sick the first 2 days of the week, we both knew that it meant he probably wouldn't be playing in tonight's game, but his response was, "that's okay, it was much more important for me to earn my Arrow of Light". I'm thankful for a sweet boy who shows me every day where priorities should be. He is bright and cheerful and such a joy to have as a son. He is always willing to help out, even Sunday at Brodie's baptism, there was no one to lead the music, so he did. He had learned how to lead at his Webelos day camp last year, and wasn't afraid to share that newly learned talent. I hope he continues on through life with that type of willingness. I love you Chipper!
Also, last night, Mitchell graduated from a Wolf to a Bear and earned his Wolf badge as well as a gold arrow point. He was so excited. He's already brought me his shirt and badge this morning, so I can stick it on. I love to see his enthusiasm. He has been blessed with good leaders and so far, loves scouts! I'm so thankful that these types of programs exist and that my boys have had the opportunity to participate. Mitchell attacks everything in life with a great big smile and a lot of passion. Even when he is upset about something, he doesn't just mope, you "know" he's upset! But I wouldn't have him any other way! Once he calms down, he's always sweet and willing and just a wonderful boy! It seems like just yesterday, he was a tiny baby in the NICU struggling to breathe, and now, he is so full of life and energy! I'm very thankful to be his mother and for the past 9 years, as well as the many, many more years to come! I love you Mitchell!
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