Finger painting in my PJs is always fun!!
Saturday, January 24, 2009
Friday, January 23, 2009
Posting twice today!!! Ah the flu bug... Nash caught it Sunday night and still has it. We went to ER in the middle of the night because he threw up every 15 minutes. Wouldn't hardly move. I was pretty scared. It has gotten better, but he still throws up on occasion and has poops (what Nash calls it.) Today is the first day he decided to try and play with toys so hopefully he is turning the corner. His reserve isn't much since he is soooo skinny. At the doctor this week he was one pound heavier then he was in Sept. Not so good since he has grown an inch or so.
It so happens that a high school friend lives in CR and is a Ped Nutritionist, so we are going to chat and she is going to give me some suggestions to beef Nash up a bit since he has had the flu twice in two months. Being ill not only is hard on him, but keeps him from therapy. Had to cancel seven appointments this week. The doctor said today that children with weak immune systems are taking a week to a week and a half to recover form the strand of flu they have been seeing this last few weeks.
On a positive note he asked for Marcer cheeseee today. Mac and Cheese.. So he attempted to say it and wanted to eat!! Two pluses!
So after being barfed on at least 18 times I knew it would be an absolute miracle not to get this... We were not spared. At about 3 AM Thursday morning I heard Nate throwing up and within ten minutes I joined him. We have not thrown up nearly as much as Nash, but our bodies are hurting.
So we figure we all got this from Nash getting a kiss from a girl at church. Took him to the nursery for the first time... Figured I needed to expose him (yeah, might be thinking twice now). Anyway, I walk in and this 2 year old girl comes grabs Nash's cheeks and kisses him on the lips. I cracked up. Nash just looked at me like, "What happened MOM?" The nursery attend informed me that the little girl was the Youth Minister's Daughter... Which some how makes it more funny!! So after I threw up and then was sitting on the toilet (catch my drift) about 3:30 AM I told Nate... This is all because our son got his first kiss from the preachers daughter at church. We laughed! Yeah, leave it up to me to think of something funny in such a crappy moment...
Well, I need to go lay down. Starting to have some chest pains... Who knows what that could be, but don't feel like making another trip to St Lukes. Even though some how when we were sitting in ER felt comfortable... Almost like home... Most people get nervous with doctors running around, medical info, paperwork, and you name it... Us well... Been there and done that before for months, so comfortable... Well accept for the fact that Nash missed the barf bag and threw up between my legs and it looks like I peed my pants. Poor little guy... Hope he has beat this nasty flu. I miss him giggling and playing... However, I don't miss telling him NO NO all the time. He has cuddled a lot, which I am sure he is sooooo ready to be done with. As much as I love lap time, I hope it is over soon... Meaning Nash is better and on the go go go! I could hold him forever! -JLK
It so happens that a high school friend lives in CR and is a Ped Nutritionist, so we are going to chat and she is going to give me some suggestions to beef Nash up a bit since he has had the flu twice in two months. Being ill not only is hard on him, but keeps him from therapy. Had to cancel seven appointments this week. The doctor said today that children with weak immune systems are taking a week to a week and a half to recover form the strand of flu they have been seeing this last few weeks.
On a positive note he asked for Marcer cheeseee today. Mac and Cheese.. So he attempted to say it and wanted to eat!! Two pluses!
So after being barfed on at least 18 times I knew it would be an absolute miracle not to get this... We were not spared. At about 3 AM Thursday morning I heard Nate throwing up and within ten minutes I joined him. We have not thrown up nearly as much as Nash, but our bodies are hurting.
So we figure we all got this from Nash getting a kiss from a girl at church. Took him to the nursery for the first time... Figured I needed to expose him (yeah, might be thinking twice now). Anyway, I walk in and this 2 year old girl comes grabs Nash's cheeks and kisses him on the lips. I cracked up. Nash just looked at me like, "What happened MOM?" The nursery attend informed me that the little girl was the Youth Minister's Daughter... Which some how makes it more funny!! So after I threw up and then was sitting on the toilet (catch my drift) about 3:30 AM I told Nate... This is all because our son got his first kiss from the preachers daughter at church. We laughed! Yeah, leave it up to me to think of something funny in such a crappy moment...
Well, I need to go lay down. Starting to have some chest pains... Who knows what that could be, but don't feel like making another trip to St Lukes. Even though some how when we were sitting in ER felt comfortable... Almost like home... Most people get nervous with doctors running around, medical info, paperwork, and you name it... Us well... Been there and done that before for months, so comfortable... Well accept for the fact that Nash missed the barf bag and threw up between my legs and it looks like I peed my pants. Poor little guy... Hope he has beat this nasty flu. I miss him giggling and playing... However, I don't miss telling him NO NO all the time. He has cuddled a lot, which I am sure he is sooooo ready to be done with. As much as I love lap time, I hope it is over soon... Meaning Nash is better and on the go go go! I could hold him forever! -JLK
Holland...
Good Afternoon!! We just got word that Nash will be going to the Twin Cities Shiners Hospital in Feb! We are very excited and thankful for this opportunity. We hope and pray that we find more ways to help Nash be all that he can be!!
About an hour after I made all the arrangements I had a mother call whom I had spoke with a week or so ago. Her twins are on the IH Wavier and both have CP. They are a few years older then Nash and she is very knowledgable about Cerbral Palsy. Wonderful woman to talk with. We have discussed treatments and also the reality of raising a child with a disability. I have said to my family a few times that it is hard to relate to other mom's. This mother and I just discussed that. About how at times we live day to day to get through and how other days we are looking to the future and how to make it wonderful for our children. Educating ourselves about things we never dreamed of being educated on. Dealing with the reality and often times stressful situations can be hard and take a toll on us, but with all that being said we are so happy and thankful to be moms! Moms of wonderful kids!
Below is what she sent me about a mother discribing her experience of raising a disabled child. As different and painful Holland can be sometimes... We LOVE it there!!! -JK
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . .When you're going to have a baby, it's like planning a wonderful vacation trip to Italy. You get a bunch of guide books and make all your plans. The Colosseum . . . the Michelangelo David . . . the gondolas of Venice. You get a book of handy phrases and learn how to say a few words in Italian. It's all very exciting"."Finally, the time comes for your trip. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says:"Welcome to Holland.""Holland?!" you say. "Holland? I signed up for Italy. All my life I've dreamed of going to Italy!"I'm sorry," she says. "There's been a change and we've landed in Holland."But I don't know anything about Holland! I never thought of going to Holland! "I have no idea what you do in Holland!"What's important is that they haven't taken you to a terrible, ugly place, full of famine, pestilence and disease. It's just a different place.So you have to go out and buy a whole new set of guide books . . . you have to learn a whole new language . . . and you'll meet a whole new bunch of people you would never have met otherwise.Holland. It's slower paced than Italy, less flashy than Italy . . . but after you've been there for a while, and you've had a chance to catch your breath, you look around and begin to discover that Holland has windmills and Holland has tulips - Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a great time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I planned." And the pain of that will never, ever, ever, ever go away. And you must accept that pain - because the loss of that dream is a very, very significant loss.But . . . if you spend your time mourning the fact that you never got to go to Italy, you may never be available to enjoy the very lovely, very special things about Holland."Welcome to Holland!"
By Emily Perly Kingsley
About an hour after I made all the arrangements I had a mother call whom I had spoke with a week or so ago. Her twins are on the IH Wavier and both have CP. They are a few years older then Nash and she is very knowledgable about Cerbral Palsy. Wonderful woman to talk with. We have discussed treatments and also the reality of raising a child with a disability. I have said to my family a few times that it is hard to relate to other mom's. This mother and I just discussed that. About how at times we live day to day to get through and how other days we are looking to the future and how to make it wonderful for our children. Educating ourselves about things we never dreamed of being educated on. Dealing with the reality and often times stressful situations can be hard and take a toll on us, but with all that being said we are so happy and thankful to be moms! Moms of wonderful kids!
Below is what she sent me about a mother discribing her experience of raising a disabled child. As different and painful Holland can be sometimes... We LOVE it there!!! -JK
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . .When you're going to have a baby, it's like planning a wonderful vacation trip to Italy. You get a bunch of guide books and make all your plans. The Colosseum . . . the Michelangelo David . . . the gondolas of Venice. You get a book of handy phrases and learn how to say a few words in Italian. It's all very exciting"."Finally, the time comes for your trip. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says:"Welcome to Holland.""Holland?!" you say. "Holland? I signed up for Italy. All my life I've dreamed of going to Italy!"I'm sorry," she says. "There's been a change and we've landed in Holland."But I don't know anything about Holland! I never thought of going to Holland! "I have no idea what you do in Holland!"What's important is that they haven't taken you to a terrible, ugly place, full of famine, pestilence and disease. It's just a different place.So you have to go out and buy a whole new set of guide books . . . you have to learn a whole new language . . . and you'll meet a whole new bunch of people you would never have met otherwise.Holland. It's slower paced than Italy, less flashy than Italy . . . but after you've been there for a while, and you've had a chance to catch your breath, you look around and begin to discover that Holland has windmills and Holland has tulips - Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a great time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I planned." And the pain of that will never, ever, ever, ever go away. And you must accept that pain - because the loss of that dream is a very, very significant loss.But . . . if you spend your time mourning the fact that you never got to go to Italy, you may never be available to enjoy the very lovely, very special things about Holland."Welcome to Holland!"
By Emily Perly Kingsley
Friday, January 16, 2009
Nash went sledding for the first time earlier this week before C.R. had record lows. -29* YUCK!!!
Mom and Jordanne came to visit for a couple days. They helped me touch up paint and play with Nash. We also went to the movie Marley and Me. First movie at the theater I had seen in probably 4 years. Loved it and cried a couple different times. Some of it seems so real and parrel to our lives. Mom and Jordane went sledding with Nash after we got another 7 inches of snow. I am trying to post pictures, but is keeps saying error, so we'll see. At first Nash did not like it, but after a few minutes of forcing him to sled he was having a blast and then cried and threw a fit after going in the house. That is until Jordanne and Nash had Coco... We'll mostly Nash had coco. He loves it! Sugar rush!! So hopefully, the weather gets warmer in the next couple days so we can go outside and play in the snow yet again! It was great to get some fresh air!
Nash got his new glasses today. They fit much better then the old ones. He is doing ok keeping them on. He's already lost them once at Hy-Vee. All the sudden I noticed he didn't have on his glasses... Nate and I were looking everywhere... Back tracking where we had been. Finally, we found them laying in the yogurt aisle. So two hours after we bought them we already about lost them. Sneaky little guy. I have a feeling this won't be the last time. Need to invent some sort of buzzer that when they come off his nose it buzzes so I pay attention.
Nash has been talking up a storm lately. Trying to say everything we say. Sometimes he cracks himself up and just giggles at himself. Pretty funny! He'll even start to do something he knows he isn't suppose to be doing and he will say "No no" the entire time. Unfortunately, him telling himself "no no" doesn't stop him from doing it. You just have to wander what his little mind is thinking... "Hmmm if I say No no then maybe they won't." Or maybe, "If I say no no then they will know that I know I am not suppose to do this and just ignore me because they know I know." Yeah, whatever he may be thinking it isn't working... He still is in trouble.
Now that Nash gets a couple baths a day so his muscles relax. He has been getting a little to relaxed and has pooped twice in the tub. (Yeah when he is older and reads this he is going to flip). So son... Just remember by now you have probably embarrassed your mom a time or two and as a parent is is one of my jobs to embarrass you!
Let's just say this tub pooping thing has got to stop. Makes me sick. Nate fished out the last ones. He's not a fan either! YUCK! As if diapers are not bad enough!
Things seem to be going well here. Keeping busy and ready for summer already.. OK at least spring.
Hope all is well for you. Keep in touch!
JK
Mom and Jordanne came to visit for a couple days. They helped me touch up paint and play with Nash. We also went to the movie Marley and Me. First movie at the theater I had seen in probably 4 years. Loved it and cried a couple different times. Some of it seems so real and parrel to our lives. Mom and Jordane went sledding with Nash after we got another 7 inches of snow. I am trying to post pictures, but is keeps saying error, so we'll see. At first Nash did not like it, but after a few minutes of forcing him to sled he was having a blast and then cried and threw a fit after going in the house. That is until Jordanne and Nash had Coco... We'll mostly Nash had coco. He loves it! Sugar rush!! So hopefully, the weather gets warmer in the next couple days so we can go outside and play in the snow yet again! It was great to get some fresh air!
Nash got his new glasses today. They fit much better then the old ones. He is doing ok keeping them on. He's already lost them once at Hy-Vee. All the sudden I noticed he didn't have on his glasses... Nate and I were looking everywhere... Back tracking where we had been. Finally, we found them laying in the yogurt aisle. So two hours after we bought them we already about lost them. Sneaky little guy. I have a feeling this won't be the last time. Need to invent some sort of buzzer that when they come off his nose it buzzes so I pay attention.
Nash has been talking up a storm lately. Trying to say everything we say. Sometimes he cracks himself up and just giggles at himself. Pretty funny! He'll even start to do something he knows he isn't suppose to be doing and he will say "No no" the entire time. Unfortunately, him telling himself "no no" doesn't stop him from doing it. You just have to wander what his little mind is thinking... "Hmmm if I say No no then maybe they won't." Or maybe, "If I say no no then they will know that I know I am not suppose to do this and just ignore me because they know I know." Yeah, whatever he may be thinking it isn't working... He still is in trouble.
Now that Nash gets a couple baths a day so his muscles relax. He has been getting a little to relaxed and has pooped twice in the tub. (Yeah when he is older and reads this he is going to flip). So son... Just remember by now you have probably embarrassed your mom a time or two and as a parent is is one of my jobs to embarrass you!
Let's just say this tub pooping thing has got to stop. Makes me sick. Nate fished out the last ones. He's not a fan either! YUCK! As if diapers are not bad enough!
Things seem to be going well here. Keeping busy and ready for summer already.. OK at least spring.
Hope all is well for you. Keep in touch!
JK
Sunday, January 4, 2009
Happy New Year!!
We had a wonderful Christmas and New Year! We went to my parents house for Christmas and Nate's parents and my parents came for New Years Eve. Nash loved every bit of it!
Of course being the only grandchild he got spoiled with new toys and clothes. Lots of things to use for therapy.
He is getting fit for a new pair of glasses that hopefully stay on and don't break as easily. These you can twist and turn and roll up into a ball, so hopefully they work better then his last pair. Now to stop him from chewing the lenses. We are also getting new eye patched that hopefully do not fall off. His next eye appointment is in Feb. We are curious to see what the doctor thinks about the development of his right eye after being patched. Nate and my mom think it is really helping. I don't notice it as much because I am fighting him everyday to keep the patch on!
Nash's PT & OT feel that he should be seen by a Neurologist and Orthopedic Doctor. Shriners have get doctors for kids with CP so we are working on getting an appointment in MN. Nash is growing tall fast, which makes his little leg muscles more tight. He wears braces on his legs and feet at nap time to stretch them. The goal is all night. I am pretty sure this will not go over so well. I don't think I could have my legs straight all night. We will have to wait and see.
Nash has still be working on walking. No further development there. Talking... He is coming. Some great words and word assotiation. Everytime we turn on the lights he says "Lights." He is working on naming fruit. He loves his new Brainy Baby video. I would recommend them to any family. He calls Gma Kuehl Choo Choo, because she acts like a train and carries him around the house. Gma Blair is "Our God," because she always sings to him. Glad I am just mommy and Nate is Daddy. You would think he would call me "no no" as much as I say it to him.
I am saying ti right now as he tries to climb on my lap, because he wants to watch Utube ABC's and Our God Videos.
So I better Go Go GO!! I will hopefully post some pictures soon!
Happy New Year to you all!!
Jayme
We had a wonderful Christmas and New Year! We went to my parents house for Christmas and Nate's parents and my parents came for New Years Eve. Nash loved every bit of it!
Of course being the only grandchild he got spoiled with new toys and clothes. Lots of things to use for therapy.
He is getting fit for a new pair of glasses that hopefully stay on and don't break as easily. These you can twist and turn and roll up into a ball, so hopefully they work better then his last pair. Now to stop him from chewing the lenses. We are also getting new eye patched that hopefully do not fall off. His next eye appointment is in Feb. We are curious to see what the doctor thinks about the development of his right eye after being patched. Nate and my mom think it is really helping. I don't notice it as much because I am fighting him everyday to keep the patch on!
Nash's PT & OT feel that he should be seen by a Neurologist and Orthopedic Doctor. Shriners have get doctors for kids with CP so we are working on getting an appointment in MN. Nash is growing tall fast, which makes his little leg muscles more tight. He wears braces on his legs and feet at nap time to stretch them. The goal is all night. I am pretty sure this will not go over so well. I don't think I could have my legs straight all night. We will have to wait and see.
Nash has still be working on walking. No further development there. Talking... He is coming. Some great words and word assotiation. Everytime we turn on the lights he says "Lights." He is working on naming fruit. He loves his new Brainy Baby video. I would recommend them to any family. He calls Gma Kuehl Choo Choo, because she acts like a train and carries him around the house. Gma Blair is "Our God," because she always sings to him. Glad I am just mommy and Nate is Daddy. You would think he would call me "no no" as much as I say it to him.
I am saying ti right now as he tries to climb on my lap, because he wants to watch Utube ABC's and Our God Videos.
So I better Go Go GO!! I will hopefully post some pictures soon!
Happy New Year to you all!!
Jayme
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