In the past few years we have become germ-a-phobias. House arrest must not be enough to keep these yuckie germs away from Nash. Trying to figure out where in the world he got this last cold/flu... CRAP!
My only conclusion it that I let him be a big boy and try and open the door at therapy... Hmmmm could it have been that door handle... I thought, to myself... "I should wash his hands, OK Jayme just a door handle... People will think your are psycho."
As much as we try to protect him these germs seem to find their way into little Nash... Starting last Thursday with a sore throat... To a runny nose, lots of coughing, to throwing up last night... Slight fever today and boy who will just lays on the couch, won't eat, and asked for Naps... If you know Nash you know he eats all the time and has not been taking naps for months.
So like normal he decided to share his germs with his mom... Yep... Really moms how do we escape getting sick when our kids are caughing, sneezing, and barfing on us... Impossible! That and the lack of sleep are a sure way to get sick too. I am thinking I need to invent a mom body suit with built in Vit C filters!!!
Ahhh with all this our smoke detecters decided to go off at 4 AM Sunday AM. Yeah, ran out of the house... Not fire Praise God... Thought they were Carbon Dioxide detecter too, so we called the service guy... Only to find out after a $110.00 service call at 5 AM that we have electric heat and they cannot produce Carbon Dioxide... Yeah... Bet they are laughing at the shop this morning... DUH!!! Reality is all is better then a fire. Electrician came today... Faulty detector. Probably will get that service bill too... Still all far better then a fire.
Through Nash's cold he still thought it was super cool to ride in the back of the car laying with me while we drove to the service guys office to read the phone number off one of the trucks... Yep, Crazy Kuehls... If it were something bad we knew we should not go into the home... So we took a car ride and Nash smiled!!
Overall Nash is doing well. He has been talking more... WE LOVE IT!!! I want to write more on his progress, but he is asking for a cracker and I soooooo need to get food in him so I got to run... Hopefully, he is turning the corner!!!
Monday, December 7, 2009
Thursday, November 12, 2009
Funny or Naughter... How about Both!
I find myself lately wondering if things Nash does and say are Funny or Naughty. I am now realizing they are both... Slightly Naughty and darn funny!
With Nash's slow development of language we often have wondered what is going on in his mind... With his ability to get a few more words out we are finding out. And sometimes it is down right hilarious.
Besides saying... "Toot" every time someone lets one go, he has expanded to giggling along with it and often times really cracking up at his own gas!
He stuck his fingers in his mouth and gaged a little and to my surprise he looked and me and said, "Puke!" Ummm.. Totally got that from me saying... "Stop that or you will puke." Nash's gag reflexes are crazy. One little thing and he gags and often pukes... Prefect a bulimic 3 year old.
While holding play dough up to his mouth he says... "No no don't eat it!" Followed of course by a bite or he rubs it on his mouth smiling at me...
One of my favorites is... He does something he knows is pleasing to us or he accomplishes something we have been working on and he says... "Good Boy Good Boy." We laugh and say, "You're right you are a good boy." He just smiles.
He reached in my mouth last week and grabbed my tongue and said "Tongue." I was shocked he know what it was... He saw something on TV and named it and again I was shocked. He must have these things in his head, but often times cannot make the connection to get them out. I do however LOVE that it is all coming together more and more. I just hope and pray someday he will be able to talk freely... I am ready for those embarrassing moments at the store. I am ready for the night sitting by his bed for an hour telling it is time to go to sleep and he just keeps on talking. We love his little voice and are SOOOOO Thankful we get to hear it!
However, we are not sure he will ever talk much in Speech therapy. This week he talked throughout the hour of PT only to say one word in his half hour speech session & that word was "Bye." Yep, spaced out the entire time and would not say a word. We were making pretend Ice Cream cones. He loves Ice Cream, but not a word. I was going nuts, because of course I just told the therapist he talked a lot during PT. AHHHH kids they will make liars out of you!
And wouldn't you know we got into the van and he says, "I.... want.... Ice Cream.... Please." So it was in there, but at that time he did not want to talk about ice cream at all. Little stinker!! Yep, getting more gray hair!
Sometimes I laugh, because sometimes I just cannot help it. He can be one funny little guy. Who stops and gives me all kinds of kisses when I ask... Less of course when I ask while he is in speech therapy.
I find myself many days smiling more and giggling more with Nash. Having fun! Living a little life sometimes that we call "normal." You know the norm for other people that we don't often have... Some days we are having "normal" and it is AWESOME!
Tonight as the respite worker came to help out while I was going to run errands... Didn't happen, which is besides my point... Anyway, Nash after eating dinner I gave him some pumpkin dessert he was smashing on the counter, rolling it in his hands, licking it off, and making a REAL big mess.
She said, "Oh no Nash you are making a real bug mess..." I said, "Don't worry about it, what other age in life is it ok or as fun to play in your food." She said... "Nash you are lucky to have your mommy." As I cleaned up and she put him in the bathtub I started crying a bit... For one of the first times I let that sink in... She is right Nash is lucky (blessed) to have me. I sometimes beat myself up with thinking there is always more I could do to help him. I should this... I should that... If only he wasn't born so early... So many things us moms try to do and burdens we carry. Reality is nothing could have changed where we are today and he is blessed to have a mom and dad who care soooo much and would do anything in the world they could do for him. We are also sooo blessed to have Nash... He has taught me more about life, true love, faith, strength, and determination then anyone I have ever met. God did know what He was doing when He gave me His child Nash to raise.
Words... In reflection... They are soooooo strong. Every word said can never be taken back... Words can be funny, inspiring, hurtful, and just plain wonderful when your three year old is finally using a few. They can bring tears to your eyes or laughter to your soul.
I say... Bring on more words... And keep coming with Funny, but keep naughty at a minimal!
With Nash's slow development of language we often have wondered what is going on in his mind... With his ability to get a few more words out we are finding out. And sometimes it is down right hilarious.
Besides saying... "Toot" every time someone lets one go, he has expanded to giggling along with it and often times really cracking up at his own gas!
He stuck his fingers in his mouth and gaged a little and to my surprise he looked and me and said, "Puke!" Ummm.. Totally got that from me saying... "Stop that or you will puke." Nash's gag reflexes are crazy. One little thing and he gags and often pukes... Prefect a bulimic 3 year old.
While holding play dough up to his mouth he says... "No no don't eat it!" Followed of course by a bite or he rubs it on his mouth smiling at me...
One of my favorites is... He does something he knows is pleasing to us or he accomplishes something we have been working on and he says... "Good Boy Good Boy." We laugh and say, "You're right you are a good boy." He just smiles.
He reached in my mouth last week and grabbed my tongue and said "Tongue." I was shocked he know what it was... He saw something on TV and named it and again I was shocked. He must have these things in his head, but often times cannot make the connection to get them out. I do however LOVE that it is all coming together more and more. I just hope and pray someday he will be able to talk freely... I am ready for those embarrassing moments at the store. I am ready for the night sitting by his bed for an hour telling it is time to go to sleep and he just keeps on talking. We love his little voice and are SOOOOO Thankful we get to hear it!
However, we are not sure he will ever talk much in Speech therapy. This week he talked throughout the hour of PT only to say one word in his half hour speech session & that word was "Bye." Yep, spaced out the entire time and would not say a word. We were making pretend Ice Cream cones. He loves Ice Cream, but not a word. I was going nuts, because of course I just told the therapist he talked a lot during PT. AHHHH kids they will make liars out of you!
And wouldn't you know we got into the van and he says, "I.... want.... Ice Cream.... Please." So it was in there, but at that time he did not want to talk about ice cream at all. Little stinker!! Yep, getting more gray hair!
Sometimes I laugh, because sometimes I just cannot help it. He can be one funny little guy. Who stops and gives me all kinds of kisses when I ask... Less of course when I ask while he is in speech therapy.
I find myself many days smiling more and giggling more with Nash. Having fun! Living a little life sometimes that we call "normal." You know the norm for other people that we don't often have... Some days we are having "normal" and it is AWESOME!
Tonight as the respite worker came to help out while I was going to run errands... Didn't happen, which is besides my point... Anyway, Nash after eating dinner I gave him some pumpkin dessert he was smashing on the counter, rolling it in his hands, licking it off, and making a REAL big mess.
She said, "Oh no Nash you are making a real bug mess..." I said, "Don't worry about it, what other age in life is it ok or as fun to play in your food." She said... "Nash you are lucky to have your mommy." As I cleaned up and she put him in the bathtub I started crying a bit... For one of the first times I let that sink in... She is right Nash is lucky (blessed) to have me. I sometimes beat myself up with thinking there is always more I could do to help him. I should this... I should that... If only he wasn't born so early... So many things us moms try to do and burdens we carry. Reality is nothing could have changed where we are today and he is blessed to have a mom and dad who care soooo much and would do anything in the world they could do for him. We are also sooo blessed to have Nash... He has taught me more about life, true love, faith, strength, and determination then anyone I have ever met. God did know what He was doing when He gave me His child Nash to raise.
Words... In reflection... They are soooooo strong. Every word said can never be taken back... Words can be funny, inspiring, hurtful, and just plain wonderful when your three year old is finally using a few. They can bring tears to your eyes or laughter to your soul.
I say... Bring on more words... And keep coming with Funny, but keep naughty at a minimal!
Friday, November 6, 2009
Ahhh... Finally a Moment
These days it has been getting harder and harder to find that moment when I can sit down and update our Blog.
Nash has been phasing out naps... So that two hours a day where I did my work for the IH Waiver is gone... Trying to find other opportunities to sneak away to the computer and do work. Admitting that it often becomes video time for Nash... Yes, the major "No No" according to many articles... Do not let your TV become your child's baby-sitter... Well, how about educational videos?? Well, they are from time to time and frankly some days help me keep my sanity.
Some days I find my son sitting on my lap watching U-Tube videos on how to count to 50, colors and shapes, days of the week, months of the year, and his favorite "Our God is an Awesome God," while I am on the phone with families. Having to say, while is is slightly difficult it has been working in several ways... He can count to 50 and the families I am talking to have no idea my child is on my lap while I am working.
Nate often calls me "Super Mom." Juggling a million things at once doesn't make me feel like a super mom, but super inane sometimes... Reality is some nights I sit down with Nash falling to sleep in my arms around 8 PM and Nate is still at work and I do think... "WOW we accomplished a lot today." Then after thanking God for making it through my mind jogs to "whats on the agenda for tomorrow?"
Speaking to the many mothers I talk with whose childern have special needs I think they are all "Super Moms" the amount of stress dealing with doctors, insurance, DHS, paperwork, therapies, oh and of course caring for the child is down right nuts sometimes... Understanding it... Well, I have now realized it is impossible unless you are walking in the shoes. I find myself advocating for families and realizing I am fighting a giant Government. Often not on my to do list each day, because I am not even sure where to start... Yikes... Maybe someday!
Now for the real reason why you probably checkt our Blog updates!! Nash!! After Christmas I promise to get some pictures up... I asked for a new camera... Mine has not worked for months.
Nash is trying to talk more. Engaging in some short conversations. He for the most part answers simple questions. We just keep hoping and praying that his language will continue to develop so he can get out his thoughts instead of being frustrated. Little by little he says phases and this is making our lives a bit easier.
Walking... Pretty good... Up on the toes again... He is growing in more so his muscles get tighter as the bones grow. This makes him walk on his toes. Hence the reason for casting his legs at the beginning of Sept. Physical Therapist thought casting would occur three times a year for a month each... Now we see why. All this work now will hopefully prevent him from being wheelchair bound as he gets older. There are surgeries, however we do not feel cutting into Nash's legs or spine are the right answers. At least for now in his life... When he gets older and has opinions we will take those into consideration. For now we will do anything to prevent surgery... Cutting into the body always has some sort of negative side effect. Medications are similar, so we are trying the natural ways for now.
Nash has been a pretty happy little guy. Funny at times, which I LOVE!! Ah and his kisses he comes and gives me are the BEST thing ever!!
We are on what we call, "House Arrest" again this winter. Avoiding germs. Last year we tried minimal house arrest and it led to several colds and two vomitting flu bugs, and a hospital stay. The doctor felt with this year supposing to be the worst flu season ever to keep Nash at home. We agree! We also opted not to get the H1N1 shot, because of all the negative side affects. We are being very careful, taking probiotics and Vit D3. Hoping and praying that we avoid this flu season.
Yeah... If you haven't noticed we do LOTS of hoping and praying. Trying to avoid the worrying, which unfortunately comes with all children, but often more with childen who have special needs. Working so hard to help your child get where they are today, you want to avoid at all costs something that will set them back or cause them harm... That tends to bring ona little worry that you try to sqaush with prayers and faith!
Potty training... Sort of working on it... Many other people have said to wait or not to worry about it. Most people would be freaking out if their 3 year old was not going on the potty. Us... well thankful he knows what the potty is and that he is getting closer to being able to pull down his pants. Which not is super funny... When I go pee or Nate goes pee Nash says "P...ISSSSS." You're thinking... They taught him piss... No we did not! However, when we sit Nash down to try to go potty make the noise... "PSSSSS." Which Nash loves, however says "P..ISSSS." First time Nash did it was with me and I thought Nate taught him the word... Then Nate thought I did... Only to realize he said it was because of the noise I made.... Ahhh... super cute! But not what I was intending! We find ourselves having a quick chuckle and telling him "Good Boy for relating the noise with the activity." Then we make the noise correctly hoping that sooner then later he will pick it up!
Oh speaking of Good Boy.... Sometimes Nash tells us he is a "Good Boy" after doing something he knows we will say "Good Boy" to him... Example... Scooping his cereal on his own... After chewing a bit he says, "Good Boy!" Knowing we would say that to him. It is sooooo cute! Just makes us super thankful for progress!!
Fridays are Nate's day off and he and Nash went to drop something off at Gpa and Gma Kuehls... I hear they are home... Better go make lunch! Glad I finally had a moment....
Writing this Blog often helps me see how far Nash has come and how thankful we are to have such a wonderful blessing from God!
Nash has been phasing out naps... So that two hours a day where I did my work for the IH Waiver is gone... Trying to find other opportunities to sneak away to the computer and do work. Admitting that it often becomes video time for Nash... Yes, the major "No No" according to many articles... Do not let your TV become your child's baby-sitter... Well, how about educational videos?? Well, they are from time to time and frankly some days help me keep my sanity.
Some days I find my son sitting on my lap watching U-Tube videos on how to count to 50, colors and shapes, days of the week, months of the year, and his favorite "Our God is an Awesome God," while I am on the phone with families. Having to say, while is is slightly difficult it has been working in several ways... He can count to 50 and the families I am talking to have no idea my child is on my lap while I am working.
Nate often calls me "Super Mom." Juggling a million things at once doesn't make me feel like a super mom, but super inane sometimes... Reality is some nights I sit down with Nash falling to sleep in my arms around 8 PM and Nate is still at work and I do think... "WOW we accomplished a lot today." Then after thanking God for making it through my mind jogs to "whats on the agenda for tomorrow?"
Speaking to the many mothers I talk with whose childern have special needs I think they are all "Super Moms" the amount of stress dealing with doctors, insurance, DHS, paperwork, therapies, oh and of course caring for the child is down right nuts sometimes... Understanding it... Well, I have now realized it is impossible unless you are walking in the shoes. I find myself advocating for families and realizing I am fighting a giant Government. Often not on my to do list each day, because I am not even sure where to start... Yikes... Maybe someday!
Now for the real reason why you probably checkt our Blog updates!! Nash!! After Christmas I promise to get some pictures up... I asked for a new camera... Mine has not worked for months.
Nash is trying to talk more. Engaging in some short conversations. He for the most part answers simple questions. We just keep hoping and praying that his language will continue to develop so he can get out his thoughts instead of being frustrated. Little by little he says phases and this is making our lives a bit easier.
Walking... Pretty good... Up on the toes again... He is growing in more so his muscles get tighter as the bones grow. This makes him walk on his toes. Hence the reason for casting his legs at the beginning of Sept. Physical Therapist thought casting would occur three times a year for a month each... Now we see why. All this work now will hopefully prevent him from being wheelchair bound as he gets older. There are surgeries, however we do not feel cutting into Nash's legs or spine are the right answers. At least for now in his life... When he gets older and has opinions we will take those into consideration. For now we will do anything to prevent surgery... Cutting into the body always has some sort of negative side effect. Medications are similar, so we are trying the natural ways for now.
Nash has been a pretty happy little guy. Funny at times, which I LOVE!! Ah and his kisses he comes and gives me are the BEST thing ever!!
We are on what we call, "House Arrest" again this winter. Avoiding germs. Last year we tried minimal house arrest and it led to several colds and two vomitting flu bugs, and a hospital stay. The doctor felt with this year supposing to be the worst flu season ever to keep Nash at home. We agree! We also opted not to get the H1N1 shot, because of all the negative side affects. We are being very careful, taking probiotics and Vit D3. Hoping and praying that we avoid this flu season.
Yeah... If you haven't noticed we do LOTS of hoping and praying. Trying to avoid the worrying, which unfortunately comes with all children, but often more with childen who have special needs. Working so hard to help your child get where they are today, you want to avoid at all costs something that will set them back or cause them harm... That tends to bring ona little worry that you try to sqaush with prayers and faith!
Potty training... Sort of working on it... Many other people have said to wait or not to worry about it. Most people would be freaking out if their 3 year old was not going on the potty. Us... well thankful he knows what the potty is and that he is getting closer to being able to pull down his pants. Which not is super funny... When I go pee or Nate goes pee Nash says "P...ISSSSS." You're thinking... They taught him piss... No we did not! However, when we sit Nash down to try to go potty make the noise... "PSSSSS." Which Nash loves, however says "P..ISSSS." First time Nash did it was with me and I thought Nate taught him the word... Then Nate thought I did... Only to realize he said it was because of the noise I made.... Ahhh... super cute! But not what I was intending! We find ourselves having a quick chuckle and telling him "Good Boy for relating the noise with the activity." Then we make the noise correctly hoping that sooner then later he will pick it up!
Oh speaking of Good Boy.... Sometimes Nash tells us he is a "Good Boy" after doing something he knows we will say "Good Boy" to him... Example... Scooping his cereal on his own... After chewing a bit he says, "Good Boy!" Knowing we would say that to him. It is sooooo cute! Just makes us super thankful for progress!!
Fridays are Nate's day off and he and Nash went to drop something off at Gpa and Gma Kuehls... I hear they are home... Better go make lunch! Glad I finally had a moment....
Writing this Blog often helps me see how far Nash has come and how thankful we are to have such a wonderful blessing from God!
Monday, September 21, 2009
Shriner's Hosp in MN trip
This past Wednesday we went into the dealership to pick up Nate after work to head to Shriners in MN. While waiting for daddy to get off work Nash got a few bug bites. We arrrived in MN at 10:30 PM and checked into our hotel. Slept great and went for a swim in the morning. Then off to the Mall of America for lunch and a few rides before his afternoon appointment at Shriners. Lunch went well until Nash choked and threw up his entire lunch of choc. milk and mac and cheese. Thank you Famous Dave's for having a roll of papertowels at each table!! Since we were in the mall Nash got a new outfit. The one he was wearing was ummmm disgusting!! Survived that little episode... In new clothes and to Camp Snoopie where Nash would ride his first rides. Three rides in the bug bite on Nash head grew to the size of a golf ball... Not kidding. Right between his eyes on his forehead was this huge lump that turned red...
I was in a small panic... Never have I ever seen a bug bite do that. Stopped by security... They said go to ER.... Called shriners and told them what was going on and asked if we could just come there and they said no, but here are the directions to ER... So we get to ER and check in... One hour later sitting in the waiting room and not been seen we start thinking this is NUTS!! We are going to miss the shriners appointment we drove five hours too. So I go to the front desk ans ask how muhc longer before we see a doctor... They said at least two more hours because they were swamped. As we look around and see people in masks with the flu, a kid with a broken arm, and about 20 other people we call Shriners again and ask them if the nurse could at least look at it, since ER was getting us no where. The say yes so we leave ER and head to shriners... I am calming down. We arrive at Shriners 2 minutes late for our appointment. Everyone there shocked to see such a big bump on Nash head. Nate drives around MN looking for a pharmacy for some medication for Nash... Nurse looked at it and the swelling had begun to go down. Only the size of a bouncy ball at this point. She said it must have been a reaction. We were like yeah, but still cannot ffigure out why it took 18 hours for the reaction... Maybe something to do with the rides we were on... So we see one doc and he is impressed with Nash's development and how well the casting has worked for Nash's walking. Nash's hip and spine x-rays looked well. The doc did want Nash in foot braces so we were off to get fit for those...
You see at Shriners they make the braces right there... Over night... It is sooooo awesome. It would take us weeks to get them, but overnight at Shriners. Such a blessing!
Headed back to the hotel for a swim and then off to bed since Nash had another appointment the following morning. The neurologist was also happy with Nash's improvement and way impressed that Nash reads at least 12 words... Yeah you read it right Nash is learning to read. He loves it! Music and books... Oh and swimming... Nash loves the pool! The doctor said it would be good to take Nash swimming as much as possible... So we are going to look into that.
After that appointment we went to try on the braces. Took about and hour and a half to get them right, but they fit and are working well. We are very excited. We had another great experience there and go back in six months.
We drove home and the only funny thing is we were looking for five minutes trying to figure out this terrible smell only to notice the truck in front of us carrying dead animals. We notice it right before the merge right sign... Road construction for the next 8 miles. Nate sped around just in time... God was definately with us... I was gagging. It was nasty! We then laughed sooooo hard. Hello, how did it take us that long to figure it out... Right ahead of us... Hmmmm driver were you looking at the road??? Must not have been if he did not notice it!!! Ahhh,... I am sure way funnier to us. But it was one of those had to be there moments.
Typically trip... Had some unexpected and unwanted adventure... But again survived. The neat thing about it all was... Nash on the way to ER and in ER sang... Jesus loves me and Our God is an awesome God over and over... We saw God right through Nash and our panic and stress. Like Nash knew... It was all going to be ok and it was!! Praise God. The bump is now completely gone, which is wonderful! It grew right in front of my eyes... Very strange and scary as parents!
We had great news about his development. They kept saying the brain is damaged in some areas, but makes up for it in others... We know that is God... See Nash will not likely ever be able to play sports, but he has the gift to memorize songs and sing them. He also is very good educationally, which are all gifts and talants God gave Nash and we are sooooo thankful for those.
Once again our child taught us lessons... We can only hope we teach him as half as much as he teaches us!!
I was in a small panic... Never have I ever seen a bug bite do that. Stopped by security... They said go to ER.... Called shriners and told them what was going on and asked if we could just come there and they said no, but here are the directions to ER... So we get to ER and check in... One hour later sitting in the waiting room and not been seen we start thinking this is NUTS!! We are going to miss the shriners appointment we drove five hours too. So I go to the front desk ans ask how muhc longer before we see a doctor... They said at least two more hours because they were swamped. As we look around and see people in masks with the flu, a kid with a broken arm, and about 20 other people we call Shriners again and ask them if the nurse could at least look at it, since ER was getting us no where. The say yes so we leave ER and head to shriners... I am calming down. We arrive at Shriners 2 minutes late for our appointment. Everyone there shocked to see such a big bump on Nash head. Nate drives around MN looking for a pharmacy for some medication for Nash... Nurse looked at it and the swelling had begun to go down. Only the size of a bouncy ball at this point. She said it must have been a reaction. We were like yeah, but still cannot ffigure out why it took 18 hours for the reaction... Maybe something to do with the rides we were on... So we see one doc and he is impressed with Nash's development and how well the casting has worked for Nash's walking. Nash's hip and spine x-rays looked well. The doc did want Nash in foot braces so we were off to get fit for those...
You see at Shriners they make the braces right there... Over night... It is sooooo awesome. It would take us weeks to get them, but overnight at Shriners. Such a blessing!
Headed back to the hotel for a swim and then off to bed since Nash had another appointment the following morning. The neurologist was also happy with Nash's improvement and way impressed that Nash reads at least 12 words... Yeah you read it right Nash is learning to read. He loves it! Music and books... Oh and swimming... Nash loves the pool! The doctor said it would be good to take Nash swimming as much as possible... So we are going to look into that.
After that appointment we went to try on the braces. Took about and hour and a half to get them right, but they fit and are working well. We are very excited. We had another great experience there and go back in six months.
We drove home and the only funny thing is we were looking for five minutes trying to figure out this terrible smell only to notice the truck in front of us carrying dead animals. We notice it right before the merge right sign... Road construction for the next 8 miles. Nate sped around just in time... God was definately with us... I was gagging. It was nasty! We then laughed sooooo hard. Hello, how did it take us that long to figure it out... Right ahead of us... Hmmmm driver were you looking at the road??? Must not have been if he did not notice it!!! Ahhh,... I am sure way funnier to us. But it was one of those had to be there moments.
Typically trip... Had some unexpected and unwanted adventure... But again survived. The neat thing about it all was... Nash on the way to ER and in ER sang... Jesus loves me and Our God is an awesome God over and over... We saw God right through Nash and our panic and stress. Like Nash knew... It was all going to be ok and it was!! Praise God. The bump is now completely gone, which is wonderful! It grew right in front of my eyes... Very strange and scary as parents!
We had great news about his development. They kept saying the brain is damaged in some areas, but makes up for it in others... We know that is God... See Nash will not likely ever be able to play sports, but he has the gift to memorize songs and sing them. He also is very good educationally, which are all gifts and talants God gave Nash and we are sooooo thankful for those.
Once again our child taught us lessons... We can only hope we teach him as half as much as he teaches us!!
Thursday, September 10, 2009
I'M THREE
Nash had his birthday on 9-9-09! He started off the day by laying in bed and speaking spanish (he has a spanish video he just loves... Uses about 12 words on a regular basis) I walk in and say, "Good Morning & HAPPY Birthday!!" He smiles and says, "What are you doing?" I said, "I was working on the computer... What are you doing?" He responds, "Spanish." Amazed I carry on... "What do you want for breakfast?" He says, "Birthday Cake!" I say, "OK, What to drink?" He says "Milk."
I knew right then and there that this is going to be a good year!! That was a first ever conversation that went beyond me asking him a question and he giving a short answer. Amazing!!
He ate cake... I figured.. He talked and he only turns 3 once... Cake for breakfast once a year is not going to kill him. I let him choose meals and activities all day... Besides speech and Nate choose dinner... Anyway he wanted chicken nuggets.. Ate all four and a small fry and milk. Mowed it... I kept looking around to see if he dropped any... Nope!
He wanted a ride on the mower so we drove it around the yard. Played paino, swang, read, and of course watched a few videos.
We went to the Japanese. Osaka... They made it in front of you. Nate wanted to go there, Brice had never been to a Japanese place, and Nash well he wanted Chinese, but loved Japanese. The flames got real high and Nash leaned back and yelled "HOT!!!" Everyone cracked up. He ate like a champ... Seriously we have never seen him eat soooo much... He had steak, salad, soup, rice, candy, more steak, crackers, a choc milk, glass of water, and a cooked banana. Brice was scared to ride home with us for fear Nash would get sick in the car. He just kept eating... We figured he must be trying to gain weight for his doc apt tomorrow.
He had casts on his feet for three weeks. It was suppose to be 4 weeks, but he did soooo well they decided to take them off. For the first time we saw and still do see Nash walking on his flat feet. Not on his toes. He even stands in the middle of the room. It is sooooo neat! The therapist are shocked at how well it is working. The alternative is surgery and we as parents do not feel that is a good option for such a young child. When Nash is older and he can decide and has stopped growing will will proceed if need be, but for now this is amazing. His muscles are semi loose for the first time. We will likely be casting for a month every four to five months. Which is ok by us since we are seeing results.
When asked Nash responds the the following questions... How old are you? He says, "I'm 3"
What is your favorite color? "Yellow" What is your favorite animal? "Dog" We had to work on I'm 3 and him saying his name "Nash Kuehl." But the favorite color and animal were all him. Thinking he is smarter then we all know, but just struggles to verbalize things.
Yes, it has been forever since I blogged... Busy I guess. Summer has gone sooooo fast... We have had our ups and downs, but keep moving forward knowing God is right there holding us.
We did go camping this weekend... Nash loved it... Of course just in the back yard, but we had a blast. I personally loved it. Toilet and shower near by. Nash woke up in the middle of the night and said, "We're camping!!" and went right back to sleep. Cracked us up. We love hearing him talk. Music to our ears. Silent for so long and hearing words and words with meaning is so awesome! We are just soooo thankful he is talking. It pains me to know other parents whom will never hear there children talk. We just Praise God for progress!
We had his b-day party this weekend. Fun, but he was a little naughty... Cried during the party. He did dig into his Elmo cake, but wiped more on Nate then he put in his mouth. Probably better that way... Less of a sugar high!
We decided against school this fall. I am feeling really good about that. The school was very understanding and helpful. Principle has a son on an IEP so she is WONDERFUL!! He will continue Speech once a week with the AEA. Once a week at Witwer Children's Therapy and also OT and PT once a week there too. So we have a few less appointments, but still real busy.
We go to Shriners Hosp in MN next week. Curious to see what they feel his progress is. Always a little nervous too. Nash will be excited to swim at the hotel pool!
Well I need to run... I've got lots of work to do before he gets up from his nap.
Hope you all had a wonderful summer...
I have some pictures, but they won't load... My camara is broke... I will be asking for a new one for Christmas!! Good thing Aunt Jordanne takes lots of pictures!
I knew right then and there that this is going to be a good year!! That was a first ever conversation that went beyond me asking him a question and he giving a short answer. Amazing!!
He ate cake... I figured.. He talked and he only turns 3 once... Cake for breakfast once a year is not going to kill him. I let him choose meals and activities all day... Besides speech and Nate choose dinner... Anyway he wanted chicken nuggets.. Ate all four and a small fry and milk. Mowed it... I kept looking around to see if he dropped any... Nope!
He wanted a ride on the mower so we drove it around the yard. Played paino, swang, read, and of course watched a few videos.
We went to the Japanese. Osaka... They made it in front of you. Nate wanted to go there, Brice had never been to a Japanese place, and Nash well he wanted Chinese, but loved Japanese. The flames got real high and Nash leaned back and yelled "HOT!!!" Everyone cracked up. He ate like a champ... Seriously we have never seen him eat soooo much... He had steak, salad, soup, rice, candy, more steak, crackers, a choc milk, glass of water, and a cooked banana. Brice was scared to ride home with us for fear Nash would get sick in the car. He just kept eating... We figured he must be trying to gain weight for his doc apt tomorrow.
He had casts on his feet for three weeks. It was suppose to be 4 weeks, but he did soooo well they decided to take them off. For the first time we saw and still do see Nash walking on his flat feet. Not on his toes. He even stands in the middle of the room. It is sooooo neat! The therapist are shocked at how well it is working. The alternative is surgery and we as parents do not feel that is a good option for such a young child. When Nash is older and he can decide and has stopped growing will will proceed if need be, but for now this is amazing. His muscles are semi loose for the first time. We will likely be casting for a month every four to five months. Which is ok by us since we are seeing results.
When asked Nash responds the the following questions... How old are you? He says, "I'm 3"
What is your favorite color? "Yellow" What is your favorite animal? "Dog" We had to work on I'm 3 and him saying his name "Nash Kuehl." But the favorite color and animal were all him. Thinking he is smarter then we all know, but just struggles to verbalize things.
Yes, it has been forever since I blogged... Busy I guess. Summer has gone sooooo fast... We have had our ups and downs, but keep moving forward knowing God is right there holding us.
We did go camping this weekend... Nash loved it... Of course just in the back yard, but we had a blast. I personally loved it. Toilet and shower near by. Nash woke up in the middle of the night and said, "We're camping!!" and went right back to sleep. Cracked us up. We love hearing him talk. Music to our ears. Silent for so long and hearing words and words with meaning is so awesome! We are just soooo thankful he is talking. It pains me to know other parents whom will never hear there children talk. We just Praise God for progress!
We had his b-day party this weekend. Fun, but he was a little naughty... Cried during the party. He did dig into his Elmo cake, but wiped more on Nate then he put in his mouth. Probably better that way... Less of a sugar high!
We decided against school this fall. I am feeling really good about that. The school was very understanding and helpful. Principle has a son on an IEP so she is WONDERFUL!! He will continue Speech once a week with the AEA. Once a week at Witwer Children's Therapy and also OT and PT once a week there too. So we have a few less appointments, but still real busy.
We go to Shriners Hosp in MN next week. Curious to see what they feel his progress is. Always a little nervous too. Nash will be excited to swim at the hotel pool!
Well I need to run... I've got lots of work to do before he gets up from his nap.
Hope you all had a wonderful summer...
I have some pictures, but they won't load... My camara is broke... I will be asking for a new one for Christmas!! Good thing Aunt Jordanne takes lots of pictures!
Tuesday, July 28, 2009
He did it!!!
Sunday was an amazing day in Nash's development... After watching many children bend at the waist and pop right up over and over it hurt that our child could not. Nate has been working REALLY hard this summer with Nash on after he falls in the yard to put his "butt up" and stand up. Just last week Nate was thinking optimistically that in a month Nash would be able to do it. But on Sunday to our surprise Nash fell and worked really hard and stood up and began walking again. He did it three times... After that it was too hard for him, but hey PROGRESS!
Nate and I freaked out... Jumping up and down hugging and me of course crying. To many this seems soooooo simply and may not even seem like a milestone, but for Nash he moved a mountain in the backyard. It was AWESOME!!!
He also cracked several people up at church when... I picked him up and was saying shake shake.... I was being silly. We say... Shake Shake Shake... Shake your Bootie... Well I was not saying that, but Nash totally said SHAKE YOUR BOOTIE!!! As loud as possible. People cracked up... Not the choice of words at church but I guess it could have been worse.
It brings me great joy to share Nash's awesome success! He is growing up and definately beating odds.
Nate and I freaked out... Jumping up and down hugging and me of course crying. To many this seems soooooo simply and may not even seem like a milestone, but for Nash he moved a mountain in the backyard. It was AWESOME!!!
He also cracked several people up at church when... I picked him up and was saying shake shake.... I was being silly. We say... Shake Shake Shake... Shake your Bootie... Well I was not saying that, but Nash totally said SHAKE YOUR BOOTIE!!! As loud as possible. People cracked up... Not the choice of words at church but I guess it could have been worse.
It brings me great joy to share Nash's awesome success! He is growing up and definately beating odds.
Monday, July 20, 2009
Well... It's Been Awhile
Wow!! Haven't posted for some time... Seems like summer is flying... Just today I was thinking... "Nash's 3rd B-day is in a month and a half.. YIKES!!" His b-ady is 9-9-09 this year, which is pretty neat!
Let's see where did we leave off. We spent a week at Spirit Lake. One day of swimming weather and Nash and Nate took advantage of it. Nash drank some lake water and paid for it the next day. I about ran out of diapers!! Other then that we played cards, went fishing, walking, and of course ate WAY too much. Oh and I have to say it... Just to rub it into Great Gma Blair... Nate and I played as a team and we kicked BUTT!!! You see Gma does not like Nate and I playing together... She thinks we argue too much... Nate and I think it is because we always win!! hee hee!
After we left the lake we headed to mom and dad's where Nash rode the horse and enjoyed telling Sammy to... "Walk On!"
We drove back CR with mom and dad for the 4th of July weekend... We went fishing at the Kuehl Pond and the fish were biting... Practically jumping on the dock... We caught 109 fish. I think Gpa Blair had the most fun, but I will have to say I do not like fishing and that was fun! No touching worms or the fish... Thanks Dad! Nash not a fan of the fish!! Scared him a bit.
We loved the break from all the appointments and the house... It was wonderful for me to get away. Nash loved it too. Wish daddy could have stayed the whole week, but we are glad we got a few days with him.
We came back and got into our normal schedule of run from one appointment to another. During our running we went to Pella to see my college friend Rhonda and her baby. We stayed with Judy. It was a nice visit... We didn't even go up town... Didn't realize that until on the way home. On our way back to Pella we went to the opthomologist in Marshalltown. YUCK! Love the doctor... Hate the appointments. Nash is so bad now that we have to hold him down just to shine the light in his eyes. I feel horrible for him. He has been through so much medically that anyone who has a uniform on and touches him is not cool. It is stressful. Even haircuts are a major battle these days. This sheer terror lead to the discussion of when to have Nash's eye surgery. I would like to wait a year or so until we can get Nash calmed down. Dr Suh agreed. It is just one of those many choices we have had to make in Nash's life... Just not sure what is right...
Like sending him to school when he turns three... This is a battle I fight in my mind... I am leaning towards no and Nate yes. I am soooo torn.... 3 seems so young. He gets ill easy so it could be bad.... Plus I just worry about his safety, since he puts everything in he mouth.. (Example the n he choked on at the lake). I also want him to go for the social aspect and learning to follow istructions of the teacher... It's such a tough call. I am seeking any advice and opinions. I am asking everyone what they think... So far they are about 50/50 which isn't halping me much since I am in the same boat. We will just keep praying and see what happens.
Let's see... All this leads to this past weekend where Gpa & Gma Kuehl came to dinner Friday night and then on Sunday morning we went and watched mom and Jordanne skydive. Something not on my list of things to do before I die, but they had a Blast and it was fun watching them and getting to picnic with the entire family afterwards... At the picnic after getting on a fresh diaper Nash flirted with Emily... It was super cute and funny. Once again scaring me a little that he is like his uncle Evan.
This last month has been great. We have spent lots of time at several parks playing. Nash's balance is improving and his vocabulary is increasing. Swim lessons for therapy are going pretty good. He is using a spoon better and sometimes able to stab with the fork. He is learning better how to take on and off his clothes. Each step is a process that requires lots of work and creativity. Someday he will get it and life will be a little easier, however we know we will have new battles to fight... Likee School Bullies and school and other medical decisions we will be faced with in the future. All in all we are learning a lot along the way and are SOOOOO thankful that God blessed us with Nash. I just look at him sometimes in amazement and other times he cracks me up. Kids are sooooo funny! "I love it!"
Let's see where did we leave off. We spent a week at Spirit Lake. One day of swimming weather and Nash and Nate took advantage of it. Nash drank some lake water and paid for it the next day. I about ran out of diapers!! Other then that we played cards, went fishing, walking, and of course ate WAY too much. Oh and I have to say it... Just to rub it into Great Gma Blair... Nate and I played as a team and we kicked BUTT!!! You see Gma does not like Nate and I playing together... She thinks we argue too much... Nate and I think it is because we always win!! hee hee!
After we left the lake we headed to mom and dad's where Nash rode the horse and enjoyed telling Sammy to... "Walk On!"
We drove back CR with mom and dad for the 4th of July weekend... We went fishing at the Kuehl Pond and the fish were biting... Practically jumping on the dock... We caught 109 fish. I think Gpa Blair had the most fun, but I will have to say I do not like fishing and that was fun! No touching worms or the fish... Thanks Dad! Nash not a fan of the fish!! Scared him a bit.
We loved the break from all the appointments and the house... It was wonderful for me to get away. Nash loved it too. Wish daddy could have stayed the whole week, but we are glad we got a few days with him.
We came back and got into our normal schedule of run from one appointment to another. During our running we went to Pella to see my college friend Rhonda and her baby. We stayed with Judy. It was a nice visit... We didn't even go up town... Didn't realize that until on the way home. On our way back to Pella we went to the opthomologist in Marshalltown. YUCK! Love the doctor... Hate the appointments. Nash is so bad now that we have to hold him down just to shine the light in his eyes. I feel horrible for him. He has been through so much medically that anyone who has a uniform on and touches him is not cool. It is stressful. Even haircuts are a major battle these days. This sheer terror lead to the discussion of when to have Nash's eye surgery. I would like to wait a year or so until we can get Nash calmed down. Dr Suh agreed. It is just one of those many choices we have had to make in Nash's life... Just not sure what is right...
Like sending him to school when he turns three... This is a battle I fight in my mind... I am leaning towards no and Nate yes. I am soooo torn.... 3 seems so young. He gets ill easy so it could be bad.... Plus I just worry about his safety, since he puts everything in he mouth.. (Example the n he choked on at the lake). I also want him to go for the social aspect and learning to follow istructions of the teacher... It's such a tough call. I am seeking any advice and opinions. I am asking everyone what they think... So far they are about 50/50 which isn't halping me much since I am in the same boat. We will just keep praying and see what happens.
Let's see... All this leads to this past weekend where Gpa & Gma Kuehl came to dinner Friday night and then on Sunday morning we went and watched mom and Jordanne skydive. Something not on my list of things to do before I die, but they had a Blast and it was fun watching them and getting to picnic with the entire family afterwards... At the picnic after getting on a fresh diaper Nash flirted with Emily... It was super cute and funny. Once again scaring me a little that he is like his uncle Evan.
This last month has been great. We have spent lots of time at several parks playing. Nash's balance is improving and his vocabulary is increasing. Swim lessons for therapy are going pretty good. He is using a spoon better and sometimes able to stab with the fork. He is learning better how to take on and off his clothes. Each step is a process that requires lots of work and creativity. Someday he will get it and life will be a little easier, however we know we will have new battles to fight... Likee School Bullies and school and other medical decisions we will be faced with in the future. All in all we are learning a lot along the way and are SOOOOO thankful that God blessed us with Nash. I just look at him sometimes in amazement and other times he cracks me up. Kids are sooooo funny! "I love it!"
Thursday, June 25, 2009
Hippo Therapy Cont...
My horse's name is Jasper!! "I love it." Nash often says this after he is done riding! The ladies on the sides are volunteers. The PT is in the back and a volunteer is leading the horse. It is a wonderful experience for him and has proved to help loosen his legs. It is called Miracles in Motion for a reason! It is truly amazing.Hippo Therapy
The summer of Hippo Therapy ended with Nash being asked to ride for a group of therapist with a theraputic trainer from CA. Nash LOVES riding. In fact today he cried the entire time... 35 minutes. I was going slightly nuts. He stopped the moment he sat on the horse. Not another peep out of him. Praise God! I was hoping he would behave since 20 plus people were watching and the trainer/therapist from CA was showing techniques and using Nash. He did GREAT!
I took some pictures last week and thought I would share. Hipp Therapy is AWESOME for Nash. His legs get a great stretch and he sits straighter on the horse then anywhere else. It amazes me. We have a little cowboy in our midst.
Tomorrow we head for Spirit Lake. Yeah a vacation. Nate gets to come for some of it which is good. We are looking forward to getting away.
Wednesday, June 3, 2009
Recent Pictures to go with post below!!
Edible Playdough!! Yum!! Entertainment for at least an hour!! Way to go mom!!
Little hard to see, but look closely that that is Me... Nash on Shamrock... My first ever horse ride! Now I am a REAL Cowboy!! Yeee Haw!!!
This is the life!! Chilling, wathing a video and having a snack, while mom waits on me!!Random Updates!! It's been awhile!
Yeah... Been pretty bad about updating!! Been a little crazy around here... After the hospital, we actually got away from home a couple times!! Yippee! Nash and I went to Pella for a couple days. Great visit! Nash asked everyone for something to eat while visiting various people's houses. Cookies, Crackers, and Cake... Everyone was happy to feed him and HE LOVED IT! Sugar high for a couple days. He got a rude awakening when he got home. No sweets!
Then off to Lake City for Jordanne's graduation party where Nash got to ride Sammy, Jordanne's horse! Nate got to go with us since he doesn't work Sundays and it was Memorial day. Casey rode along and she might not want to ride with the Crazy Kuehls again!! It was great to be home. Nash even got to ride in the skid loader with grandpa and sleep with grandma while Nate and I want to a bed and breakfast. Yep... Made it one night without Nash!
Then we went to Honey Creek Resort with Gpa and Gma Kuehl for two nights. We biked and swam a lot! Nash walked the halls and loved the water. He was in HOT TUB HEAVEN! Now says Hot tub and water pretty much every day!
So we traveled A LOT in May... It was wonderful! So great to get out of the house. Breath fresh air and let Nash see the world. He loved every minute of it. He loves going "Bye bye" as he calls it.
He is trying to talk more and is walking at times up to 50 steps. That is on a good day, but it is WONDERFUL!
He says... "I love it!"; "I have sharp teeth" (from his new favorite book)!. "Stuck a feather in his hat and called it macaroni" Yankee Doodle is his new fav song. "I'm going to tickle!!" (when I am going to tickle him he says it for me!) "I love you..." Ahhhh I LOVE this one! He also says parts of his prayers, and loves singing parts of old country songs with Nate. Basically Nash fills in words here and there. Very funny!
He can say his ABCs all by himself, count to 20, count to 10 in spanish, and can identify all ABC and numbers to 10. Shapes and 8 to 10 colors. He is doing well in academics and LOVES learning new things. He struggles in creative play. Wants nothing to do with it. We try, but books and music are more his thing. Hoping and praying that his brain develops in that area. Still real orally fixated on things, which is for babies. He still explores his new environment and new items with his mouth. Hopefully he kicked that before school or he is going to get lots of unwanted germs! YUCK!
Eye patching is down to 2 to 4 hours a day and holding off on surgery in July for now. He is indeed using his right eye... We knew it and his new eye doc agrees! SWEET.... I love when doctor listen!
Nash had HippoTherapy today and loved riding the horse once again. He even got to ride a speedy horse. Basically rode a little bigger horse with a little faster walk. He starts aquatic therapy next week. I have a feeling he is going to Love it!!
I better be off to bed. Another busy day awaits us. We are very happy for this great weather and the freedoms of outside. We have really been stepping back and looking at all the little things in life this last month that God has blessed us with and for the first time in my life I have really focused on the beauty of spring and all the new life and fresh air. Wow God is good!
One step at a time... Moving forward and SOOOO thankful that God gave us Nash! I look at him often with tears of joy in my eyes and think just how wonderful it is to have such a blessing who has made me slow down, step back, and take nothing for granted. The little things in life are amazing. God often shows me through Nash. I have never seen so much love, grace, peace, joy, and determination in one person as I do our son. I am sooo incerdiable thankful for him.
Then off to Lake City for Jordanne's graduation party where Nash got to ride Sammy, Jordanne's horse! Nate got to go with us since he doesn't work Sundays and it was Memorial day. Casey rode along and she might not want to ride with the Crazy Kuehls again!! It was great to be home. Nash even got to ride in the skid loader with grandpa and sleep with grandma while Nate and I want to a bed and breakfast. Yep... Made it one night without Nash!
Then we went to Honey Creek Resort with Gpa and Gma Kuehl for two nights. We biked and swam a lot! Nash walked the halls and loved the water. He was in HOT TUB HEAVEN! Now says Hot tub and water pretty much every day!
So we traveled A LOT in May... It was wonderful! So great to get out of the house. Breath fresh air and let Nash see the world. He loved every minute of it. He loves going "Bye bye" as he calls it.
He is trying to talk more and is walking at times up to 50 steps. That is on a good day, but it is WONDERFUL!
He says... "I love it!"; "I have sharp teeth" (from his new favorite book)!. "Stuck a feather in his hat and called it macaroni" Yankee Doodle is his new fav song. "I'm going to tickle!!" (when I am going to tickle him he says it for me!) "I love you..." Ahhhh I LOVE this one! He also says parts of his prayers, and loves singing parts of old country songs with Nate. Basically Nash fills in words here and there. Very funny!
He can say his ABCs all by himself, count to 20, count to 10 in spanish, and can identify all ABC and numbers to 10. Shapes and 8 to 10 colors. He is doing well in academics and LOVES learning new things. He struggles in creative play. Wants nothing to do with it. We try, but books and music are more his thing. Hoping and praying that his brain develops in that area. Still real orally fixated on things, which is for babies. He still explores his new environment and new items with his mouth. Hopefully he kicked that before school or he is going to get lots of unwanted germs! YUCK!
Eye patching is down to 2 to 4 hours a day and holding off on surgery in July for now. He is indeed using his right eye... We knew it and his new eye doc agrees! SWEET.... I love when doctor listen!
Nash had HippoTherapy today and loved riding the horse once again. He even got to ride a speedy horse. Basically rode a little bigger horse with a little faster walk. He starts aquatic therapy next week. I have a feeling he is going to Love it!!
I better be off to bed. Another busy day awaits us. We are very happy for this great weather and the freedoms of outside. We have really been stepping back and looking at all the little things in life this last month that God has blessed us with and for the first time in my life I have really focused on the beauty of spring and all the new life and fresh air. Wow God is good!
One step at a time... Moving forward and SOOOO thankful that God gave us Nash! I look at him often with tears of joy in my eyes and think just how wonderful it is to have such a blessing who has made me slow down, step back, and take nothing for granted. The little things in life are amazing. God often shows me through Nash. I have never seen so much love, grace, peace, joy, and determination in one person as I do our son. I am sooo incerdiable thankful for him.
Friday, May 8, 2009
Ahhhh like his second home..
I am beginning to think Nash believes hospitals are his second home. I'd like it a lot more if he choose a five star hotel, but I guess this will do.
This has been a rough week at the Kuehl house... Sunday night Nash came down with a fever... Over 103*. I took him to the doctor on Monday... Not his normal doctor, because he was booked... Anyway apparently kids had been coming in with fevers that lasted for three to four days so Nash should just wait it out....
After three days of fevers over 101 and as high as 104.5... I was struggling to wait it out... After taking off his diaper I noticed blood in his urine. His temp was 104.4. We zoomed to ER on Wednesday Night at 7 PM... Returning home Thursday AM about midnight... Nash had been diagnoised with pneumonia, given IV and sent home... I wasn't thrilled, but figured the docs know best....
Thursday his temp was down, but cough proceeded to get worse... He no longer had tears. would not eat or drink and had no BMs/stools (medical terms) (poops, my term) since Monday. I made the executive decision.... Back to ER. He coughed and thre up on the way there so when i got there I was pretty much in tears. Surprised they didn't admit me to the mental ward.
Dehydrated and coughing like a madman for over 4 hours in ER Nash was admitted to St Lukes Peds. From what I saw riding on my back with Nash on my chest it looks to be a nice place!! Not my first ceiling view of a hospital with Nash... Only last time he was still inside me!
since being admitted Nash was diagnosed with walking pneumonia ( I can hardly spell is so knowing what it means... hmmmm viral I guess... about all I know... Still puzzeled with the spelling). They (Docs) think a urinary tract infection is to blame for the bacteria and white blood cells and red blood cells in his urine.
As of today (Friday) Nash will still not eat or drink and is coughing a lot. They are keeping him until he drinks and eats again and isn't coughing as much. Temp is down to almost normal so that is good news. He only wants his Mommy, which in a way makes me feel great, but on the other hand we have seen a lot of each other this week, so prying him off me to type a quick message while he sleeps is nice. I sit here and watch him cough and wish it was me... Wish I were sick and he was down tearing around this room and getting into everything. He has gotten into nothing this week. Funny, but I miss picking up after him!
While Nash is having a bad week. Nate is sick as well. Probably the worse I have seen him. He is not coping well and is seeing a doctor today. Yep running up those medical bills this week!! FUN FUN!
Prise God that I have not got sick... I hope not too. I have had about 15 to 20 hours of sleep this week so I am running on E. I think I am earning my Mother's Day this week!
I am glad we are here I was sooooo scared a few times this week. Felt so helpless. Once again understanding more about those strong ties a mother has to her child(ren). Amazing how much you hurt when they hurt, feel joy when they feel joy, and just how much you can love!
For all you moms out there... Happy Mother's Day!!
hope to spend my Mother's Day with Nash at home and healthy.... Hopefully he feels better today and eats and drinks something so maybe we can go home tomorrow! We'll see.
Reporting from Nash's second home thus far in life... A Hospital room. Someday I've got to convince him hotels are WAY better!
Jayme
(Thanks Casey for all your help, breakfast, lunch, and your computer). She's SOOOOO Awesome!
This has been a rough week at the Kuehl house... Sunday night Nash came down with a fever... Over 103*. I took him to the doctor on Monday... Not his normal doctor, because he was booked... Anyway apparently kids had been coming in with fevers that lasted for three to four days so Nash should just wait it out....
After three days of fevers over 101 and as high as 104.5... I was struggling to wait it out... After taking off his diaper I noticed blood in his urine. His temp was 104.4. We zoomed to ER on Wednesday Night at 7 PM... Returning home Thursday AM about midnight... Nash had been diagnoised with pneumonia, given IV and sent home... I wasn't thrilled, but figured the docs know best....
Thursday his temp was down, but cough proceeded to get worse... He no longer had tears. would not eat or drink and had no BMs/stools (medical terms) (poops, my term) since Monday. I made the executive decision.... Back to ER. He coughed and thre up on the way there so when i got there I was pretty much in tears. Surprised they didn't admit me to the mental ward.
Dehydrated and coughing like a madman for over 4 hours in ER Nash was admitted to St Lukes Peds. From what I saw riding on my back with Nash on my chest it looks to be a nice place!! Not my first ceiling view of a hospital with Nash... Only last time he was still inside me!
since being admitted Nash was diagnosed with walking pneumonia ( I can hardly spell is so knowing what it means... hmmmm viral I guess... about all I know... Still puzzeled with the spelling). They (Docs) think a urinary tract infection is to blame for the bacteria and white blood cells and red blood cells in his urine.
As of today (Friday) Nash will still not eat or drink and is coughing a lot. They are keeping him until he drinks and eats again and isn't coughing as much. Temp is down to almost normal so that is good news. He only wants his Mommy, which in a way makes me feel great, but on the other hand we have seen a lot of each other this week, so prying him off me to type a quick message while he sleeps is nice. I sit here and watch him cough and wish it was me... Wish I were sick and he was down tearing around this room and getting into everything. He has gotten into nothing this week. Funny, but I miss picking up after him!
While Nash is having a bad week. Nate is sick as well. Probably the worse I have seen him. He is not coping well and is seeing a doctor today. Yep running up those medical bills this week!! FUN FUN!
Prise God that I have not got sick... I hope not too. I have had about 15 to 20 hours of sleep this week so I am running on E. I think I am earning my Mother's Day this week!
I am glad we are here I was sooooo scared a few times this week. Felt so helpless. Once again understanding more about those strong ties a mother has to her child(ren). Amazing how much you hurt when they hurt, feel joy when they feel joy, and just how much you can love!
For all you moms out there... Happy Mother's Day!!
hope to spend my Mother's Day with Nash at home and healthy.... Hopefully he feels better today and eats and drinks something so maybe we can go home tomorrow! We'll see.
Reporting from Nash's second home thus far in life... A Hospital room. Someday I've got to convince him hotels are WAY better!
Jayme
(Thanks Casey for all your help, breakfast, lunch, and your computer). She's SOOOOO Awesome!
Thursday, April 30, 2009
Thanks for the Prayers!
I wanted to say "Thank you!" The prayers worked! For months I have had a lump in my left breast and I have been praying and asking others for prayer in the middle of the night before my exam I woke up and felt lead to pray pray pray. I did... See that night before bed I could still feel my lump. But that morning it was gone!! Doctors could not find it either! Praise God!!!
So I have to share a funny story too... While I was working at the computer an hour ago... I heard Nash go into the bathroom and close the door and flush the toilet... you see he is getting sneaker... Closing the door behind him.... Yep, still heard the flush... So I burst through the door ans say in a deep what I think is a semi-scary voice.... "WHAT ARE YOU DOING?" He turns fast looks at me and smiles and says, "Hot Tub." Seriously, like he was going to convince me that he was playing in a hot tub and not the toilet!!
This week has been going pretty good. Nash loved riding the horse last night. He is sitting straighter and his legs are stretching over the horse well. Daddy got to watch last night too and loved it!! I took more video and will show family soon!
Thanks again for all the support and prayers
Love
Jayme
So I have to share a funny story too... While I was working at the computer an hour ago... I heard Nash go into the bathroom and close the door and flush the toilet... you see he is getting sneaker... Closing the door behind him.... Yep, still heard the flush... So I burst through the door ans say in a deep what I think is a semi-scary voice.... "WHAT ARE YOU DOING?" He turns fast looks at me and smiles and says, "Hot Tub." Seriously, like he was going to convince me that he was playing in a hot tub and not the toilet!!
This week has been going pretty good. Nash loved riding the horse last night. He is sitting straighter and his legs are stretching over the horse well. Daddy got to watch last night too and loved it!! I took more video and will show family soon!
Thanks again for all the support and prayers
Love
Jayme
Sunday, April 26, 2009
Saturday, April 18, 2009
Giddy Up!!
Ahhhh what a week of amazing weather!! Very glad to be able to be outside doing yard work! Got sun burnt twice... Well at least I will have a farmers tan soon after I stop looking like a lobster! It has been great for both Nash and I to get outside and move around a bit. He loves exploring, which led to a nasty sliver in his hand... Picture this... Me holding him down with a needle and tweezers trying to get it out... Yeah, was not fun! I kept thinking, "Moms are suppose to do this... My mom always did it for us..." Duh I am the mom now... "Suck it up Jayme and get it out..." Finally on day two I got it out.
Got the cast off... Not real sure if it helped after the first day, but worth trying again to possible avoid surgeries on his legs. Oh speaking of surgeries As of now his eye surgery is scheduled for July 9th. I am really trying not to worry.... I know it is in God's hands, but I admit I am struggling... I think surgery on a two year old is not a good age... Doesn't understand why there is more pain in his life or why mommy let it happen again... Yeah going to be a tough one for him and me! Please pray that he is ok!
More importantly this week Nash was a cowboy!! He survived Therapeutic Riding. At first he was not thrilled about the hat... I knew that would be the worse part... Then getting on the horse... He wasn't thrilled until the horse started walking and like a flash of lighting the water works stopped and a smile came on his face. It was awesome to see Nash on the horse.. I was soooo proud of him.
It was funny because their were shapes, colors, and letters on the wall... He was saying them all and one of the volunteers thought he was 4. The first time ever someone thought he as older then he was.
The physical therapist was directing him to say "go" and "stop." He didn't say it at first so I told him to say please... Then he would say "go please." No stop yet... I think that is partly because he just wanted to GO GO GO! It was as if he was on top of the world. I took pictures, but because of the lighting they did not turn out... SORRY!
We drove 40 minutes there for a 30 minute ride and 40 minutes back home. I was thinking... Is this really worth it... After seeing Nash on that horse and him walking without crossing his legs as much after he got off I was like YES the is worth the drive!! Nash even pet the horse before he got off... Which is a miracle, because if you know Nash... You know that he doesn't like fur or animals. He loves singing Old McDonald and seeing animals on TV, but real live animals... Yeah.. Not his thing! The name of the horse therapy farm is Miracles in Motion and so far they have lived up to their name.
Let's see new developments with Nash... Oh!! He gives kisses now!! Loving it. Every time someone tried kissing him he would turn way, stick a hand in your face, or barry his head in your arm. Now I ask for a kiss and a majority of the time I get one!! Nate's sort of jealous since I am not asking him for kisses! Sorry Nate, but Nash's kisses are WAY better. No whiskers!
I want to try and remember every so often to write down Nash's favorite things... Since the baby book is in a box in the storage room and has not been written in since we moved... Yeah, not so good about that!!
So here are a few of his favorite things...
Books (he brings them to us with a huge smile on his face and has even said a few times "read book." He has some memorized and loves filling in the words.)
Music Rather it is playing his piano or listening to music, or singing along with us he loves...
Old McDonald, ABCs (which he says all, but M N.. pauses for them but doesn't say them), If you are Happy and You know It, You are My Sunshine, Our God, and other random songs Nate has taught him that are what we call Old Country Songs!
Going Outside, Exploring, Taking everything out of the cabinets, chewing on the toothpaste tube, Bath time, his Videos (Bideos as he calls them), Watching U-tube learning videos, ABCs, Numbers, Shapes, Colors, and even Spanish Numbers. Going to therapies, Playing chase and tickle with daddy and mommy, Swinging, French fries, Mac & Cheese, Grapes, Milk, Mommy's homemade juice, Pizza, Playing with the phone (land line), Pineapple, Yogurt, Oatmeal, Ice Cream with Daddy, and nursery at church!!
Most kids you would find them in their room playing with their toys... Not Nash he is listening to music and looking at books, playing with the shapes puzzles, saying his ABCs or counting...
Some days I look at him and cannot believe where he came from... 1 lb and 4 oz!!! How far he has come, what he has overcome. Celebrating all the little joys and smiles and words, and steps. I am soooo thankful that God let me be Nash's mom. Other days are hard when he falls a lot, screams about his eye patch, hearing about the million things we need to work on daily, how far behind he is in some areas, watching people stare and say rude comments about my child, and knowing we have a long road ahead of us...
We just try to take life day by day... Celebrate the joys and pray about the concerns. Many times with tears shed and smiles on our faces, we push on. Some days I think my life is like a normal mother other days I realize it is not.
March of Dimes Walk in next week and we exceeded our team goal. To date we have raised $1,055.00. Great work and thanks to those that donated!
A mommy and daddy update!! Nate is working lots and loves it. We found a church... 1st Assembly. We really like it there. I joined a women's Bible Study. It is going well. I think it will be good for me to meet other women. Nate thinks he will get a turkey hunt in sooner then later. I said I would go with him, but not sure if that will happen this year... Someday I promise!
And if I could have your prayers please... A few months ago I found a lump on my left breast. I had a mammogram and ultrasound. I thought everything was ok and it might be, but the radiologist sent a letter and said after further review he wants me to come in again on the 27th and have it looked at again.. The nurse used the word mass, which was new to me... So I hope it is nothing. Maybe just my silly messed up hormones that have been causing me troubles! I am just hoping and praying that everything will be fine.
I hope to get pictures of Nash on the horse.. It is soooo Awesome!! He cannot wait to ride with Aunt Jordanne this summer!!
Thanks for reading and caring out our family!
Blessings
Jayme
Got the cast off... Not real sure if it helped after the first day, but worth trying again to possible avoid surgeries on his legs. Oh speaking of surgeries As of now his eye surgery is scheduled for July 9th. I am really trying not to worry.... I know it is in God's hands, but I admit I am struggling... I think surgery on a two year old is not a good age... Doesn't understand why there is more pain in his life or why mommy let it happen again... Yeah going to be a tough one for him and me! Please pray that he is ok!
More importantly this week Nash was a cowboy!! He survived Therapeutic Riding. At first he was not thrilled about the hat... I knew that would be the worse part... Then getting on the horse... He wasn't thrilled until the horse started walking and like a flash of lighting the water works stopped and a smile came on his face. It was awesome to see Nash on the horse.. I was soooo proud of him.
It was funny because their were shapes, colors, and letters on the wall... He was saying them all and one of the volunteers thought he was 4. The first time ever someone thought he as older then he was.
The physical therapist was directing him to say "go" and "stop." He didn't say it at first so I told him to say please... Then he would say "go please." No stop yet... I think that is partly because he just wanted to GO GO GO! It was as if he was on top of the world. I took pictures, but because of the lighting they did not turn out... SORRY!
We drove 40 minutes there for a 30 minute ride and 40 minutes back home. I was thinking... Is this really worth it... After seeing Nash on that horse and him walking without crossing his legs as much after he got off I was like YES the is worth the drive!! Nash even pet the horse before he got off... Which is a miracle, because if you know Nash... You know that he doesn't like fur or animals. He loves singing Old McDonald and seeing animals on TV, but real live animals... Yeah.. Not his thing! The name of the horse therapy farm is Miracles in Motion and so far they have lived up to their name.
Let's see new developments with Nash... Oh!! He gives kisses now!! Loving it. Every time someone tried kissing him he would turn way, stick a hand in your face, or barry his head in your arm. Now I ask for a kiss and a majority of the time I get one!! Nate's sort of jealous since I am not asking him for kisses! Sorry Nate, but Nash's kisses are WAY better. No whiskers!
I want to try and remember every so often to write down Nash's favorite things... Since the baby book is in a box in the storage room and has not been written in since we moved... Yeah, not so good about that!!
So here are a few of his favorite things...
Books (he brings them to us with a huge smile on his face and has even said a few times "read book." He has some memorized and loves filling in the words.)
Music Rather it is playing his piano or listening to music, or singing along with us he loves...
Old McDonald, ABCs (which he says all, but M N.. pauses for them but doesn't say them), If you are Happy and You know It, You are My Sunshine, Our God, and other random songs Nate has taught him that are what we call Old Country Songs!
Going Outside, Exploring, Taking everything out of the cabinets, chewing on the toothpaste tube, Bath time, his Videos (Bideos as he calls them), Watching U-tube learning videos, ABCs, Numbers, Shapes, Colors, and even Spanish Numbers. Going to therapies, Playing chase and tickle with daddy and mommy, Swinging, French fries, Mac & Cheese, Grapes, Milk, Mommy's homemade juice, Pizza, Playing with the phone (land line), Pineapple, Yogurt, Oatmeal, Ice Cream with Daddy, and nursery at church!!
Most kids you would find them in their room playing with their toys... Not Nash he is listening to music and looking at books, playing with the shapes puzzles, saying his ABCs or counting...
Some days I look at him and cannot believe where he came from... 1 lb and 4 oz!!! How far he has come, what he has overcome. Celebrating all the little joys and smiles and words, and steps. I am soooo thankful that God let me be Nash's mom. Other days are hard when he falls a lot, screams about his eye patch, hearing about the million things we need to work on daily, how far behind he is in some areas, watching people stare and say rude comments about my child, and knowing we have a long road ahead of us...
We just try to take life day by day... Celebrate the joys and pray about the concerns. Many times with tears shed and smiles on our faces, we push on. Some days I think my life is like a normal mother other days I realize it is not.
March of Dimes Walk in next week and we exceeded our team goal. To date we have raised $1,055.00. Great work and thanks to those that donated!
A mommy and daddy update!! Nate is working lots and loves it. We found a church... 1st Assembly. We really like it there. I joined a women's Bible Study. It is going well. I think it will be good for me to meet other women. Nate thinks he will get a turkey hunt in sooner then later. I said I would go with him, but not sure if that will happen this year... Someday I promise!
And if I could have your prayers please... A few months ago I found a lump on my left breast. I had a mammogram and ultrasound. I thought everything was ok and it might be, but the radiologist sent a letter and said after further review he wants me to come in again on the 27th and have it looked at again.. The nurse used the word mass, which was new to me... So I hope it is nothing. Maybe just my silly messed up hormones that have been causing me troubles! I am just hoping and praying that everything will be fine.
I hope to get pictures of Nash on the horse.. It is soooo Awesome!! He cannot wait to ride with Aunt Jordanne this summer!!
Thanks for reading and caring out our family!
Blessings
Jayme
Tuesday, April 7, 2009
Spring Please Come Soon!!
Like the rest of Iowans we cannot wait for Spring! Nash sits by the door and says, "Outside." In mind and spirit I am right there with him. I hear warmer weather is on the horizen so we are thrilled about it.
The signs of Spring are here... Grass turning green, birds and bunnies playing in the yard, and lots of mud! If the weather warms up just a bit we are outside and like any other two year old Nash is quick to find the mud. One improvement so far from last year is... He has stopped eating it! At least for now!
Last week my Gma Blair and her sister Grace came to visit! Nash loved having them. Nate and I also enjoyed their company and playing cards with them. They played so many cards they put holes in the deck... Not kidding. I thre two decks away after they left. Gma said they weren't good cards... But still... It testifies to the fact of a lot of card playing.
My mom and her frind Linda came on Friday night. Mom stayed Saturday night too, while Nate and I had a date night. It's great to have those now and again.
So last week was the week of guests! We loved it! Nash now looks around the house for people... He is getting bored real easy this week.
Nash said his entire ABC in the bathtub last night. All but M... He can't seem to say that one. I stood in the hall and listened. Shortly after that he counted to 14. I will have to say I was shocked. Very impressed with his development. I also identified all his capital letters accept two. I didn't even know he knew them. I was more in shock with each letter he said. I think my jaw hit the floor a couple times. I am thrilled he is ahead in one area. When a child is behind his age group in pretty much everything it is the MOST wonderful feeling to see him rise above the rest in one area! Praise God!
His therapies are going well. We are trying something new this week. He is going to get his right lower leg casted. His foot will be in a cast in the flexed position for 4 to 5 days. I have a feeling it is going to be a long 4 or 5 days. I pray that it goes better then I think it will. So Happy Easter to us! The hope is that it will help him put his foot flat and help control his walking a little more. He falls an aweful lot, which is why he tends to have lots of bruises... Some on his face...
Thursday the plan is to schedule his eye surgery for July. Fun fun! I hope and pray it is his last.
Next week Nash will start Theraputic Riding which could get REAL interesting since he does not like horses. He plans fo go every Wednesday until Mid-June. It will be great for his legs. Hopefully after that he will want to ride with Aunt Jordanne!
Well, I should be going... I hear lots of thumping and banding upstairs... Not sure what Nash and Nate are doing... Whatever it is... Must be funny. They are both cracking up!
Have a Happy Easter!
Blessings
JLK
The signs of Spring are here... Grass turning green, birds and bunnies playing in the yard, and lots of mud! If the weather warms up just a bit we are outside and like any other two year old Nash is quick to find the mud. One improvement so far from last year is... He has stopped eating it! At least for now!
Last week my Gma Blair and her sister Grace came to visit! Nash loved having them. Nate and I also enjoyed their company and playing cards with them. They played so many cards they put holes in the deck... Not kidding. I thre two decks away after they left. Gma said they weren't good cards... But still... It testifies to the fact of a lot of card playing.
My mom and her frind Linda came on Friday night. Mom stayed Saturday night too, while Nate and I had a date night. It's great to have those now and again.
So last week was the week of guests! We loved it! Nash now looks around the house for people... He is getting bored real easy this week.
Nash said his entire ABC in the bathtub last night. All but M... He can't seem to say that one. I stood in the hall and listened. Shortly after that he counted to 14. I will have to say I was shocked. Very impressed with his development. I also identified all his capital letters accept two. I didn't even know he knew them. I was more in shock with each letter he said. I think my jaw hit the floor a couple times. I am thrilled he is ahead in one area. When a child is behind his age group in pretty much everything it is the MOST wonderful feeling to see him rise above the rest in one area! Praise God!
His therapies are going well. We are trying something new this week. He is going to get his right lower leg casted. His foot will be in a cast in the flexed position for 4 to 5 days. I have a feeling it is going to be a long 4 or 5 days. I pray that it goes better then I think it will. So Happy Easter to us! The hope is that it will help him put his foot flat and help control his walking a little more. He falls an aweful lot, which is why he tends to have lots of bruises... Some on his face...
Thursday the plan is to schedule his eye surgery for July. Fun fun! I hope and pray it is his last.
Next week Nash will start Theraputic Riding which could get REAL interesting since he does not like horses. He plans fo go every Wednesday until Mid-June. It will be great for his legs. Hopefully after that he will want to ride with Aunt Jordanne!
Well, I should be going... I hear lots of thumping and banding upstairs... Not sure what Nash and Nate are doing... Whatever it is... Must be funny. They are both cracking up!
Have a Happy Easter!
Blessings
JLK
Wednesday, March 18, 2009
Falling Down & Up Again
As Nash tries walking more he falls a lot more... This is hard for me to watch my child fall again and again. Cry, get frustrated, a few bruises, and then crawls over to an object to stand up and try again.
I found myself standing at a distance with tears in my eyes at least three times yesterday. It just hurts my heart so much to see him trying sooo hard and his body fails him... I then say.. "Great job walking Nash... Get up and walk more. You can do it!" He looks at me and off to find a object to help him stand. Then I shed more tears, because of his determination. He could just sit there, but he doesn't, he wants to walk. It amazes me and inspires me. I think of this is just one of many ways his body has and will fail him and I am SOOOO thankful that God gave Nash the personality, spirit, and determination to get up and keep trying.
Also thank God for knee pads... which as covered in mud from being outside. Nash is exploring the yard! He loves to be outside. He has been going to the door and saying.. "Outside.' More like "ouhside."
Got to run... The boy ate lots of veggies off the grill last night and I smell they have worked their way through... Fun fun!
I found myself standing at a distance with tears in my eyes at least three times yesterday. It just hurts my heart so much to see him trying sooo hard and his body fails him... I then say.. "Great job walking Nash... Get up and walk more. You can do it!" He looks at me and off to find a object to help him stand. Then I shed more tears, because of his determination. He could just sit there, but he doesn't, he wants to walk. It amazes me and inspires me. I think of this is just one of many ways his body has and will fail him and I am SOOOO thankful that God gave Nash the personality, spirit, and determination to get up and keep trying.
Also thank God for knee pads... which as covered in mud from being outside. Nash is exploring the yard! He loves to be outside. He has been going to the door and saying.. "Outside.' More like "ouhside."
Got to run... The boy ate lots of veggies off the grill last night and I smell they have worked their way through... Fun fun!
Saturday, March 14, 2009
Our WI Vacation!
Nash and I went on a vacation with my family. Nate had to work, because he is hunting in South Dakota with his father this weekend. We miss him since it has been a week since we saw him!
My parents and siblings have not been on a vacation together since the summer of 2001 in Texas, so it was great to get together again. We were in WI Dells, which in only three hours away from our house. Perfect ride for Nash!
We skiied one day. Mom skiied for the first time in her life at 50 years old. The day before she turned 51. She did great! Jordanne's first time skiing too. My second. Evan was like a pro... Turning circles and going down the bunny hill backwards. Still the dare devil of the family. Jordanne's boyfriend Nick was pretty good too! Evan brought Emily... The girl he is dating and it was her first ski trip. So some beginners and pros... What was neat about it was we had the entire place to ourselves. It was on a Tuesday so nobody was there. We LOVED it! Nash and Dad (Gpa) hung out in the ski lodge. After checking out the entire place ten times over he passed out on gpa (picture below).
Our hotel had an indoor water park which Nash LOVED! Also had a hot-tub in our room, which we had a hard time keeping Nash out of. He spent hours each day in the water and loved every minute of it. We also went to the hotel arcade one night to play games. Nash thought that was pretty neat with all the lights and music. He became VERY hyper and giggled non-stop. Cracked us all up.
It was good to get away. Feel alive again. Breath fresh air. Overall I think my family had a good time. Relaxing with a little adventure. Since we have been home Nash has been having hot-tub and grandparent withdrawals. He is looking for a hot-tub and asking for gpa and gma!
Well, I need to run... I hear him getting into trouble upstairs!
Jayme
My parents and siblings have not been on a vacation together since the summer of 2001 in Texas, so it was great to get together again. We were in WI Dells, which in only three hours away from our house. Perfect ride for Nash!
We skiied one day. Mom skiied for the first time in her life at 50 years old. The day before she turned 51. She did great! Jordanne's first time skiing too. My second. Evan was like a pro... Turning circles and going down the bunny hill backwards. Still the dare devil of the family. Jordanne's boyfriend Nick was pretty good too! Evan brought Emily... The girl he is dating and it was her first ski trip. So some beginners and pros... What was neat about it was we had the entire place to ourselves. It was on a Tuesday so nobody was there. We LOVED it! Nash and Dad (Gpa) hung out in the ski lodge. After checking out the entire place ten times over he passed out on gpa (picture below).
Our hotel had an indoor water park which Nash LOVED! Also had a hot-tub in our room, which we had a hard time keeping Nash out of. He spent hours each day in the water and loved every minute of it. We also went to the hotel arcade one night to play games. Nash thought that was pretty neat with all the lights and music. He became VERY hyper and giggled non-stop. Cracked us all up.
It was good to get away. Feel alive again. Breath fresh air. Overall I think my family had a good time. Relaxing with a little adventure. Since we have been home Nash has been having hot-tub and grandparent withdrawals. He is looking for a hot-tub and asking for gpa and gma!
Well, I need to run... I hear him getting into trouble upstairs!
Jayme
Friday, March 13, 2009
Sleeping with Gpa
They are off Skiing and Gpa and I are sleeping!! Maybe some day I will ski, but for now this feels nice!! I have to catch up on my zzzz's so I can play in the hot tub!Cake in the Hot Tub
Eating Evan's B-day cake in the Hot Tub!! This is the life!! We need to vacation more often!
Sunday, March 8, 2009
March is in like a Lamb!
So far March has been great! We spent several hours outside this past week. Nash had a BLAST! I took his walker outside and set him down in the driveway... He looked up at me like... "Seriously mommy I can just go?" I said, "Go go go!!" His face lit up and eyes sparkled. Giggled and took off! It was no time before he was playing in the mud! Which I totally didn't care! I wanted to join him, but thought raking would get me further on my chores. I figure I have a few more Spring days to play in the mud with Nash... Which I do tend to do... Of course I am a farm girl, playing in the mud is AWESOME!
Friday... When Daddy was off work we headed down to one of the farms... Call it Buzzy's farm.. Named after the guy Nate's dad bought it from... Anyway that is one of the place Nate hunts. We were shed hunting... For those of you who don't know... Shed hunting is.... Buck Deer lose their racks each year and Nate loves looking for them. We spent a couple hours wondering around and walking in the mud. Nate and Nash found one!! Their first ever shed found together. Nate took Nash out of the hiking backpack and asked Nash what it was and he said "Buck Deer." Nate was THRILLED! They have been practicing that for some time now!
It was great to get out and breath some fresh air. It has been raining the last couple days and the small creeks around us are flooding... Scary thinking it is looking like last spring. I hope and pray it does not flood downtown CR and surrounding areas again.
Nash had 8 appointments last week... BUSY week! One of these appointments was the doctor. Nash weighed in at 24 lbs. Gained 2 lbs in the last month and a half. Awesome! He is in the 3% range for weight, 20% range for height, and 10% for head size. So those 2 lbs helped him get on the term child chart!!
Dr Nau was impressed with Nash's development. In six months Nash went from only 8 words to around 100 to 200 words. He is taking steps and is getting much better with balance. It is just sooooo exciting to watch him. He says ABC's, counts to 15, and knows his colors, and shapes. His favorite colors are yellow and purple. Nate is wanting it to be camo, but has not convinced Nash at this point. He loves ovals, stars, and rectangles. He has trouble saying more then one letter or number at a time so is getting three to five in a row and needs me to say one and then says a few more. We used to say every other letter or number, but it is getting better.
Nash does have Acid Reflex back and is on medication again for that, which I think is so far helping. His leg mobilizer and foot brace is going better at night. He is making it to mornings. And has been able to roll over a couple times on his own. (You see he is having trouble rolling with the braces on).
He is doing a great job working on self feeding with a spoon. He almost did an entire meal without assistance. We have been working on this for what seems like forever, so it is sooo great that he is finally getting it. His wrist are what causes him the problems. He still shakes pretty bad at first, but after a few bites he gains more control and gets the food to him mouth. Scooping is still tough, but there is no doubt in our minds that soon he will get that concept too!
For now we have decided against the medication to help loosen his leg muscles. Dr Nau said the results we not much compared to the side affects. We don't want to harm him and he is making great progress so we will keep on the path of PT, OT, Massage, Chiropractor, warm baths, leg braces, vestibular brushing and listening, and practice practice practice. His hard work is paying off! Which brings tears of joy to my eyes...
Dr Nau did feel this summer was the right time for Nash to have his eye surgeries. He however wants him to be in a hospital, because he does not trust Nash's lungs... Since he heard him squeaking when crying and breathing hard when walking and moving a lot. I would have to agree. I get nervous enough with surgery... Having a medical team nearby would make me feel a little better.
Nash made another break through today... Made it through nursery without crying for mom. It was great! I heard the entire sermon! It was a sermon I needed to hear.
Well, I better get packing... Nash and I are going with my family to WI Dells tomorrow. We are excited to go on vacation. We are going skiing while dad baby-sits Nash... Could be interesting. Dad is not big on poopie diapers and Nash poops with the best of them. They'll be fine together. Mom is excited to take Nash to the indoor water park in our hotel. I bet Nash will LOVE it. He loves water and asks about the Hot Tub every day! I am looking forward to getting away.
I hope to post pics when we return!
Love
Jayme+
Friday... When Daddy was off work we headed down to one of the farms... Call it Buzzy's farm.. Named after the guy Nate's dad bought it from... Anyway that is one of the place Nate hunts. We were shed hunting... For those of you who don't know... Shed hunting is.... Buck Deer lose their racks each year and Nate loves looking for them. We spent a couple hours wondering around and walking in the mud. Nate and Nash found one!! Their first ever shed found together. Nate took Nash out of the hiking backpack and asked Nash what it was and he said "Buck Deer." Nate was THRILLED! They have been practicing that for some time now!
It was great to get out and breath some fresh air. It has been raining the last couple days and the small creeks around us are flooding... Scary thinking it is looking like last spring. I hope and pray it does not flood downtown CR and surrounding areas again.
Nash had 8 appointments last week... BUSY week! One of these appointments was the doctor. Nash weighed in at 24 lbs. Gained 2 lbs in the last month and a half. Awesome! He is in the 3% range for weight, 20% range for height, and 10% for head size. So those 2 lbs helped him get on the term child chart!!
Dr Nau was impressed with Nash's development. In six months Nash went from only 8 words to around 100 to 200 words. He is taking steps and is getting much better with balance. It is just sooooo exciting to watch him. He says ABC's, counts to 15, and knows his colors, and shapes. His favorite colors are yellow and purple. Nate is wanting it to be camo, but has not convinced Nash at this point. He loves ovals, stars, and rectangles. He has trouble saying more then one letter or number at a time so is getting three to five in a row and needs me to say one and then says a few more. We used to say every other letter or number, but it is getting better.
Nash does have Acid Reflex back and is on medication again for that, which I think is so far helping. His leg mobilizer and foot brace is going better at night. He is making it to mornings. And has been able to roll over a couple times on his own. (You see he is having trouble rolling with the braces on).
He is doing a great job working on self feeding with a spoon. He almost did an entire meal without assistance. We have been working on this for what seems like forever, so it is sooo great that he is finally getting it. His wrist are what causes him the problems. He still shakes pretty bad at first, but after a few bites he gains more control and gets the food to him mouth. Scooping is still tough, but there is no doubt in our minds that soon he will get that concept too!
For now we have decided against the medication to help loosen his leg muscles. Dr Nau said the results we not much compared to the side affects. We don't want to harm him and he is making great progress so we will keep on the path of PT, OT, Massage, Chiropractor, warm baths, leg braces, vestibular brushing and listening, and practice practice practice. His hard work is paying off! Which brings tears of joy to my eyes...
Dr Nau did feel this summer was the right time for Nash to have his eye surgeries. He however wants him to be in a hospital, because he does not trust Nash's lungs... Since he heard him squeaking when crying and breathing hard when walking and moving a lot. I would have to agree. I get nervous enough with surgery... Having a medical team nearby would make me feel a little better.
Nash made another break through today... Made it through nursery without crying for mom. It was great! I heard the entire sermon! It was a sermon I needed to hear.
Well, I better get packing... Nash and I are going with my family to WI Dells tomorrow. We are excited to go on vacation. We are going skiing while dad baby-sits Nash... Could be interesting. Dad is not big on poopie diapers and Nash poops with the best of them. They'll be fine together. Mom is excited to take Nash to the indoor water park in our hotel. I bet Nash will LOVE it. He loves water and asks about the Hot Tub every day! I am looking forward to getting away.
I hope to post pics when we return!
Love
Jayme+
Thursday, February 26, 2009
March of Dimes 2009
Nash at 8 days old & weighing 1.2 lbs Nash at 2 ½ years old still fighting!!
Miracles Do Happen!!
September 9, 2006 is a day we will never forget. After 12 weeks on bed rest only 24 weeks into the pregnancy our daughter Faith began to abrupt, which lead the birth of our twins. Faith went to be with her Heavenly Father that day, while Nash weighing only 1 lb. 4 oz. was fighting for his life. It was a fight we will never forget. With lots of prayers, thousands or miracles, and a wonderful medical team Nash came home two days before their due date of December 25, 2006.
The road to where Nash is today has not been easy, but we are so blessed and thankful to have Nash in our lives. He has endured numerous surgeries, and has diagnosis of Cerebral Palsy, Chronic Lung Disease, and ROP with vision loss. He is definitely a fighter. A boy who beats the odds and comes out smiling!!
We know without the blessings from God and research done by March of Dimes we would not have the opportunities to hug our little boy today. We want to thank March of Dimes and help raise money for the March for Babies, so other miracles like Nash can hug their parents each day!
Please help us raise money and save lives!! Donate today, because Miracles DO Happen!
Or join Team Kuehl at Noelridge Park on April 26, 2009; Address: 4900 Council St. Cedar Rapids, IA 52402 Walk Distance: 6 miles Registration Time: 7:00AM Start Time: 7:30 AM Chapter: Hawkeye Division (319) 247-5643
Go to: http://www.marchforbabies.org/team to register or donate to Team Kuehl!!
Thank You!! Nate, Jayme, & Nash
Children are a gift from the Lord (Psalm 127:3-5)
Miracles Do Happen!!
September 9, 2006 is a day we will never forget. After 12 weeks on bed rest only 24 weeks into the pregnancy our daughter Faith began to abrupt, which lead the birth of our twins. Faith went to be with her Heavenly Father that day, while Nash weighing only 1 lb. 4 oz. was fighting for his life. It was a fight we will never forget. With lots of prayers, thousands or miracles, and a wonderful medical team Nash came home two days before their due date of December 25, 2006.
The road to where Nash is today has not been easy, but we are so blessed and thankful to have Nash in our lives. He has endured numerous surgeries, and has diagnosis of Cerebral Palsy, Chronic Lung Disease, and ROP with vision loss. He is definitely a fighter. A boy who beats the odds and comes out smiling!!
We know without the blessings from God and research done by March of Dimes we would not have the opportunities to hug our little boy today. We want to thank March of Dimes and help raise money for the March for Babies, so other miracles like Nash can hug their parents each day!
Please help us raise money and save lives!! Donate today, because Miracles DO Happen!
Or join Team Kuehl at Noelridge Park on April 26, 2009; Address: 4900 Council St. Cedar Rapids, IA 52402 Walk Distance: 6 miles Registration Time: 7:00AM Start Time: 7:30 AM Chapter: Hawkeye Division (319) 247-5643
Go to: http://www.marchforbabies.org/team to register or donate to Team Kuehl!!
Thank You!! Nate, Jayme, & Nash
Children are a gift from the Lord (Psalm 127:3-5)
Friday, February 13, 2009
Our little trip!
We're Home!!
We made it back from Shriners in MN just in time. The snow started falling when we drove through Marion.
We only left Wednesday morning and somehow it seems forever... First we headed to the Opthomolgist in Marshalltown. Dr Suh (Saw). He did an exam on Nash. Nash hated it and we had to hold him down. It was horrible, but he survived. He gets worse at his eye appointments the older he gets. This time we walked into the room, he looked around once and began to fuss. The doc walks in and he starts crying. He knows that these appointments are not fun!
We got some good news... At least we think so. Nash is using his right eye more... We call it the bad eye... Anyway he thinks the patching is helping... So we need to keep patching. He agrees with Mayo... After all that Nash has been through with his right eye... Why not do everything in our power to work the eye and brain to save some vision... He believes Nash can see more then just light and dark... Unlike the U of I doc. So Mayo and Dr Suh agree and so do we... Nash's PT, OT, and Speech therapist believe he can see more then just light and dark from his right eye... So we are going with the majority and out gut feelings. So Nash will continue patching and in July have surgery on both eyes... WHAT!! Yeah... I thought the same thing... Only thought it would be the right eye, however we learned that if he just does surgery on the right eye and not the left they will not move as a pair... Makes perfect sense... If you look at yourself in the mirror your eyes move together... If Nash just had one eye fixed... He would move his eyes differently and it would look strange and may cause some depth issues. Or course there are some risks, but he says they are little compared to what Nash deal with now. So after an hour of tears Nash passed out in Nate's and we headed to the car to MN.
We arrived after dark and checking into our hotel. Nate and Nash went swimming... Nash is a fish.... Loves the water!! You can dunk him and everything... He doesn't care.
At Shriners the next morning Nash did great. The worst part he thought was height, weight, temp, and blood pressure... Silly boy!! He did gain a pound since he had the flu!! YEAH! Casey his new beefed up diet must be working!!
We met with a nurse, nurse practitioner, OT, PT, Orthopedic Surgeon, and a couple other random people welcoming us to Shriners. It was great to have soooo many people working as a team to care for Nash. It was like we were in the NICU again during rounds. You knew they cared and were working together for the betterment of Nash. I just wanted to hug them!! While we were there they made Nash a new night brace... Nash's foot and leg need to be held straight and foot at a 90* angle all night to help his muscles. Only on his right leg.
His x-rays looked good. Joints looked good!! YEA! Oh which x-raying Nash was funny... They told him to say cheese and he looked right into the machine and smiled!! Cracked us all up!! He loves having his pictures taken... So no surgeries on his legs for now... Maybe after age five... But so far they liked what they were seeing form Nash. All super shocked at all he has been through and that he was doing so well considering. Going through his medical records always takes are REAL long time!! We hear a lot of OH, REALLY, WHAT, That's HORRIBLE, WOW, I'm SORRY, He is a MIRACLE!! They look at Nash... Shake their heads and smile.. Of course then if it is a female he flirts and wants on their laps and they eat it up!! Basically Nash was having a blast! Attention attention... Eating it all up! They answered several questions we had concerning his therapies, head tilt, and falling a lot... We left there with a new brace, 2 sets of knee pads, dishes that will help Nash learn to scoop, spoons to help him eat, and several other therapy hits to help Nash learn...
After Nash's first round of appointments we thought we would be adventurous... We headed to the Mall of America. Nate and Nash had never been there so we decided to go... We walked around a lot and ate lunch... Took us forever to find a bathroom... My eyes were floating!! Headed back the hotel and off to the pool... Nash was a fish and a big prune!!
Today Nash saw the Neurologist... At this time he felt we did not need to do an EEG or MRI on Nash. He thinks his shaking and screaming uncontrollable in the middle of the night are... Muscle spasms and night terrors. Praise GOD!! He did say if they got worse or we noticed Nash starring off in space a lot we need to contact them and have him tested for seizures. He said at this time they could not tell the extent of Nash's brain damage... Kids are such sponges at this age and the brain is still developing so he won't know much until age five or six, when they can scan the brain and find out where exactly the damage is. So for now we are to keep teaching him everything possible and working through the motor issues so he can develop as much as possible before five. He did say if Nash begins to digress in any area we need to contact them immediately in case there is something else going on. So let's pray that doesn't happen.
All in all it was a great experience... They made us feel good as parents that we were doing what we needed to do at this point to have Nash's outcome be the best it can be. We just keep hoping and praying that Nash keeps developing in the right direction. The reality is Nash will more then likely always walk with a limp and have difficulty in various other motor areas. Hopefully, no learning or cognitive issues... Which they won't be able to tell until school age. Nash has Spastic Diplegia Cerebral Palsy. He will have this forever... It does not go away. However, Nash is a fighter and is stubborn and they loved that about him. We have said that is what kept him alive. They said that with his drive and determination he will continue to beat the odds like he already has.
As hard as all of this is to swallow some days I am just SOOOO thankful that God allowed us to be parents of a very special little boy... He makes almost everyone that looks at him smile. It is funny to watch people watch him and just smile. God knew that... God knew Nash would change people's lives... He has already changed ours... Some days I don't always think for the best, because it is stressful doing all this therapies at home and taking him to appointments... And most of all it is really hard to watch your child try and try and try and his body fails him... But I know it is all for the best!! I know God has big plans for our little guy. There was a reason God allowed Faith to go home and Nash and I to stay here on Sept 9, 2006.
It's that roller coaster ride.... Some days are the downs and you feel like throwing up and getting off... Other days you are at the top feeling great and thinking it is super cool, because you can see the entire park and all it's beauty... We love those days... Days where Nash learns something new and blows our minds once again... When he pushes up his glasses instead of rips them off, or when he doesn't fight his leg brace... He learns a new word... Walks another step... Those little things are big ups for us. The "Yes" and "Thank You God!!" may be small to most, but big accomplishments in our little world!
One last note.... Our nerves were rattled about what we might hear with these three days worth of appointments. We were in the car arguing a bit about which way to go, the time to leave, what to ask, and what to listen on the radio... We decided after a few mishaps and wrong turns to pray... 10 minutes later... We watched Nash walk at least 30 steps on his own... The furthest we had seen.... Again we were nervous about his appointment... While in the Shriners' waiting room we said our little prayers and again Nash takes off and walks... Refuses to crawl... It was like God was telling us... It is all going to be OK!! We smiled and took a deep breath of relief. Nash may not be a football star... or even a football player... But he will walk!
Have a great weekend!!
Thank you for all your prayers!! They are helping... Probably more than we all know!!
Blessings,
Jayme
We made it back from Shriners in MN just in time. The snow started falling when we drove through Marion.
We only left Wednesday morning and somehow it seems forever... First we headed to the Opthomolgist in Marshalltown. Dr Suh (Saw). He did an exam on Nash. Nash hated it and we had to hold him down. It was horrible, but he survived. He gets worse at his eye appointments the older he gets. This time we walked into the room, he looked around once and began to fuss. The doc walks in and he starts crying. He knows that these appointments are not fun!
We got some good news... At least we think so. Nash is using his right eye more... We call it the bad eye... Anyway he thinks the patching is helping... So we need to keep patching. He agrees with Mayo... After all that Nash has been through with his right eye... Why not do everything in our power to work the eye and brain to save some vision... He believes Nash can see more then just light and dark... Unlike the U of I doc. So Mayo and Dr Suh agree and so do we... Nash's PT, OT, and Speech therapist believe he can see more then just light and dark from his right eye... So we are going with the majority and out gut feelings. So Nash will continue patching and in July have surgery on both eyes... WHAT!! Yeah... I thought the same thing... Only thought it would be the right eye, however we learned that if he just does surgery on the right eye and not the left they will not move as a pair... Makes perfect sense... If you look at yourself in the mirror your eyes move together... If Nash just had one eye fixed... He would move his eyes differently and it would look strange and may cause some depth issues. Or course there are some risks, but he says they are little compared to what Nash deal with now. So after an hour of tears Nash passed out in Nate's and we headed to the car to MN.
We arrived after dark and checking into our hotel. Nate and Nash went swimming... Nash is a fish.... Loves the water!! You can dunk him and everything... He doesn't care.
At Shriners the next morning Nash did great. The worst part he thought was height, weight, temp, and blood pressure... Silly boy!! He did gain a pound since he had the flu!! YEAH! Casey his new beefed up diet must be working!!
We met with a nurse, nurse practitioner, OT, PT, Orthopedic Surgeon, and a couple other random people welcoming us to Shriners. It was great to have soooo many people working as a team to care for Nash. It was like we were in the NICU again during rounds. You knew they cared and were working together for the betterment of Nash. I just wanted to hug them!! While we were there they made Nash a new night brace... Nash's foot and leg need to be held straight and foot at a 90* angle all night to help his muscles. Only on his right leg.
His x-rays looked good. Joints looked good!! YEA! Oh which x-raying Nash was funny... They told him to say cheese and he looked right into the machine and smiled!! Cracked us all up!! He loves having his pictures taken... So no surgeries on his legs for now... Maybe after age five... But so far they liked what they were seeing form Nash. All super shocked at all he has been through and that he was doing so well considering. Going through his medical records always takes are REAL long time!! We hear a lot of OH, REALLY, WHAT, That's HORRIBLE, WOW, I'm SORRY, He is a MIRACLE!! They look at Nash... Shake their heads and smile.. Of course then if it is a female he flirts and wants on their laps and they eat it up!! Basically Nash was having a blast! Attention attention... Eating it all up! They answered several questions we had concerning his therapies, head tilt, and falling a lot... We left there with a new brace, 2 sets of knee pads, dishes that will help Nash learn to scoop, spoons to help him eat, and several other therapy hits to help Nash learn...
After Nash's first round of appointments we thought we would be adventurous... We headed to the Mall of America. Nate and Nash had never been there so we decided to go... We walked around a lot and ate lunch... Took us forever to find a bathroom... My eyes were floating!! Headed back the hotel and off to the pool... Nash was a fish and a big prune!!
Today Nash saw the Neurologist... At this time he felt we did not need to do an EEG or MRI on Nash. He thinks his shaking and screaming uncontrollable in the middle of the night are... Muscle spasms and night terrors. Praise GOD!! He did say if they got worse or we noticed Nash starring off in space a lot we need to contact them and have him tested for seizures. He said at this time they could not tell the extent of Nash's brain damage... Kids are such sponges at this age and the brain is still developing so he won't know much until age five or six, when they can scan the brain and find out where exactly the damage is. So for now we are to keep teaching him everything possible and working through the motor issues so he can develop as much as possible before five. He did say if Nash begins to digress in any area we need to contact them immediately in case there is something else going on. So let's pray that doesn't happen.
All in all it was a great experience... They made us feel good as parents that we were doing what we needed to do at this point to have Nash's outcome be the best it can be. We just keep hoping and praying that Nash keeps developing in the right direction. The reality is Nash will more then likely always walk with a limp and have difficulty in various other motor areas. Hopefully, no learning or cognitive issues... Which they won't be able to tell until school age. Nash has Spastic Diplegia Cerebral Palsy. He will have this forever... It does not go away. However, Nash is a fighter and is stubborn and they loved that about him. We have said that is what kept him alive. They said that with his drive and determination he will continue to beat the odds like he already has.
As hard as all of this is to swallow some days I am just SOOOO thankful that God allowed us to be parents of a very special little boy... He makes almost everyone that looks at him smile. It is funny to watch people watch him and just smile. God knew that... God knew Nash would change people's lives... He has already changed ours... Some days I don't always think for the best, because it is stressful doing all this therapies at home and taking him to appointments... And most of all it is really hard to watch your child try and try and try and his body fails him... But I know it is all for the best!! I know God has big plans for our little guy. There was a reason God allowed Faith to go home and Nash and I to stay here on Sept 9, 2006.
It's that roller coaster ride.... Some days are the downs and you feel like throwing up and getting off... Other days you are at the top feeling great and thinking it is super cool, because you can see the entire park and all it's beauty... We love those days... Days where Nash learns something new and blows our minds once again... When he pushes up his glasses instead of rips them off, or when he doesn't fight his leg brace... He learns a new word... Walks another step... Those little things are big ups for us. The "Yes" and "Thank You God!!" may be small to most, but big accomplishments in our little world!
One last note.... Our nerves were rattled about what we might hear with these three days worth of appointments. We were in the car arguing a bit about which way to go, the time to leave, what to ask, and what to listen on the radio... We decided after a few mishaps and wrong turns to pray... 10 minutes later... We watched Nash walk at least 30 steps on his own... The furthest we had seen.... Again we were nervous about his appointment... While in the Shriners' waiting room we said our little prayers and again Nash takes off and walks... Refuses to crawl... It was like God was telling us... It is all going to be OK!! We smiled and took a deep breath of relief. Nash may not be a football star... or even a football player... But he will walk!
Have a great weekend!!
Thank you for all your prayers!! They are helping... Probably more than we all know!!
Blessings,
Jayme
Tuesday, February 10, 2009
Good Morning!!
Please send some prayers our direction as tomorrow we head off to the opthomologist and then to Shriners Hospital in MN where Nash will be seen by several doctors, surgoens, and nuerologist. He will also go to PT and OT at the hospital. A two day evaluation.
We will hopefully get to the bottom of a lot of concerns. Nash has night terrors and shakes, which could apparently be seizures. We discussed these occurances with his doc in CR and in DM, but they said nothing. His PT and OT and Speech therapist on the other hand think differently. So hopefully we find out. We pray that he is not having seizures.
We recently found out the Nash is having stiffness in his arms and wrists and might have to have braces made for them too. He does wear a leg brace at night and during naps. He is suppose to wear his AFO at that time too, but it is hurting his foot. We think they might say he will have to wear an AFO at allo times, but not sure.
We have made out lists of questions... Hoping to get some answers... Yet knowing there is no way really for them to predict how Nash will be when he is older.
It seems as though recently we have been finding out a lot more about Nash... Most of it hard to take. More therapies to do at home... We keep real busy. Sometimes I struggle because I just want Nash to be able to be a kid. So we schedule those times into Nash's schedule... Fun activities and time for Nash to do what he wants... Which normally occurs while I am on the phone, cooking, or busy. They little guy is on a mission to destroy the house...
Nash's development is critical the first 5 years, so we are trying to get him to do everything he can!!
I will post when we return from Shiners. Also I hope to post a schedule of Nash's day in the near future... Just so you can have a peek into his world.
Enjoy this warm weather!! Thank you for all your prayers and support. I am both thankful and nervous about the trip. I am taking notes, because I know I will be overwhelmed!
Love and blessings
Jayme
Please send some prayers our direction as tomorrow we head off to the opthomologist and then to Shriners Hospital in MN where Nash will be seen by several doctors, surgoens, and nuerologist. He will also go to PT and OT at the hospital. A two day evaluation.
We will hopefully get to the bottom of a lot of concerns. Nash has night terrors and shakes, which could apparently be seizures. We discussed these occurances with his doc in CR and in DM, but they said nothing. His PT and OT and Speech therapist on the other hand think differently. So hopefully we find out. We pray that he is not having seizures.
We recently found out the Nash is having stiffness in his arms and wrists and might have to have braces made for them too. He does wear a leg brace at night and during naps. He is suppose to wear his AFO at that time too, but it is hurting his foot. We think they might say he will have to wear an AFO at allo times, but not sure.
We have made out lists of questions... Hoping to get some answers... Yet knowing there is no way really for them to predict how Nash will be when he is older.
It seems as though recently we have been finding out a lot more about Nash... Most of it hard to take. More therapies to do at home... We keep real busy. Sometimes I struggle because I just want Nash to be able to be a kid. So we schedule those times into Nash's schedule... Fun activities and time for Nash to do what he wants... Which normally occurs while I am on the phone, cooking, or busy. They little guy is on a mission to destroy the house...
Nash's development is critical the first 5 years, so we are trying to get him to do everything he can!!
I will post when we return from Shiners. Also I hope to post a schedule of Nash's day in the near future... Just so you can have a peek into his world.
Enjoy this warm weather!! Thank you for all your prayers and support. I am both thankful and nervous about the trip. I am taking notes, because I know I will be overwhelmed!
Love and blessings
Jayme
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
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