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)
Thursday, February 26, 2009
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
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