We have an appointment scheduled with the Neurologist. Small steps, but progress none the less. Hopefull we will have some answers on 4/13. I know it seems far away, but the typical waiting period is 2 1/2 months. We were fortunate to get an appointment so quickly.
In the mean time, Noah is continuing to do well. He is running, talking and eating as if nothing happened.
Thank you again for your continued prayers.
Showing posts with label Noah. Show all posts
Showing posts with label Noah. Show all posts
Monday
Friday
Noah Update
First of all, thank you to everyone who has kept Noah and our family lifted up in prayer. It means more than we can possibly express. For those of you who are not aware of the events that unfolded, here is a brief recap. Last Thursday, March 4, we went into Noah’s room to start our day. Noah was lying in bed awake, but not responding to our voices or touch. After some observation and trying unsuccessfully to get an adequate response we took him to our pediatrician for an evaluation. There it was determined that his blood sugar was low and they transported him via ambulance to Children’s Hospital Trauma Bay. They drew lots of blood for testing and at that time he received a CT scan. The CT showed no signs of tumors or lesions that would account for his odd behavior. His blood work came back inconclusive. The rest of the day, Noah stayed very lethargic and we were kept at Children’s for observation overnight. The next day, we took Noah in for an EEG. The EEG showed no signs of him having a seizure at that time, but they did notice an abnormality in the function of “background” waves that they wanted to explore further. They also noted he had a few enzymes that were not metabolizing properly. Since Noah was VERY active on Friday and they were still uncertain as to what had taken place, they allowed us to go home and scheduled an MRI. The MRI was performed on Wednesday.
As of today, Noah is back to his very active self, but we still do not have many answers. The more they find the more questions we are left to sort out as a family. At the present time we do know the MRI confirmed he has no tumors or lesions on his brain. We also know there are some abnormalities that affect the way his background brain waves are functioning. We are working closely to determine what this means for Noah. Our pediatricians are amazing and are exceedingly invested in making sure we get the answers we need and finding us a neurologist that will provide Noah with the very best care. We do need a repeat of the MRI in 6 months to reevaluate Noah’s condition.
At this time, there is nothing more we would love to do than to share any news that we have. Unfortunately, the information is not coming in as quickly as we would like. Determining a diagnosis, especially a neurological one, is a tedious process and we truly believe it would be a great disservice to Noah and our family to pass on speculative information. We strongly caution everyone to allow the doctors to sort this out and to not rely upon Wikipedia, Google and other resources to draw conclusions. We have faith that we are taking the most proactive approach and that the questions we have for the doctors have been carefully thought out and researched.
We are overwhelmed and humbled by the outpouring of support, love and prayers. We love you all.
Team Horn
As of today, Noah is back to his very active self, but we still do not have many answers. The more they find the more questions we are left to sort out as a family. At the present time we do know the MRI confirmed he has no tumors or lesions on his brain. We also know there are some abnormalities that affect the way his background brain waves are functioning. We are working closely to determine what this means for Noah. Our pediatricians are amazing and are exceedingly invested in making sure we get the answers we need and finding us a neurologist that will provide Noah with the very best care. We do need a repeat of the MRI in 6 months to reevaluate Noah’s condition.
At this time, there is nothing more we would love to do than to share any news that we have. Unfortunately, the information is not coming in as quickly as we would like. Determining a diagnosis, especially a neurological one, is a tedious process and we truly believe it would be a great disservice to Noah and our family to pass on speculative information. We strongly caution everyone to allow the doctors to sort this out and to not rely upon Wikipedia, Google and other resources to draw conclusions. We have faith that we are taking the most proactive approach and that the questions we have for the doctors have been carefully thought out and researched.
We are overwhelmed and humbled by the outpouring of support, love and prayers. We love you all.
Team Horn
Monday
Noah
John and I are absolutely thrilled to report, Noah has pristine skin!
As I changed his diaper this morning, I looked at Noah with amazement. His skin was white, clean and smooth. I have never seen his skin so beautiful. I cried as I kissed his arms and his pudgy legs. I watched as I diapered him. He wasn’t digging or clawing at his skin. His eyes were bright and you could see joy in his face. Our baby boy, for the first time is comfortable.
The past fourteen months have been gut wrenching. It is hard to explain to those who have never seen Noah, the extent of his Eczema. Most people think it is red irritated skin, maybe on a few patches of the body and with proper medication will clear. This may be true for some, but not Noah. Noah’s Eczema was located all over his body. On good days he would have red, patchy skin. On bad days, he would have bloody shards of where skin used to be. Raw and tattered, what may have looked horrifying to some became the norm for us. According to his doctors, the Eczema on Noah’s body is the worst they have ever seen. We have tried scores of medications, body washes, lotions, ointments, detergents, steroids, antihistamines and diets to help treat him. All have failed, until now. It has been torturous to watch him suffer for the past year. We were reminded on our trips to Children’s for blood tests how fortunate we were; at least we weren’t battling cancer. For the most part, Noah’s temperament has been wonderful. Despite his appearance, he has always been a happy baby; quick to laugh, smile and hug. Today, his outside has caught up to his inside.
Unfortunately, Noah’s treatment is temporary. The medication we are using is not FDA approved for his age group and the potential side effects of long term use are unclear. For now, if only for a day, Noah is able to feel relief.
As I changed his diaper this morning, I looked at Noah with amazement. His skin was white, clean and smooth. I have never seen his skin so beautiful. I cried as I kissed his arms and his pudgy legs. I watched as I diapered him. He wasn’t digging or clawing at his skin. His eyes were bright and you could see joy in his face. Our baby boy, for the first time is comfortable.
The past fourteen months have been gut wrenching. It is hard to explain to those who have never seen Noah, the extent of his Eczema. Most people think it is red irritated skin, maybe on a few patches of the body and with proper medication will clear. This may be true for some, but not Noah. Noah’s Eczema was located all over his body. On good days he would have red, patchy skin. On bad days, he would have bloody shards of where skin used to be. Raw and tattered, what may have looked horrifying to some became the norm for us. According to his doctors, the Eczema on Noah’s body is the worst they have ever seen. We have tried scores of medications, body washes, lotions, ointments, detergents, steroids, antihistamines and diets to help treat him. All have failed, until now. It has been torturous to watch him suffer for the past year. We were reminded on our trips to Children’s for blood tests how fortunate we were; at least we weren’t battling cancer. For the most part, Noah’s temperament has been wonderful. Despite his appearance, he has always been a happy baby; quick to laugh, smile and hug. Today, his outside has caught up to his inside.
Unfortunately, Noah’s treatment is temporary. The medication we are using is not FDA approved for his age group and the potential side effects of long term use are unclear. For now, if only for a day, Noah is able to feel relief.
Little Big Horn
It has been a month since we welcomed Noah Samuel. Although exhausting, it has been wonderful. Kami has been such a great help, and is very doting. Eli is a typical big bother...doesn't like to see his brother cry, but will throw things at him just the same. Out of necessity, I have learned to nurse on the defensive. Noah doesn't sleep well at night, so John and I are still trying to adjust. This is difficult to do since we have been watching the Olympics until 1 almost every night. Hopefully we will get more rest now that Swimming is over and Noah has been given medicine for reflux.
One of the great things about having boys 12 months apart is convenience. Since they were born pretty much the same size, we figured Noah could wear all of Eli's clothes. We are learning that God has a sense of humor. Noah is 11lbs 12oz and 23.5" (95%) and comfortably fits into 3-6 month clothing. This is much larger that Eli, who at 1 month and 1 week weighed 10lbs 5oz and was 22" and in 0-3 month clothing. Looks like we have some shopping to do!
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