Friday August 10, 2012
Aaron is now on a seizure medication called Onfi. It is a new medication just FDA approved last year. He is having focal seizures in his occipital lobe which are very uncommon. The neurologist is hoping this medication will prevent further seizures. He will start on 5mg at bedtime and they will gradually increase his dose every 2 weeks until he is taking 20 mg a day. There are a lot of side efects such as increased sleepiness, iritability and excessive saliva. He will be closely monitored but at least there is no blood monitoring.
He had an appointment with Dr C this morning. Dr C is pleased with how well he is doing. He said he is doing better than he ever thought possible since all of the problems he had in the PICU. He weighs 40 # 13 oz, the same as his last appointment. He has increased his Pediasure since he has only gained 2 pounds over the last year. He will see him again in October. We have lots more Dr and therapy appointents in the next few weeks. After that hopefully we can get a little break from all of the dr visits.
Friday, August 10, 2012
Aaron's registration
Tuesday August 7, 2012
I am not sure if I will be sending Aaron to school. We went to his registration today and I was not impressed with the new school nurse. I went to introduce her to Aaron and tell her a little about him and she did not even speak to him. She just handed me a paper to get filled out about his seizures and that was it. She did not even want to know any of his signs and symptoms of his adrenal crisis and she was not interested in his liquid monitoring due to his diabetes insipidus. Am I just supposed to send him to school and hope she knows what she is doing? The last nurse informed me that Aaron was falling asleep in class at THE END of the year and when I informed her that was a sign that somnething was not right she told me "don't worry he is just having a growth spurt" Really?? Because when I let the Dr know he ordered the EEG that showed he was having seizures. We have his open house in two weeks to talk with the staff. I will attempt to speak with her again and see what happens, but as for now I think I will just keep him at home.
I am not sure if I will be sending Aaron to school. We went to his registration today and I was not impressed with the new school nurse. I went to introduce her to Aaron and tell her a little about him and she did not even speak to him. She just handed me a paper to get filled out about his seizures and that was it. She did not even want to know any of his signs and symptoms of his adrenal crisis and she was not interested in his liquid monitoring due to his diabetes insipidus. Am I just supposed to send him to school and hope she knows what she is doing? The last nurse informed me that Aaron was falling asleep in class at THE END of the year and when I informed her that was a sign that somnething was not right she told me "don't worry he is just having a growth spurt" Really?? Because when I let the Dr know he ordered the EEG that showed he was having seizures. We have his open house in two weeks to talk with the staff. I will attempt to speak with her again and see what happens, but as for now I think I will just keep him at home.
Registration
Monday August 6, 2012
Today Nicholas registered for school and got his picture taken. He is so excited to have several of his friends in his class this year, especially Finn and Christian. He has Ms. Claxton and there are 23 kids in his class this year, which is quite a bit larger than last year. He is a smart boy and cathches on to things quickly so it won't be a problem for him. I am excited to see what he will learn this year but sad that the summer is over.
Taevon was supposed to register but we still don't have his school records from Washington.
Aaron register tomorrow and Keagan August 27. I hope Keagan loves school and has a great time.
Today Nicholas registered for school and got his picture taken. He is so excited to have several of his friends in his class this year, especially Finn and Christian. He has Ms. Claxton and there are 23 kids in his class this year, which is quite a bit larger than last year. He is a smart boy and cathches on to things quickly so it won't be a problem for him. I am excited to see what he will learn this year but sad that the summer is over.
Taevon was supposed to register but we still don't have his school records from Washington.
Aaron register tomorrow and Keagan August 27. I hope Keagan loves school and has a great time.
Monday, August 6, 2012
Back to school
Nicholas got all of his school supplies and the boys all have their backpacks and lunch boxes. I can't believe all of my boys will be in school this year. At least two of them will be home in the afternoons and on Fridays since they are just in Preschool. But then next year they will all be in school all day! They all look so cute with their backpacks and lunch boxes.
Nicholas is so excited to get back to school. He would rather read and do research (experiemnts) than play with toys. His new subjects of interest are DNA and dinosaurs. He is not the average 6 year old.
Keagan can't wait to go to school like his big brother. Every morning he asks me "I go to school dis mornin?" He is so cute! He really wants to ride the bus and is upset that I have to drive him. He wanted to know if Nicholas' bus could take him to school. Too funny!
Aaron will go to a special needs preschool on the days that he is feeling ok as long as his Drs give the ok. We will see as soon as we have his appointments over the next 2 weeks.
Taevon will be going to Kindergarten. He will also ride the bus because his caseworker said he loves the bus. I am nervous for the nurse to do his feeds because of all of the germs at school.
I wish all of the boys could go to the same school. All 4 of them are in different schools. I will be very busy with all of the classrooms. I plan on being the room parent for all of the boys and on their PTO's. That is a lot of meetings and party planning! Only a week left before school starts. We are going to have fun and spend lots of time together.
Nicholas is so excited to get back to school. He would rather read and do research (experiemnts) than play with toys. His new subjects of interest are DNA and dinosaurs. He is not the average 6 year old.
Keagan can't wait to go to school like his big brother. Every morning he asks me "I go to school dis mornin?" He is so cute! He really wants to ride the bus and is upset that I have to drive him. He wanted to know if Nicholas' bus could take him to school. Too funny!
Aaron will go to a special needs preschool on the days that he is feeling ok as long as his Drs give the ok. We will see as soon as we have his appointments over the next 2 weeks.
Taevon will be going to Kindergarten. He will also ride the bus because his caseworker said he loves the bus. I am nervous for the nurse to do his feeds because of all of the germs at school.
I wish all of the boys could go to the same school. All 4 of them are in different schools. I will be very busy with all of the classrooms. I plan on being the room parent for all of the boys and on their PTO's. That is a lot of meetings and party planning! Only a week left before school starts. We are going to have fun and spend lots of time together.
Thursday, August 2, 2012
Taevon's first dr appointment
Thursday August 2, 2012
Today Taevon went to see the pediatrician. We just love Dr C. He has so much medical history and is on so many meds. I still don't have all of the meds straight so I took all the bottles with me this morning.
Dr C said everything looked great. He gave me my list of Specialists for Taevon to see and I will start to schedule them tomorrow. Taevon did fine durinbg his exam and enjoyed all of the attention he received from everyone!
Weight: 48 pounds 3 ounces
Height: 45 1/2 inches
I can't believe how much he has grown in the year since we had seen him. When we were with him a year ago we bought him clothes that were a size 4T. He is now wearing size 6!! Going shopping to get him some more clothes because we bought 5T.
Today Taevon went to see the pediatrician. We just love Dr C. He has so much medical history and is on so many meds. I still don't have all of the meds straight so I took all the bottles with me this morning.
Dr C said everything looked great. He gave me my list of Specialists for Taevon to see and I will start to schedule them tomorrow. Taevon did fine durinbg his exam and enjoyed all of the attention he received from everyone!
Weight: 48 pounds 3 ounces
Height: 45 1/2 inches
I can't believe how much he has grown in the year since we had seen him. When we were with him a year ago we bought him clothes that were a size 4T. He is now wearing size 6!! Going shopping to get him some more clothes because we bought 5T.
Pirates and routines
Wednesday August 1, 2012
I think I finally have our routine down. It was a lot easier to get Taevon on our schedule than it was for Aaron. Aaron took months to get comfortable with our routine, Taevon only a few days. All of the boys are adjusting well and we are enjoying our time together. I feel so lucky to have been blessed with these 4 amazing little boys. I don't want the summer to end. I will miss our days together once school starts.
Nicholas and Keagan were pirates today and they had so much fun. They loved playing on Croc! Aaron and Taevon were full of giggles ans smiles!
Love these boys so much!! I don't want this summer to end!!
I think I finally have our routine down. It was a lot easier to get Taevon on our schedule than it was for Aaron. Aaron took months to get comfortable with our routine, Taevon only a few days. All of the boys are adjusting well and we are enjoying our time together. I feel so lucky to have been blessed with these 4 amazing little boys. I don't want the summer to end. I will miss our days together once school starts.
Nicholas and Keagan were pirates today and they had so much fun. They loved playing on Croc! Aaron and Taevon were full of giggles ans smiles!
Love these boys so much!! I don't want this summer to end!!
Monday, July 30, 2012
Another great day
Monday July 30, 2012
We had a great day. Taevon is doing better than we ever could have imagined. He is adjusting to the time change with no problems. He and Aaron are so cute together. They are really enjoying one anothers company. Nicholas is all about his G tube. He wants to help feed Taevon so bad. He keeps telling me that he needs to practice becuase he is going to be a research dr. He also said that he will have his Spiderman outfit in the closet just in case someone needs help. Too cute!! I can't believe that in a few short weeks school will start and I will be home without my boys. That is so sad to me.l I love being at home with them and watching them play. I don't know what I am going to do during my mornings alone.
We had a great day. Taevon is doing better than we ever could have imagined. He is adjusting to the time change with no problems. He and Aaron are so cute together. They are really enjoying one anothers company. Nicholas is all about his G tube. He wants to help feed Taevon so bad. He keeps telling me that he needs to practice becuase he is going to be a research dr. He also said that he will have his Spiderman outfit in the closet just in case someone needs help. Too cute!! I can't believe that in a few short weeks school will start and I will be home without my boys. That is so sad to me.l I love being at home with them and watching them play. I don't know what I am going to do during my mornings alone.
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