Tuesday April 22, 2015
Its official. We just booked our vacation for Disney World!! I am so excited to make lots of wonderful memories again. The boys are going to be so excited when we tell them. We are going to wait to tell them until its closer to time to go with a special surprise. I can't wait to see their faces. They have no idea because we just went last year and they think it will be a few years before we go again.!! We never know about Aaron. Sometimes it is day to day and even moment to moment with this precious angel. He LOVES Disney World. So we are going to try and go as often as possible. feeling extremely blessed and enjoying every moment with my family!! I am so excited to see the castle decorated for Christmas. And as an extra surprise for the boys we are taking grandma and grandpa, Uncle Zack, Aunt Stephanie and Arianna.
Wednesday, April 22, 2015
Wednesday, April 15, 2015
more labs
Monday April 13, 2015
Aaron is having more seizures again. We are once again increasing his Onfi. This is the medication that his body does not handle very well. We have increased it twice and both times have had to decrease it again. He has a lot more trouble maintaining his body temp, his heart rate is low and he is really lethargic. I did not want to increase this med. I begged them not too. Dr K (neuro ) said there isn't much else to do except start another med that has lots of side effects. We are starting very low and increasing it very slowly. I am praying that we will be able to get to a beneficial dose this time.
I talked to Dr O (hematologist ) this morning. They finally got back the lab results. Aaron was low in factor 8. At very low levels this is called Hemophilia (10 or less) Thankfully Aaron was at 40. Normal is 50-100. This along with his Thrombocytopenia gives him a diagnosis of Von Willebrand Disease. He will have more labs to determine the exact type. The main treatment 9no cure) is the med DDAVP. The problem is Aaron already takes this medication for his Diabetes Insipidus (blood sodium). If we give him a higher dose he will not urinate and his sodium level will drop and he will crash and this would lead to a life or death emergecy for Aaron. I pray they determine the type they will figure out a treatment. I LOVE this crazy boy. Just praying and cherishing every second we spend together and as a family.
Aaron is having more seizures again. We are once again increasing his Onfi. This is the medication that his body does not handle very well. We have increased it twice and both times have had to decrease it again. He has a lot more trouble maintaining his body temp, his heart rate is low and he is really lethargic. I did not want to increase this med. I begged them not too. Dr K (neuro ) said there isn't much else to do except start another med that has lots of side effects. We are starting very low and increasing it very slowly. I am praying that we will be able to get to a beneficial dose this time.
I talked to Dr O (hematologist ) this morning. They finally got back the lab results. Aaron was low in factor 8. At very low levels this is called Hemophilia (10 or less) Thankfully Aaron was at 40. Normal is 50-100. This along with his Thrombocytopenia gives him a diagnosis of Von Willebrand Disease. He will have more labs to determine the exact type. The main treatment 9no cure) is the med DDAVP. The problem is Aaron already takes this medication for his Diabetes Insipidus (blood sodium). If we give him a higher dose he will not urinate and his sodium level will drop and he will crash and this would lead to a life or death emergecy for Aaron. I pray they determine the type they will figure out a treatment. I LOVE this crazy boy. Just praying and cherishing every second we spend together and as a family.
hello sunshie
Saturday April 9, 2015
We had a great weekend and enjoyed all of the warm weather and sunshine. We had a silly string fight and a picnic. The boys loved spraying everyone with silly string. They laughed and squealed the whole time. Aaron and Taevon loved hearing them laugh and run around the backyard. I enjoy the time we spend as a family so much.
We cooked hotdogs on the grill and had a picnic. The boys loved being able to eat outside. We are all looking forward to summer vacation.
We had a great weekend and enjoyed all of the warm weather and sunshine. We had a silly string fight and a picnic. The boys loved spraying everyone with silly string. They laughed and squealed the whole time. Aaron and Taevon loved hearing them laugh and run around the backyard. I enjoy the time we spend as a family so much.
We cooked hotdogs on the grill and had a picnic. The boys loved being able to eat outside. We are all looking forward to summer vacation.
another sleep study
Tuesday-Wednesday April 7-8, 2015
Aaron had his sleep study last night. I was so worried about how he would do with everything. I did not want him to get so stressed he would not be able to sleep and I really wanted them to be able to get all of the info they needed in one night. Boy was I worng. He did great. He slept ALL NIGHT!! Thats right ALL NIGHT! I could not believe how well he slept. He moved a few times but slept until 5am!! Why can't he do that at home. He NEVER sleeps all night unless he is sick. I hope they got everythig that they needed. I am looking forward to talking with Dr K ( neuro) about the results. I don't think he has Sleep Apnea. I can answer no to all of the questions they asked for Keag for Aaron. I am hoping she has some other ideas to help him sleep all night and hopefully decrease the amount of seizures
These were taken before they put in the nasal cannula. That didn't even bother him like it usually does. I hope they can help him sleep better at night so he doesnt need to sleep so much during the day. Love this sweet little boy!
Aaron had his sleep study last night. I was so worried about how he would do with everything. I did not want him to get so stressed he would not be able to sleep and I really wanted them to be able to get all of the info they needed in one night. Boy was I worng. He did great. He slept ALL NIGHT!! Thats right ALL NIGHT! I could not believe how well he slept. He moved a few times but slept until 5am!! Why can't he do that at home. He NEVER sleeps all night unless he is sick. I hope they got everythig that they needed. I am looking forward to talking with Dr K ( neuro) about the results. I don't think he has Sleep Apnea. I can answer no to all of the questions they asked for Keag for Aaron. I am hoping she has some other ideas to help him sleep all night and hopefully decrease the amount of seizures
These were taken before they put in the nasal cannula. That didn't even bother him like it usually does. I hope they can help him sleep better at night so he doesnt need to sleep so much during the day. Love this sweet little boy!
ENT appointment
Tuesday April 7, 2015
Keag saw Dr R today to talk about getting his tonsils and adenoids removed. I was dreading this appointment. We talked about the results of his Sleep Study and he examined Keagan. He asked a bunch of questions. Did he snore? Did he jerk awake? Does he sleep walk, have night terrors? Thankfully I was able to answer "NO" to all of these. Dr R said he DOES NOT need to have them removed. He said his tonsils were not enlarged or obstructing his breathing. WHOO HOO!!!!!
He said he will send a letter to Dr T (neuro) and Dr C (pediatrician) that maybe working on his quality of sleep would help instead. I was so happy when he said no surgery!!
Keag saw Dr R today to talk about getting his tonsils and adenoids removed. I was dreading this appointment. We talked about the results of his Sleep Study and he examined Keagan. He asked a bunch of questions. Did he snore? Did he jerk awake? Does he sleep walk, have night terrors? Thankfully I was able to answer "NO" to all of these. Dr R said he DOES NOT need to have them removed. He said his tonsils were not enlarged or obstructing his breathing. WHOO HOO!!!!!
He said he will send a letter to Dr T (neuro) and Dr C (pediatrician) that maybe working on his quality of sleep would help instead. I was so happy when he said no surgery!!
Easter 2015
Sunday April 9, 2015
We had a great Easter. Spending the entire day together laughing and celebrating Jesus. We started our day VERY early and went to the Sunrise Service at 6:30 am. It was so nice to have everyone together at church. (Aaron can't go to the regular service because of his meds and nap) Aaron loved the music and danced and clapped the entire time. We had carry in breakfast and the boys LOVED grandmas chocolate and oatmeal muffins. The boys ran around and helped clean up and pushed the coffee cart around. They are great at cleaning up at church, not so much at home. We stayed until the next service at 10am because the boys were in the Easter play. It was very cute and they did a great job. The boys stayed with grandma and grandpa for the service. Nicholas is talking about being Baptized and they were doing one during the service and he wanted to watch. They also got to participate in the Easter egg hunt after the service.
The boys couldn't wait to get home and get their Easter baskets. They were so excited with their surprises. Keagan squealed when he saw his Peter Pan Lego. Aaron was was so excited to get a new Jake movie. Nicholas loved his wrestler set and Taevon enjoyed his shaker toys.
While Aaron took a nap we watched a movie and then played our new favorite game, Bounce It. Taevon laughed everytime the ball bounced onto the floor , which was often.
Once Aaron woke up we had our Easter egg hunt i the backyard. The boys had so much fun looking for the eggs and seeing what was inside. Aaron loved being outside and hearing the birds. Taevon had a good time sitting in his bean bag chair outside.
We ended the night with Bunny Butt pancakes.
What a great day. It was so nice to spend the day with family the truly loves and enjoys ALL of my boys.
We had a great Easter. Spending the entire day together laughing and celebrating Jesus. We started our day VERY early and went to the Sunrise Service at 6:30 am. It was so nice to have everyone together at church. (Aaron can't go to the regular service because of his meds and nap) Aaron loved the music and danced and clapped the entire time. We had carry in breakfast and the boys LOVED grandmas chocolate and oatmeal muffins. The boys ran around and helped clean up and pushed the coffee cart around. They are great at cleaning up at church, not so much at home. We stayed until the next service at 10am because the boys were in the Easter play. It was very cute and they did a great job. The boys stayed with grandma and grandpa for the service. Nicholas is talking about being Baptized and they were doing one during the service and he wanted to watch. They also got to participate in the Easter egg hunt after the service.
The boys couldn't wait to get home and get their Easter baskets. They were so excited with their surprises. Keagan squealed when he saw his Peter Pan Lego. Aaron was was so excited to get a new Jake movie. Nicholas loved his wrestler set and Taevon enjoyed his shaker toys.
While Aaron took a nap we watched a movie and then played our new favorite game, Bounce It. Taevon laughed everytime the ball bounced onto the floor , which was often.
Once Aaron woke up we had our Easter egg hunt i the backyard. The boys had so much fun looking for the eggs and seeing what was inside. Aaron loved being outside and hearing the birds. Taevon had a good time sitting in his bean bag chair outside.
We ended the night with Bunny Butt pancakes.
What a great day. It was so nice to spend the day with family the truly loves and enjoys ALL of my boys.
eggs and bunny butt cookies
Saturday April 4, 2015
The boys love to decorate Easter eggs. We had so much fun tonight. I am so lucky to have a house full of happy giggling little boys.
I made them some bunny butt cookies. They thought they were so funny. Keagan laughed so hard when he saw them. I LOVE to hear my boys giggle. It is one of the best sounds in the world.
The boys love to decorate Easter eggs. We had so much fun tonight. I am so lucky to have a house full of happy giggling little boys.
I made them some bunny butt cookies. They thought they were so funny. Keagan laughed so hard when he saw them. I LOVE to hear my boys giggle. It is one of the best sounds in the world.
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