Monday April 22, 2013
Taevon had more labs done today. We are not sure what is going on but know we have a wonderful group of Drs. We are so thankful.
Monday, April 22, 2013
Saturday, April 20, 2013
lab results
Saturday April 20, 2013
I got the mail today and received Tae's appointment (Tuesday) summary from Dr M. (GI Dr) I was looking over it before I put it away and noticed that some of the labs he had drawn were abnormal. I mean VERY abnormal. His sodium level is VERY low and other levels are low and VERY high. I decided to check my messages and realized I missed calls from Dr M on Friday. They called twice and are wanting to see him again. I can't believe I missed the calls. I can hardly wait until Monday. I will be calling first thing in the morning. Not Taevon too. Ican't don't want to deal with more medical issues. Taevon has been easy no real medical concerns. I can't even think of any reason why his labs would be so bad. He does not have the kind of medical issues that Aaron has and I am very worried. I have been so wrapped up with Aaron's issues and am now wondering if I have missed something with Tae. It would not be so bad if it were just 1 or 2 that were abnormal but he has quite a few. I am praying that it is something that can be easily taken care of and that he will be just fine. He is such a sweet little boy. His smile melts my heart.
I got the mail today and received Tae's appointment (Tuesday) summary from Dr M. (GI Dr) I was looking over it before I put it away and noticed that some of the labs he had drawn were abnormal. I mean VERY abnormal. His sodium level is VERY low and other levels are low and VERY high. I decided to check my messages and realized I missed calls from Dr M on Friday. They called twice and are wanting to see him again. I can't believe I missed the calls. I can hardly wait until Monday. I will be calling first thing in the morning. Not Taevon too. I
Thursday, April 18, 2013
rolling
Thursday April 18, 2013
Aaron is rolling onto his side. This is huge! Since his episode of status epilepticus he has not been sitting up, rolling or really even moving around much. He has been content to just be on his back. I have been been worried that he had already started to lose much of his motor function from all of the seizures. I am so excited to see him rolling onto his side. I am hoping that with some more work he will be sitting up and moving around soon. Cognitively he is doing great. He is using his signs, words and following simple commands. He has been in a great mood and has been giving lots of kisses. He is such a sweet little boy and has taught me so much. I am a better person because of him. I am so thankful for him and I thank God every day for each day I get to spend with Aaron.
Aaron is rolling onto his side. This is huge! Since his episode of status epilepticus he has not been sitting up, rolling or really even moving around much. He has been content to just be on his back. I have been been worried that he had already started to lose much of his motor function from all of the seizures. I am so excited to see him rolling onto his side. I am hoping that with some more work he will be sitting up and moving around soon. Cognitively he is doing great. He is using his signs, words and following simple commands. He has been in a great mood and has been giving lots of kisses. He is such a sweet little boy and has taught me so much. I am a better person because of him. I am so thankful for him and I thank God every day for each day I get to spend with Aaron.
Wednesday, April 10, 2013
sick
Wednesday April 10, 2013
My sweet little Keagan is sick. It started yesterday with him throwing up all day and running a fever. This morning he complained of a sore throat. I knew it was strep when I saw the left side of his throat was completely white. He went in and saw Dr L (from Dr C's office) and it was confirmed with a test. He said a 4 minute test lit up after 30 secs. He has a antibiotic that he chose to flavor watermelon. I am praying that the other boys do not get sick, especially Aaron. His seizures increase dramatically when he is sick and I have started to wean him off his Depakote today. I am hoping for a quiet night and for Keagan to start feeling better.
My sweet little Keagan is sick. It started yesterday with him throwing up all day and running a fever. This morning he complained of a sore throat. I knew it was strep when I saw the left side of his throat was completely white. He went in and saw Dr L (from Dr C's office) and it was confirmed with a test. He said a 4 minute test lit up after 30 secs. He has a antibiotic that he chose to flavor watermelon. I am praying that the other boys do not get sick, especially Aaron. His seizures increase dramatically when he is sick and I have started to wean him off his Depakote today. I am hoping for a quiet night and for Keagan to start feeling better.
Tuesday, April 9, 2013
busy day
Tuesday April 9, 2013
Aaron had a lot of Dr appointments today. He saw the surgeon Dr S and he though this site looked really good. In 3 weeks he will finally get rid of the peg tube and get his button. I also found out that his biopsy came back positive for chronic reflux. He should have gotten the Nissen. Now we are trying another med to help and he will be scoped when he gets his button. If it is not any better he will need another surgery. Poor baby. It has taken him a very long time to bounce back form this surgery. After our appointment he had some labs drawn. He was so good and they had such a hard time getting any blood. After his labs he had a Neuro appointment. He is doing well with his seizures so now they want to start decreasing his Depakote. This med has a lot of side effects and causes liver damage. Aaron does not need any other issues. Finally we were on our way home. I feel good about his seizure control but am very nervous about weaning him off the Depakote. I am trusting and believing that this is what is right for Aaron. We were only home for a few minutes when I get a call form Dr T (Endo) the blood tests for Dr Y came back and his glucose is only 41. We talk about his rate of feed and his meds and his readings over the past few days. We are not sure why it was so low. The continuous feed was supposed to take care of that. We will keep a log and head back to the Dr to decide what we are going to do about his glucose levels. I am praying the new meds work so he does not have to go through another surgery.
LOVE this sweet boy
Aaron had a lot of Dr appointments today. He saw the surgeon Dr S and he though this site looked really good. In 3 weeks he will finally get rid of the peg tube and get his button. I also found out that his biopsy came back positive for chronic reflux. He should have gotten the Nissen. Now we are trying another med to help and he will be scoped when he gets his button. If it is not any better he will need another surgery. Poor baby. It has taken him a very long time to bounce back form this surgery. After our appointment he had some labs drawn. He was so good and they had such a hard time getting any blood. After his labs he had a Neuro appointment. He is doing well with his seizures so now they want to start decreasing his Depakote. This med has a lot of side effects and causes liver damage. Aaron does not need any other issues. Finally we were on our way home. I feel good about his seizure control but am very nervous about weaning him off the Depakote. I am trusting and believing that this is what is right for Aaron. We were only home for a few minutes when I get a call form Dr T (Endo) the blood tests for Dr Y came back and his glucose is only 41. We talk about his rate of feed and his meds and his readings over the past few days. We are not sure why it was so low. The continuous feed was supposed to take care of that. We will keep a log and head back to the Dr to decide what we are going to do about his glucose levels. I am praying the new meds work so he does not have to go through another surgery.
Sunday, April 7, 2013
picnic and golf
Sunday April 7, 2013
Keagan and I had a picnic today. He had so much fun eating outside. He wants to start eating all his meals outside. He loves to be outside. He would spend all day outside if he could. He has been practicing his golf swing and it is so cute. He is really focusing on trying to line up the ball. We are really looking forward to summer vacation.
he loved his meal in the sand bucket
Keagan and I had a picnic today. He had so much fun eating outside. He wants to start eating all his meals outside. He loves to be outside. He would spend all day outside if he could. He has been practicing his golf swing and it is so cute. He is really focusing on trying to line up the ball. We are really looking forward to summer vacation.
outside
Saturday April 6, 2013
Aaron is feeling better, but is still not himself. I took him outside and he did ok for about 15 minutes. Sitting up made him very tired and seemed to make him a little dizzy at the end. He slept for about 3 hours afterwards. He did enjoy hearing the boys play. Poor Taevon is still getting used to being in a room by himself. He is up quite a bit at night and has been napping in the afternoon.
Aaron is feeling better, but is still not himself. I took him outside and he did ok for about 15 minutes. Sitting up made him very tired and seemed to make him a little dizzy at the end. He slept for about 3 hours afterwards. He did enjoy hearing the boys play. Poor Taevon is still getting used to being in a room by himself. He is up quite a bit at night and has been napping in the afternoon.
Disney on Ice
Thursday April 4, 2013
The boys are so excited to go to Disney on Ice. Keagan can't wait to see Buzz. Nicholas is so excited that his cousin, Ashely is coming with us. The boys just love her and are always asking for her to come over and play.
They all loved the show. Keagan was actually quiet and still!!! He loved seeing all of his "friends" His favorite was Lotso. Both of the boys are really excited to go to Disney again. We were planning on going in November, but with Aaron being so sick we have pushed it back to February. I am looking forward to seeing their faces when we tell them we are going again. I forgot to bring my camera so I did not get any good pictures. Keagan insisted I take one with my phone during the Toy Story part and this is the best one.
The boys are so excited to go to Disney on Ice. Keagan can't wait to see Buzz. Nicholas is so excited that his cousin, Ashely is coming with us. The boys just love her and are always asking for her to come over and play.
They all loved the show. Keagan was actually quiet and still!!! He loved seeing all of his "friends" His favorite was Lotso. Both of the boys are really excited to go to Disney again. We were planning on going in November, but with Aaron being so sick we have pushed it back to February. I am looking forward to seeing their faces when we tell them we are going again. I forgot to bring my camera so I did not get any good pictures. Keagan insisted I take one with my phone during the Toy Story part and this is the best one.
Wednesday, April 3, 2013
all smiles
Taevon is loving be home with the boys. He loves watching them run around. He has come so far since last July. He interacts so much more with all of us. He reaches out and grabs us and throws toys for the boys to go and bring back to him. He loves when Nicholas helps tuck him in at night and always grabs a hold of his hand. I can't get enough of his smile and sweet giggle. I love this boy!
feeling better
Wednesday April 3, 2013
Aaron seems to be feeling a little better He is very weak and is not moving around a lot. I put him in his chair and he was able to sitr up for about 5 minutes. After that he would shake his head and start falling over to the side. I think I am going to do this a couple times a day and increase the time gradually. I don't want him to have to start completely over with his therapy once he is feeling better. I sure have missed his sweet smile!!
Aaron seems to be feeling a little better He is very weak and is not moving around a lot. I put him in his chair and he was able to sitr up for about 5 minutes. After that he would shake his head and start falling over to the side. I think I am going to do this a couple times a day and increase the time gradually. I don't want him to have to start completely over with his therapy once he is feeling better. I sure have missed his sweet smile!!
Easter
Sunday March 30, 2013
The boys slept in today. Aaron is still not feeling very well and is sleeping for most of the day. With Aaron being in the hospital everything that we usually do for Easter got pushed back to today. When they finally woke up they were so excited to see their Easter baskets. They loved everything and couldn't wait to play with their new toys.
Aaron slept all morning so we will be Celebrating Easter with him once he is feeling better. I sure did miss having all of my boys together this morning. After the boys ate their breakfast they decorated eggs. They had so much fun and Keagan was a mess at the end of the morning!!
My sweet angel is still very tired. I can't wait for him to start feeling better.
love this little boy
The boys slept in today. Aaron is still not feeling very well and is sleeping for most of the day. With Aaron being in the hospital everything that we usually do for Easter got pushed back to today. When they finally woke up they were so excited to see their Easter baskets. They loved everything and couldn't wait to play with their new toys.
Aaron slept all morning so we will be Celebrating Easter with him once he is feeling better. I sure did miss having all of my boys together this morning. After the boys ate their breakfast they decorated eggs. They had so much fun and Keagan was a mess at the end of the morning!!
My sweet angel is still very tired. I can't wait for him to start feeling better.
Spring
Saturday March 29, 2013
Today the weather was great. We went outside to play and the boys had so much fun. The sidewalk chalk and the bubble machine were the favorites of the day. I can't wait for summer vacation.
Today the weather was great. We went outside to play and the boys had so much fun. The sidewalk chalk and the bubble machine were the favorites of the day. I can't wait for summer vacation.
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