Tuesday February 20, 2013
Today was a very good day. Aaron only had 3 seizures and he was more himself today. He played with his ball, turtle and basketball all day. He has learned to differentiate between his ball and basketball. His ball is "ball" and his basketball is "ba ball". I am glad to see him wanting to play. He also asked to eat today. He has not wanted to eat for so long. He ate half a container of baby food (green beans) and some yogurt. I am hoping that he will want to continue to eat food. Although he is doing good today I am still overcome with fear. Knowing that he needs to drink at 11p and 3a and that he might have another huge seizure scares me. I can't get the image of his purple face out of mind. When he does not wake up at his usual times my stomach is in knots. Is he ok? Is he having a seizure? Did he stop breathing again? are just some of the thoughts running through my mind. Holding him and snuggling with him at night has always been one of my favorite times with Aaron. It is quiet and he is still sleepy and he just melts into my arms. Now during these times he might have a seizure and the feel of his little body becoming stiff is awful. I wish there was something I could do to make it all better. I am hoping for a good night tonight. We need it.
Wednesday, February 20, 2013
cluster seizures
Monday February 18, 2013
Aaron has begun to have more seizures back to back. Last night he had 4 in a row the first time and 3 the next time. It is awful to see his little body jerk and his arms shoot over his head. There is nothing I can do but try to hold his hand and talk to him. He stops breathing but so far just when he gets to the point where I really panic he takes a deep breath. I just want these meds to work. I cant leave him for a second. He pulls himself up on everyone and everything and falls over without warning due to the drop seizures. He will also just fall over when he is crawling. His poor little forehead always has a red mark. He doesn't want to be held, he wants to play. I can tell he feels dizzy. He shakes his head and will hit his head. I can't reason with him just to let me hold him and it is so hard to watch. Dr B increased his Depakote to 2 am, 1 afternoon and 2pm for 1 week then to 2 am, 2 afternoon and 2 pm. I am hoping that this med is going to work because so far he is tolerating it ok. Even though he is not feeling his best he is still giving kisses and still has a smile. What an angel!
Aaron has begun to have more seizures back to back. Last night he had 4 in a row the first time and 3 the next time. It is awful to see his little body jerk and his arms shoot over his head. There is nothing I can do but try to hold his hand and talk to him. He stops breathing but so far just when he gets to the point where I really panic he takes a deep breath. I just want these meds to work. I cant leave him for a second. He pulls himself up on everyone and everything and falls over without warning due to the drop seizures. He will also just fall over when he is crawling. His poor little forehead always has a red mark. He doesn't want to be held, he wants to play. I can tell he feels dizzy. He shakes his head and will hit his head. I can't reason with him just to let me hold him and it is so hard to watch. Dr B increased his Depakote to 2 am, 1 afternoon and 2pm for 1 week then to 2 am, 2 afternoon and 2 pm. I am hoping that this med is going to work because so far he is tolerating it ok. Even though he is not feeling his best he is still giving kisses and still has a smile. What an angel!
My ninja turtles
Sunday February 17, 2013
My boys are obsessed with the Teenage Muntant Ninja Turtles. They LOVE them. I found the outfits and knew they would have so much fun. They jumped around and had "battles" all day.
adorable
My boys are obsessed with the Teenage Muntant Ninja Turtles. They LOVE them. I found the outfits and knew they would have so much fun. They jumped around and had "battles" all day.
Ninja training day 2
Saturday February 16, 2013
The boys had so much fun with Ninja Training last time we decided to do it again this weekend. They are so fun to watch and they take it so seriously.
The boys had so much fun with Ninja Training last time we decided to do it again this weekend. They are so fun to watch and they take it so seriously.
More seizures
Friday February 15, 2013
Aaron seemed to be doing ok yesterday but his seizures returned last night. He has several back to back and then has a hard time returning to his baseline. He is being stressed dosed but he is still not back to himself. I talked with Neuro and Dr B (neuro covering for Dr O) and she increased his Depakote. He is now taking 250 mg twice a day. Hopefully this will help. I am thankful that he is still drinking and so far his temp has been manageable. I am hoping that he will be able to tolerate this medication and we can get these seizures under control.
Aaron seemed to be doing ok yesterday but his seizures returned last night. He has several back to back and then has a hard time returning to his baseline. He is being stressed dosed but he is still not back to himself. I talked with Neuro and Dr B (neuro covering for Dr O) and she increased his Depakote. He is now taking 250 mg twice a day. Hopefully this will help. I am thankful that he is still drinking and so far his temp has been manageable. I am hoping that he will be able to tolerate this medication and we can get these seizures under control.
Valentine's day
LOVE these valentines!!
Keagan was so excited to get home form school today. He is obsessed with our "fun lunches". He kept guessing what kind of sandwich I had made today.
too cute!
Nicholas came home from school and they were so cute showing each other their valentines from school.
Nicholas and Keagan got spy glasses for their gift while Tae and Aaron got the Crawl and Cruise Musical Jungle. They both the love the music and Aaron loves to throw the balls.
home
Aaron is home and is doing ok. Thinking about all of the things with Lennox - Gastaut Syndrome is exhausting. Right now I am going to just focus on all of the positive. He is ok now and I am going to enjoy every second with this precious little angel.
Friday, February 15, 2013
4 1/2 minutes
Tuesday February 12, 2013
This is a post I NEVER wanted to write. It is something I NEVER want to relive but know it is quite possible I will experience it again.
I went to give Aaron his bottle around midnight. He was having a seizure. I held his hand and talked to him like I always do. He finally stopped and I turned around to get a diaper and wipes. The wipes container was empty so I filled it. When I turned around he looked funny. I picked him up and he was so cold and so stiff. My heart stopped. I started to shake. I took him in the hall and his mouth was blue and his face was turning purple. My baby was not breathing. I froze I shook him I did a sternal rub...nothing. He was still purple. I called for 911 to be called. I laid him on the floor I was shaking and he wasn't breathing. I did another sternal rub and he started to gasp for air. But his breathing is labored and irregular. Somehow I am on the phone talking and they are telling me not to do CPR it is all a blur I don't understand where is the ambulance who am I talking to my baby is still blue he is gasping for air and not responsive I need them to help him. I can't lose him where are they. It seemed like forever before they got there then they were there but he was still blue. They gave him oxygen until the paramedics arrived. Why is it taking so long I am giving his long and complicated history why are they not understanding diabetes insipidus why cant I remember all of his meds did I tell them all of his medical conditions so much commotion so many people so many questions. I can't think. Help my baby. He looks better but still blue. His breathing isn't as loud. We get in the ambulance and he has another seizure. They can't get the IV started they are both trying. He is having another seizure. They have tried his arm, back of his hand, wrist and both feet still no access. They are talking about an IO he needs meds. Finally he gets access on the underside of his wrist. He gets a dose of Ativan. His seizure stops but his heart rate is low and unstable. We are finally on our way to the hospital. We are going over his history again. They check his blood sugar it is 72..OK for Aaron. He has another seizure. He gets another dose of Ativan it stops and he goes to sleep. He is so cold but his color looks better. I can't help him. I can't make it better. All I can do is stare at the monitor and pray. He is talking to me I don't hear what he is saying I am watching the monitor I am praying. My stomach hurts I am going to be sick my head is pounding. He is talking to the hospital we are there. They rush him into room 3. There are so many people in there. So much talking, so much chaos but they all have jobs. This is all unreal. Questions and more questions. Meds, monitors, labs, He is crying I can't get to him I have to stay back I can't see the monitor how is he doing he stops crying and other people rush in. I hear abnormal heart rhythm they do a EKG. He gets more meds. People start to leave. They are still doing things to him. Finally they tell me I can come see him. I grab his hand and it is so cold. I kiss his head it is so cold. They bring him more warm blankets, his temp is coming up. His eyes are open I talk to him and he goes to sleep. He is OK. I can see the monitor his heart rate is up to 62 and his respirations are normal. They call Dr C and he admits him to peds. We finally get to the floor around 4:30 am. I am exhausted I am sick to my stomach and my head is throbbing. I just want to, need to hold my baby. We are settled. I pick him up and he melts into my arms. They check on him frequently I can see his monitor his heart rate is still coming up. Finally Dr W and Dr S (from Dr C's office) came and see him. They don't know why this happened. Neuro is called. Tests are read. Dr B (neuro from Dr O's office) comes to see us. The news is not good. She starts with I am sorry but...Again I do not hear anything. I just look at my sweet baby and finally start to cry. She is nice she waits she lets me get myself together and starts to explain what is wrong with my sweet angel. He has Lennox - Gastaut Syndrome. The prognosis is not good. Bleak is the word that was used. So our journey begins of finding some meds that will help get these seizures under control. No cure and very hard to control he has a very long road ahead of him. This syndrome causes brain damage so this is in addition to all that he is already dealing with. We are lucky. They helped my baby and he is OK. But this can happen again.
As I look back on that night I realize that what I thought was forever was actually only 4 1/2 minutes. They were there that quick. They were so gentle with him and I am so thankful for each of them. All 4 of the firefighters and the 2 paramedics. I will never be able to thank them enough for all they did that night for Aaron. There is more to write but I am emotionally exhausted. For now he is fine. We are lucky. We are blessed with more time with this amazing little boy.
God is good
This is a post I NEVER wanted to write. It is something I NEVER want to relive but know it is quite possible I will experience it again.
I went to give Aaron his bottle around midnight. He was having a seizure. I held his hand and talked to him like I always do. He finally stopped and I turned around to get a diaper and wipes. The wipes container was empty so I filled it. When I turned around he looked funny. I picked him up and he was so cold and so stiff. My heart stopped. I started to shake. I took him in the hall and his mouth was blue and his face was turning purple. My baby was not breathing. I froze I shook him I did a sternal rub...nothing. He was still purple. I called for 911 to be called. I laid him on the floor I was shaking and he wasn't breathing. I did another sternal rub and he started to gasp for air. But his breathing is labored and irregular. Somehow I am on the phone talking and they are telling me not to do CPR it is all a blur I don't understand where is the ambulance who am I talking to my baby is still blue he is gasping for air and not responsive I need them to help him. I can't lose him where are they. It seemed like forever before they got there then they were there but he was still blue. They gave him oxygen until the paramedics arrived. Why is it taking so long I am giving his long and complicated history why are they not understanding diabetes insipidus why cant I remember all of his meds did I tell them all of his medical conditions so much commotion so many people so many questions. I can't think. Help my baby. He looks better but still blue. His breathing isn't as loud. We get in the ambulance and he has another seizure. They can't get the IV started they are both trying. He is having another seizure. They have tried his arm, back of his hand, wrist and both feet still no access. They are talking about an IO he needs meds. Finally he gets access on the underside of his wrist. He gets a dose of Ativan. His seizure stops but his heart rate is low and unstable. We are finally on our way to the hospital. We are going over his history again. They check his blood sugar it is 72..OK for Aaron. He has another seizure. He gets another dose of Ativan it stops and he goes to sleep. He is so cold but his color looks better. I can't help him. I can't make it better. All I can do is stare at the monitor and pray. He is talking to me I don't hear what he is saying I am watching the monitor I am praying. My stomach hurts I am going to be sick my head is pounding. He is talking to the hospital we are there. They rush him into room 3. There are so many people in there. So much talking, so much chaos but they all have jobs. This is all unreal. Questions and more questions. Meds, monitors, labs, He is crying I can't get to him I have to stay back I can't see the monitor how is he doing he stops crying and other people rush in. I hear abnormal heart rhythm they do a EKG. He gets more meds. People start to leave. They are still doing things to him. Finally they tell me I can come see him. I grab his hand and it is so cold. I kiss his head it is so cold. They bring him more warm blankets, his temp is coming up. His eyes are open I talk to him and he goes to sleep. He is OK. I can see the monitor his heart rate is up to 62 and his respirations are normal. They call Dr C and he admits him to peds. We finally get to the floor around 4:30 am. I am exhausted I am sick to my stomach and my head is throbbing. I just want to, need to hold my baby. We are settled. I pick him up and he melts into my arms. They check on him frequently I can see his monitor his heart rate is still coming up. Finally Dr W and Dr S (from Dr C's office) came and see him. They don't know why this happened. Neuro is called. Tests are read. Dr B (neuro from Dr O's office) comes to see us. The news is not good. She starts with I am sorry but...Again I do not hear anything. I just look at my sweet baby and finally start to cry. She is nice she waits she lets me get myself together and starts to explain what is wrong with my sweet angel. He has Lennox - Gastaut Syndrome. The prognosis is not good. Bleak is the word that was used. So our journey begins of finding some meds that will help get these seizures under control. No cure and very hard to control he has a very long road ahead of him. This syndrome causes brain damage so this is in addition to all that he is already dealing with. We are lucky. They helped my baby and he is OK. But this can happen again.
As I look back on that night I realize that what I thought was forever was actually only 4 1/2 minutes. They were there that quick. They were so gentle with him and I am so thankful for each of them. All 4 of the firefighters and the 2 paramedics. I will never be able to thank them enough for all they did that night for Aaron. There is more to write but I am emotionally exhausted. For now he is fine. We are lucky. We are blessed with more time with this amazing little boy.
God is good
Soccer
Saturday February 9, 2013
Keagan had his first sccoer game this morning. He is playing in Huntertown through his school. He looked so cute in his shin guards. He had the best time and was excited to be on the blue (his favorite color) team. He made 2 goals and yelling "I win, I win" Too cute!!
Keagan had his first sccoer game this morning. He is playing in Huntertown through his school. He looked so cute in his shin guards. He had the best time and was excited to be on the blue (his favorite color) team. He made 2 goals and yelling "I win, I win" Too cute!!
movie night
Friday February 8, 2013
Nicholas had a movie night at school tonight. They watched Diary of a Wimpy Kid. He had so much fun with his friends. While he was at school Keagan and I had our own special movie night. We made Whoopie Pies (keags favorite) and watched Alice in Wonderland on Disney Junior. We had the best time snuggled on the couch. I love these boys and feel so lucky to have each of them in my life.
Nicholas had a movie night at school tonight. They watched Diary of a Wimpy Kid. He had so much fun with his friends. While he was at school Keagan and I had our own special movie night. We made Whoopie Pies (keags favorite) and watched Alice in Wonderland on Disney Junior. We had the best time snuggled on the couch. I love these boys and feel so lucky to have each of them in my life.
A trip to the dr
Thursday February 7 , 2013
What a day! I got a call this morning that Taevon was fussy and they wanted to know if I wanted them to feed him early. I told them I would just come and get him. I went to the office to get him. The aide brought him to the office and said "he has been fussing all morning" and not in a friendly way. It caught me off guard. Who would act like that with a child that can't talk and tell anyone what is going on. I said "ok thank you" and she turned and walked away. She didn't even say bye to Tae or act like there was any sort of bond between them. So sad. I got him out to the van and when I went to put him in his car seat he started to cry. I got him home and he was really crying. I tried to change his diaper because of course he was soaked and I noticed he was holding his left leg funny. I called the pediatrician thinking that maybe his knee had popped out of socket (we had been told by his PT in Washington that it happens). Dr C looked at him and thought everything looked ok but wanted to get an X-ray. We got that done and they sent us back to see Dr C. I was in shock, angry and in disbelief when she told me his leg was broken and we needed to go and get a cast. I was so mad I couldn't even think straight. A broken leg, are you kidding me?!?!?! What did they do to my little boy. This is the second time that he has been hurt at school and all they can say is " We don't know what happened" Really? Five adults and nobody knows?! We will be doing homeschooling for sure! I took him and he got his cast, thankfully it was a short cast. He was really uncomfortable and I rocked him all night. My sweet little boy. I hate that he can't tell me what happened. I don't trust my kids with anyone. I only let my family watch my kids and only if I really need it. I only need them for Dr or therapy appts or an occasional day here and there. I LOVE being with my kids and never want to miss a moment. They are only going to be little once and I want to spend every moment I can with them. I have learned to never take anything for granted.
Nicholas checking out the x-rays
What a day! I got a call this morning that Taevon was fussy and they wanted to know if I wanted them to feed him early. I told them I would just come and get him. I went to the office to get him. The aide brought him to the office and said "he has been fussing all morning" and not in a friendly way. It caught me off guard. Who would act like that with a child that can't talk and tell anyone what is going on. I said "ok thank you" and she turned and walked away. She didn't even say bye to Tae or act like there was any sort of bond between them. So sad. I got him out to the van and when I went to put him in his car seat he started to cry. I got him home and he was really crying. I tried to change his diaper because of course he was soaked and I noticed he was holding his left leg funny. I called the pediatrician thinking that maybe his knee had popped out of socket (we had been told by his PT in Washington that it happens). Dr C looked at him and thought everything looked ok but wanted to get an X-ray. We got that done and they sent us back to see Dr C. I was in shock, angry and in disbelief when she told me his leg was broken and we needed to go and get a cast. I was so mad I couldn't even think straight. A broken leg, are you kidding me?!?!?! What did they do to my little boy. This is the second time that he has been hurt at school and all they can say is " We don't know what happened" Really? Five adults and nobody knows?! We will be doing homeschooling for sure! I took him and he got his cast, thankfully it was a short cast. He was really uncomfortable and I rocked him all night. My sweet little boy. I hate that he can't tell me what happened. I don't trust my kids with anyone. I only let my family watch my kids and only if I really need it. I only need them for Dr or therapy appts or an occasional day here and there. I LOVE being with my kids and never want to miss a moment. They are only going to be little once and I want to spend every moment I can with them. I have learned to never take anything for granted.
Wednesday, February 6, 2013
Aaron's EKG
Wednesday February 6, 2013
Aaron had his EKG this afternoon. Nick wanted to go with us and he had the best time. The tech was great and let Nick help attach the leads and explained everything on the monitor. Nick was so excited to help and asked lots of questions. The tech could not believe the type of questions he was asking and how he was able to understand what he was learning. Aaron did fine and enjoyed all of the attention. His heart rate was low (64) so hopefully we will have the results tomorrow. I am hoping that they decide to put him on another med. This one has so many side effects and he already has so much going on I really don't want him to be on the Banzel. I am going to pray about it and trust that Dr O will make the right decision for Aaron.
Aaron had his EKG this afternoon. Nick wanted to go with us and he had the best time. The tech was great and let Nick help attach the leads and explained everything on the monitor. Nick was so excited to help and asked lots of questions. The tech could not believe the type of questions he was asking and how he was able to understand what he was learning. Aaron did fine and enjoyed all of the attention. His heart rate was low (64) so hopefully we will have the results tomorrow. I am hoping that they decide to put him on another med. This one has so many side effects and he already has so much going on I really don't want him to be on the Banzel. I am going to pray about it and trust that Dr O will make the right decision for Aaron.
Keagan's check up
Wednesday February 6, 2013
Keagan had his appointment with Dr C today. After finally finding a parking spot we made it on time. Keagan grew 2.5 inches and gained 6 pounds. He is 42.5 inches tall and weighs 43 pounds. He was hoping to be 45 inches tall in order to ride Space Mountain at Disney World this fall. We talked about his lack of focus, trouble transitioning between activites, poor impulse control, tantrums, anger management and school. Dr C stated meds will soon be needed. I am reluctant to put him on meds but will do what is needed fro Keagan. We have a follow up appointment in May to talk about the issues, school and how he is doing. He is such a sweet boy and I just want the best for him.
Keagan had his appointment with Dr C today. After finally finding a parking spot we made it on time. Keagan grew 2.5 inches and gained 6 pounds. He is 42.5 inches tall and weighs 43 pounds. He was hoping to be 45 inches tall in order to ride Space Mountain at Disney World this fall. We talked about his lack of focus, trouble transitioning between activites, poor impulse control, tantrums, anger management and school. Dr C stated meds will soon be needed. I am reluctant to put him on meds but will do what is needed fro Keagan. We have a follow up appointment in May to talk about the issues, school and how he is doing. He is such a sweet boy and I just want the best for him.
overwhelmed
Whew...what a day. Got a late start this morning and just could not seem to get back on track. I am very organized but today it seemed like I could not find anything. Trying to get the kids dressed and ready for the bus, clean off the table, get Keagan to his Dr appointment and start some laundry only to find out that the dryer is not working AT ALL! REALLY? Like I have time to schedule a repairman today but it needs to be done today, with 6 people missing a day of laundry means I will be doing it on the weekend. YUCK! We were running late for the Dr and of course the parking garage is completely FULL! So after driving around what seems like forever we finally found a spot in a parking lot across the street. We finally made it to our appointment with 1 minute to spare. Keagan kept asking to walk slower..poor baby. It probably looked like I was dragging him across the streeet :) After his appointment I noticed Nicholas had left his snowpants in the backseat of the Jeep. Not only does he need snow pants today for recess he brought home someone elses snow pants. Another stop before I zip home to get Taevon off the bus. Hopefully today will slow down some. I can only hope!
Tuesday, February 5, 2013
seizures, another med and more tests
Tuesday February 5, 2013
Aaron is still having seizures and they have started to increase even more. He is holding his breath for longer periods of time and his mouth turns blue. I talked with Dr O's nurse and Dr O wants to add Banzel in hopes of getting his seizures under control. It can affect the heart and since he has suffered cardiac arrest and his heart rate often drops she needs to run his history by the dr before he can start. Dr O also wants a baseline EKG so he will have that tomorrow. This med makes me very nervous since he already has heart issues. I will be talking to Dr C tomorrow (Keagan has appointment) about his thoughts on this med. After all the problems with the last med I am not taking any chances. Other than the seizures he is doing really well.
LOVE his crazy curls!!!!
Aaron is still having seizures and they have started to increase even more. He is holding his breath for longer periods of time and his mouth turns blue. I talked with Dr O's nurse and Dr O wants to add Banzel in hopes of getting his seizures under control. It can affect the heart and since he has suffered cardiac arrest and his heart rate often drops she needs to run his history by the dr before he can start. Dr O also wants a baseline EKG so he will have that tomorrow. This med makes me very nervous since he already has heart issues. I will be talking to Dr C tomorrow (Keagan has appointment) about his thoughts on this med. After all the problems with the last med I am not taking any chances. Other than the seizures he is doing really well.
LOVE his crazy curls!!!!
Monday, February 4, 2013
Snow fun
Monday February 4, 2013
Today was the last day of the kid's winter break. We had a great time and kept busy. Today Keagan wanted to play in the snow, but it was too cold for Aaron to be outside. So, I brought the snow inside. Keagan squealed when he saw his water table filled with snow! He had the best time and played with it all day. Every few minutes he would ask for more snow, I think he was eating it as fast as I was bringing it inside.
Today was the last day of the kid's winter break. We had a great time and kept busy. Today Keagan wanted to play in the snow, but it was too cold for Aaron to be outside. So, I brought the snow inside. Keagan squealed when he saw his water table filled with snow! He had the best time and played with it all day. Every few minutes he would ask for more snow, I think he was eating it as fast as I was bringing it inside.
Sunday, February 3, 2013
Ninja training
Sunday February 3, 2013
The boys had Ninja Training today. It was the funniest thing to watch. They had so much fun and it kept them busy all morning.
ready to try out their night vision goggles
We will definitely be doing this again soon. The boys had all kinds of activities to do. They were timed, who could get through without touching any of the lasers, who could get out the most bombs, and they did it in the dark (with sunglasses on). I can't wait for summer so we can get outside and do all of the activities I have planned.
The boys had Ninja Training today. It was the funniest thing to watch. They had so much fun and it kept them busy all morning.
We will definitely be doing this again soon. The boys had all kinds of activities to do. They were timed, who could get through without touching any of the lasers, who could get out the most bombs, and they did it in the dark (with sunglasses on). I can't wait for summer so we can get outside and do all of the activities I have planned.
Saturday, February 2, 2013
Taevon loses a tooth
Friday February 1, 2013
Taevon lost his first tooth today. I noticed it was loose a few days ago when I was brushing his teeth. Today it was just hanging by a corner. By the time I got something to pull it out he pushed it out with his thumb. He was so excited about all the attention from the boys wanting to see in his mouth he couldn't stop giggling. He has another loose tooth also on the bottom and it will probably be out in the next few days. I am so excited that I was able to see him loose his first tooth.
the only picture showing his missing tooth
sweet boy
Taevon lost his first tooth today. I noticed it was loose a few days ago when I was brushing his teeth. Today it was just hanging by a corner. By the time I got something to pull it out he pushed it out with his thumb. He was so excited about all the attention from the boys wanting to see in his mouth he couldn't stop giggling. He has another loose tooth also on the bottom and it will probably be out in the next few days. I am so excited that I was able to see him loose his first tooth.
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