I wish I spent more time on here keeping up with where we are in life. I really want to keep a good track of how the boys are growing, but I can't seem to find the time to write about life, well because of life.
Alas my new year's resolution will once again be to blog more and to document more things in our lives. Considering this has mainly been about Austin's medical issues, I will put a few things in this post that have happened lately.
Yesterday marks 1 year SEIZURE FREE! I can't believe it has been a whole year, it seems like a lifetime ago but I still remember every scary detail. While we are still not out of the woods with medical mysteries, I will take this milestone.
Over the past year the doctors are still rather worried about his lack of weight gain. He is still very low on the charts for weight and only 25% for height. Considering Adam is so tall, and Noah is the size of a 7 year old this is worrisome. Over the past 6 months we have seen various doctors, checked for allergies, and have seen a food therapist weekly and they can't find one thing wrong with him. I suppose this is good news, but I just wish we could find something that we can easily fix and move on with our life. We have decided to perform one more test, and Endoscopy to rule out anything that might be going wrong, before we can finally decide that this is just Austin and he is small. They will also check in more detail for Celiac Disease. So, I promise to post more on that after the 17th. For the most part BHS have been mild to non existent, but we still have one at least once per week.
We moved!
Which is another reason I haven't blogged in forever. We left our amazing first home in July. We sold it after only 30 days on the market. We were very excited to move into another more amazing home.
San Diego
A few weeks ago we took a really fun trip to SD to see the grandparents. Only to miss the arrival of our new nephew Hillis! I love having a new baby in the family, and Austin does too! He LOVES to hold him.
Kindergarten
The search for a good kindergarten for Noah has began. The process of open enrollment is very tricky. While our local school is good enough, it is very over crowded because of open enrollment. Don't get me wrong I love having the choice of where to send the boys for school, but because of this the local parents do not have to send their kids to the new school that was just built to compensate for over crowding because their siblings already go to the school that is in our neighborhood. Colorado also has many charter schools, so that is where our search began. We have toured 6 schools in the last few weeks 4 are charters, 2 are public.
One that really stuck out the most was Flagstaff Academy in Longmont, this became our school of choice. We plan to apply for all 6 schools to hopefully get accepted to at least 3. Most of the schools do a lottery, but Flagstaff is a first come first serve school. The registration began on December 1 at 8am. The night before Adam decided to drive by the school because we heard a rumor of parents camping out. He went by after work to find at least 20 parents already waiting in line with their tents. That is when he called me for supplies to stay the night. I packed dinner, sleeping bags, coffee, snacks, and a little booze. He then proceeded to sit in line for 15 hours so he could be 22 in line and 13 in line for Kindergarten. We will not find out if we have secured a spot until February but our chances are pretty good, well better than most. Adam said that around 4 am there was at least 200 more people behind him, so I have to hope that we have a better chance than they do. So I am very thankful Adam stayed the night even though I was a little annoyed that this is how we have to get our kid into a good school.
Until next time, I hope to update again soon!
Showing posts with label Seizure. Show all posts
Showing posts with label Seizure. Show all posts
December 9, 2012
December 9, 2011
A mother's insticts are always right
I knew it, my previous post from this morning was correct. I knew something in my gut was warning me that he was getting worse. As I feared, Austin had his 3rd seizure today.
5:15am - We hear Austin stirring for the day, this is his usual wake up time. Adam and I debate who's day it was to get up with him. Adam finally got up with him because I was still so sleepy from not sleeping well the night before. Unfortunately my mind was going 100 miles per hour, so I wasn't able to go back to sleep. I joined him and Austin downstairs for some coffee. His mood seemed to be a little off and clingy, he needed all of daddy's attention.
7:00am - Austin had a bad breath holding spell. He was climbing up the stairs in the kitchen and we heard a small thump. I am not sure if it was him, or the ball he was playing with. We laid him down on his side, to continue to episode. This was a really bad one, I was really nervous. He had a typical BHS and became very sleepy. I decided to put him down for a nap to hopefully help his mood. The kids came over, but Austin was still asleep. I had the next door neighbor take the older kids to school.
8:45am - Austin wakes from his nap, in a pretty good mood but very testy. I decided to keep this kids upstairs to try and pack for the trip, still not sure if we were still going. At this point Austin had had only 4-6ounces of formula and he really didn't want to eat.
9:15am - We were in Noah's room, the boys are happily playing and Austin starts to have another breath holding spell. I am not sure what set this one off either, so I lay him down on his side to assume the normal position.
9:18am - Seizure. I pick him up after the BHS to comfort him and notice that he is starting to seize. I take him downstairs because that is where we keep the Diastat. Instructions say to wait 3 minutes before giving the Diastat. I think this is how long I waited, but the next few minutes are a little confusing.
9:20am - At this point I am trying to juggle a seizing baby, recording his siezure, calling my husband, getting ready to give the Diastat, call 911, and get my toddler out of the room and dressed.
9:21am - I call Adam while giving the Diastat, I was trying to keep my cool but at this point I was starting to get a little frazzled.
9:21am - Call 911. I quickly figure out that while I am on the phone with 911 I should still be videoing his episode for the Dr. So I go to find my camera, luckily it was out for the trip.
While all of this is going on I am trying to convince Noah to go and get dressed. Noah likes to run around in his underwear, but I couldn't have him running out to see the firetruck naked! So I am still trying to calm Austin, record the event, talk to 911, and get Noah dressed.
9:25am - I call Adam again, the seizure had started to subside. I also call my mom to come help with Noah (who still needs to get dressed!)
9:27am - The paramedics arrive and my next door neighbor. Mandy (the neighbor) takes Noah out of the room. At this point he was still ticking but the seizure was over. They took his stats, all normal but he was completely out of it. They took his sugar which was pretty low (60).
10:00am - We decide to take him to the South campus Children's hospital. This isn't normal protocol but they decided it was worth it. I told them that if they didn't take him there, I would drive him there myself. I get my stuff gather, and we take off non emergent.
They let me ride in the back with him, strapped down to the gurney I am holding him. The drive is around 30minutes. We get into a room right away. The poor little guy was pooped, so he fell asleep on me for a while. We repeat our story to several different people, before seeing the Dr. The Dr then gets the story and watches the many videos I had taken of his episodes.
My guess was an ear infection, considering his mood and everything that had been going on this week, but no fever.
She checks his right ear, but it has too much ear wax in the way, she needs to clean it. This really pissed him off, poor baby. Then my suspicions were right, he has a very bad ear infection in the right ear. She didn't even bother to check the other ear. They decide to change his meds to a stronger antibiotic, refill our Diastat and give us more numbing ear drops (a life saver drug).
We leave to get something to eat, after a good nap at the ER, Austin is his happy sweet loving self. He is dancing, eating, singing, and ready to go!
So here I am, feeling better than I listened to my gut. I knew something was off and I knew it was his ears. I knew this since Monday. It just needed to get bad enough for someone to listen to me. Sometimes I feel like I am the one with the medical degree, I just need a prescription pad. Lesson learned.
Hopefully we will have a very happy boy for the next 10 days and we can get some real answers from ENT next week!
This is a happy baby.
We have decided that it is now safe to leave for Pagosa tomorrow. I have all the nearest hospitals on the route mapped, now we just need to relax and have a little fun. The case of wine I just bought will ensure that ;)
What a crazy day!
5:15am - We hear Austin stirring for the day, this is his usual wake up time. Adam and I debate who's day it was to get up with him. Adam finally got up with him because I was still so sleepy from not sleeping well the night before. Unfortunately my mind was going 100 miles per hour, so I wasn't able to go back to sleep. I joined him and Austin downstairs for some coffee. His mood seemed to be a little off and clingy, he needed all of daddy's attention.
7:00am - Austin had a bad breath holding spell. He was climbing up the stairs in the kitchen and we heard a small thump. I am not sure if it was him, or the ball he was playing with. We laid him down on his side, to continue to episode. This was a really bad one, I was really nervous. He had a typical BHS and became very sleepy. I decided to put him down for a nap to hopefully help his mood. The kids came over, but Austin was still asleep. I had the next door neighbor take the older kids to school.
8:45am - Austin wakes from his nap, in a pretty good mood but very testy. I decided to keep this kids upstairs to try and pack for the trip, still not sure if we were still going. At this point Austin had had only 4-6ounces of formula and he really didn't want to eat.
9:15am - We were in Noah's room, the boys are happily playing and Austin starts to have another breath holding spell. I am not sure what set this one off either, so I lay him down on his side to assume the normal position.
9:18am - Seizure. I pick him up after the BHS to comfort him and notice that he is starting to seize. I take him downstairs because that is where we keep the Diastat. Instructions say to wait 3 minutes before giving the Diastat. I think this is how long I waited, but the next few minutes are a little confusing.
9:20am - At this point I am trying to juggle a seizing baby, recording his siezure, calling my husband, getting ready to give the Diastat, call 911, and get my toddler out of the room and dressed.
9:21am - I call Adam while giving the Diastat, I was trying to keep my cool but at this point I was starting to get a little frazzled.
9:21am - Call 911. I quickly figure out that while I am on the phone with 911 I should still be videoing his episode for the Dr. So I go to find my camera, luckily it was out for the trip.
While all of this is going on I am trying to convince Noah to go and get dressed. Noah likes to run around in his underwear, but I couldn't have him running out to see the firetruck naked! So I am still trying to calm Austin, record the event, talk to 911, and get Noah dressed.
9:25am - I call Adam again, the seizure had started to subside. I also call my mom to come help with Noah (who still needs to get dressed!)
9:27am - The paramedics arrive and my next door neighbor. Mandy (the neighbor) takes Noah out of the room. At this point he was still ticking but the seizure was over. They took his stats, all normal but he was completely out of it. They took his sugar which was pretty low (60).
10:00am - We decide to take him to the South campus Children's hospital. This isn't normal protocol but they decided it was worth it. I told them that if they didn't take him there, I would drive him there myself. I get my stuff gather, and we take off non emergent.
They let me ride in the back with him, strapped down to the gurney I am holding him. The drive is around 30minutes. We get into a room right away. The poor little guy was pooped, so he fell asleep on me for a while. We repeat our story to several different people, before seeing the Dr. The Dr then gets the story and watches the many videos I had taken of his episodes.
My guess was an ear infection, considering his mood and everything that had been going on this week, but no fever.
She checks his right ear, but it has too much ear wax in the way, she needs to clean it. This really pissed him off, poor baby. Then my suspicions were right, he has a very bad ear infection in the right ear. She didn't even bother to check the other ear. They decide to change his meds to a stronger antibiotic, refill our Diastat and give us more numbing ear drops (a life saver drug).
We leave to get something to eat, after a good nap at the ER, Austin is his happy sweet loving self. He is dancing, eating, singing, and ready to go!
So here I am, feeling better than I listened to my gut. I knew something was off and I knew it was his ears. I knew this since Monday. It just needed to get bad enough for someone to listen to me. Sometimes I feel like I am the one with the medical degree, I just need a prescription pad. Lesson learned.
Hopefully we will have a very happy boy for the next 10 days and we can get some real answers from ENT next week!
This is a happy baby.
We have decided that it is now safe to leave for Pagosa tomorrow. I have all the nearest hospitals on the route mapped, now we just need to relax and have a little fun. The case of wine I just bought will ensure that ;)
What a crazy day!
November 30, 2011
What we have been doing lately and updates on Austin
So what has been going on with us? Well it has been 3 years since my last blog post! But I promise to be a better blogger! Since it has been so long I have remodeled the place with a new design and some new pages. Go check out the older posts of Noah, how cute is he!!
I first started this blog as a new parent, so excited about the joys of parenthood. It was easy to update with only one newborn, then Noah became a toddler, we had another baby and I lost the free time I once had to blog. With new adventures ahead, I hope to now use this blog to keep our friends and family up to date on what is going on in our life. I also hope to reach any parents that are suffering from Breath Holding Spells or Relex Anoxic Seizures because there is not a lot of information out there. If you want to know what has been going on in the last few years, see the About Us tab. To get an overview of the last few years with Austin, see the Living with BHS & RAS tab. Below was our last few weeks, we were busy!
November 10th-19th, 2011- We were on our amazing sailing vacation. The grandmas were watching the boys for us. Thank you Grandma and Nanny! There will be a seperate post about our vacation, because it deserves it. While we were gone Austin had a few breath holding spells that seemed to be getting progressively worse than the one before. The boys both did very well with Grandma and Nanny, although I think Grandma and Nanny were tired! :)
November 19th-22st, 2011 - We were trying to get life back to normal after our vacation, but so glad to be home. I really really missed my babies. Noah and Austin were suffering from mild seperation anxiety, which I was okay with, a few extra snuggles wasn't so bad. Howerver, this is when I started to video diary Austin's episodes. They seemed to be getting worse. Each episode seemed to be set off by some sort of anger or small injury. He will breath out, and never breath back in. He will lay on his side with his back arched, legs kicking, and hands turned inwards. His lips and fingers would turn very blue. This would last for 30 or so seconds. He would then pass out completely, almost snoring for another minute or so. Some episodes were worse than others, but they were more frequent.
November 23rd, 2011 7:04am - 2nd Reflex Anoxic Seizure. Adam was upstairs with Austin in Noah's room. I was down stairs trying to brine the turkey for Thanksgiving. Adam started yelling down to me to come immediately. Austin was trying to get on Noah's bed. Adam stopped him to fix his jammies, and he went into a BHS. Adam laid him on Noah's bed on his side to get through the spell. He had a typical BHS, but then started to seize. This is when Adam started to call for me. As I entered, he was on his side, very pale, and seizing. I called 911, then my mom. My mom beat the ambulance here, Noah and I went outside to see the ambulance arrive and to get him out of the room. Austin's seizure was 2 minutes long and was over by the time the ambulance arrived. They checked his vitals and they all seemed normal. We decided to not take him by ambulance to the ER, instead that we would take him over to the Children's Hospital Urgent Care, just a mile away. They were able to see us immediately. At triage, they checked his stats again, and all were normal. We told the doctor about the episode, she examined him and found an ear infection. Again something else viral that could have helped trigger the seizure. She then called Neurology to see if there was anything else that she needed to do. They released us, only to tell us again that this is NORMAL and that he will grow out of it. I was shaken and furious. We received a prescription for Diastat and Amoxicilion for the ear infection. I spent the rest of the day trying to locate some Diastat, an emergency medicine needed to stop a seizure over 3-5 minutes, because now we need to have it at home. With no luck, we had to order it for Friday after Thanksgiving. The day before a holiday is not a good day to go to a pharmacy.
I called his predication after we get home, she of course was out of town. Great timing, the attending physician recommended that I wait until the next week, that the matter didn't seem urgent enough to make a any decisions that day (and I am sure he had a big Thanksgiving planned, I would have hated to ruin that ;))So I decided to call Neurology at Children's Hospital without a referral. I explained my story and they were able to get me in on the following Monday.
November 28th, 2011- Neurology appointment at Children's Hospital. They take his weight and blood pressure. He was 17lbs 13 oz.. up almost 6 ounces from the Wednesday before! His blood pressure was a little high, so we will need to follow-up with Cardiology again. She undresses him down to a diaper, and watches him play. She interacts with him, while taking notes. She watches my videos of his episodes and reads my notes. Diagnosis- He is mentally normal and seems to be progressing very well in every area except for growth and walking. She isn't too worried about his lack of walking yet but we will need to re-evaluate that in 3 months. She doesn't know exactly what is growing on with him, but she does now that the severity of his spells and seizures is NOT NORMAL! Finally, what I needed to hear. She doesn't want to jump directly into drug therapy, and neither do we. We are starting off with Iron supplementation therapy. This has been documented to help reduce the severity and frequency of breath holding spells. Since he has Reflex Anoxic Seizures, which are triggered by a reflex and definitely more probable with a virus, if we remove the reflex (which for him is BHS) we should see a decrease in the seizures. The next step is to have an Echo Cardiogram performed. She wants to double check and make sure his heart is 100% functional, given his growth issues. Then in 3 months we will do a full brain MRI to check the brain stem for any defects. We will also follow up with Neurology in 3 months with our progress. I was pleased that we were able to see a Doctor that knows what the hell is going on, and is making a plan. My type A personality needed this!
November 29th, 2011 - Appointment with his pediatrician. On the morning of his pediatrician appointment, he is a normal happy baby and a hungry one! I couldn't give him enough food. On top of his good mood, he also did not have one breath holding spell! NOT ONE! He was even clocked in the head with a ball from his brother and recovered like a normal crying baby! This got me thinking, is the ear infection finally clearing up? All this time, has he been suffering from chronic fluid of the ears? Is this why he doesn't want to eat, pockets food, and might explain his not walking? This triggered a conversation with his doctor. She agrees with my assumptions, so we might as well see Ear Nose and Throat for possible tubes. Yes it is a procedure, but at least it is not drugs, and he might be happier.
FINALLY in the last few days I have my happy and somewhat healthy baby boy back. I hope we get to see him a lot more soon. We have had ZERO breath holding spells today, which for me is a big big celebration!
So our next steps are an appointment with ENT on December 15h. Continue the Iron therapy and schedule an Echo Cardiogram in the near future. Stay tuned for more!
I first started this blog as a new parent, so excited about the joys of parenthood. It was easy to update with only one newborn, then Noah became a toddler, we had another baby and I lost the free time I once had to blog. With new adventures ahead, I hope to now use this blog to keep our friends and family up to date on what is going on in our life. I also hope to reach any parents that are suffering from Breath Holding Spells or Relex Anoxic Seizures because there is not a lot of information out there. If you want to know what has been going on in the last few years, see the About Us tab. To get an overview of the last few years with Austin, see the Living with BHS & RAS tab. Below was our last few weeks, we were busy!
November 10th-19th, 2011- We were on our amazing sailing vacation. The grandmas were watching the boys for us. Thank you Grandma and Nanny! There will be a seperate post about our vacation, because it deserves it. While we were gone Austin had a few breath holding spells that seemed to be getting progressively worse than the one before. The boys both did very well with Grandma and Nanny, although I think Grandma and Nanny were tired! :)
November 19th-22st, 2011 - We were trying to get life back to normal after our vacation, but so glad to be home. I really really missed my babies. Noah and Austin were suffering from mild seperation anxiety, which I was okay with, a few extra snuggles wasn't so bad. Howerver, this is when I started to video diary Austin's episodes. They seemed to be getting worse. Each episode seemed to be set off by some sort of anger or small injury. He will breath out, and never breath back in. He will lay on his side with his back arched, legs kicking, and hands turned inwards. His lips and fingers would turn very blue. This would last for 30 or so seconds. He would then pass out completely, almost snoring for another minute or so. Some episodes were worse than others, but they were more frequent.
November 23rd, 2011 7:04am - 2nd Reflex Anoxic Seizure. Adam was upstairs with Austin in Noah's room. I was down stairs trying to brine the turkey for Thanksgiving. Adam started yelling down to me to come immediately. Austin was trying to get on Noah's bed. Adam stopped him to fix his jammies, and he went into a BHS. Adam laid him on Noah's bed on his side to get through the spell. He had a typical BHS, but then started to seize. This is when Adam started to call for me. As I entered, he was on his side, very pale, and seizing. I called 911, then my mom. My mom beat the ambulance here, Noah and I went outside to see the ambulance arrive and to get him out of the room. Austin's seizure was 2 minutes long and was over by the time the ambulance arrived. They checked his vitals and they all seemed normal. We decided to not take him by ambulance to the ER, instead that we would take him over to the Children's Hospital Urgent Care, just a mile away. They were able to see us immediately. At triage, they checked his stats again, and all were normal. We told the doctor about the episode, she examined him and found an ear infection. Again something else viral that could have helped trigger the seizure. She then called Neurology to see if there was anything else that she needed to do. They released us, only to tell us again that this is NORMAL and that he will grow out of it. I was shaken and furious. We received a prescription for Diastat and Amoxicilion for the ear infection. I spent the rest of the day trying to locate some Diastat, an emergency medicine needed to stop a seizure over 3-5 minutes, because now we need to have it at home. With no luck, we had to order it for Friday after Thanksgiving. The day before a holiday is not a good day to go to a pharmacy.
I called his predication after we get home, she of course was out of town. Great timing, the attending physician recommended that I wait until the next week, that the matter didn't seem urgent enough to make a any decisions that day (and I am sure he had a big Thanksgiving planned, I would have hated to ruin that ;))So I decided to call Neurology at Children's Hospital without a referral. I explained my story and they were able to get me in on the following Monday.
November 28th, 2011- Neurology appointment at Children's Hospital. They take his weight and blood pressure. He was 17lbs 13 oz.. up almost 6 ounces from the Wednesday before! His blood pressure was a little high, so we will need to follow-up with Cardiology again. She undresses him down to a diaper, and watches him play. She interacts with him, while taking notes. She watches my videos of his episodes and reads my notes. Diagnosis- He is mentally normal and seems to be progressing very well in every area except for growth and walking. She isn't too worried about his lack of walking yet but we will need to re-evaluate that in 3 months. She doesn't know exactly what is growing on with him, but she does now that the severity of his spells and seizures is NOT NORMAL! Finally, what I needed to hear. She doesn't want to jump directly into drug therapy, and neither do we. We are starting off with Iron supplementation therapy. This has been documented to help reduce the severity and frequency of breath holding spells. Since he has Reflex Anoxic Seizures, which are triggered by a reflex and definitely more probable with a virus, if we remove the reflex (which for him is BHS) we should see a decrease in the seizures. The next step is to have an Echo Cardiogram performed. She wants to double check and make sure his heart is 100% functional, given his growth issues. Then in 3 months we will do a full brain MRI to check the brain stem for any defects. We will also follow up with Neurology in 3 months with our progress. I was pleased that we were able to see a Doctor that knows what the hell is going on, and is making a plan. My type A personality needed this!
November 29th, 2011 - Appointment with his pediatrician. On the morning of his pediatrician appointment, he is a normal happy baby and a hungry one! I couldn't give him enough food. On top of his good mood, he also did not have one breath holding spell! NOT ONE! He was even clocked in the head with a ball from his brother and recovered like a normal crying baby! This got me thinking, is the ear infection finally clearing up? All this time, has he been suffering from chronic fluid of the ears? Is this why he doesn't want to eat, pockets food, and might explain his not walking? This triggered a conversation with his doctor. She agrees with my assumptions, so we might as well see Ear Nose and Throat for possible tubes. Yes it is a procedure, but at least it is not drugs, and he might be happier.
FINALLY in the last few days I have my happy and somewhat healthy baby boy back. I hope we get to see him a lot more soon. We have had ZERO breath holding spells today, which for me is a big big celebration!
So our next steps are an appointment with ENT on December 15h. Continue the Iron therapy and schedule an Echo Cardiogram in the near future. Stay tuned for more!
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