Where have we been?

Wow, it has been a few weeks since I last posted.  Where have we been?  We took a fun trip to San Diego to visit grandma and grandpa.  It was so nice to see the sun and sand for a few days.  The boys had so much fun, it was a good change of scenery.

Noah feeding the birds in San Diego Animal Park.

Before we left I decided it was finally time that I take care of myself and visit the doctor.  I decided to go to the gastrointestinal doctor.  Ever since I was in high school I have always had weird stomach issues.  After Noah was born I became randomly allergic to eggs, flax seed, and cantelope.  After speaking with the Dr he decided to do a blood panel to check for Celiac Disease.  I got the results while in CA.  The results came back negative for me having Celiac, but they did determine that I have a wheat and gluten intolerance.  Which is a much better diagnosis than I expected.  The good news?  I will not be more susceptible for Colon Cancer (which my grandmother had) but I still need to drastically change my diet.  The bad news?  I am a carrier of Celiac Disease.   I got it from someone in my family and I can pass it on my my children. Which means someone in my family has it undiagnosed.   One of the main indicators of Celiac in children is a diagnosis of failure to thrive, which is Austin.   So next week I have several Doctor appointments to get Austin tested.  Luckily this could answer a ton of our questions if he is positive. As much as I want those answers, I do not want for him to have Celiac.  A kid should be able to have pizza and cake at a birthday party.  So more to come on that.

We have been seizure free for 3 months!!  Not BHS free, but seizure free is the first step.  Austin is still having a BHS every few days.  He is very temperamental while teething, which seems to be the cause.  Pain is still the main trigger, but being tired and mad is the second trigger.

But we do have some good news!  Look who is walking!!

This is not his preferred mode of transportation, but at least it is a good start!  Go Austin!!

So next week we have a weight check, blood draw for both boys for Celiac screening, a sleep study, a follow up at the Neurologist, and a follow up at the gastrointestinal doctor for me.  I am hoping the doctor appointments will slow down at this.

2 months seizure free!

We haven't been incident free, I will get to that more later, but we have avoided a seizure at least.  Since the tube surgery, Austin has been feeling much better.  Two weeks ago a cold started going around the house.  It started with Noah, then Austin, now Adam.  Austin had his first post-op ear infection. It was so gross, it was oozing and bleeding out.  At least the tubes are doing their job, but I wasn't prepared for that.  We got some ear drops hoping it would cure the issue, however, he still was very cranky and having several BHS per day.  We had to return to the Dr a few days later to get a stronger antibiotic.  He seems to be doing MUCH better now, and the CDIFF symptoms have not returned.  Thank god.  He hasn't gained much weight lately, but given his condition it isn't surprising.  He is also getting like 8 teeth, which doesn't help.  We are also working on getting him to eat more food and less bottles.  Everything is a very slow process.  He still isn't walking yet, but likes to practice now and then for many bribes, like candy.

9 days BHS free until tonight :(

I was so excited to report, at our follow up ENT appointment today, that Austin has been BHS free since the hospital, 9 days. I must have jinxed myself because he had a pretty bad one tonight. We don't know what happened exactly, the boys were playing in the living room with Adam and he got very angry. It was heart breaking. I am happy with our current status of a happier boy, which makes a BHS so much harder to watch. I just hope that it was a fluke and not something bad starting under the surface.

Surgery....

Austin had his tube surgery on Friday morning.  The morning started pretty early, we had to be at the hospital by 7 for check in.  He wasn't able to have any solids or milk after midnight and no clear liquids after 6am.  We got some apple juice in him until we left for the hospital.  The procedure was performed at the Children's hospital Denver, south campus.  My parents drove me over, while Noah and Daddy went to a movie.  I felt pretty good, and so did Austin for the first hour of the morning.  Around 8am he started getting pretty cranky, asking for a bottle and pulling at his ears.  In the days leading up to the surgery we suspected that he was getting another ear infection because he was really cranky unless on ear drops and Motrin.  While he was playing in the hospital crib he jumped and hit is chin on the side of the crib.  This triggered a pretty bad BHS.

This is him in his little surgery outfit.

We had what seemed like 10 people come in the room asking all kinds of questions about his condition.  They wanted to know what his seizure history has been, what kind of BHSs he has on a regular basis, they weighed him, measured him, etc.  He wasn't very thrilled and I was ready to get the show started.  Once we were all ready the Dr came to check in with us.  Since his normal Dr was not available today, we used the on call Dr that day which was Dr Friedman.  I hadn't met him, but he seemed nice enough.  He wasn't convinced that this surgery would help his condition, but could see the urgent need for it.  The nurse said that he had lots of fluid in his ears, so they would clean that out during surgery.  At 8:50 I was dressed in my not so cute outfit and I carried him to the OR.  They decided not to take out his adenoids, so he was just on general anesthesia.  They asked me to lay him down on the table.  When I put him down he was very angry and started to have a BHS.  At 8:59 they put the mask on his face, which caused him to go into a full BHS.  It was hard to see him struggling, when he finally took a breath in the anesthesia made his body convulse which I was sure was the start of a seizure.  They reassured me that this was normal and escorted me out of the room.  I went to change out of my outfit.  By the time I got back to the lobby I had time to call Adam, cry a little and then it was 9:08, and the DR was looking for me, to tell me that he was done!  The surgery went well although he was already on his way to another infection. The picture above are of the tubes they put in each ear. I was able to walk back to see him immediately, he was already awake drinking some water.  When he saw me he was very angry.  The nurse decided it was time for some Tylenol.  Once that kicked in, he was his happy little self.  We were on our way home by 10:00am, and that was it.  He had been a completely different baby ever since.  There are so many daily decisions we make as parents, I can say the decisions to give him surgery is the best one we have ever made.  He is now happy, he will play by himself, and acts like a normal happy child.  We received the best gift for Christmas, our happy baby boy.  I love seeing him grow, and explore his world on his own.  Now that we can actually put him down he loves to play, and he is so animated.  He has such a cute personality.  We have been BHS free since Friday, and you can tell that this is a new beginning for us as a family.  We are so much more relaxed and happy.  Lets hope we keep this good track record, and our little boy will flourish in his new environment.  All I want for him is health and happiness, I just love him so much.

Snow Day!

We got around 12 inches of snow today.  It is going to be a white Christmas.  We took Noah out sledding today, it was really fun.  We also spent most of the day making treats for our friends and neighbors.  My goal is to teach Noah that Christmas is about giving, not just getting gifts.  He loved it.

A few days ago we made our first gingerbread house, it was a train!  Really fun! 

Thank the heavens that surgery is tomorrow.  We think Austin is getting another ear infection.  He had a pretty bad BHS today, but felt much better after ear drops.  I am a little nervous and excited for him, I hope this will help him feel better.  I love the little boy he has become when he is well, he is so sweet.

Do his ears still hurt?

On Friday Austin had an awesome morning. He played by himself most of the morning which is a miracle. He took a great mid day nap, but then he woke from his nap very cranky. I tried Motrin and that seemed to help. The kids got home from school around 4. Abby and Austin were playing happily when Abby grabbed Austin's legs, a game he loves to play. His chin seemed to hit the floor, which put him into a full bad breath holding spell. He finally woke up still screaming. He was pulling at his ears so we decided to try ear drops even though he has been on meds for 7 days. Within 5 minutes he was happily playing again. I don't know what was bothering him if there isn't fluid or an infection, but at least the drops work. We still haven't gotten a call from the scheduler so I don't know when we will have the tubes surgery. I did cheat and leave 2 messages for her on Friday. If I don't hear from her on Monday I am tempted to go to the hospital and just start screaming "someone please fix my child!" tomorrow is our last day of meds, we will become a ticking time bomb at that point because it's not a question of if but of when. I just hope it's not on Christmas. Until Friday we had been BHS free for 5 days. Now the count is back down to 2.

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!

Life.....

Some days I worry so much that my stomach hurts, and some days I feel hopeful that I finally have things figured out as a mom.  Today is one of those days my stomach hurts.  Austin had a pretty bad breath holding spell this morning.  I am not sure what triggered it exactly.  Maybe it was waking up at 5:15am, maybe it was pain induced as he was crawling into the kitchen.  What I do know is I do not want to see my baby suffer this way anymore.  Luckily he was able to go back to sleep at 7:00am for a much needed nap.  We have big plans to go on a family vacation tomorrow to Pagosa Springs with Adam's family.  This will be a 5-7 hour drive, and once we get there the boys could be overtired and off on their sleep patterns.  Do we go because we want to and take the chance of having crabby boys, or do we bail because life is such a delicate balance everyday.  I found myself researching if there was a hospital near the condo, hoping that would help my decision.  There is one right down the street, but yet I still feel nervous.  Perhaps these are nerves of our first road trip with the boys and I am afraid it will frazzle us too much, or maybe I am nervous about setting Austin up for more episodes with his lack of sleep.  Noah deserves to go, Noah deserves to keep his life as normal as possible.  I just don't know what to do.

BHS at the Grocery store :(

Austin had a real BHS at the grocery store this morning.  He was sitting in the cart, pretty happy, although he wanted for me to hold him.  I kept telling him no, we are almost done.  All of a sudden he became pretty angry, so I picked him up hoping he would get himself out of a BHS.  He proceeded into a full spell.  I had to hold him on his side, like a baby.  I wanted to hide his face so on looking shoppers couldn't see his blue face.  He held his breath long enough to arch his back and kick his legs.  He then passed out.  When he woke up, he was pretty out of it and still upset.  He then threw up all over the front of my shirt. On the way to the store he had slammed a bottle in the car, so I think he had a little stomach pain, upset or gas, which is what set off the sudden spell.  It seems that they have a trend of always being followed by pain, whether it is his ears, stomach, or some sort of inflicted pain.  We had to leave immediately, luckily we were almost done.  He had another spell at the grocery store last week, but someone was watching and the lady came over very freaked out.  She wanted to call 911, which I can understand her concern.  A baby turning blue, can be disturbing.  Luckily I convinced her to wait it out and that he would be okay.  It looks like I will be making my future trips to the store alone!

Austin was so fussy after his nap today that I decided to take him in to get his ears double checked. I thought maybe an infection because when I gave him some ear numbing drops his mood greatly improved. He even wanted to eat! The Dr said that there was not an infection, however, his ears were a little concave, which can cause pressure. So we are still on track to see ENT on the 15th. He weighed, 18lbs 2oz. A 2% increase from last week!

Tomorrow is the Echo Cardiogram and the Cardiologist.  It will be nice to get that appointment out of the way.

Fun family days & a real BHS

Noah had such a great time in the snow today.  He and Daddy used the snow blower anywhere they could, going up and down the street shoveling our neighbor's driveways.  He jumped, rolled, and ran in the snow.  It is amazing how just a little snow can make a little boy so happy!  We expect to get 6-8 more inches tomorrow!

Austin had his first real breath holding spell today that was initiated by pain.  He was trying to crawl away while getting his diaper changed and his leg skin was caught in the zipper.  He held his breath, breathed out, and turned blue.  He passed out and was upset when he woke up.  Other than this spell, his mood has been very good.  He is very playful and his eating is still doing pretty well.  We are still treating with Iron therapy, however, this was his last day of antibiotics.

We went to the mall today and got Austin's first real pair of shoes!  They are pretty cute, Robeez Mini shoes. Now all we need is a walker!  The boys did great at the mall, they got to ride the train, jump in the bouncy house, and run crazy.  It was nice to get out on the snowy day.  Noah even got to see Santa!  Santa sent him this awesome video when we got home:

Message from Santa

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!