It's hard to be a good blogger

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!

I really have nothing to post about lately!

Things have been so busy, in a great way, that I almost forgot I had a blog.  For a while this blog has been my place to vent about life, and what is going on with Austin.  Well I am happy to report, that I haven't had much to write about!

We are very close to the 5 month seizure FREE mark!  This is very exciting news.  There was a time I never thought they would end, but it looks like there could be a light at the end of the tunnel.

Both boys have been keeping us very busy.  Austin is almost running now, and has ever gained a whole pound!  Although we are still struggling with food, he is still very fond of his bottle of Pediasure and it seems to be doing the trick.

This week we start seeing a speech pathologist for food therapy, so hopefully he will start eating more soon.

Since life has been a little uneventful, we decided we would try to sell out house!  I guess I thrive on crazy, so I create my own crazy when things slow down!

It has been so warm this year already, that we have been spending most of our days outside, to keep the museum of a show home we live in now.

More to come later, this was just a quick update on nothing really eventful! But I will take uneventful any day!

Update....

We had a Neurologist appointment on Monday.  It went really well.  She was very impressed that Austin has not had a Seizure in 3 months.  She fairly happy with most of his progress, however, she would like to do a follow up MRI in the next few months if he is still behind.  

On Wednesday we had our follow-up pediatrician appointment.  Austin has gained 2% or 7 ounces in a month.  For him, this is a reason for celebration!  So he is now 18lbs 5 oz.  The doctor is happy about his progress, but would like to see him walking more.  So we are now set up for physical therapy sessions, coming soon.  We also had to do a complete blood work up, for Celiac, Iron, feritin levels, blood cell counts, thyroid etc.  Hopefully we will get the results in a few days.

The overall mood around her lately has been pretty good.  The boys are finally not sick, and are in fairly good moods.  Austin is even getting some molars and we are down to a BHS only every other day or so.  

......KNOCK ON WOOD...... I think Noah is finally getting passed the terrible 3s.  He has been so sweet and loving lately.  

He is growing up way to fast, I miss my baby!

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.

18 months and the "Terrible 3's"

Austin had his 18 month appointment, a little early, last Monday.  He won't actually be 18 months until Sunday, but I was desperate to find a new pediatrition.  I am pretty sure we found one for now.  The new doctor was recommended by a friend, thanks Ellen!  Everything went pretty well, the office is close, and we only had to wait about 5 minutes to see the doctor.  Which is a great improvement from the hour we had to wait at our last visit with the other pedi.  She asked tons of questions so I could get her up to speed on Austin's condition.

18 month stats:
weight: 17lb11oz < 3rd%
height: 30.75in 14th%
head: 18in 7th%

She was a little disappointed that he had lost around 7 ounces since his last appointment.  However, it could be a difference in scales, so we are scheduled to see her again in 6 weeks.  She wasn't too worried about him not walking yet, but will be if he doesn't improve soon.

Austin 18 months - He has such a cute little personality.  He knows how to say almost anything.  Off the top of my head he can say: Daddy, Mama, Noah, kitty, No, drink, more, please, choo-choo, Nanny, up, gweee (which is draw or color), tee-tee, bath, tractor.  He is can take 4-5 steps, but perfers to crawl because that is faster.  He will sit on the stairs and walk to us, when begged to but he will make you do the sad face for him first.  He is now down to one nap, but it is a good nap.  He still goes to bed rather early, around 7.  He loves to watch Elmo and Abby on my phone.  He is not really a morning person, and takes a while to wake up.  He LOVES baths, that will help any bad mood.  He also really loves his brother, although they are starting to fight.  He likes to wake Noah up every morning.  He is still getting used to eating food more often.  He is starting to take more bottles, which is good for his weight, but not good for breaking him of the bottle soon.  He is still having a few breath holding spells a week, but they are by far less frequent and less intense.  We have been seizure free since December 9th!!  His tubes also seem to be helping everything.  He loves to walk pushing his train around the house.  We just love him so much, I am excited to see him grow and learn more!

Terrible 3's
It is a good thing that you bond with your baby when they are an infant because the terrible 3's will kill you. And if anyone tells you any different they are lying to you.  Noah is defiant on everything.  Yesterday he told me to "kiss his butt" but thought it was funny.  I suppose it was something he learned at school, but it put me over the edge.  I had to call Adam for a rescue.  He also had the first born curse.  He expects to be constantly entertained!  He also loves screen time way to much.  So lately we are trying to limit the games on the Leapster, Iphone, and TV watching.  So he has been forced to be creative and play alone.  Which doesn't help the terrible 3's because he acts up to get my attention. I need to learn to breath and keep my cool better, so I do not give him the satisfaction of pushing me over the edge (easier said than done!)  On top of all the bad behavior lately, he has stopped napping.  Which will make his attitude way worse, and it makes for a really long day for both of us.  So again, luckily he was so darn cute as a baby, because lately he is pushing the limits.

Walking!!

The tubes must be working because Austin started taking steps when encouraged! He has been doing really well the last week. No major breath holding spells, even with a cold! Here is a short video.

We also got a new kitty from the DDFL. Her name is Tia. Noah loves her and she does well with the kids.  She isn't a big fan of our current cat Riley, so hopefully they will get along better soon.

Noah is so proud of our new kitty!

Her previous owners did not take care of her coat, she had to be shaved.  Of course it will grow.

TIA!

A cute cell pic from Costco, our boys are so cute!

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.

Time flies when we are having fun!

They boys have had a great week!  I can't believe we have gone the whole week without any major issues.

POOP WATCH!
Noah decided to eat a screw! Which is something that has been occupying some of my time this week.
This was our conversation while in the car:
Noah: "Mommy, I was hungry so I ate a screw!"
Me: "You did what?  Where did you get a screw?"
Noah: "I found it, but it's okay mommy it was a cute screw." which I hope means it was small
Me: "Noah, you cannot eat screws.  That will hurt your belly."
Noah: "It's okay mommy, I will eat lunch to cover it up."

I promise I feed him, I am not sure why he did this.  Curiosity I suppose, but I am sure it is not the last time. So I have already made a call to our phone nurse, even though we haven't seen the new Doctor. The said to make sure he didn't have any abdominal pain or bloody stools.  She predicted that it would pass in 3-4 days, to make sure to check each of his poops for the screws.  So, we have been on a poop watch since Monday.  He hasn't passed it yet, or maybe I missed it, or maybe he didn't really even eat a screw.  I am not sure, but it has been a funny topic around here.  Noah now knows not to eat screws, and if he does it again we will need to take him to the Doctor for "pokey shots"  which he hates.

Also on Tuesday, I took a good fall on the ice while taking Noah to school.  I fell forward while holding Austin, but luckily most of the impact was on my elbow and knee. Thankfully he didn't hit the ground, however, it must have really scared him because he was pretty upset but didn't have a BHS!  I was really embarrassed and needed help from a few of the other moms.  They thought I had broken my arm, but it was all just a funny misunderstanding that really hurt my pride.

I am happy to report that we have been BHS FREE since we left the hospital on Sunday.  That is almost 6 days!  I am so happy for him.  Yesterday, Austin decided to start walking around using his push toys, it is so adorable.  He has been such a happy boy this week who loves to talk!  Here is a video of him pushing his train around for the first time:

Today we took the boys to the pool, I think it was Austin's first time.  Noah is such a little fish.  He loves to dive down and get toys from the bottom of the pool.  He can't quite swim all the way on his own yet, but he is so comfortable int he water.  Austin was very memorized by all the action.  He just loves to people watch, and just chill with me in the hot tub. He is my kind of kid!

Today is Austin's last day of meds for C Diff.  I pray that he doesn't have  relapse, while it is unlikely, it could happen.

We have a few things coming up on the schedule.  We hope to meet our new pediatrician in a few weeks, hopefully not before :).  Austin has a follow up with ENT, a follow up with Neurology, and a sleep study in February.

While 2012 has already had a few hiccups, at least they are normal.  I have loved this new beginning for our family.  I hope this is a good indicator of what is to come.

On the search for a new Pediatrician....

When we decided on our pediatrician I was still pregnant with Noah. I didn't know anything about what I wanted in a Doctor for him. She seemed good, she was a mother of two boys, the practice was in our preferred hospital so it seemed good enough. Well now you can say I am more experienced. We had an appointment with her yesterday. I was pretty nervous about talking with her, but after I had to wait for an hour with 4 kids I had no issues with the confrontation. I let her know about my previous phone nurse experience and I asked her for recomendations. She has been a good Doctor but I need someone that is full time and a better practice. So the search is on. We have several interviews next week. The battle for my kids health never ends!

We ended 2011 with a bang!

Well our New Years was rather interesting.  My last post talked about Austin not feeling well, so against our pediatric phone nurses' advice I decided it was time to take Austin to urgent care.  He had had diarrhea since Monday, and now couldn't keep most liquids down.  When he woke up from his nap on Friday, he was lethargic, cranky, and just pitiful looking.    His poor little eyes were so sunken with black circles and you could start to see his rib bones.   Adam was on his way home from Moab, so my parents helped me get him to Children's Urgent Care.  Thankfully it wasn't busy at all and they were able to take us back immediately.  They took his stats, and he had lost 1.5 lbs in a week.  He was a sickly 16.5 lbs fully clothed, no fever, but very very dehydrated.  The amazing ER Doctor listened to my concerns and decided that he needed prolonged fluids immediately, so we were admitted to the hospital.  During our stay the Doctor also ordered various tests on him. The results showed that his bicarb and potassium levels were very low which is typical of long term diarrhea.  Within 30 minutes of being on the IV and nausea meds he started to perk up. They moved us over to our overnight room and he tried to sleep when he could but still being poked by various nurses.  By this time Adam was home, and had joined us at the hospital.  My parents left to take Noah to their house for a sleepover.  That night we were able to catch a stool sample which was sent off to the lab, but we wouldn't get that back for 24-48 hours.  The next day he was feeling much better, but still not eating or drinking much.  Around noon we got the lab tests back for his stool, and turns out he had contracted C Diff from the hospital the week before during tube surgery.  Evidently if a child is on prolonged antibiotics and comes into contact with C Diff, it will run ramp id in their intestines.  His poor body was poisoning him.  Once we figured out the cause they put him on a different antibiotic to clear the bad bacteria.  Within a few hours he was eating, drinking, and acting like a happy baby.  Thank god for Doctors that know what they are doing, and Children's hospital.  This can be a very serious condition if not caught in time, we were very lucky. That night, New Years Eve Adam, Austin and I shared a spaghetti dinner, and salad to celebrate.  Noah got to visit Aunt Dren and the cousins for a NYE party.  We didn't have much of a party, but is was still a good night.  I was able to breathe knowing that our baby would be okay.  They finally sent us home on Sunday, New Years Day.  Since getting home Austin can't get enough food.  The little guy is so hungry and happy.

Honestly, considering everything we have been through this was the scariest because I blamed myself.  If we just would have known that he needed to be on probiotics while on antibiotics, this whole thing could have been avoided.  The thing that I thought would cure him, antibiotics, are what caused this life threatening infection and taking him to get tubes is what helped him contract C Diff.  I am just very thankful for yet another miracle, and that our little happy boy is back with us again.  On the bright side I  thankful that he didn't have a seizure, it seems that part of what we are doing is actually helping him get better.  His tubes are also healing very nicely, which is a relief because we will not do any sort of antibiotics any time soon.

Lesson learned......put you and your children on a healthy dose of probiotics especially when they are antibiotics to avoid our situation.

The day we went to the hospital, his eyes were so gray. (cell pic)

 This is how he slept for most of our stay. (cell pic)

The day we were realeased he was doing much better:  (cell pics)