9.25.2013

aware

September is Hydrocephalus Awareness month.  I guess I almost dropped the ball on this one, but since it's still September you have to give me a pass on this one.  It's so fitting that A&R were born in September, isn't it?  Last year I guest blogged in honor of Hydrocephalus Awareness.  You can read that post here

I'd also like to post a few quick facts about this condition that has so greatly impacted our lives.  

Hydrocephalus comes in many forms.  It can be congenital or acquired.  It can be found in babies and adults.  As a matter of fact, it is often misdiagnosed as dementia or Alzheimer's. 

Shunts are not a cure.  They are just a way to control the flow of cerebrospinal fluid. 

50% of shunts fail within the first two years after placement.  Aiden is on his second shunt.  Ryan is on his third.  

It is brain surgery.  The placement of a shunt is a high risk surgery.  But it is something that is necessary for the survival of those who are affected by Hydrocephalus.

This website is a great resource for anyone who wants to know more about Hydrocephalus.  

Again, and as always, that you for supporting us, following our story, and letting us know you're there. 

24

I know, I know.  I already posted about the boys' birthday yesterday.  But, like I've said before, I'm going to stop the "monthday" posts at age 2.  So let me just have my cake and eat it too.  



At two years old, we can barely keep up with Aiden & Ryan.  Let's just say that things are hectic and our house is usually in a state of turmoil, but life is so much fun.  Here's a quick summary of what we're up to:


Therapy:  Aiden & Ryan still receive daily therapy at home.  We have PT, OT, ST and a special education teacher.  That all will change in a couple of weeks when we send them to a center for 6 hours a week of therapy.  As a result we lose our special education teacher because the center will provide those services for us.  

Medical appointments:  Are becoming fewer and father between.  On top of their pediatrician, we still see their neurosurgeon, Aiden's plastic surgeon (both once a year now!), Ryan's eye doctor, Aiden's ENT & audiologist...and I think that's it.  We stopped going to the high risk clinic, which was a program that we were involved in since discharge from the NICU.  We decided that they can't tell us anything we don't already know, or that our therapists and own physicians can't tell us, so we closed that chapter of A&R's life.  

Gross motor:  Aiden is walking, running and climbing.  He is a walking time bomb.  Rarely sits still.  His current favorite activity is jumping on the couch.  Ryan is officially mobile.  He gets around by rolling, stretching and scooting on his bottom.  He has attempted army crawling, so we are working on that.  We are also doing a lot of standing exercises to help strengthen his legs, and he has started to get the concept of walking.  When holding on to our hands he will put one foot in front of the other, rather that trying to jump and moving both feet at once.  

Speech:  Both boys are talking up a storm.  Aiden has caught up to his actual age in this area, and is even showing some 3 year old skills.  He can recite and identify all the letters of the alphabet.  He can count to 20.  He had tons and tons of words, well over 50.  And he is even using two word phrases.  He understands everything and seems to have a photographic memory.  Ryan is not too far behind, scoring at around an 18 month level for speech.  He repeats everything we say, can identify a lot of animals and tell us what sound they make.  He can count to 10 and knows many letters of the alphabet.  He also has around 50 words.  

Eating:  The boys eat absolutely everything.  Their current favorites are eggs, pizza, muffins, cereal, fig newtons and z bars.  I've recently switched Ryan to almond milk hoping it will help him sleep better at night (make him less gassy).  Hasn't really done much, but his appetite has greatly improved.  I'm thinking of making the switch for Aiden too.

Sleep:  The boys are officially down to one nap.  Aiden still sleeps through the night.  Ryan is still a struggle.  He no longer wakes for 2-3 hours each night, but he will not sleep in his crib and he still needs help getting to sleep.  We are thinking of converting his crib to a toddler bed to see if that helps.  

Favorite things:  Thomas & Friends, Super Why, playing with our phones/iPads, balls, cars & trains, their new pet cat, pretending to talk on the phone, mommy & daddy, saying cheese for the camera. 

Happy birthday, boys!  You have made me a proud momma.  In your two short and very fast years, you've taught me about strength, courage, hope and a love so deep that I never knew existed.  I'll love you forever, for always, to the moon and back.  Keep on, keepin' on.



9.24.2013

two

For real?  This can't be.  My kids are going to be two tomorrow.  My kids are TWO!!

Two is a funny number in the preemie world.  Two is when they say your kids will catch up.  Two is when you leave prematurity behind you and you start living a normal life.  

Only for us this isn't the case.  And that's perfectly okay.  Because we've been living a normal life for quite a while now. 

I've spent the last 24 months of my and my children's lives sorting through and getting comfortable with myself, my environment and the people around me.  I've spent this time researching diagnoses and learning about therapy.  We've spent this time working with our kids, ensuring they get what they need to be where they should be developmentally.  We've fought hard, and they have too.  

Today we are at an interesting place.  Have they caught up?  In some areas, yes.  In some, no.  For us, and for a lot of families, prematurity isn't something we will ever say goodbye too.  And although I am not hurt or upset by it, I feel as though our physicians should not have used that phrase with us: "They will catch up by two".  It's not something I'll hold a grudge over.  Just something I needed to put out there.  Just in case someone is reading.

The other day, a woman asked me if Ryan will ever be okay.  This exact moment, and others like it, are where I exercise my ability to react properly to those around me.  Who knew, that a simple word such as "okay" would cause my blood to boil.  Rather than biting her head off, I simply answered that he is okay.  He is fantastic, as a matter of fact.  You see, Ryan may not walk, but he sure is mobile and independent.  He is happy and does not need our pity.  Even though walking is on our radar, and our therapy revolves around it, life would still go on if Ryan never walked.  Ryan will still be Ryan, and we will still love him like no other.  He will grow and learn, and flourish.  And his and our lives will be whole.

What exactly am I trying to say here?  I'm not sure.  Mostly I'm just spitting my thoughts out at this screen.  Things didn't turn out that way that we thought they would.  But I think things are exactly the way they're supposed to be.  Maybe physically we still have proof of what happened two years ago.  But really, we're getting very close to erasing that proof.  Not that we are ashamed by it.  But it's time to move on.  Time to live.  Time to enjoy our kids.

I can't believe how much they've grown and I'm seriously in awe of them everyday.   
  
Our world was rocked and we were just getting the hang of life with special needs twins.  Things were still scary and confusing.  Life was very hectic.  Our hearts were very full.


We began taking the boys more places.  We relaxed a little.  Life got a little easier, but harder at the same time.  (Not sure how that works.)  We began really enjoying being a family.  Our hearts were bursting with joy. 

 
Now, at two years old, I think we have the hang of this.  Our hearts continue to fill every day.  We are so very blessed. 




9.18.2013

cruising in hawaii

I started this post a few days after we returned home, and it was chock full of complaints about the kids' sleep, or lack thereof.  I promptly deleted that shit because honestly I couldn't stand to read it myself so why, oh why, would you want to read about it?!

I will say (again) that a week after our trip, we all came down with what appeared to be Roseola, more commonly known as the plague.  Ok, that is a lie.  But that's sure what it felt like.  Seriously, we could not even care for our children.  You can read more about it here.  Clearly I'm traumatized by this sickness since I'm writing about it again.  Trauma and also to explain why it's been silent here for a while. 

 So, about our trip.  We planned for this trip for about a year, all the while knowing it would be difficult with twin toddlers.  But we were willing to overlook that small detail since we were traveling with family who could help. 


We took an 11 hour flight to Honolulu, where we would embark on a cruise ship that would take us to four different Hawaiian islands.  I was terrified of flying with the kids, but in reality it wasn't all that bad.  The kids did pretty well.  Slept some.  Ate some. (We brought tons of snacks!)  The iPad was a must-have.  The toys I packed weren't really used, besides some of their books.  Aiden did get a little stir crazy toward the end of the flight, but we had a lot of hands on deck to help keep him occupied.  Besides it being a bit of a nuisance to follow him through the aisles, it was fine.  Seriously could have been much worse.  Unfortunately, Ryan did get sick at one point on the flight.  We were prepared though and had plenty of sick bags ready.  No one needed a change of clothing after the incident, but I definitely recommend shoving some into your carry-on for everyone traveling with you.  It was definitely harder than flying solo, and at hour 8 I wanted to rip my eyeballs out because I couldn't stand the plane any longer.  But the experience wouldn't keep me from flying with the kids in the future. 


Enjoying the iPad on the plane.  Seriously a life saver.

Our mistake was taking the kids to a location that had a 6 hour time difference.  It was so hard on them, and I didn't realize how hard it would be until we arrived and A&R woke up at 3:30 the next morning ready to go for the day.  Luckily the ship had a diner that was open 24 hours, so we headed there for a very early breakfast. 


Walking around the ship at 3am.  Failing miserably at taking a selfie of the four of us.
At the diner.
We spent the rest of the morning walking around the ship, drinking coffee, looking at the ocean and taking photos.



The rest of the trip was interesting.  Traveling with kids was totally not what I expected.  Probably silly of me to think that I would have time to lounge by the pool.  haha.   We couldn't really do any excursions, mostly because they involved a lot of driving and the kids weren't too keen on spending time in the cheap rental car seats.  So we spent most of our time on and around the ship. 

I think next time we take A&R on vacation, it has to be somewhere closer, maybe even somewhere we can drive.  It's not that we didn't have a good time.  I mean, we had the help of our family, and our boys are good at adapting to new schedules.  But inevitably, at this age, kids gets cranky when they don't sleep well.  Cranky kids make for cranky parents.  And cranky parents are no fun to be around.  Nonetheless, we did have some fun times and we did make some memories.  Our motto of the trip became "small moments".

 
A&R enjoying the towel animals and breakfast on the deck



Selfies & fedoras.  Because what is a vacation with either of these two?



Rain makes rainbows


A&R being cuties
We stopped at a beach on the side of the road  
The reality of traveling with kids:  you clip nails whenever you can (them things grow fast!)
Our last night we went to a Luau and the kiddos passed out.  We were pretty tired ourselves.


We have way more photos, but they currently reside on my sister's camera.  Once I get those I will post some more. 

9.17.2013

autumn. take two.

It's that time again.  Too chilly for shorts and sandals.  As a matter of fact, today I probably could've rocked boots.  Two years ago, around this time, I was being admitted to the hospital where I would lay for five days until inevitably, A&R would be delivered.  

This time last year I wrote this.   

I'm not exactly sure where I am emotionally this year.  It certainly isn't as hard as it was the first time around.  During the first anniversary.  

I'm being kinder to myself.  No longer searching for someone to blame.  Translate:  myself.  

Instead, I've been reveling at the idea that I have a pair of almost two year olds at home.  They're fun.  They're happy.  They're naughty.  They whine.  They smile.  They hug & kiss.  They fight with each other.  And they tell us "no!".  They are everything they are supposed to be.  

Autumn is upon us, and I think it's safe to say that I am learning to enjoy it again.  Sure, there are small flashbacks here and there.  Of the bed rest, the NICU, the small beings that have turned into toddlers.  That is inevitable.  I think it always will be. 

But it's easier.  Easier to let go and just enjoy being a family.  I couldn't control the circumstances that got us here.  But I can control - mostly - how I enjoy the result of those circumstances.  My boys.

A lot is going on in our household:  party planning, organizing, purging, teaching, learning, school (possibly).  More on those things to come.  For now, take a moment to enjoy my boys.


Fun times at the supermarket.

 
Fun times at the park.


 Oh, and meet our new family member, Opie.  The boys love him. 




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