3.29.2013

how to outsmart a toddler

I'm pretty sure you've heard this from a million other parents, but my kids are really smart.  Sometimes, they are way too smart for their own good.

Case in point:

Aiden is supposed to wear hearing aids.  He presented with normal hearing to mild hearing loss at his last hearing test, but his doctors still want him to wear the aids.  Well, apparently Mr. Aiden thinks hearing aids taste really good.  As soon as you put them in his ears he takes them out, takes them apart, and proceeds to shove them into his mouth.  The problem with this is A) serious choking hazard & B) hearing aids are operated using button batteries that are extremely harmful if swallowed.  

See my problem here?

Let's shift gears to Ryan.  Ryan is severely nearsighted in his left eye.  That is why he wears glasses.  I won't even go into how he takes them off all day long and chews on them.  No.  What I want to tell you about is how he oh so gingerly removes his eye patch every morning when I put it on him.  He is supposed to wear it for 2 hours a day in hopes that it will strengthen his bad eye.  But no.  The little bugger hates it all of a sudden, and removes it before I can even put his glasses over it.  

See my other problem?

I have two kids who need assistance with one of their five senses, yet they can't keep their little hands to themselves.  

My solution:


I've been using Aiden's arms restraints that we were given after his cleft repair.  I'm hoping that eventually Aiden's fine taste for assistive technology will wear off and eventually he will stop messing with his hearing aids.  And as for Ryan, well Ryan only has to wear his patch for a couple hours a day so it's no big deal to restrain his left arm for that time.  Since he doesn't ever use his right arm, we don't have to restrain it.  And who knows, maybe he will get fed up and actually start using his free arm.  

Here is how the boys feels about all this:

Ma!  What the hell?!

Oh, Curious George is on.  I don't care anymore. 

Clearly I'm also too busy watching tv to care about my arm.

And I'll just give you a quick smile!
 
Here brother, let me help you with your glasses.  

Whatever.  Let's just play!


3.25.2013

18

18 months ago we were here. 

We measured their weight in grams, their milk consumption in milliliters, and their breaths by the second.

A year ago we were here.   

We measured their weight in pounds, their milk consumption in ounces and their breaths by the day. 

Today, we are here. 

We've stopped obsessing over weight gain, ounces eaten and breaths taken.  We finally made it, to that place where we can just sit back and enjoy our family.  (Though I admit to loading their food up with extra calories, just to be safe.  Once a preemie mama, always a preemie mama.)

I'm having a hard time putting into words the way it feels to be the mother of these boys.  The privilege I have to watch them grow and learn is seriously enough to take my breath away.  To think that someone believed I was deserving enough to have these guys in my life is extremely humbling. 

Our lives take a lot of work these days.  But like a broken record I will say that I wouldn't change anything. 

And not to toot my own horn or anything, but I'm pretty darn proud of myself and Seamus for surviving 18 months with not only twins, but special needs children.  It's hard work, and we are still learning how to be good parents, but we made it. 

At 18 months Ryan is pretty much officially sitting on his own.  He can sit for like 40 minutes at a time and usually catches himself if he falls.  He is getting stronger by the week and is able to bear some weight on his legs.  He loves his exersaucer now that he has the strength to hold himself up and turn himself around to reach all the toys.  We are working on having him bear weight on his hands and knees to get him used to the feeling of crawling.  He waves bye-bye to everyone he meets and also the to the tv.  He blows kisses when prompted.  He can gesture "me".  He says green & banana, when asked to repeat it.  He can drink from his sippy cup all by himself.  He takes bites of his food, rather than just shoving an entire piece into his mouth.  He loves balls and books.  And he is oh so snuggly. 

 At this point, Ryan requires a lot of attention because his curiosity is easily piqued, but since he's not mobile he relies on us for all of his transportation.  Sometimes it can be tough.  Having someone strapped to your side at all times.  But I try to remind myself that one day he won't need me as much.  And when I'm cuddling with him trying to get him to go back to sleep for the 5th time in a night, I try to enjoy his warm little hands on my collarbone and his muffled baby toddler sounds that end up lulling me to sleep.  

At 18 months Aiden is still a firecracker.  He is so ready to walk but lacks the confidence he needs to actually let go and do it.  He took a couple steps the other day but was quickly derailed when he stepped on a burp cloth that was randomly laying on the floor.  Any day now.  He bear crawls all over the place.  Dances to music.  He is bottle free and chugs from his sippy like it's a mug of beer.  He can point to his nose, belly and head.  He can sign "more" and "all done".  He can gesture "me" and when asked how big he is he lifts his hands up over his head.  He can say the word yellow.  This video is of Aiden talking.  The first minute has the most talking and I apologize for being so far away while filming but I was trying to be inconspicuous.

 
Aiden is currently going through some serious separation anxiety and he is mastering the art of the temper tantrum.  It is an odd place to be.  A parent whose child wants what he wants but is too young to be disciplined.  So at this point we ignore the tantrums.  Maybe he will stop one day?  Wishful thinking? 

So here we are.  A year and a half into this journey.  One that I can describe as extremely difficult.  Trying.  Testing.  You give up your entire life to nurture these little beings that are nothing without you.  And while some days you may resent them or even your spouse, simply because you haven't slept in 10 days, you quickly forget all that when this happens:


(Sorry, it's sideways.  I can't figure out how to turn it.  I'm a newb.)

I love my life.  And I can't wait for more. 

3.21.2013

breakthrough

Last Friday, our sweet boy Ryan had a breakthrough during his Physical Therapy session. 

Many of you know that at almost 18 months Ryan does not crawl, he does not pull up to stand, he does not walk.  He has never rolled and is just beginning to be able to sit up on his own without any support from us or a pillow. 

Well, as of last Friday the statement above is no longer true.  Because Ryan rolled!  With some assistance from his therapist, but he rolled nonetheless.  And then he did it again for me before bed that night.  He needs to be put into position (on either of his sides) and he needs to be in the mood, but he does it.  He uses his strength.  Strength that he never had.  Strength that many of us take for granted.  And he pushes his little body and rolls over onto his belly. 

I missed it the first time it happened, but when he did it again that evening I cried.  I cried the happiest tears I've cried in a long time.  You all know that I love my son.  And I will love him no matter what he ends up doing in life.  But this little feat?  It opened up a whole new world for him.  He will crawl.  He will walk.  He will jump.  And he will skip.  It may take him a little longer than most, but I have no doubt in my mind that he will do it.

Ryan, my love, you make me so proud.  I revel at your glory. 


3.14.2013

five (new tricks) for friday

1.  Both boys wave bye-bye without being shown the gesture.  All you have to do is say the words and they will wave.  

2.  Aiden will clap his hands if you simply ask him to clap.  We don't have to show him anymore, or scream yay! in order to get him to do it. 

3.  Ryan gave me a high five the other day, with his right hand.  Voluntarily!  I just about cried.  Seriously, this kid struggles so much with that hand, but he is using it more often all on his own.

4.  Aiden learned how to sign "more".  He also puts his hands on his belly when you ask him to say "me".  And since his cleft repair, he has been producing new sounds. 

5.  Ryan's new thing is throwing food that we put on his tray.  Also, chewing his food, picking it off his tongue, and then throwing that as well.  Yuck.  Boys will be boys?






lately

Life is crazy.  We go a mile a minute, every day.  Sometimes with little or no sleep.  The weeks keep passing us by.  Before we know it, it's Monday again.  And the boys just keep growing and learning new things.  It's really crazy.  At this point I'm ready for the summer (Goodbye, winter!  You're way too cold!!), but I need to remind myself that we will never get these days back.  And I must try and enjoy the boys while they are the age they are.  Tomorrow they will be bigger.

Aiden has fully recovered from his surgery which was already a month ago.  At two weeks post-op we got the ok to begin reintroducing most of his normal foods.  At three weeks his surgeon proclaimed his incision completely healed and remarked that it was his best work yet.  Sounds good to me, doctor!  

I'm not sure if I mentioned, but for two entire weeks Aiden was on a drinking strike.  He wasn't allowed to drink from his bottle so he refused to drink at all.  We spent every day pushing apple sauce and liquids through a syringe to ensure that he didn't get dehydrated.  I had hoped to use this time to transition him to a sippy cup (we were told we can use one without a spout), but my plan was not working.  When we finally got the ok to give Aiden his bottle back, he didn't really know how to suck.  I didn't even realize that this would happen, but it makes sense since his entire mouth is different.  So after a few attempts, we decided to offer the sippy again.  We gave him a choice between his bottle and sippy.  He took the bottle, threw it to the ground, grabbed his sippy and started chugging.  Weirdo.  So he's completely off bottles at this point.  

Ryan, as you all know, is struggling with sleep.  Though the changes we implemented seem to be helping a little.  Last night he only woke up at 4:30 for a bottle (no more bagels!!) and then fell back asleep pretty quickly.  I am still waiting on some other stuff I ordered which I hope will help him even more, and I'll report back once we implement everything.  Hopefully making him more comfortable is the key to help him sleep.  Not only for our sanity, but baby boy needs his rest too.  

Speaking of which, tomorrow is a big day for him.  When Ryan was diagnosed with CP, I mentioned that his physiatrist wanted to have him evaluated by his team of therapists.  Even though he's been evaluated and receives services through Early Intervention, we have agreed to these additional evaluations.  I think that they will give us more insight into where he is developmentally as well as where he can realistically be.  Perhaps this will also aid in getting us additional services.  So, tomorrow he will be evaluated by a Physical and Occupational Therapist out of Rusk (NYU).  And then next week is his Speech Evaluation.  Please think of our little boy, as these evaluations tend to be a little tough on him.  

 And before I go, some of the recent happenings in our home:

Daddy & me - I'm so lucky to have these three <3

Sorry about the horrible pic quality, but they're really starting to interact/play/fight.  Brothers for life. 

Poor, sick Ryan :(  He's better now, though!

Just hangin' out on a Saturday

Sick & clingy Aiden = Tired momma

Aiden resting while he had the flu & looking like a teenager!  When did he get so big?!

Ryan got a Valentine from a very special friend

Aiden's new favorite thing is wearing sunglasses
 


3.13.2013

sleep

I've been terrible about checking in lately.  What can I say?  Life is busy.  Especially when you get the flu times two.  Because that's what happens with twins.  Double the love, and double the snots.

Yes, Ryan came down with the flu around two weeks ago.  His symptoms lasted around a week, and exactly one day after Ryan was pretty much back to normal, Aiden's symptoms started.  He is still plagued with a lingering cough, and we took him to the pedi yesterday to check his ears and lungs.  Both checked out fine, and we were instructed to use Benadryl at night to help with the cough.  My sick little ducklings have been oh so miserable, especially at night.  I don't blame them, if I had the flu I would probably fight sleep too.  But at 2am, I do secretly blame them.  Whoops.  Confessions of a sleep-deprived mama?

I seriously feel like I've been complaining about crappy sleep all winter long.  It all started here.  So yes, all winter long.  We ended up separating the boys, which I really didn't want to do until they asked for separate rooms.  I was going to use our extra space as a playroom/guest room, but that plan is now shot to shit.  Ryan got the new room.  We decided to move him instead of Aiden because Aiden was already dealing with so many changes post-surgery.  It took a few nights, but Ryan has finally gotten used to the new surroundings and will sleep in his room most of the night (with about a million and one wakeups...ugh).

Since we moved Ryan though, Aiden has pretty much been sleeping from 7pm-7am.  He puts himself to sleep and if he wakes he usually soothes himself back down.  The only exception is the past few nights where he has woken up coughing pretty badly.  

Ryan though, is really, really struggling with sleep.  He has not slept through the night in I don't know how long.  He has trouble staying asleep.  We put him down anywhere between 7 and 8pm, and he wakes on average about 4 times before midnight.  And recently he will also wake at 1 or 3am, and refuse to go back to sleep for 1-2 hours.  Needless to say this has made for some tired parents.  We've even resorted back to taking shifts, like in the newborn days, so that we can get some uninterrupted sleep.  

At this point we are at a loss.  At first we blamed his sleeplessness on teething, then development, then sickness and then another sickness.  But he is no longer sick and he is still sleeping like crap.  We did some research, and actually found some information about children with CP/special needs being susceptible to sleep disorders.  The theories (or facts, not sure...too tired to read thoroughly) are that children with special needs or neurological disorders have a few things going on:  the part of the brain responsible for sleep may be damaged, lack of mobility may cause restless legs or even body aches & pains, lack of mobility also means that a child cannot get comfortable, neurological damage can cause a child to have issues regulating temperature so they may get extremely hot or cold.  There are more but my memory fails me right now.

So yesterday we began our quest to get to the bottom of Ryan's poor sleep.  Poor kiddo, it really breaks my heart that he is having such issues with something so simple.  Following some advice from fellow moms and in conjunction with some of the information above, we changed a few things about our nighttime routine:

1.  We fed the boys dinner later than usual.  And also offered a post-bottle snack.  I didn't mention above that Ryan has also been waking up at 3am to eat bagels.  So I figure the kid needs more food.
2.  We gave him a nice, long massage while he watched his bedtime dvd.  
3.  We swaddled him.  Yes, we swaddled our almost 18 month old.  Arms and legs out, but tight around the middle.  I read that this may give him some sensory input to help him sleep, so I figure it was worth a shot.  

Overall I would say that operation swaddle me worked.  He went down at 8 and didn't wake up at all until 1am.  Even then, he was easily coaxed back to sleep.  Then he woke up at 3am and of course wanted another frieking bagel.  He fell back asleep around 5:30.  So while it wasn't a complete success, it was much better than it's been.  I think we will continue to swaddle & massage before bed.  Now we just need to figure out how to get more calories into him during the day so he doesn't wake up hungry at night.  

This was supposed to be an update on the boys.  They are both growing and developing, doing some new things.  But it evolved into an way too detailed explanation of sleep.  So stay tuned for tomorrow's post on what's going on with us lately.  

 




3.06.2013

a happy ending

I've been MIA for a bit.  Things have been busy.  Our Ryan came down with the flu (so scary) and hasn't been sleeping well at all so I just haven't had time to post.  That, and the fact that I've been lacking inspiration at the moment.  Sometimes I feel like I've written everything there is to write and I would hate to bore you all by repeating myself all the time.  But then, something happens, and all of a sudden I have so much to say.

Case is point:  Yesterday I was browsing my blog stats, as I do every so often.  Part of the data that blogger (the platform on which I am blogging) collects is a series of phrases that readers google which have led them to your blog.  One of the phrases that popped up yesterday was "preemie happy ending".  

My heart skipped a beat and I was instantly brought back to to the night I delivered the boys.  Seamus had gone home to sleep in a real bed (I urged him to go because he spent the previous four nights by my side sleeping in a chair).  My mom had left for the night as well and I had settled in with my laptop and some chocolate.  Something in me desired to search for success stories of babies born too soon.  So I googled and typed, and happened to come upon a post on a message board entitled "Now & Then".  When I opened the thread I was flooded with stories of babies who were born at 23, 24, 25, 26 weeks etc.  All the women who posted had included a photo of their kids at birth and where they are now.  I was comforted by these photos.  

Little did I know, that some of these women would become a source of support for me through our NICU journey and even now, almost 18 months later.  I went to sleep and woke up to be rushed to the OR to deliver my boys.  Coincidence?  I think not.  Someone was at work there.  

My point is that when life gets tough and we find ourselves in scary situations, it is in our nature to seek out people who have experienced similar situations.  I imagine (and this could be totally false) that this person searching for a preemie happy ending may have just delivered a preemie.  Or maybe it's the friend or loved one of someone who just had a preemie.  Who knows.  They may have stumbled upon my blog and actually read some what I've written.  And in all honesty, even though the toughest times are behind us, this person still may have been discouraged by what they saw.

After all, our new normal is a life filled with therapists, doctors and diagnoses.  On average, we have therapy at least once a day (between both boys), specialist appointments 2-3 times a month and so far we have three separate diagnoses.  This can all seem overwhelming to an outsider.  To someone who hasn't lived it.  And to be honest, when we were new to this I was overwhelmed.  

But as the boys have gotten older, we've adjusted to our daily, weekly and monthly routines.  And we have accepted the fact that we will always be a family surrounded by medicine.  And while yes, we have spent our fair share of time sleeping in hospital rooms with our children hooked up to all sorts of machines, we do lead a normal life.  

We work.  We play.  We organize.  We plan.  We sleep.  Sometimes we don't sleep.  We try to raise our kids the best way we know how.  Sometimes Most of the time we even forget about their shunts and CP and hearing loss and developmental delays.  We are a family and we love each other.  We cuddle our babies toddlers, and tickle them.  Play with them and make them laugh.  Show them new things and teach them to wave and clap and all that good stuff that all other typical families do.  And we aren't overwhelmed anymore.  Life is good.  

So, dear "preemie happy ending" seeker.  I hope that the road ahead for you is as easy as it possibly can be.  I pray for your strength and resilience.  I send you hope and faith.  And I hope that one day, you will visit us again and you can share your own happy ending.  Because this is ours.  And while it's just the beginning, a chapter did indeed end.  And we are happy. 


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