7.25.2013

one year.

One year ago today, I started this blog.  I wanted to support those who were in my shoes.  I wanted to document all the important things for A&R, especially where they came from.  But also, I wanted to heal.  And though it's a long process that probably will never be complete, I'd like to thank you all for letting me speak.  Because speaking...writing...is where it all pours out.  And the key to healing is letting it all leave you.  So thank you for taking this journey with me.  And most of all, thank you for letting me know you're there. 

Life has certainly changed in the last 365 days.  I have certainly changed in 113 posts. 


22

Today the boys are 22 months old.  You know what that means?  They are only two months away from 2 years old!  When and how did that happen?  Seriously, I feel like their first birthday was just yesterday.  Time certainly does fly.  Yes, when you're having fun.  But also when you're busy wrangling toddlers all day long. 

These kids sure are a handful, and we are right smack in the middle of toddlerhood tantrums.  They cry and whine for every reason, and sometimes for no reason at all. 

Their favorite word is "up", which they use in the right context most of the time.  They say "up" when they want to be picked up.  But also if you ask them what they want (in an effort to minimize the unnecessary whining) they will answer with "up" 99% of the time, even if what they really want is milk, or food, or more Thomas.

Which brings me to their favorites.  A&R love watching Thomas & Friends with their daddy.  Their favorite part of the show is the end when the song comes on.  They both start smiling immediately.  Daddy picks up Ryan and Aiden quickly jumps into his lap.  They sit there and sing along, and have the cheesiest smiles on their faces.  All three of them.

Super Why is another favorite show in our house, which I credit for teaching the boys their alphabet.  Yes, you heard that right.  At 22 months (19 months adjusted) they know their A,B,Cs.  Aiden can point out almost any letter and identify it correctly.  Sometimes he confuses E for F or says "meow" instead of "W', but most of the time he gets his letters right.  Ryan watches closely and is slowly learning.  He doesn't quite know as many letters as Aiden, but he is getting there.  We are now working on counting from 1 to 10.

A&R's communication has improved dramatically just over the last few weeks.  I would say that they probably have 20-30 words at this point, maybe more.  Some favorites are up, down, in, out, hi, bye, milk, more, eat, all done, car, cat (and meow), cow (and moo), big, sleep, baby, mama, dada, nana, babi (grandma), baba (bottle), wawa (water).  I'm sure there are more that I am forgetting.  

Aiden has officially mastered walking, for a while now.  He's been trying to jump lately and he can climb up on the couch.  And Ryan, well, you saw what Ryan has been working on in yesterday's post.  
Mealtimes are getting to be a little more difficult.  Neither child likes to sit still for very long, especially Aiden.  So breakfast is currently consumed picnic styled on our living room floor.  Lunch and dinner are still confined to high chairs, but it's a struggle.  The boys will take a couple bites and immediately want "down" or "out".  I tried putting them at the dining room table in boosters to help remedy the situation.  It worked for a little while but we are back to "out" & "down". 

We have a million teeth between the two of them.  Seriously, in the last few weeks I think we've seen 12 new teeth.  Including molars.  Oh how much I hate molars.  They make my happy, fun babies turn into sad, whiney children.  We are currently experiencing some relief but I know that the two year molars are right around the corner.

Favorite songs to sing include the itsy bitsy spider (complete with some clumsy hand gestures) and Old McDonald.  

Each boy has a stuffed animal that they call their "baby".  They like to sleep with them and use them for comfort.  Aiden's is a monkey and Ryan's is a lion.  Funny enough, they use them interchangeably.   
Every day they pick up a new word or gesture.  Both boys give the best hugs and kisses.  And they even give each other high fives (prompted, of course).  

Our lives are filled with so much joy.  Some days are hard.  Scratch that, all days are hard.  But in the end we realize that we are so lucky to watch these two boys grow and learn.  Soon enough they won't be this little anymore.  And our hard days will get a little harder (hello, terrible twos).  But it's important to sit back and soak up every detail now.  They change so fast. 




7.24.2013

mr. ryan

This past Friday we took Ryan back to the physiatrist for a follow up visit.  Our main reason for the follow up was to discuss some equipment that our therapists have mentioned would be beneficial to Ryan's development.  Before I move on, this is Ryan in the waiting room.  I can't believe how big he looks in photos.  It always shocks me, but he is almost two so I really need to get off the baby bandwagon.


For some reason, Ryan hate, hate, hates this doctor.  Of all the people who are involved in his care, Dr. Sukhov is seriously the least invasive (no shots, no exams of his ears or throat, etc) but for some reason Ryan screams bloody murder whenever he comes close.  Poor doctor.  Anyway, we discussed where Ryan is with his major milestones, what he can and cannot do, and where we are with his therapy.  I was pleased to report that Ryan has made some major progress in his gross motor skills and Dr. Sukhov was happy to hear it.  

In the last 6 months, Ryan has gone from a child who was essentially immobile, to this: (He likes to scoot around rotate oh his little booty to get to where he wants to go)


Ryan can also roll (he needs assistance from back to belly, but belly to back is all on his own) and can transition to sitting from lying down.


Most recently though, Ryan has surprised us all by bearing weight on his legs.  In the past, when we would try to stand him up, his knees would buckle.  Now he is able to stand (with our support) for up to a minute at a time.  He is getting better every day. 


All of these important milestones are closely intertwined with our next steps in Ryan's treatment.  At this point, Ryan is ready for some equipment that will aid him in learning how to use his body properly.  And most importantly, these are the tools that he needs in order to one day walk.  This is going to be a bit of a process, with insurance approvals and what-not, but in the next few months Ryan will be getting a stander (a machine that will get him used to bearing weight on his legs for long periods of time) and two types of legs braces.  One pair is to be worn only when he sleeps.  The other pair will be used during his therapy for now.  There are many different types of standers and leg braces out there, and I'm not sure exactly what kind we will be getting.  Once we get further along in the process I will post some more about it.  

But for now we are excited for our little boy.  Giving him the tools he needs to succeed in life is what we are here to do.  And this equipment will ultimately get him there.  




7.18.2013

what's been up

The heat.  It's really, really hot.  But I guess you already knew that.  Doesn't bother me all that much, I love the summer heat.  I only wish I could bask in the summer sun all day long, next to the pool that I don't have in my backyard.  

Moving on.

Summer seems to be flying by, and we've been keeping busy with our growing boys.  Lots of therapy, some doctor appointments sprinkled in, and as much family time as we can fit in.  It's a little hard with Seamus and I working opposite schedules, but Sundays are our days.  And lately all of are Sundays start off with a lunch date with our boys.  Our recent faves are Five Guys and Chili's.  Look at how much fun we have.


The boys acquired a new toy that they absolutely adore.  It came from Target.  It is a box.  Yes, a very large cardboard box.  Seriously, I don't even know why we have real toys in this house.  Just throw them (or place gently) in a box and they have a blast.  


We celebrated the 4th of July by BBQing (and also celebrated two very special friends and their bun in the oven, who also happens to be A&R's bff).


 The boys got their first pair of crocs.

 

Aiden experienced true sadness one morning.  Why, you ask?  Who the heck knows.  Probably because he is a toddler and his current favorite thing to do is whine and have tantrums.  haha.


But we made up for it a few days later with his first ice cream cone.  Mr. Ryan missed out on the fun because he was napping.


Finally, Aiden had a follow up appointment with the oral surgeon who performed his cleft repair.  Everything looks beautiful.  He remarked that Aiden's palate now looks like a typical palate.  We spoke a little bit about Aiden's lip.  He has what is called a microform cleft.  It looks like a scar on his upper lip.  Basically he was about an inch away from having a cleft lip as well.  Anyway, Seamus and I decided long ago to leave his lip alone.  It doesn't bother us and he's beautiful the way he is.  If Aiden decides that it's something he wants fixed when he's older, we will revisit it then.  But for now, no more surgery.  We will continue to follow up with the oral surgeon once a year (slowly crossing doctor appointments off our list!) and at age 7 or so Aiden will require surgery on his gums.  Unfortunately his cleft reached his gumline, so when he smiles you can see a space in his gums to the left of his front teeth.  But that can't be repaired until his permanent teeth come in.  For now though, he's done. 

Life is busy.  Life is fun.  Life is ours.

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