Life after Early Intervention

Early Intervention came to a bit of an abrupt halt for us last month.  It had been on our minds for a bit to switch to private therapies, but we were far from making a decision or coordinating a transition.  It became clear to us that Virginia was not going to qualify for an IEP through our school system at 3 (which is only 6 months away!), so it was the push we needed to switch over to community enrichment activities and private therapies.  It does make me a little nervous to not be in the "system" anymore.  I worry about whether or not she will need an IEP at kindergarden or beyond and how hard it will be to get that now that we are no longer on the train, so to speak.   Virginia's needs right now mostly fall under physical therapy, but are not severe enough that they would impact her educational or classroom needs so thusly in our district she would not qualify for an IEP or services at this point.

So where does this put us?  A little bit in limbo.  A really great, but a bit overwhelming limbo.  I'm fearful to miss something, but we are all very happy to be navigating things on our own.  For now, and possibly for all spring and summer we are focusing on community activities that challenge Virginia physically.  Naturally I think we will see a lot of progress again this spring and summer just because there are so many opportunities for her to blossom in her physical development in this nice weather.  Playing on the sandy beach, climbing on the playground, and navigating our yard are all some of the best PT around!

We also go to weekly "my gym" class where Virginia is really challenged physically.  She intently watches and imitates the other kids in class and really challenges herself.  As her Mom, it can be tough to not compare in this environment though.  Her coordination, cautiousness, shyness, and sensory quirks all become very obvious in these classes.  Similarly, her determination, wit, ability to follow direction, and silliness also become obvious.  These weekly classes have been a good starting point for us.  We hope to try out swimming (or a more formal aquatherapy), a music/dance class, and hippotherapy at some point too.

The question now is when to add back in regular PT.  Should she go weekly?  Should she get OT too? Where is it going to fit into the schedule?  Should we just take the summer off and see what happens?  It will all get sorted out but we are not in a rush.  The break has been really nice and to be honest I think it has been great for all of us.

So there is life after Early Intervention.  It doesn't mean that everything is "all better." There is still work to do, but also a point for us to look back and see all that Virginia (and we) accomplished.  Another transition of pride, progress and fear.  A chance for us to regain more control.  

2 amazing micropreemies at my gym together!

Swinging, Walking in the sand, and egg hunting all were our PT last week ;)

March for Babies Update

Our first March for Babies event is just 4 weeks away!  Once again we continue to be so amazed and grateful for all of the support of Team Go Ginny Go!!  We have raised nearly $4500 so far this year but still have a ways to got to surpass our total of $13,000 last year.  We are well on our way though, and will soon add our contributions from our March Madness brackets, and our upcoming shake shack and garden catering fundraisers!   

For those of you that are able to join us on April 26th at Watkins Park or May 4th at Jennings Beach in Fairfield please sign up this week!   We will be ordering shirts next week and want to be sure that we have one for each person that walks with us!!  Please comment below or email me with sizes for any kiddos that will be joining us as well :) 

You can register at www.marchforbabies.org/virginiakkent by clicking the "walk with me" button.  Please let us know if you have any problems registering.  And please consider sharing your fundraising link with your friends, family, coworkers etc :)  

Front of the 2014 Shirts

Back of the 2014 Shirts

update

Things have been a little nutty around here lately (Heath has shingles, work is cray-cray, winter won't go away), so here is a good old fashioned Virginia update.

Virginia had her first haircut.  Literally on a whim I decided that her mullet had to go and drove to the chuck e cheese children's haircut place on the way home from a playdate.  In true Virginia fashion she screamed the entire time, including when the prize machine pelted her with a capsule containing a temporary tattoo.  It looks great though and we even came home with a certificate with a very slightly creepy bag of hair attached.  

We had our first real respiratory scare this week.  She weathered her first 2 colds really well, but this one hit her quite a bit harder.   It sorta came out of nowhere and escalated quickly.  Had I been in a clearer state of mind we probably would have gone to the ER, but our middle of the night hazy state locked us into survival mode. After 5+ hours of coughing, a high respiratory rate and a tumble off of the bed, she finally settled down and we all got a little shut eye.  By the time we got to the doctors she was still breathing pretty rapidly and retracting, but responded nicely to the nebulizer that they gave her in the office.  So it has been a week full of lots of snuggles and inhalers. She is doing much better now despite having a pretty gunky cough.  Is it spring yet?!

Today we met to review Virginia's most recent evaluations and presumably write her IFSP.  During her testing last week, I was truly pleasantly surprised at how well she did.  She was matching shapes, sorta naming colors, and appropriately identifying and verbalizing pictures.  I fear that I spend so much time focusing on the worry of the week that I am missing out on all that she is able to do (that is a post for another day, though).  Needless to say, I wasn't surprised when her report showed that at this time there are no longer any cognitive, speech or fine motor concerns!!!  They did note that there were still some gross motor delays (also something that we already know).  This was all wonderful news, but left us with some decisions to make.  Ultimately we decided to discontinue Birth to Three (EI) services in and go completely to private therapies and community programs (mygym, music class etc).  

I'm nervous but excited for this change.  EI in our state is not free and is on a pretty costly sliding scale.  Even if we choose all out of network therapists our monthly costs will still probably fall under what we were paying for our family fee in EI.  Moreso, I really feel that Virginia will benefit from therapy outside of the home.  Aquatherapy, hippo therapy, and big vestibular swings are just not possible in our home (although a pool and some horses would be nice!).  

So, Im not sure where it is all headed but I am thrilled that she is in a place that allows us to make these decisions.  Anyone else transition to different therapies? 

Lastly, we are trying something new this year!  We are having a March Madness Bracket Tournament for our March of Dimes team.  $20 per bracket and money will be split between Team Go Ginny Go and the 1st &2nd place winners.  See below for more info and join us!  

limbo

Tomorrow we have Virginia's annual testing for birth to three (Connecticut's early intervention program).  Im excited to see how she scores in the various developmental categories but am also realistic that they are just scores.  They are nothing more and nothing less, simply a tool for us and her therapists to use to decide whats next.  I am confident that it will show that she has made some tremendous progress in closing the gap, but I also fear that it may not pick up on the subtleties that impact or may impact her development.

This time of transition feels much like the end of our NICU journey.  We know that there is still alot of hard work to be done.  We straddle the line of being comfortable and happy with the support (nurses then, therapists now) and wanting some freedom, normalcy  and privacy.  And we are embarking on a new phase of parenthood where the responsibility of her care and development is more firmly placed on our shoulders.

Much like this same time 2 years ago, things are far better than what we could have imagined, but we remain weary of potential consequences of Virginia's traumatic and early birth looming at the next step.  

Say it with me.  Stay in the moment!  Focus on the now!  There will be no ground breaking discoveries tomorrow, hopefully just affirmation that we continue to head in the right direction.

One skill I am confident that she has mastered... watercolors ;)

Happy Happy (Homecoming) Day

2 years ago   today our little 6 pound 10 ounce 4 month old came home from the hospital.   That day was quite possibly the most normal part of our journey.   Well maybe not normal, afterall it had been 4 months since delivery and I was wearing skinny jeans.  We had stopped for coffee on the way to the hospital and we had a restful night of sleep the night before (it was my first time not setting the alarm for 1am and 5am to pump). Im pretty sure that is not how most people bring their babies home from the hospital, but it seemed normal to us and it is definitely a contender for the happiest day EVER.  

2 years later February 22nd is still such a happy day. The mixed emotions, sadness and guilt that surrounds many other anniversaries is nowhere to be found today.  Its a day to celebrate being whole and together and it is a day of immense gratitude.  

Today the sun was shining bright much like her homecoming day.  We left the house early to go to the children's museum for some fun and time in the much loved water room.  I kid you not, as we got on the highway "Home" by philip phillips came on the radio.  Immediately Virginia called out from the backseat "Ginny song!!" Sometimes you just can't make this stuff up!  It set the tone (pun intended) for a beautiful day of enjoying our best girl.  

We celebrated today with an elmo balloon, a cupcake decorating party, lots of snuggling, and our annual porch photo :) 

And because Virginia couldn't quite get "homecoming" to roll off her tongue this morning the rest of the day was known as and will probably forever be known as "Happy Happy Day."

ALSO, we have hit our goal and will be providing 31 meals for families at Yale's NNICU.  Thank you to everyone who has supported our efforts.  We know that the support to team Go Ginny Go will make an immediate impact for the families at YNHH and a lasting impact through the research and support of the March of Dimes.  Click here  if you are interested in supporting or walking with Go Ginny Go.  We have just over 2 months until we will be walking for healthier babies.  

 cooking at the childrens museum

winter blues and valentine fun

I usually hate to complain about things as mundane as the weather but I'm sure as many of you can relate, we are SO over winter.  OVER it! We are doing our best to make the most of it, but are struggling to balance work, snow days, avoiding the sickies, and staying sane. Please come soon spring!  

Life has been busy, fun, stressful and confusing lately. It seems like lots of good news and good things have been equally paired with tough news and stressful things. All is good though, there is lots of laughter in this house! That sums up the lack of blogging lately too... life has just gotten in the way.  I hope that changes soon!  

In the meantime, some of our good news!

Virginia passed her developmental eye exam with flying colors!

Heath has just 3 months left until he has his MBA diploma in hand!

My project appears that it will finally be entering the construction phase this month.

Virginia has been showing some interest in potty training (in her own time and in her own way I'm sure)

Our March of Dimes team has already raised over $1200 (but we could use more help.  wink. wink. http://www.marchforbabies.org/virginiakkent )

This little girl had an awesome valentines day!  Once again she wore her little felt heart.

yup.  That is the same one as in this photo! 

And she had her very 1st valentine exchange with her fun bunch of friends.  

mom confessions

they'reeeeee  back!

some Mom confessions!

Before we start, look at this face! I die. She is lucky she is so darn cute.  

I am so sick of sharing my food.  I can't even eat my hard boiled egg in the morning without giving my little pants pulling, whining girl a bite.  It is a hard.boiled.egg not a brownie.  

Im convinced that Virginia is still going to be having crocodile tear temper tantrums at 7th grade drop off.  I totally dread drop off every morning :( 

Sometimes I wish I could have a tantrum a la Virginia when things aren't going my way.  

My new hairstylist confirmed that I have a "few" grey hairs. I wonder how that happened?!

Speaking of hair, it is taking all my power not to cut Ginny's baby mullet.  

I could only laugh when Virginia chanted "Mooooore Coffee, MY coffee" over and over while lunging for Heath's coffee cup through the grocery store yesterday.

There is really nothing better than a tea party with Elmo, Abby and Baby Stella.

We need a bigger house driveway, playroom and 2nd bath.  Less confession, more desperate statement. 

I was dumb enough to fall into the "sure, Ill let you out of the stroller as long as you hold my hand" trap.  It ended like this: