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 ;)