Photo Friday!

2010 Holoprosencephaly Conference - Balloon Release


All of these balloons represent the HPE children that have gone to heaven.

Leaving on a jet plane................

As of 8:13am Vinny and I, along with my mom are taking off to join our HoPE family in Maryland for the 2010 Holoprosencephaly Conference.  I am so excited for this trip!  Not only will we be able to meet so many moms and their little miracles living with HPE that I have grown so close to through Facebook and our HPE Yahoo Group, but we will have the opportunity to learn so much about HPE.  As of right now, I really don't even know what to expect to learn, but I promise to be as much of a sponge as possible in order to relay the info to the rest of my HoPE family that could not join us. (will miss not meeting you Carly and Shannon).

Another exciting piece about this trip, is that it will be Vinny's very first plane ride, vacation, and special mommy and me moment....(not that we don't spend enough time together as it is).  I look forward to spending that time with Vinny; and learning as much as possible about what he lives with every single day.  LOVE YOU VINNY!

Even though I am very much looking forward to this trip, it was suppose to be a family vacation, until of course I backed into my sisters car, insurance won't pay (fighting this), and now Tony has to stay home to work to pay for the damages.  (Sorry Tony!)  I will greatly miss both Tony and Jake.  This is the first time I will ever be leaving THEM....(they always leave me!). 

So now that they are not coming, I am so greatly appreciative to my mom for joining me on this trip.  We will have a good time.  Our plan is to Visit DC today and Wednesday before we fly back on Thursday.

I look forward to blogging some more with photos, info, and many special moments!

Gina

UPDATE!!  This blog was written in advance and scheduled for posting.  As of July 21st my insurance is covering my accident!  It certainly pays to complain!  I'll let you know if Tony and Jake end up coming with us.

Photo Friday!!

Next time you see this photo.  I hope to be standing in front of it.

Angel In Our Dreams

Well, more like Tonys dreams.

The other morning Tony woke up and began to tell me about the dream he had.....

A man came to our door to deliver a "special" package.  As he handed the package over to Tony, he proceeded to explain that the contents of this package were very special and that we are blessed to have it.  He said it would teach us many wonderful things.  Most importantly it would teach us love.  Tony thanked the man and wished him well.  He then came back into the house, sat down an proceeded to open the package.  In it, he found a picture with a photo of Vinny.

I thought this was such a very special dream.  We really do feel blessed that we have Vinny.  Tony feels that the man in his dream was most certainly an angel.  I agree!

Summer Swim'n

We've been getting out this summer and making some splashes.  Jake and Vinny have been having so much fun.  The water has also been therapeutic for Vinny.  While in the water, his range of motion seems to be so much wider and has even been seen kicking!

Here are some photos of fun!

Photo Friday!

I'm starting a new weekly tradition on my Living with Hope blog!  Every Friday I am going to post a favorite picture of mine.  So, to introduce Photo Fridays, I begin this week by posting a photo of my favorite people!

 

Trying New Things!

Well since Vinny is getting a little bit bigger, he has been trying new forms of therapy with his Physical Therapist.  Both forms are designed for him to start moving his legs and hips properly in a walking position.  The first photo is from today and Dawn (his therapist) said he did very well in it.  She did assist his legs a bit.  Vinny actually liked this one; and I have to say also, that this was his very first appointment in 6 months that he did not cry or put up a fuss!!  WOW!

 

 

This next photo however, he is clearly not happy at all.  This was taken 2 weeks ago.  Before I took this picture though, he had been playing in this stander against a chair, playing with some toys using his shoulders and arms very well. 

Either way, he is making very good progress.  In the beginning, I thought we would never get to this point; but he did and he is doing great.  We just got approved for another 5 months of therapy and I can't wait to see what he will be able to do in the coming months!

Good Work Vinny!

Living with HoPE!!

I am excited to inform you that I am changing the name of my blog to Living with HoPE!!.

I decided to do this because I want the blog to be more about us as a family.  Not only will I continue to write about Vinny and HPE, but I want to include more on Jake too.  Jake will be starting school in the fall and will be participating in lots of fun things, that I would love to share with all of you.  Also, as a family, we have a few vacations coming up that I plan on blogging about.

I chose Living with HoPE!! because that's what we are doing.  Not only does Vinny live with HPE, but as a family we all are living with HoPE that God continues to bless us the way he has been.

Plus, I think the title fits appropriately!

Getting Older

Vinny is officially down to one nap a day.  I have been finding that the two naps just weren't working anymore.  Once bedtime came at night, he was not ready and would put up quite a fuss to stay awake with us.  The nights he did do that, he did however enjoy watching Desperate Housewives with us on DVR.

Just proof he is getting older....