On Hiatus.....

Okay, so as you can see, it has been a while since I have posted a new entry.  This entry is to officially inform you that I am on a blogging hiatus...(not that I wrote that often anyway.)

Life is a little busy these days, especially with spending any free time on my own school work, so just won't have the time.

I hope that when I return, I will have a few good entries for all of you.

Ciao for now!

Family Vacation

This past weekend we spent a few days in Wisconsin Dells at the Wilderness Resort.  It was a lot of fun.  Jake loved the water and all that they had for him to do.  Vinny had lots of fun too.  The very first ride we went on was a raft ride through a dark and winding tube.  Once we got to the end where there was light, I looked at Vinny and he is sitting with his arms straight out in front of him and his mouth wide open.  He loved it!!! 

It was great for all of us to get away as a family and have a little fun.  Here are a few photos of our family vacation.  Of course, no photos of me....again!  :)

First day of school!

Last week Wednesday Jake started 4k.  He had a great time and almost started crying when he had to leave.  He was totally ready for school and we had no problem whatsoever leaving eachother behind for a few hours.

Here are a few pics of Jakes first day............

School Daze.....

The buzz is in the air here in the Kroll house, and no, it is not the fly literally buzzing around me.  Where is the fly swatter when you need it.  Anyway, the buzz I speak of is for the 1st day of school.  Yup, my little boy who I can still picture taking home from the hospital just 2 days old, the one who was standing at the bottom of our stairs at 10 months old trying to climb for the first time, and the one who just this summer started coming into his own little man, is starting 4k tomorrow.  I can't believe it.

It is a bitter sweet moment.  On one hand I am excited, because he will have such a great time learning and being around kids his own age and on the other hand I know I am going to miss him.  

I knew this day would come sooner than later; and as I shed my tears as I exit his classroom tomorrow, I will think of my little boy and all the fun and exciting things he will embark on in 4k.

Have a good first day Jake!

Photo Friday!

Chippewa Falls, Wisconsin freelance photographer Tony Wilder captured the northern
 lights over Lake Wissota on Tuesday.

I thought this was a very pretty picture that I found in the Journal Sentinel

A WOMAN ........ VERY SPECIAL & BEAUTIFUL!

This is a very inspirational video.  You don't even need to understand the language, to understand the meaning behind the video.  What a wonderful women!

2010 HPE Conference & DC - Day 1

SUNDAY - Travel Day

Left the airport at 8:13am.  The flight went very well.  Our flight lasted only an hour and forty minutes. Going into this trip I assumed Vinny would be a bit fussy on the plane.  Boy, was I WRONG!!! :)  I couldn't have been happier with my little traveler.  I don't know if I was happier that he did so well, or that I did so well.  (I'm not a great flier.)  He sat so nice and often turned to other passengers to show off his big, beautiful smile.  He certainly attracted a lot of attention.  

We arrived at Washington Ronald Regan Airport without a single problem.  Since we where ahead of the shuttle schedule we had been given, we decided to take the Metro to get to our destination.  I had never been on a subway before and my mother had only been on one once before.  However, we where very pleased to find out that it was very easy to navigate.  Once you know a few simple pointers, its not a problem at all.  I do have to say, I enjoyed it quite a bit. 

So as my mom lugged the luggage around (thanks ma), while I pushed Vinny in his stroller, we made our way to the National Institute of Health (NIH).  Once we arrived we went through a security checkpoint and then where shuttled over to The Children's Inn.  To quote Bridget, another HPE mom, "the Children's Inn, is like the Ronald McDonald house on steroids."  It truly is an enormously beautiful place for families to go and stay while receiving treatments.  We had been given the opportunity to stay here while attending the conference and I couldn't have been more grateful. 

After a few hours of traveling on trains (is a subway a train?), planes and automobiles, needless to say we where exhausted.  After we got checked into our room, we decided to take a much needed nap.  Just so happened, that during our nap, Maryland experienced what is called a "straight line wind storm."  It knocked out power to thousands of homes, over 200 street lights, and what we would soon to find out gas stations and grocery stores.  We of course where not aware that this even happened until we took a cab to go get some milk for Vinny.  Every turn we made, we had to turn around because there where FULL SIZE trees pushed over at the base.  We couldn't believe what we where seeing.  I myself have never seen anything like that. 

Our first day was quite eventful!  We hit the hay early anxiously awaiting what tomorrow would bring and the many families we would meet.

Getting ready to take off!

At the Metro station. Just arrived in Maryland.

Just checked into our room at the Children's Inn.  Vinny hanging loose.

Entrance to the Children's Inn

This is a small portion of the building.

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....

Therapy Update

Well, it has been officially 6 months since Vinny has started his OT and PT therapy.  I can't believe how far he has come.  Going into his first appointment, Vinny was a tight fisted, tight muscled, and tense little boy.  Today he is the complete opposite.  It is so wonderful to see his hands opened, trying to grasp for objects; and I've never seen the full length of his arms until just recently.  He has so much more range and mobility, and I couldn't be more thrilled.  Just this past Monday, Vinny had one of his best appointments ever.  His wonderful therapists, Dawn and Heather, could not believe some of the things he was doing.  He was standing with great posture (with support of course) and reaching for toys.  You could tell how proud they were of him.  I too am so proud of Vinny.  I have never seen a child more determined than he is. 

Of course, he still has more to work on, but I know that with more time he will be able to do so much more.  He will be starting another 6 months of therapy and I can't wait to see what develops in that time. 

GREAT WORK VINNY!!!  I LOVE YOU!!

Week of firsts.......

This past week was a week of a few firsts for our family.  Vinny had two PT/OT appointments this week that went extremely well.  This is definitely a first for him.  We decided that I would not be apart of the appointments in hopes to get him to cooperate more.  Well, it worked and I couldn't be more pleased......and I get an hour to myself!!!!!!

Jake had a few firsts too this week.  He started swimming lessons on Tuesday.  He was a bit scared to get into the water, so Tony had to hold him most of the time.  I'm hoping that as he goes more he will get a little better.  But regardless, he had a good time...which is all that matters to me!  Vinny also had a good time.  We sat by the pool and he screeched his happy little screech the whole time.  He loved seeing all the other kids and the splashing water.

Jake (in black) and his coach

On Friday Jake also started soccer. We signed him up for U4 through the YMCA. He did AWESOME!!!.....which really was no surprise to us because he has had a soccer ball at his feet since he started walking. It was so cute to see him amongst other kids doing what he does best. And, of course, what is a soccer practice/game without the rain. It started raining about 20min in, which Jake thought was so cool too. Tony and I enjoyed watching him so much and I can officially say that I am a soccer mom!!!

Practicing his foot work

Watching from the sidelines

Another first for our entire family was having family photos taken.  One of Tony's customers invited us over to her house so that she could take our family photos.  We took them outside in her beautiful backyard.  The kids did great.  I have one of the photos from her, but she took over 200 images and will be mailing them to me on Monday.  I can't wait to see them.  I plan on finally doing a photo wall to showcase my awesome family!

Todays OT/PT Appointments

So this was my view today at Children's Hospital while waiting for Vinny in his OT/PT appointments.  Let me tell you, since starting these appointments for Vinny, I have longed for the day that I would be able to sit next to this piece of art and just relax and enjoy the peace and quite.  Finally, the therapists kicked me out of the appointments and decided to work with Vinny without me in the room.  The idea behind this is to get better participation from him.  If I am in the room he screams the ENTIRE time, either because he doesn't want to be doing what he is doing, or mainly because I am not holding him. 

Going into this appointment today, I was really feeling as if these appointments where becoming pointless.  Don't get me wrong, Vinny has improved since the start, but lately we have been getting nowhere; since he would put up a big fuss from the time they started working with him.  I would leave the appointments just as exhausted as Vinny was from his crying...or should I say screaming.  That is why today was such a relief.  Even better, once the appointment was over with, both therapists said he did soooo well.  He finally cooperated for them; and even donned his sweet smile and laugh at times.  This makes me VERY happy!!  Hopefully this is the beginning of some more enjoyable appointments and even more progress.  As much as I would love to be in the room when Vinny does something new, I think we are all better off if I just stayed away.

It MAKES a Special Family!

"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown


Thank you to Tara at kidz for allowing me to re-post this.

Dirt & Dozers!

Tonight my mom and I took the boys for a walk.  Jake was feeling a little sad today because Tony has been out of town and he misses his daddy very much.  So we took him to one of his favorite spots in our neighborhood; a place Jake likes to call "the dirt".  It's really just the new portion of the subdivision that has no homes yet. In part of the area is a little pond that he likes to throw rocks into.  So we headed to the dirt, threw some rocks and then ventured our way down to another construction site in our neighborhood and got up close and personal with the huge dozers.  I was glad we went and did this tonight.  It brought a smile to his face that I had not seen all day!

Jake at "the dirt"

Vinny enjoying the ride

On the dozer

Jake & Nonna

Jake & Vinny inside the shovel

Sitting inside the tire

Resting after our walk

Vinnys New AFOs

This past Monday Vinny received his AFOs (braces).   The reason behind this is to train his feet to relax and straighten out a bit.  He tends to scrunch his toes and feet upwards and to the side.  Hopefully these braces will help.  After spending a few days wearing them, I am really not too sure of this idea.  I just don't see how it is going to work.  But we will give it a try and see where we end up.