Busy, Busy....

Well it has been quite some time since I have last blogged.  These past two weeks and going into this week have been and will be busy weeks. We have had a few extra appointments than the typical two or three at Children's Hospital every week.  Vinny had a speech therapist come to the house to evaluate him.  They seem very positive that he is in the right direction.  He babbles a lot and has been making many vowel and constanant sounds.  We try to get him to say Dada and he responds to us with "da" :)....which of course makes Tony happy.  Why is it children always say dada first even though its usually primarily mama that is around them?  Oh well, I guess.  I'm just glad he is trying.

Like I mentioned, we spend lots of time at Childrens for Vinnys OT and PT appointments.  He has been doing very well.  For the first time since he has been born, he is starting to enjoy tummy time.  He is really trying to make an effort to get up on his elbows and hands and move around.  I am so proud of him.  He is becoming stronger everyday and it's just wonderful.   I look forward to seeing him advance more and more in the future.  It will take time, but I know he can do it.

Just last week Vinny saw a physical medicine doctor.  A piece of me does not feel comfortable with what the doctor had to say and offer.  I guess it is nothing serious or anything that; I just had a weird feeling about it all.  First the doctor mentioned something about considering Vinny as having CP for "insurance reasons"....whatever that means.  I guess it was just a new term for me that caught me off guard a bit.  When I think of Vinny and his diagnosis, I just think of him having HPE; not HPE and CP.  Anyways, the doctor also suggested that Vinny start taking Baclofen to help with his tone and spasticity.  I'm not too keen on this because I really didn't want Vinny to have to rely on a drug for the rest of his life.  On the other hand, I want what is best for him, and will do anything that needs to be done to help him in any way.  I struggled with filling the prescription until I had gone to mass on Sunday; and the priest litterly said "fill the prescription, it will help" during his homoly.  WOW!  Of course he was referring to the bible as the prescription and listening to the bible will help you.....either way, it was the reassurance I needed that it was okay to fill the prescription for Vinny.  Its amazing how those things happen sometimes.  So Vinny is now on Baclofen.  I will update on how it is going in upcoming blogs.

Also going on in the Kroll lives is a little bit of construction.  Tony (and Jake 3y.o) started construction on the boys room.  It is coming along very nicely.  I can't wait to have them in their own room together.  It will make life much easier and give Tony and I an opportunity to get our together time back to normal like it was before we moved here.  Tony and I like to collect TV sitcoms, such as Friends, and enjoy relaxing on the couch together and watching them after the boys go to bed.  So, I purchased the next season of How I Met Your Mother for us to start when construction is completed.  I am really excited.  I will post pics of Jake and Vinnys new room once completed. 

Also taking up a lot of time these days is my school work.  Since I last blogged, I have started my classes in Medical Transcription.  Everything is going well and am receiving A's and B's as of right now.  It is quite a challenge trying to get school work done between nap times and after the boys go to bed at night....but I am managing.  I am just looking forward to having completed it all and being able to contribute financially to our family.

Well, I hope this is just one of many more blogs to come.  Its so nice to have a place to unload sometimes.

Stay tuned........... :)

About My Blog....

I initially started this blog as a way to follow the happenings with Vinny and his diagnosis with HPE. But last night as I sat in bed I thought about the fact that I haven't really had to update any information regarding Vinny's healthy. We have been very fortunate enough that his condition so far is only limited to his developmental delays. Since he started his OT and PT, we have just had improvements and are so thankful that his condition has not worsened in any way. Since starting his therapy he has improved with his trunk support, opening and closing his hands, picking up toys, tummy time (which he still hates...but is getting better at) etc. We are so very proud of him!!

I enjoy writing this blog. It is a way to express how I am feeling and what I am thinking...and if I have a crazy thought or idea, its a place I can go to express them. So, my thought is, instead of making this blog all about Vinny, I've decided to write about anything and anyone I feel like. I have two other very special people in my life, that being my husband Tony and my son Jake and I look forward to sharing them with you.

So stay tuned. I have lots more to write about!!!

Vinnys 1st year!

For all the HPE and Special Needs moms that follow my blog and for any new readers who haven't watched Vinny grow this past year, here is a small photo album for you to view.  I look forward to doing this every year.....

Make a Smilebox slideshow

Vinny's Smile......

Since the day Vinny was born there is one thing that hasn't changed; and that is his smile.  I truely do have a happy boy.  Today I was playing with him on the floor and thought about the fact that he is always smiling....and always has that twinkle in his eye.  I love it!!!

Soooo...I thought it would be fun to blog about the many reasons for his smile.

Vinny Smiles When......

* you tickle his toes                    * you help him walk and chase his brother
* he watches commercials           * you sing to him

* you bounce him                       * you play peek-a-boo
* you put him in his jumpy chair  * you feed him
* you play with him on the floor  * you smile at him

Many people also make him smile.  Here are just a few of Vinnys favorite people.

Vinny loves his Daddy.  He knows how to make him laugh with lots of kisses and tickles.  Daddy likes to pretend he is wrestling with him and Vinny loves this!  He also likes to put Vinny on top of his shoulders and this always gets Vinny to smile.  He feels like such a big boy!

 Vinny loves his brother too.  He gets so excited when he sees Jake.  Jake is so sweet to him and almost always trys to include Vinny when he plays by showing him his toy or asking Vinny to chase him (with the help of mom, of course)....this makes Vinny laugh so hard.  He LOVES when we do this!

Vinny loves his Nonna (grandma).  She is the only one that he absolutely loves to slobber all over her face....with kisses of course ;)  It is actually quite cute!  Nonna sings to him, rocks him and tells him lots of storys while he sits in his chair and watches her cook. 

Of all of Vinnys favorite people, we can not forget his Nonno (grandpa).  Nonno absolutely LOVES Vinny!  Vinny smiles anytime he sees his Nonno walk into the room.  Nonno plays peek-a-boo with him, sits with him and gives him sooooo many kisses....but Vinny never minds!  You can tell his Nonno is very special to him.

Vinny is my Holland.....

I was reading a blog of another HPE Mom and came across this story she had found.  I thought I would post it because it reminded me of the feelings I had when I first found out about Vinny and HPE.   Vinny is my Holland!!

WELCOME TO HOLLAND


by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David.The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

First Day of Therapy.....1/4/10

Today was Vinnys very first day of Occupational Therapy.  I was actually very excited for today.  Anything that may help Vinny I am excited for.  For the most part it went very well.  Vinny is not a fan of other people holding or touching him...especially when mommy is in view; so needless to say there was also a lot of screaming going on. 

Our Therapists name is Heather.  She is such a wonderful women; so nice and caring.  I feel so blessed to have such great people working with Vinny along with one of the best Childrens Hospitals in the country.  Today Heather worked with Vinny on some stretches for his arms and neck along with some core strengthening.  I look forward to the day that he is doing them all on his own.  Patience...I know :)  For the rest of the week we are going to be practicing a lot.

Vinny will continue OT every week until May.  Hopefully he will start his Physical Therapy soon and we will be able to do both at the same time.

I will keep everyone posted as Vinny progresses with his therapy.

I'm posted a picture of my big brown eyed boy practicing sitting in his brothers snow tube!

Meeting with the Neurologist

Today we took Vinny to the Neurologist.  This appointment went really well and Tony and I felt very content with the information we received.  We viewed the results of Vinnys MRI; which I thought was very interesting.  Now that I have an idea of how his brain developed, I feel as though I understand his condition better.  The neurologist did say to expect the worst; which we have...but I have real HoPE for Vinny that he will progress in a positive way.  He may not talk and he may not walk.....and I am fine with that. 

I joke saying that now I have a reason to keep one of my boys living with me forever!!!

Monday he starts Occupational Therapy.  I'm looking forward to it.  I can't wait to start working with him and the therapists in hopes to improve Vinnys develpement.