Following Vinny and his diagnosis with Semilobar Holoprosencephaly (HPE)....and the rest of us Krolls!!
Monday, April 26, 2010
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.
Saturday, April 24, 2010
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.
Friday, April 23, 2010
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 |
Thursday, April 22, 2010
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.
Sunday, April 18, 2010
Just Horsing Around....Weekend Photos
Sunday, April 11, 2010
Easter - A little late than never ;)
We had a nice Easter. The boys had a couple Easter Bunny's this year and each got 2 baskets full of goodies. Tony was not forgotten and received one of his own. We then spent the afternoon with Tony's side of the family and the kids got to enjoy an Easter egg hunt. I had fun running around with Jake trying to get as many eggs as possible. Later in the day we came home and had dinner with my family and then a very relaxing evening.
Just a few photos from Easter....... (p.s. Sorry for the odd locations of my photos...I just can't figure this out)
Just a few photos from Easter....... (p.s. Sorry for the odd locations of my photos...I just can't figure this out)
The boys and their baskets |
Vinny loved playing with the grass |
Jake and one of his baskets |
Vinny was trying so hard to grab an egg |
Family Photo :) |
Relaxing on Daddy! |
Easter Egg Hunt |
Easter Baskets From Me |
Only half of Jake's cousins |
New sunglasses from the Easter Bunny |
Tuckered Out!! |
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