Fun at the park!

After Andrew's birthday party, Hannah and Julia wanted to have a playdate with there cousins, Gretchen, Lauren and Noah! We went to the park and had a great time! (not just the kids!)

Andrew's Birthday Party!

We had Andrew's party at the fire station on Saturday. It was so much fun! The guys at the station were very nice and full of hospitality. They left twice for a call but other than that they spent the entire time with us! Here are some picture's. Enjoy!

Look what I can do all by myself!

Tonight Andrew really surprised us!!! Check it out!


My Montage 4/4/08

When he was done, he fell on him bum and look at me and giggled. He said "Fun, walking Fun!!" Oh it made me cry!

Happy Birthday Andrew!

Andrew is 3!! Can you believe it? We took him out to the Ground Round because the girls thought it would be fun to have them come out and sing to him. He was unsure but loved his ice cream!!!!

Welcome Home!

We finally got to meet my neice, Cadence. Jon and Holly came home from MN for a week. It was way to short a visit! I have decided that they just need to move home! We all miss them very much and wish they were much closer. This is the first time that all the cousins were together at one place!!! Here are the ten of them. Micaela, Sarah, Hannah, Julia, Briget, Andrew, Kasey, Aidan, Cadence and Lucy!

Welcome Lucy!!!

The day before we left for Philly, my brother and his wife had a beatiful baby girl, Lucy! She is so cute and tiny!

Our appt. for Andrew in Philly!

We love this doctor. It seems like we FINALLY found a Dr. who is willing to help our little man! He spent a lot of time with us as did his team. So the scoop. Andrew is 1 in 1000000. He has a very rare case of DMD. He wants to do more testing on his muscle that is left over from his muscle biopsy. We are unsure what they will be looking for but have a call into him to find out. They also would like us to participate in a study at Columbia University. If anybody would like to read more about it, here is the link. ( http://www.columbia.edu/cu/md/index.htm )We will be starting Andrew on steroids in the next few months. The doctor does not know how he will react but we will track his progress here for 3 months and then go back down to Philly for a follow up. He had his transition meeting a few weeks ago and he has received a one on one aid for the upcoming school year. That is rare to get in EEE as there is a high teacher to student ratio but they felt he needed it, as did we. We will update you when we get more information!

Aquarium Pictures!

When we were in Philly, we took the kids to the Adventure Aquarium in Camden, NJ. They loved it! Here are some pictures! Enjoy!

Going to Philadelphia!

For those of you who do not know, we are heading to Philadelphia to see a specialist for Andrew. This doctor is going to look at Andrew as not just a boy with Duchenne Muscular Dystrophy, but a boy who may also have something else going on. The doctors around here are summing up all his symptoms into one. But like most of you know, he is not the typical diagnoses. A boy usually is diagnosed between 4-7 years old. They develop normally and then start gradually having issues with stairs and falling alot. Andrew will be 3 April 1st and he is still unable to walk unassisted. He cruises on furniture and mostly he scoots all over on his butt! We have look country and world wide to find a family who's child had DMD and is still not walking at 3 and we have yet to find anyone even close. Hopefully this doctor will shed some light onto our situation. We are all going as we will try to make this trip into some fun with the kids. We plan to go to the aquarium and maybe the zoo. There is also a childrens Touch Museum there so if we have time, we will check that out! We leave on March 12th and come back either the 15th or 16th. Please keep us in your thoughts. Hopefully we will get to see Tony's sister Amy when we are down there. She is only about an hour away!!!

FYI on MDA Fundraisers!

I will be sending emails out when we get back from Philadelphia about the MDA Stride and Ride! It is scheduled for June 8th at Oakledge Park! Mark your calendars if you want to join our team or possibly start your own. I am trying to recruit new teams this year!!! Also there is a fundraiser coming up soon. Here is the information:
MDA Fundraiser: Hockey Game
local firefighters and police play to raise money for the MDA.
Saturday March 22, 2008 at 1pm.
Cairns Arena in So. Burlington, VT.
Donation "boot" at the entrance.
Call PFFV State Office at 802-652-0085 x108 for questions.