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.

MDA Bowl-A-Thon

The Burlington Firefighters held a Bowl-A-Thon Sunday night and Monday morning at Champlain Lanes. We were asked to go so they could meet a family that they are helping. Of course, we always jump on the chance. We went and we had a great time. It was so great to meet some of the firefighters! The girls got to Bowl and Cheer lead! Andrew just hung out with his fire hat on! He wouldn't take it off! Thank you to the Burlington Firefighters, especially to Jamie for all the work he does!

Oh Boy! Or should I say Oh Girls!

Look what Andrew's big sisters did!!! Julia was especially proud of the necklace she put on him!

Curls No More!

My mother recently gave me a hair straightener. I have been doing my hair but the other day, Hannah wanted to see what her hair would look like without the curls! Wow, did she look different!

Hannah's Science Fair

A few weeks ago Hannahs school had a Science Fair. We were not going to go because we had spent a few hours up at the hospital that day for Andrews heart appointment. We got home and Hannah said we "HAD" to go because her class did something for the Science Fair. So we ate a quick dinner and off we went! We stayed at her classrooms project the entire time. It was basically a huge "Mouse Trap Game"!

Random thought in my head

I will be the first to admit that I never really noticed if a business was handicap accessible or not. But now I notice all the time. I have to. I have to think about these things everyday. This is what my future holds. I am not complaining about it, don't get me wrong, but my life has changed. I look at things in a different light than some people do. Today, I stared out my door looking at the sun shine through me. I felt the warmth and I smiled. I enjoy the little things in life now. Things I used to take for granted. Just remember, there are other people out there with a much harder life than you. I went to dinner with my aunt the other night. We had a great time! But when we first got there she sat down and handed me a check. Now I told her she didn't have to pay me to got to dinner with her!!!! But she said there was a story behind it. She told me she has a client who got layed off his job awhile back and has yet to find a job. He was down, didn't have alot of money and was just overall feeling like his life couldnt get any worse. My aunt told him she knew how he felt but to remember there is always someone worse off than you. She continued to tell him about our family and the struggle that we are going through. My aunt had a picture of Andrew and showed him and he was amazed how young and innocent he was and the challenges that he was going to have to face. He asked my aunt if he could cut his picture out and keep it so everytime he was feeling down, he could look at Andrew and think, wow, I really don't have it that bad. My aunt gave it to him and when she did, he took out his wallet and gave my aunt some money. He said to give it to us and get something we may need. Our story gave him inspiration and he was thankful to us for that. My aunt was so touched she doubled his gift and gave it to us. I want to teach my children the power of giving. Its an amazing gift.