The Five of Us!

Trip to Philly...

2009-03-29T11:11:00.000-07:00

Andrew’s doctor appointment in Philadelphia was very long but informative. His appointment was at 10am and we didn’t leave the hospital until 5pm. We still love this doctor. He is so good with Andrew and he seems to really care about him. It gives me great comfort in knowing that we finally found a doctor who we feel is the most qualified to help us out.
I will try to summarize this appointment as quick as I can but there is a lot of information to tell. The nurse came in and caught up on getting any new information and any new concerns we may have. We talked about getting Andrew a wheelchair (based on schools suggestion) and the answer was NO. If you put him in a chair now, he would think it’s a toy and never want to get out of it. He needs to use his muscles now! We were relived to here that as we were not ready to start that process yet.
We then saw the nutritionist and she said we were doing everything good. He was eating the right about of calories, protein and fluids! That was good to here! We were concerned about how Andrew sometimes fatigues while is eats and seems to gag/choke. She suggested we have a swallow study done and see if its texture related or there is an actual problem. She did say that he would probably have a harder time with liquids instead of solids if it was muscle related because you use more muscles to swallow liquids than solids. Totally opposite that what you may think.
Then Dr. F came in after reviewing the case with the others. He said when we came down for his first visit, he heard our concerns about possibly something else going on but wanted to see his development progress for himself. He described to us that there is a range of DMD boys. Some are not too affected, some are average and some are severely affected. That first visit he would have put Andrew in that severely affected category with nothing else going on but it didn’t escape his mind that there could have been something else going on. Our second trip down, he said that he would still keep him in that severe category but the more he looked at his weakness he was really wondering if something else was going on but wasn’t quite sure. This trip down, he came in and said, “There is something else”. Andrew doesn’t move like a DMD boy, although he is very weak and his body is tired all the time. The dr. also noticed Andrew lying on the floor instead of sitting and resting his head on his arm instead of holding it up. He also said that if we came in without having a diagnosis of DMD, he wouldn’t think to test for that.
The doctor is also concerned about his growth. Andrew keeps getting further and further off the chart in the downward motion. He is extremely short and now the doctor is trying to focus on “the other unknown.”
We had x-rays done of his hip, pelvis, hand and spine. They want to see if there are some abnormalities with is bones. They are concerned on how he folds his hands and wrists up and is always fisted. They also are doing a urine test. They are testing for MPS or Mucopolysaccharides diseases. I haven’t read up to much on these because what I saw was too scary but it has something to do with how your body handles certain enzymes. It seems to affect liver and spleen. It’s very rare. They are also doing a DNA slide, which was a blood test, and that is like throwing out a fishing net and seeing what we catch. It’s pretty scary not knowing what they are going to find if anything. The x-rays and urine test we should know about this week and the DNA slide will take about 6-8weeks on average.
The PT came in and agreed with the dr. about NOT getting a wheelchair at this time. She wants Andrew in pool therapy all the time rather than half land and half pool. We will keep him on the steroids for now until we find out these test results.
Please keep Andrew and us in your prayers.

2009 Vermont Goodwill Ambassador!

2009-03-01T09:27:00.000-08:00

Our little man was selected to be the MDA's Vermont Goodwill Ambassador!!

Andrew's testing results...

2009-03-01T09:06:00.000-08:00

Here is the latest on the ongoing medical confusion....
EEG.....He had an EEG done to monitor his staring spells he has. The problem...the EEG only lasted 43 minutes. The chances that the EEG would catch one of the the staring episodes in that time frame was extremely rare. Of course the Dr. here (the one we don't care for at all) said that it was normal but that unless it caught the actual episode it would show normal. So I asked about doing a longer one and he denied the test and said UNLESS there is ongoing concern he is happy with the results. School has been continuously concerned of these episodes so I might have to have them write a letter or something. Apparently a parents concern is not enough for this doctor.
SLEEP STUDY...That was a long night! But they ended up doing an entire EEG for the entire night. We should get the results on this Friday. We are glad they did a full EEG with the sleep study (they normally don't) but because he has these episodes when he is awake we are unsure on how and what the EEG will show. I will update about this on Friday.
MUSCLE TESTING...All I can say is frustration!!!!! When Andrew originally had his muscle biopsy, which was in the Spring of 2006, we were told that they took enough muscle so if any other testing had to be done, there would be some frozen at the lab. Well Dr. F, in Philly (who we really like!) requested to original muscles slides. He wanted to make sure these slides were consistent with DMD. He contacted me and said the are consistent with DMD but he wanted to do some more testing so he wanted me to request the muscle from the lab and have it sent. I contacted the lab and a week later they got back to me and said there was no muscle left. They used ALL the muscle during the original test!!!! So now we are left with doing another biopsy. We are very much undecided if we are going to do this or not. We go back down to Philly at the end of March so we will talk with Dr.F then about it.

If you are still reading, thanks for hanging in there and also thanks for your continuing support!

Quick Update

2009-02-02T17:31:00.000-08:00

The sleep study got cancelled at the last minute last week so we are re-sceduled for a month out. I just hope we get the results by the time we go to Philly. We are on the cancellation list but I guess they don't get alot of cancellations. Tomorrow we go for his EEG. This is due to his starring spells. I am not sure if we get the results tomorrow but I will let you know. We have to keep him up late tonight and get him up early tomorrow so when we go in, he is pretty tired. He thinks it's pretty cool that he is up past the girls!!!

Update on Andrew.....

2009-01-23T17:44:00.000-08:00

For those of you following Andrew I wanted to try and give you an update as to what is going on here. First off, I received an email from Dr.F. (Philly Dr) and he was in contact with Dr.B. (VT Dr.) about getting the muscle that Andrew had biopsied when he was first diagnosed. We thought that was already done after our first trip but apparently Dr.B didn't do it so Dr.F. got a hold of him on his own and requested it. They want to look at this to make sure that they don't see any other conditions with the muscle that could also be contributing to his weakness. Second, is that when we go back down to Philly in March, they will do a gene slide to look at Andrew's entire DNA. This will look at ALL genetic flaws and if there IS something else genetically going on, they will find it with this test. We did have his autism screening done and they found him to not be on the spectrum based on his ability to be extremely social. What came out of that appointment is that the school and us have reported that Andrew stares off once in awhile. They want to make sure Andrew is not having seizures when this is happening so we have to go for an EEG on Feb. 3rd. We also have to go for a sleep study on Jan. 29th. So that's the update as for now. Things are always changing so I will do my best to keep you all informed!

Happy New Years!

2009-01-23T17:36:00.000-08:00

We decided not to travel this year for New Years and stay home. It was very nice but still managed to be busy! We went to Beth and Brians on New Years Eve! We had a blast!

I can't believe she is 8

2009-01-23T17:27:00.000-08:00

Hannah turned 8 on Dec. 27th. She has been counting down the years till she turned 8 so she could come to BINGO with me! After dinner we went to BINGO. She loved it!

Dream Job?!?

2009-01-23T17:15:00.000-08:00

Beth, my sister-in-law and I LOVE to bake. We always get together and bake a ton of cookies during the holidays. We both LOVE making cakes for our kids birthdays! Not just a cake in a pan and frosted but actually a shaped cakes, fun cakes that the kids will remember! This year Beth found this GREAT cake store in Plattsburgh. We went alittle nuts in there and bought this pan that was, can I say, a little to much! We also bought some fondant that we wanted to experiment with. What fun that was. Jenny had posted about a dream joy, this would be mine. I would love working with Beth side by side doing this stuff. We bounce idea's off each other and have such a good time doing this!

Cousins!

2009-01-23T17:11:00.000-08:00

We decided for Tony's mom this year we were going to get all the grandkids together and take their pictures! That was a funny night! Enjoy!

Christmas! Better late then never!

2009-01-23T17:00:00.000-08:00

We had a wonderful Christmas this year! Everyone was healthy and in good spirits! Andrew actually walked out of his bedroom and into the living room this year! It was a very touching moment and a overwhelming feeling of accomplishment! Here are some pictures!

Visit with Santa!

2008-12-19T14:08:00.000-08:00

We took the kids to see Santa on Wednesday! It was great! This is the first year that Andrew would "walk" up to see him! He walked up with his arms open wide and crawled right up on his lap! It was wonderful to see! The girls asked for knitting kits and Andrew asked for a car! (hopefully a toy car!)

Christmas Craft Project

2008-12-11T06:46:00.000-08:00

Hannah and Julia wanted to make our own Advent Calendar this year. They thought it would be fun to do together! They had this idea in their heads so I gathered materials together and we spent all day a few weeks ago from 11-6pm working on this and it still wasnt done!! So I finished it the next night! It was done by December 1st! Even Andrew got in on the action!

This is in the beginning of the month!

This is on Christmas morning!

Santa!

2008-12-01T17:25:00.000-08:00

***A Warning: Parents who have small children who read, make sure they don't***
Now that that is out of the way, here is my story of the night. Tonight, the kids and I were at the dinner table eating our dinner. Here is our conversation!
Hannah: I don't believe in Santa!
Me: What, why?
Hannah: I have never ever seen the North Pole on a map.
Me: Why sure there is a North Pole.
Hannah: Then show me.
Me: After dinner!
So after dinner, I signed onto the computer and showed her the North Pole on the map that I found.
Hannah: There is no land there, its just water.
Me: No Hannah, let me find another map.
Thank God I found this: http://www.aaccessmaps.com/show/map/north_pole
Hannah: WOW, I certainly believe now!!!

Update on Andrew's Philly Appointment

2008-11-19T17:54:00.000-08:00

We finally have a doctor who is willing to look into Andrew's issues. We have wondered for a very long time if "something else" could be going on with Andrew. We have always been told No. But one thing we knew is that he never fit into his diagnoses. Now, he definetly has Duchenne Muscular Dystrophy (DMD) but his weakness doesn't really fit specifically to that diagnoses. See, DMD first affects the pelvic area and down. But Andrew has always had alot of upper body weakness. That is what we first noticed about Andrew. He wouldn't use his arms and he didn't have alot of head control. DMD would act in the reverse. So now we have a doctor that is agreeing that something else is going on. He doesn't like the fact that Andrew has a very weak neck and arms. It would be extremely rare for a child to have 2 genetic disorders, BUT this doctor is finally saying they are going to have to look into that possibilty. So here is where we stand now. Andrew is going to have a full Austistic screening done. He has some attention issures, sensory issures and some OCD issures so they want to test to see if he may be on the spectrum. Even IF that comes back positive, the DR. agrees that there is something else. He isn't quite sure what yet but is having a meeting in two weeks with a bunch of his collegues and Andrew will be on the top of his list of kids to talk about. We are going back to Philly in 4 months. In the meantime if any testing comes up, I will keep you all posted. We are excited to have finally found a Dr. that is listening to our concerns but also we feel like we've been hit by a truck. We just want answers. If you can say a prayer for Andrew, that would mean the world to us! Thank you for all your support!

New York City!

2008-11-19T17:41:00.000-08:00

Imagine: 8 kids, 4 adults, NYC.

Crazy, you ask? Yep! We did it! It was so much fun! Here is a picture of the start of our adventure! Leaving the hotel!

We stopped at Toys R Us and went on the indoor Ferris Wheel! That was so much fun!

We then went to Radio City Music Hall to see the Christmas Spectacular! That was amazing! If you ever get a chance, GO!

After the show, we went to the M&M store. Julia spent $13 of her $20 on the smallest bag of M&M's. Things were VERY marked up there but the kids had fun. We then crossed the street and went to the Hershey store. (my personal favorite!)

After a fun adventure we decided to head back to the hotel. Once we found Port Authority, we found our bus... Bye Bye New York City!

This one is for you Dad!

2008-11-12T08:19:00.000-08:00

Usually I only post when I have pictures to post. But it has come to my attention, thanks Dad, that he wants me to post more frequent! I will try my best to keep the blog updated even if I have no pictures to post! I have finished packing for our trip. The car is packed and now I just wait until the kids get home from school. I am doing some last minute cleaning before we leave. I think it's so much nicer coming home to a clean house rather than a messy one! I don't think I will have a chance to post about NYC of our trip to CHOP until I get back! Wish us luck and that the Dr.'s think Andrew is doing well and not declining!

Tag - I am it and so are you!

2008-11-08T05:22:00.000-08:00

Jen tagged me, which means that I get to share 6 interesting facts about myself and then "tag" other blog friends to share their own facts. I tag Heidi, Cara, Shannon and Heidi!

1) I have always wanted to be a Marine Biologist. I wanted to train whales or dolphins at Sea World.

2) Ashamed to say but this President election was the first one I voted in. But I am really glad I did and will continue from now on!

3)After my first date with Tony, I came home and woke my Mom up. I told her that I was going to marry him one day! Strange how you just know!

4)I hate to fly! I mean HATE! It makes me so sick to my stomach. I rather drive or take a boat!

5)I am a goody two shoes! I have never even tried smoking!

6)My favorite moments of my life were getting married, my children's births and watching Andrew walk for the very first time without his walker!

Julia's party!

2008-11-07T16:34:00.000-08:00

After Julia had her friends party from 1-3, we had a few hours to rest and then we had her family party at 6pm. She wanted a heart cake with pink, blue and purple! Her favorite gifts were her lipstick and nail polish and her footy PJ's.

Halloween!

2008-11-07T16:28:00.000-08:00

We had a fun time! It's always a crazy day when it's on a school day. The kids got home from school and we got them dressed and off to Nana and Gramps house we went. We were there all of 10 minutes and then we went to see Grandma! Then we rushed home, ate dinner and the kids went with Dad to trick or treat! I stayed home and handed out candy and started making cupcakes for Julia's kid party the next day and her birthday cake for the family party the next night!

Pumpkin Carving!

2008-11-07T16:23:00.000-08:00

We always have a great time carving out pumpkins! This year we cut back and only got one! Gotta love the economy! Anyway, it was so funny this year. The girls usually don't like scooping out the inside of the pumpkin but this year, they loved it! Even Andrew was saying, "gross"! It turned out good but it looked like a chubby pumpkin!

Julia turns 6!

2008-11-07T16:17:00.000-08:00

I find it so hard to believe that Julia is 6! Where has the time gone? On her actual Birthday, we just hung out at home after school. She wanted "breakfast" for dinner so we made pancakes with strawberries and whip cream, bacon, eggs! Grandma came up to help us celebrate! We had Oreo pie as a "cake"! She loved it! She also loved the snow we got that night!

Philadelphia trip in 2 weeks!

2008-10-30T06:17:00.001-07:00

We are going back to Philly to see Andrew's doctor. We are very nervous about this appointment because Andrew's PT here thinks he may be starting to decline. His hamstrings are tightening up and his calf's are enlarging. This raises a lot of questions for us. Hopefully we will get some answers.

One good thing about our trip in that Grandma is coming and has bought all of us tickets to go to Radio City Music Hall to see the Rockettes Christmas Spectacular! Tony's sister and her 5 kids are also coming! It will be a nice diversion for us! And the kids are super excited to go into New York City!

Harvest Festival Part 2

2008-10-30T06:00:00.000-07:00

There were lots of character there too! Also, this was Andrew's first time in a bouncy house. He wasn't sure what to think and decided he was "scared" and wanted out!

Harvest Festival Part 1

2008-10-30T05:57:00.000-07:00

We had a wonderful time at the school Harvest Festival! Even though it was windy and cold we enjoyed all the games!

Fun in the leaves!

2008-10-30T05:41:00.000-07:00

How many of you remember doing this! Those were such fun times! I always remind my kids to enjoy being a kid!!!

Gram

2008-10-30T05:38:00.000-07:00

Tony's grandmother passed away at the end of September. This has been a very hard thing for our family. She was just such a kind, gentle women and really always brought the family together. We will miss her always.

We love our cousins!

2008-10-30T05:35:00.000-07:00

Look at all the kids! All of the cousin's on Tony's side watching Julia play soccer! It was a cold, wet day but they all made the best of it!

End of Soccer!!

2008-10-30T05:33:00.000-07:00

Here are the girls with there Trophy's!

My soccer girls!

2008-10-30T05:26:00.000-07:00

This year, both the girls played soccer! They really love it! But when the weather turned cold, I didn't like it so much!! Here are some pictures of the girls playing soccer.

MDA Telethon

2008-09-12T08:39:00.000-07:00

Just in case you missed our TV moment, here is the video they aired during the telethon! Just copy and paste the link below

http://homepage.mac.com/fox44/.Public/MDA/Angolanos.wmv

Andrew's 1st day of preschool!

2008-09-12T08:28:00.000-07:00

I knew all summer that this way was coming. I have tried to prepare myself but it was still a very hard day for me, but not Andrew! We got him up and gave him his medicine. We drive him to school in the morning and he takes the little bus home with the other preschoolers. He goes on Tuesday, Wednesday and Thurdays from 7:30-10:45ish. The first day was so easy for him. He went right in and got settled with this aid, who we love! When the bus came around the corner, you could see him smiling and biting his fists (he does this when he gets excited) I got he out of his carseat and he just cuddled up to me! He said "missed mommy"! Everyday since, he does the same thing and says "miss mommy". The last few days he has actually cried when we dropped him off. He recovers quickly but he always makes sure he tells us!

The girls first day at school!

2008-09-12T08:15:00.000-07:00

I cannot believe that I have a 2nd grader and a kindergartner! The girls are both going full days now. Its so hard to believe! They had a good first day! It was alittle complicated! Hannah opened her lunch up at snack time and ate her snack and noticed there was no brownie in her lunch. So she thought that for some reason, maybe I put in a brownie in Julia's lunch. She told her teacher so got the wrong lunch and she needed to go swap with her sisters lunch, so she did. The problem was Julia hadn't eaten her snack yet. So when she got Hannah's lunch, she chose something for snack which left her with not much for lunch including no drink! Then some little girl pushed Julia and took a play phone away from her so the little girl and Julia had to talk to the guidance counselor. To top off the day, when the bus arrived in the afternoon, Julia's backpack got stuck so the bus driver (he is new) closed the doors and started to pull away. We waved at the bus driver and he stopped and you could hear Julia screaming. She got of the bus sobbing. She thought he was going to leave! Since then, things have gotten alot better. The girls have started soccer and dance! They are enjoying our busy days!

Update from our Summer!

2008-09-12T08:09:00.000-07:00

We had a great Summer. As always, it went by too quickly. One day we decided to take a hike up to the Ethan Allen Tower with the kids. They have always wanted to do this so they were very excited to acutally get to the top! Here are some pictures!

The best gift ever!

2008-08-13T20:39:00.000-07:00

My brother Jon and his wife Holly and daughter Cadence came "home" today for a week. It is always so good to see them! Cadence has gotten so big! We met them at the airport and then went to Al's for lunch and then back to my parents for dinner and visiting. I was helping my mom when my brother called me and Tony into the computer room and said he wanted to show us a this website he came across the other day. http://www.jonrileyguitars.com/mda.htm
My brother is the most talented guitar maker ever!I am so touched and honored that he has made this to benefit our little guy! He said he will continue to make one every year and ALWAYS have Andrew's initials on it! This is by far, the best gift I have EVER received. Thank you Jon! I can't even find the right words for you. I love you!

Rain!

2008-08-08T15:42:00.001-07:00

Is it ever going to stop?

Update on Andrew...

2008-07-29T08:50:00.000-07:00

About two weeks ago we started Andrew on the steroid Deflazacort. This steriod is not FDA approved but is available everywhere else (pretty much) except the US. Our Dr. sent the perscription up to Canada and they order is from Europe. We have to bring him to the dr. every 2 weeks for weight gain, gluscose in his urine and blood pressure. The steroid he is on is to known to show less side effects in boys with DMD. If you would like to read more, here is a link. http://www.parentprojectmd.org/site/DocServer/filename?docID=124
We will be traveling back down to Philadelphia in November for a follow up!

Santa's Village!

2008-07-28T09:58:00.000-07:00

We took a day to go to Santa's Village! We didn't get to go last year and the year before we went to Story Land. Both are fun but we like Santa's Village better! My cousins Emily and Adam came and Emily's boyfriend!

Camping pictures!

2008-07-28T09:38:00.000-07:00

We love camping but this year was alittle different! It rained EVERYDAY!!! YUK!!! We still had a good time and jumped in the sun when we saw it for more than 5 minutes. We also loved it that this year Grandma, Gram and Barb got to come up and see how we live for a week! Even though they got lost finding us, they seemed to enjoy it! We cooked some hot dogs before they headed home! The kids still are talking about it!!!

Camping for 10 or make that 9 days!

2008-07-28T09:25:00.000-07:00

So I was running around the day before we were supposed to be going camping and I was at the eye doctor with Andrew. My phone rings and it's Tony. I answered it and told him I would call him back after they put drops in Andrews eyes. So I called him back and to my shock he says we can't leave tomorrow, he has pneumonia?!?!? I was so confused because he wasn't even sick. I guess he woke up with some pain in his chest the night before and couldn't get back to sleep. He decided he better go get it checked out before we head out camping in the northeast kingdom for 10 days. He was just as shocked as I was. So after I got home from running around, I came upstairs and Tony looked awful. As the evening went on, I knew he has hurting. I decided I was going to call his DR. around 8ish and see what he thought. I did and the doctor said to go to the ER. So we spent the night in the ER. The ER thought maybe he was misdiagnosed and thought he had a blood clot in his lung. THANK GOD that DR. was wrong. They gave him some pain meds and we were able to leave on Thursday afternoon. He is much better now but boy did he give me a scare. I love Tony with all me heart and I don't know what I would do without him. He is the love of my life!

Hampton Beach!

2008-07-28T09:10:00.000-07:00

The first day we got to Hampton our whole family was there except for Jon, Holly and Cadence. It was a great day and the water was very warm, as far as the ocean goes!!! We enjoyed our days there. We went to Chucky Cheese one night and golfing one day!! Here are some pictures!

4th of July!

2008-07-28T09:03:00.001-07:00

We went down to the waterfront to watch the fireworks! It was alot of fun! We had a great spot and enjoyed the people watching!!

Hot Day!

2008-07-28T08:55:00.000-07:00

After the Stride and Ride we came home and the kids enjoyed a nice cool down in a new sprinkler that Andrew received! Also, here our pictures of our new play set! We still are not finished completely but the big stuff is done!

It's been awhile!!!!

2008-07-28T08:38:00.000-07:00

Sorry I haven't posted all Summer. It has just been really busy. In the beginning of June, we had the MDA Stride and Ride. This year our team brought in about $7000!!!! It was a much bigger and better event than the past few years we have attended. My hats off to all who planned!!! Here are some pictures! Also, Thank You to our entire team for doing a GREAT job with fundraising!!! We couldn't have done it without you all!!!

Thank's for all you do!

2008-05-22T08:52:00.001-07:00

We would like to say Thank you to everyone for putting in the effort to do fundraiser and volunteering your time to the MDA! Click on the picture below for a message!

Andrew says "Thank You!"

Andrews new bedroom!

2008-05-20T09:04:00.001-07:00

When Andrew turned 3 we asked people to get him stuff for his room. We knew he was outgrowing his crib and we had to get him in a "big boy" bed. I had been doing alot of research and found the perfect bedding. It's from Olive Kids! It is so cute. After I found his bedding I knew exactly how I wanted to paint his room. Now, I have always had help painting. Usually my mom comes over but they have been busy and I just wanted to get it done. I decided that I was going to try it myself! I love how it came out. It took 4 days but that is with Tony working and the kids being home! Here are some pictures!

Walking on the beach!!!!

2008-05-20T08:54:00.001-07:00

When we were in Portsmouth, we decided to take a 20 minute ride and go to Hampton Beach! We love it there! I really wanted to experience watching Andrew walk on the sand/beach all by himself. It is something that I never thought I would see. I took those little things for granted with the girls. I was filled with emotions watching him walk on the beach! He is just so proud!! Here are some pictures! Enjoy!

MDA Bootcamp!

2008-05-20T08:43:00.000-07:00

We were invited to go to the Maine, New Hampshire, Vermont MDA Bootcamp in Portsmouth, NH. For those of you who don't know, the MDA host's this event for the firefighters from around these states to "pump them up" for fundraising for the year! The firefighters meet families affected with MD/ALS so they can really get an idea of what the families go through. I was asked to speak and that was challenging but I got through it! It is easy to talk to a large crowd when it is something you are passionate about. There was also fun activities for the kids. Julia and Hannah decorated the firefighters name tags with flowers and rainbow stickers!!! Julia challenged them to a race to put together Mr. Potato Head! She had a blast and the firefighters did too! Here are some pictures from that day!

Fun at the park!

2008-04-06T19:35:00.001-07:00

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!

2008-04-06T19:26:00.001-07:00

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!

2008-04-03T19:11:00.000-07:00

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!

2008-04-03T18:54:00.000-07:00

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!

2008-04-03T18:43:00.000-07:00

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!!!

2008-04-03T18:37:00.000-07:00

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!

2008-04-03T18:27:00.000-07:00

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!

2008-04-03T18:18:00.001-07:00

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!

2008-03-05T09:03:00.000-08:00

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!

2008-03-05T09:00:00.001-08:00

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

2008-03-05T08:52:00.000-08:00

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!

2008-03-05T08:44:00.001-08:00

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

Curls No More!

2008-03-05T08:22:00.000-08:00

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

2008-03-05T08:15:00.000-08:00

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

2008-02-10T18:17:00.000-08:00

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.

Lets give this a try!

2008-01-23T19:48:00.000-08:00

So I am going to try this Blog thing. A few of my friends do it and I think it is a great way for people to see what is happening in our lives! So here is a video I hope you all enjoy!

My Montage 1/23/08