Update on Andrew.....

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!

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

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?!?

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!

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!

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!

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

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!

***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

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!