2009 Vermont Goodwill Ambassador!

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

Andrew's testing results...

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

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.....

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!)