Yuck..... Ice storm

So... this ice stinks. Brenden is one lucky dog - missing 2 whole weeks of school because of the weather and our trip. I had so many things I wanted to get done - but now.... heck I dont really want to go out in this mess. Brenden and I played in the snow yesterday and that was fun, but the ice is a different story. I wanted to take pictures of him in the snow yesterday - but I decided that if I drag out the trusty camera - I may ruin his fun. - So instead we just launched snowballs at eachother. He has really good aim - lol

truly remarkable days...

In life there are so few truly remarkable, truly incredible days. For me - tomorrow marks one of those days. In just a few short hours we will celebrate Conner's 4th birthday. Sometimes it seems so surreal - I can picture all these brief moments in my mind - like my boys sharing bunkbeds or running in the sand. I miss him so very badly. Most days I do okay - but today I feel very broken. Broken-hearted, sad - and lost. Giving birth to Conner was literally one of the very best days of my life - since I have done it 3 times - I can confidently say that it was truly remarkable. I thank Conner for so much - for making me who I am - for helping me grow and mature and for giving me the strength to continue without him. I am sad that Brenden only had 22 months with his baby brother and i am sad that Avery will only know him through our memories. For Conner's 4 th birthday we will be making a donation to Soulumination - a charity that is very very special to us. In this post I shared a couple pictures of Conner done by Lynette - these pictures a part of my heart and soul! Happy birthday my amazing baby boy!

Avery 5 mths - 4 days

a picture post

Avery's 5 months - adjusted 3 1/2 months

We got this fabulously fun winter hat from our dear friend Lynette at Soulumination - www.soulumination.org She is an incredible person who is very near and dear to our hearts - and has really made me so much more passionate about photography.

This post's for you Amy - lol

Amy - this post is dedicated to you! Thanks for the e-card this morning - you are the best at sending those! We will definitely talk soon!!! It's nice to know people still read my lonely blog! I took this picture of my little lady this morning - I have an addiction to baby hats. Not really any new news - other than I had to get a cortisone shot in my knee yesterday - ouchie!!!!!! It's been popping since Avery was born and yesterday I finally got it checked out. Brenden is on the countdown to WDW - we all are really - time to get out of this freezing cold weather and to sunshine and mickey hats! Just wait until I get my hands on some pink mickey mouse ears - lol. But first and foremost - the season premiere of LOST is tonight - so I am going to lock myself in a room alone for 2 whole hours and watch every single second. I am hooked!!!! - Okay, truth is I will never get two uninterrupted hours - so I will catch it on Tivo after everyone goes to bed. Only a few more days until Conner's 4th birthday (1/25) Missing him a lot lately!

Avery's latest discovery

Avery has discovered the TV - like her dad and big bro - she cant take her eyes off it. We know on some level her vision is improving - she is now noticing the TV and smiling at us when we just look at her with no talking. Yeah Avery!! The second picture is her doing some tummy time looking up at the television - so cute!

Avery 4 +++ months

almost 15 pounds

So my blog has been way neglected!! Sorry for the lack of updates lately - Brenden has sports 3 times a week and I had my presentation yesterday that I have been working on. Avery had her follow up opthomologist appointment today - a mixed review. She had a bit of a under-developed macula 8 weeks ago at her appointment - good news is that that has resolved - her eye's (inner eyes) look great. The bad news is that she has this muscle imbalance - (that we obviously already knew about) and she is still not tracking as well as she should. We have definitely seen an improvement in her tracking and fixing and following since her last visit - but she still has some ground to cover in the eye department. So.... dun, dun, dun... we wait some more. We go back in another 8 weeks and re-evaluate. It gives us some piece of mind that structurally - her eyes and brain are normal - so hopefully this issue will work itself out with time. We are back to patching - but now we are alternating eyes - to make sure that her brain receives signals from both eyes. As soon as she is tracking and following normally they will likely schedule her for the eye muscle surgery - he thinks by one year old - so we'll see. Now - you guys know that waiting is not my strong suit. On a different topic - Im pleased to report that we seems to have a good schedule worked out for sleep - she is now going to bed around midnight (I know, I know - it's still late - but I will take it) and sleeping until between 9 am and noon - She is sleeping very well - I hope I dont jinx it - lol

please follow this link ....

http://www.youtube.com/watch?v=uq2zGJvSCfo

Tomorrow I speak to the medical students at Univ of MD - this will be my third year sharing our story and educating our future doctors about Tay-Sachs. I always show a video in the very beginning - because they are very moving - this is a new video I put together for this years clinical correlate.

Yeah Ravens!!!!

Avery in 2009!!!

Just one year ago I was beginning the IVF to have Avery - seems like a life time ago!!! How amazing science is!!! We had our egg retrieval on Jan 11th and the embryo transfer January 16th - 2008. We are all a bit sick - a lot of snotty noses and raspy voices in our house - hope we can get over it soon! We are also very excited about the Ravens game today - our house is lit up purple - I will get a picture soon and post it up!!!