Avery's 13 mos and a quick trip to OC

Avery's 1 month follow up for her eye was yesterday. Always a stressful thing in our house. Going to the eye doctor with her is so emotional for me - it's like re-living Conner's diagnosis day all over again. Soooo, we all agreed to give Avery some more time before sending her in for a second eye muscle surgery. She has regressed some since surgery as far as eye alignment - but there is still a slight improvement from where we were before the surgery. We will re-eval in 4 months - and if nothing has improved - she will likely have a second muscle surgery around 18 months old.

She is cutting her 4th tooth right now - and that makes for a crabby baby :( She is getting more and more confident with taking steps - she is doing 2-5 steps at a time before going back to ole faithful (crawling) She is into everything!!!

Brenden had an AWSOME tackle friday night at his game and we are looking forward to another fun game this weekend!

A very special bath time at the Hopf's :)

Tonight while Daddy was in DC for work - we had fun in the tub! I just love how much Avery loves Brenden! Brenden loves her sooo much too - only he's 6 and she wants his toys and that.....he's not to crazy about, lol. poor Avery has quite the diaper rash - Im off to the store bright and early in the morning for some Maalox for her tush - yep, thats right im going to try putting it on the outside of her butt and see if it helps. After that , if no success I will be going to the farm animal store for some utter balm - or whatever they use for cows - parents swear by it - even though it kinda scares me a little *wink*

The teething is giving her GI tract a workout (thats mommy code for tons and tons of poop) which is not making her little tushie very happy :( She isnt sleeping well either - so mommy is beat (so why am I blogging at 12:45am, you ask?............. cause Im crazy) night night...

Oh yeah - Avery held her toy phone up to her ear yesterday for the first time - she ROCKS!

See - my mind is on overload - I just cant help it. I have to mention - an old friend, one whom I was very very close to growing up (though we have drifted apart over the years) just learned that her husband has pancreatic cancer. I have been thinking of them non-stop and hope that all my blog readers will please keep this family in your thoughts over the months to come as he courageously battles his cancer.

Avery 13 months and a couple days

Avery's into everything!!! Even so, I love it all! Yeah Avery :)

4 years has gone by...

Hard to really imagine that it has been 4 years since the day we were told that our son Conner was going to die. 4 years since my world blew up right before my very eyes. 4 years since a part of my insides died. 4 years ago today I became a different person.

I wish I could truly say that my memories of that day had faded - but I remember every small detail of that day - even down to what I was wearing. The day started off pretty normal with the exception of taking Conner for his eye appointment. Can you seriously even imagine going for an eye exam and learning that you were going to die? Well - that's exactly what happened. I was alone with Conner - and had to call Carl and tell him what she thought was wrong with Conner. I remember trying to explain to him what Tay-Sachs was over the phone - and his reply was well - "cant they do surgery?"

No - of course was the answer - no surgery, no nothing. There is not a worse thing for a parent to hear than - "NO TREATMENT and NO CURE". It's how I would imagine it would be to feel paralyzed. Because that's just how I felt, paralyzed. I didn't know how to continue - how to you go from that moment to resuming your "normal life" You see, because our life was not normal anymore.

My boys were 18 months apart in age and it was how I envisioned my life - married, white picket fence - 2 boys and a dog. I had no idea how my would would really turn out. The burden I carry every moment of every day. The sense that part of my family is missing. It's even as simple as a family picture - for the rest of my life, we will never have a complete family picture - because our son Conner will not be there.

I do try to stay positive and most of the time I feel like I do a really good job, but today, "diagnosis" day is and still is the single worst day of my life and one that signifies heartache and loss for me. Conner was diagnosed at nearly 8 mos old - and we did have a lot of genuinely valuable time with him leading up to his diagnosis and even after - and I am so thankful for that time - but I simply wanted more. I wanted to watch him go to kindergarten, learn to play sports, graduate high school, and get married one day - and Tay-Sachs took all that from me.

I can see soooooo much of Conner's personality in Avery and that does help me to remember him in such a special way. It has been almost 3 years since Conner's death and I still and always will, miss him tremendously. As I said before - he is part of my heart and soul, forever!!! We love you and miss you Conner!!!!! I hate Tay-Sachs disease!

Avery's 13 months old today!!! (adjusted 11 1/2 mos)

Happy 13 month birthday to Avery! Your incredible!

19 pounds 9 1/2 ounces

here's the evidence - Avery can clap!!! (even while she sucks her thumb - lol)

My birthday present from Avery ..... she officially knows how to clap!!!

Yep.... she has been clapping all day :) I am loving every single second of it! She is making my september much more pleasant. September is a horrible month for me - marks the loss of my 2007 pregnancy and our baby girl that had Tay-Sachs, and September 20th will be the 4 year anniv of Conner's diagnosis. All my fellow Tay-Sachs or similar disorders families know what diagnosis day is like - the single worst day of my entire life. So for now I am enjoying my two incredible, beautiful babies and missing my sweet Conner! Love you all!!!! I know I say it alot, but thank you Conner for making me who I am today!

Our little climber... Avery 12 mos 3 weeks

So little miss Avery has learned to climb up on the fireplace - and she like to play up there - WOW. We saw her do it for the first time last night and then today I glanced over and there she was again - so I darted off to grab my camera... and presto, we have Avery on the fireplace.

She has also begun to clap which is super exciting! I have been trying to get her to do it for such a long time and suddenly 2 days ago she did it! She get overly excited so sometimes it looks like shes flopping around like crazy - lol. She can also now identify a block, baby, mail (she has plastic mail), book, and dog. I line the toys up and ask for one specific thing and whola - she gets it. Now that said if, she's not in the mood - she just keeps handing me her baby - which she just LOVES!!!

10 days... and no blogging...what a bad blogger am I?

I just realized it has been 10 days since I last made an entry. Let me see if I can sum up the past 10 days. Last weekend we attended Jason and Juli's wedding. As you can see from the first image shown - the graciously made a donation to both the Cure Tay-Sachs Foundation and Conner's Way Foundation. I had the privilege of doing the wedding photography - which was wonderful. So great to work with such amazing people! Thanks to both the Kirchner and McDonald families for sharing your special day with us! (we shall not make any mention of those pesky blue drinks - lol...) We had such a great time in St.Micheals and the weather...well it was PERFECT!

I was just about finished editing the wedding photos when I got a call about a baby who wasnt born yet, but had a disease that would take him shortly after his birth. I rushed to the hospital and photographed this little one who entered the world and stayed so briefly, but was so very loved. Doing this kind of work - truly allows me to give back in such a special way.

So you see - I have been at my computer every spare second editing photographs. And the spare seconds Im referring to.... they don't come along that often in our house. Avery turned one and is suddenly into EVERYTHING!!!! She is taking about 2-3 steps at a time before she goes back to ole faithful....the knees, they are much faster - lol. Oh and she wants to be held ALL the time - and dont you dare try to put her down, because she now throws herself on the floor screaming - kinda amusing! It has been 2 + weeks since her surgery and I hate to report that I really see very little change and suspect she may a have another surgery in her not so distant future :( She goes back at the end of this month for another follow up - so we will see what the doc thinks!

Brenden had his first real football game today - where he did AMAZING! He is one tackling fool! In fact, he got the last tackle of the game and prevented a touchdown on the last play of the game. However, football skills aside - my favorite part of the game is when he was all the way down the field away from our team and the speakers started playing Lady GaGa's Poker Face. Well...... rather than hussle to get back to the huddle and start the next play, Brenden started dancing in the middle of the field - the whole place was hysterical! And some of his teammates amused themselves on the sidelines by dancing to the booty call and playing duck duck goose - SO CUTE!!!!

First week of school

First week of school has been going very well - (with the exception of me sleeping through the alarm clock this morning and Brenden missing the bus....oops. Yes, already missed the bus on the first week of school) Brenden really likes his teacher - so thats a plus! The first day of school pictures were not quite what I had envisioned - but it was all I could do to go out and shoot - lets just say the GI bug bit Avery and I. Avery threw up twice on monday - but seems to be better today! Pedialyte to the rescue! Argh...what a week!

Busy weekend coming up as we celebrate Juli and Jason's wedding! In leiu of wedding favors, this amazing family and couple have decided to help us find a cure for Tay-Sachs by donating to the Cure Tay-Sachs Foundation and the Conner's Way Foundation! We love you Kirchners! (And McDonalds!) And as we celebrate this weekend we will be thinking of sweet Molly Grace who is 5 years old with Tay-Sachs. She is in the hospital right now with a partially collapsed lung. Thinking of you Jordan family!!!