May-June Photos

The first few photos were taken on Hope & Jack's birthday by Laura Eaton (the photographer we used for our wedding/engagement photos).  A link to many more of our favorite shots is http://www.mpix.com/SharedAlbum.aspx?aid=4667516&key=1q9gmmEuRjsPjolVlEBs

 

Team Hope was a huge presence at the Angelman Foundation Walk on May 21.  Many of you have already heard how wonderful the morning was and seen all the pictures, but below are couple highlights for those who haven't.  If you want to see more photos from that day, check out :
http://share.shutterfly.com/action/welcome?sid=8AbtmThy1ctXSA

 

 Dad took both kids to their cousin Jimmy's birthday party while I was up in Maine for Marianne's graduation.  Surprisingly they both ended up dressed in their Phillies gear head to toe. 

 So many smiles in our house!!

Hope is a big fan of the music table and is so happy she can reach it now.  

 Can you tell that Jack is the grandson of a fireman?

 Testing out her big girl car seat in the family room. 

 The best girl . . .

 The best bed head . . .

 Getting so much better with my sitting!

 Granddad found this surprise on our neighbor's curb.  Daddy helped carry it to the back yard and Jack has reaped the benefits.  Here's his first run down the slide. 

 Walking with his good friend the lion. 

 The joys of juggling two hungry babies with their morning bottles.  Jack used to lay in the boppy pillow next to me while I fed Hope in my lap, but now he insists on sitting upright next to me.  He is quite capable of holding his own bottle, but not surprising still prefers to have his mom hold it for him.  :-)

One and done!

Here are some photos from the big birthday/Easter weekend.  Unfortunately we all ended up sick post celebrating so its taken some time to get the pictures up on the blog.  The ones at the end were taken this week so at least everything is current.  Luckily we are all finally feeling better. 

Jack decided to sit right down right next to where Hope was playing.  Lately he is a big fan of crawling over her, grabbing for her hair, and of course any toy she happens to be playing with.  We keep warning him that one day she is going to fight back and he won't know what happened! 

On their birthday, looking so big in the green chair in the nursery!
Happy Birthday to us!

This was the next day at their birthday party.  We had ~20 people in our dining room and Jack was very overwhelmed by the singing. 

Hope thought it was great, was all about the candle/cupcake, and wonders why she doesn't have more entertainment at all her meals!

Post cupcake . . .

What is this?

Jack's birthday gift from his aunt and uncle - a Philly Phanatic pillow pet!  Hope has taken quite a liking to it.  Maybe Jack will trade it for Hope's purple bunny pillow pet.  Here she is watching the game with Dad and her good luck charm. 

Easter - in front of my Dad's house.  Could he look any cuter?

Hope and Dad checking out the flowers

Another birthday gift - Curious George from Grandmom.  :-)

What do you think of my sneaks or all my teeth?

 Jack and Granddad checking out the backyard.  I love how small he looks next to my Dad! 

We are very excited to have more than 50 people signed up to join us on May 21 for the Angelman Foundation National Walk in Cherry Hill.  There is still time to sign up if you are interested --- http://www.angelman.org/walk/walk-registration/.

I am more than blown away by the generosity of all of you and the donations we've received at http://www.angelman.org/TeamHope/.  Thank you. 

 

March photos and updates

Hey all,
Kevin and I are so thankful for the outpouring of support we've gotten from our family and friends since sharing the news of Hope's Angelman Syndrome with everyone. The prayers, cards, emails, phone calls, flowers, cookies, dinners, babysitting, offers of support etc. etc. etc. have all been great and it means a lot of us. Thank you!

We are participating in the Angelman Foundation National Walk on May 21 at Cooper River Park in Cherry Hill, NJ. (http://www.angelman.org/walk/). We invite anyone local who would like to walk with us to sign up and join TEAMHOPE. For those of you interested, but not local, you can be a virtual walker or even participate in another city (there are 30+ locations hosting walks on May 21). If you would like to make a donation to the foundation, I have a fundraising page which can be found on the website by searching for my name or TEAMHOPE. There is no charge to walk and we'd love anyone to join us supporting Hope and also Angelman research. My friend Dana is arranging for tshirts to be made so let me know if you would like one.

http://www.angelman.org/TeamHope/


Here a bunch of photos from the last month or so! Enjoy!!!

Jack and his best friend Mr. Penguin. There are days when he won't let go of him! Get's a little interesting during meal time. Luckily Mr. Penguin doesn't mind the washing machine.

St. Paddy's Day outfits - I love them!


Mr. Jack testing out his legs. He's getting quite good and I'm getting more and more nervous.
Bundled up for a walk on a "nice" day a couple weeks ago - was a little colder than I'd thought, but was so excited to get outside that we went out anyway!
Getting into everything and finding a way to get where ever he wants!
I love this picture!
Life in our gated community . . .
Hope in her chair - Jack's favorite place to pull himself up and steal toys right out of Hope's hands. The best is when she fights back!
Stylish while on the move!
Silly girl!
Our first family trip to Bennihana's! (a Davies family favorite)
"Please read me another one, Grandmom!"
This one requires no explanation -- I won't say where he learned this trick.
The next few were taken at Nate Lehmann's 1st birthday party where we discovered that our kids love playing with balls.


and balloons . . .!!!

All smiles after a good dinner


Silly time in the bathtub

In dinosaur PJs!!!

Our angel Hope

Dear Family and Friends,
In a perfect world, I would have been able to call and share this news individually with all that I am close with, but that is not possible. Over the last 14 months, this blog has served as a great way to keep our family/friends updated on my bed rest progress and then new wonderful life with Hope and Jack, so it seems the perfect forum to share the latest update, albeit not the news I would prefer to be posting.

We have been watching Hope closely for the last few months as she has been behind Jack in her developmental milestones (head control, rolling, sitting, etc.) We were told that she was low tone and needed physical/occupational therapy to help her catch up. So that is what we've been doing all the while hoping she would do exactly that. However at her 10 month check up with the neurologist, we were encouraged to do some further testing as they felt her progress was not enough. Genetic testing showed that she has a deletion in chromosome 15 causing a genetic disease called Angelman's Syndrome.

In short, Hope will require life long care, will probably never speak, and will likely have seizures starting by age 2 (which we hope are controllable with medicine). On a more positive note, she will live a full life, will walk (though it may take her longer to get there than Jack), and will remain the sweet happy girl, she has always been. Angelman's children are known to be very social and prone to excessive laughter. It is taking me awhile to internalize and process all of this and I have not done a ton of reading about the disease. I recommend that you all check out (www.angelman.org) for more information. We have been encouraged to not focus too far down the road or on all the statistics, but instead to treat Hope as Hope and face each challenge as it presents itself.

It is sad news and we are all dealing with it in our own way. I am lucky to have Kevin who still tries to make me laugh even with tears in his eyes. As has seemed to be a theme in my life, every time I think I know what the future holds, a new wrench is thrown in the mix to twist everything up. But as I have done in the past, I will face this new reality head on and try to make the best of it - for Hope, for Jack, for Kevin, and for our wonderful family.

I am sure I have made at least a few of you cry (as I indeed am!) so I will stop with all this sadness. :-) We are doing ok, - better than okay really. Our parents have been great as have everyone else who has found out the news. I thank you in advance for all of the prayers, support, love, and kind thoughts, you will have for Hope and for all of us.

The blog will continue (though I make no promises on my update frequency) and will be a mix of photos, happy updates, and news about our challenges. At times I feel very presumptuous that anyone really wants to know all these details about my life, but then I remember that you don't have to read if you don't want to and I know there are a few avid fans out there who truly enjoy my posts.

XOXO,
Kate

This time just a couple photos of our Hopester. My next update will have with extra shots of Jack to keep everything equal. :-)