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. :-)

January and February 2011

A few shots from January and February . . .its been crazy as I've transitioned from Penn to my new job at Johnson & Johnson, the kids have transitioned from day care to an in home nanny, and Kevin has helped lead his team to the playoffs. We had our nine month weigh in around Valentine's Day - Hope was 17 lb 10 oz and Jack 16 lb 2 oz. As you'll see below, both kids have gotten pretty good at solids eating and I've enjoyed making most of my own baby food and introducing them to all sorts of different flavors. Kevin is jealous as I seem to only cook for Hope & Jack and we eat mostly take out. It's hard being a working mom - especially during basketball season! But the snow has melted and I cannot wait to break out our Bob stroller and the red wagon sometime soon. XOXO to you all.

Happy New Year!

Hello all, At last a new update! I am sure all of my readers are just as excited about that as I am. The months of November and December flew by with little time for me to take a breath, let alone upload photos and type an update. I guess this is my new reality and I just need to get used to it. Right . . . Anywho, here are a ton of pictures from the last two months so you all can see how big Hope and Jack are getting and of course how adorable they remain!!

Here is Jack playing with his Pakistani cousin Emaan. My friend Kulsoom came for a visit in early November and brought along the adorable Emaan. Kulsoom and I had due dates only a day apart so the babies are the same adjusted age, even though technically Hope and Jack are about 6 weeks older. Jack and Emaan have very similar personalities and had a lot of fun chatting with each other. The one big difference between Emaan and the twins is that she has a gorgeous full head of hair, we were all envious!!!

The same day Kulsoom left, Mark and Liz arrived for the night. Here they are posing with the twins. I think this was minutes before Jack spit up down Mark's neck. He may never let Liz visit again! Sorry Mark . . .
Posing in the first of many Christmas outfits. It is not easy to get cute shots of them both at the same time, but I love this one of Jack and both their expressions in the next one.

Here is Jack and his Pop (Kevin's dad) on Thanksgiving.
Thanksgiving weekend also brought a visit from our friends Steve and Rebecca. You'll remember them as the newlyweds that led us to Maine this summer for their wedding. Hope immediately snuggled in comfortably for a nap and Jack hammed it up as usual.
Here is Hope and Cousin Payton (my cousin Roxanne's daughter) together at my dad's. Everybody loves the activity mat.
Uncle Ben is becoming a baby pro.
Here a couple shots from Kevin and my weekend away to New Orleans for Beau and Jean's wedding. It was a quick fun filled weekend with the ND Sorin boys and their ladies. Kevin's parents and his Aunt Mary babysat for us. Unfortunately both Hope and Jack developed really bad colds while we were away so they were quite a handful for their sitters. :-( Never fear, it was only a week out of day care before they were back to normal. Ugh.

Thanks for the Christmas outfits, Grandmom!
Kevin loves how possessive Hope looks of her reindeer bib.
One of our final baths with the tummy tub in the kitchen sink. My baby girl is too big for the bucket and for getting dressed the counter. Where has the time gone?? She loves her thumb. The other day I caught her with both thumbs in her mouth at once - tough to choose which one tastes better so why not try them both.
Attempting to get the perfect shots for our Christmas card . . .
Perfect!
A certain little boy loves the camera and his feet!

Pretty and pensive Hopester
Checking out the Christmas lights
Christmas Eve at my Dad's. Jack is checking out the toys from Auntie El and sporting his Christmas sweater outfit.
My dad and his proud Granddad brag book on Christmas morning
Getting ready to go see Grandmom and Pop on Christmas. This girl loved her velvety pants!
Christmasing with Uncle Jim, Jimmy, and Abby
Jack in motion - there is no stopping this fella now that he sits and rolls. I am fearing the day he figures out how to crawl. Buddy, we are in no rush.
"Granddad will you read me the brown bear book again?"
The picture says it all -- Like father, like daughter

Putting this together has reminded me of all the people we've gotten to see these last few weeks. It also reminded me of those we did not get to see. We were sad to have to cancel our trip up to Massachusetts to see my aunts, uncle, cousins and (soon to be parents) Bridget/Dave, but Jack was taking a long time kicking his Christmas cold and we were fearing more missed work if he didn't get better by New Years. Luckily he seems to be doing better now. Work is extra busy for both Kevin and myself. The Lower Merion Aces are 5-3 and having a pretty good season so far. I am in a rush to finish up my experiments at Penn as I am starting a new job at Johnson&Johnson come the end of February. I am really excited about the switch. I will still be doing basic cancer research in an area similar to what I am doing now at Penn. The commute is shorter, but I still can take my train. Yay! Along with this change, we are about to start a nanny watching Hope and Jack in our home. This will hopefully make all our lives easier as we expect the babies to nap better, stay on a good routine, and thrive. Plus, I won't have to miss as much work due to minor sicknesses!

My new years resolution is to stay in better touch with all who are dear to me. Becoming a working mom has made it hard for me to find the time in the day/night to write emails and make phone calls. Even though I am out of contact, please know that I am thinking about all of you and hope to do a better job in 2011 staying in touch.

Here's to a happy and healthy 2011!

XOXO,
Kate

The great 6 month weigh in!

We had our six month check up last night. The twins will be 7 months on Nov. 22 so its actually a 6.5 month check up. Hope weighed in at 14 lbs 15 oz and Jack at 13 lbs 10 oz. I cannot believe that both babies have gained approx 10 lbs since birth.

For those of you who want more numbers, both kids are gaining a lot of ground "catching up." Here are the changes in percentile for their age group (compared to other 6.5 month old babies) since their four month appointment.

HOPE
weight - 20% (at 4 month checkup) to 25% (at this appointment)
length - 32% to 64%
head size - 44.5% to 64%

JACK
weight - no change, still hovering in the 1 percentile
length - 3% to 30%
head - 24% to 42%

I was really impressed by these comparisons, especially the changes in length - considering their prematurity. In the end, we may get a couple tall basketball players! Granted if any of you have ever seen me play basketball, you know to pray that Hope and Jack did not inherit my hand eye coordination!

We are hoping their weights will continue to improve, especially Jack's, now that we are working solid food into their diets. We are making slow progress, but have enlisted our experienced day care staff to help Hope and Jack learn how to eat. So far they've only had rice cereal to experiment with, but our doctor suggested sweetening the deal with some pears or peaches, so that is the works for the next few days.

Other than that, things are good. I've gotten a taste of what it is like being a stay at home mom as we've had to deal with the stomach flu/fever/stuffy noses recently. So far they've all been minor illnesses and I am very thankful for that. We have a busy next few days with visits from Kulsoom and baby Emaan, followed by the newlyweds Liz and Mark and then the baptism of my cousin Roxanne's baby Payton. It will be crazy, but wonderful to see so many special people and get to show off our kids.

Just a few new photos for you all to enjoy:

I think they loved how they looked in their coordinating jumpers as much as their Mom did!

Bed shot #3 (compare with June 14th and Sept. 8th posts)

Pictures from Halloween