Thursday, July 31, 2014

Her Room With a View...

Eight months ago, this little angel arrived a whole month early and took our breath away.  She was beautiful from day one...
...and eight months later, that hasn't changed.
Here are some fun facts about Hope this month as you scroll through the 432 photos of her (I can't help myself)...
She crawls on all fours now!  And she's getting FAST!
She seems just as interested in books as both of her brothers.
She has a great personality.  She can strike a serious pose...
...she's curious and observant...
...and happy!!
One thing that hasn't changed?  Her love for her big brother.  He just dotes on her and she loves all the attention he smothers her with!
Brian has been "play acting" a lot lately.  For the last two days he has gone by the name, "Chartoil."  Chartoil is a lifeguard who keeps his sister safe and all day asks "Is everything alright in here?  Do you need any help?"  I give him all kinds of jobs.  Chartoil is a great helper.  He even helped me bathe Hope.
When I asked him to smile for the picture he replied, 
"No thank you.  I'm at work."
Hope woke up on her eight month "birthday" to a big surprise!
A NEW ROOM!!  With Brian's permission (he loved the idea, actually) - we moved Hope's nursery into his old room.  And Hope's old nursery is now the guest room with Brian's furniture and nautical theme.  I love that Hope is now in a room that was Gavin's baby nursery - and Brian's "big boy room" once he moved out of his nursery.  And I also love that both rooms have paint colors that work with the existing decor.  Thank God.  

Here's a little tour of her new room.  I still have to find spots for her shelves, but you'll get the idea...
If you look down outside her window, you have a great view of Gavin's memorial garden.
In this room, her book display fits!
I love that we have a book display in every room.  Showing the covers makes it much more inviting.  Hope has already spent a lot of time sitting (and standing!) in front of her books!
The "Jellybean Tree" print was purchased at duPont Hospital's gift shop!  They have the cutest things there.  I was in that hospital so much with Gavin when he was a baby and I was pregnant with Brian - that Brian's nursery was almost completely decorated with items from this gift shop!
I also love that I can fit the photos of Mommy and Daddy in her room now.

As promised, here is what the new "Brian and Gavin's" room looks like...

There's only so much we can do as far as rearranging.  The bed is so big and can only fit on one side of the room or the other.  So we moved it across the room.  But to Brian - little changes are BIG fun!
There were certain things that he requested to keep the same.  Gavin's name had to stay on the wall...
Gavin's picture (which was sent to us by a reader very early on after his death!) stays on the shelf.  The butterflies that Brian colored at the hospital - and then whispered a wish into them. He then whispered the same wishes into Gavin's ear as he said goodbye to him - so these butterflies hold sacred secrets between brothers.  And a photo from our trip to Disney World after Gavin died will stay, too.  Gavin's favorite show was "The Little Einsteins" and we got to meet "June" from the show.  We took a picture of her holding Gavin's embroidered mouse ears.  Brian loves that picture so much.
The "Invisible String" and heart that he made in the hospital still hangs on the closet door.  We pull that string and say goodnight to Gavin as a family every night.  And that is Gavin's "His Royal Highness" pillow that has hung in his room since before he was born.
Brian still sleeps in Gavin's special needs bed.  His pillowcase is one of two that we have that were Gavin's over the four days he spent in the hospital before he died.  And Brian sleeps under those three blankets - all of which kept Gavin warm from April 10th until he died on April 14th, 2013.
And Brian wanted to keep Gavin's clock, which says "Once Upon A Time" around the edges.
The newest addition is the Lego table (and all the Angry Bird stuffed toys!!)).  Brian and I spend a lot of time at this Lego table - it's covered with our creations.  I am pretty confident that Gavin loves how his room is being used...and appreciated.

Here's an update on Hope's eczema journey!  It is actually going to be much easier than I expected, I think.  I ended up eliminating all of the food I was giving her (which was not a lot) for two days.  On those two days I just did the back massage only.  She is so good for this - and sometimes it actually puts her to sleep!  Then I spent two days with banana in a glass jar against her skin while I did the back massage.  On the third day, I re-introduced banana.  Then I moved on and put avocado in a jar - massaged her back for two days while exposing her to that - and then re-introduced it.  This is what I plan to do with everything - the foods I have already given her... and all future foods before she takes her first bite.

Her skin looks dramatically different.  The very few patches she has left are small and smooth.

Her back before was pretty bad (I don't have a photo) - but now it's as smooth as can be.
The real proof will be over time.... in different temperatures, eating different foods, etc.  I'll keep you posted!

Tomorrow is Brian's very last swim class at Cabrini College.  I wasn't able to get a great video of him jumping in the pool today - so hopefully I will tomorrow!  Ed will be there for his 'graduation' so I'll be able to focus on capturing the action a little better.  
Here's a great video of him "swimming" on his back with his sweet instructor, Katie.  I understand why they call the course "Swim Fast" - he has gotten so fast going across the pool by himself!!
We're so proud of him.  But more importantly, he's so proud of himself!!


  1. Love the gavin-Brian room. Happy eight months Hope!

  2. I love the way you honor your children, Kate. So beautiful!

  3. Hello kate, can you please tell me how to do the back massage and for how long? My son i suspect have egg allergy ( along with cerebral palsy allergy, just joke ..he is 2 years old )


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