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.

BEFORE:

AFTER:

BEFORE:

AFTER:

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!!

East Meets West...

This morning started out how every morning this week has begun.  Each morning, while Hope takes a little nap, Brian and I attend Lego Therapy together in "his" (Gavin's) bedroom.  Oh, don't even laugh.  Lego Therapy is very serious.  *wink*  It's good for him - he uses his imagination and is learning how to build things.  It's good for me!  I get lost in the mindless connecting of lego bricks.  But it's best for us.  We never look at each other - only at our "masterpieces."  The activity and the lack of eye contact removes the vulnerability... and allows Brian to open up to me in ways he usually doesn't.

Yes, Lego Therapy is very serious.  And I'm honored that Brian invited me to join him.

After this morning's therapy, we got in the car to take Hope to the doctor.  While we were in Ocean City, a rash that was "here and there" and not worrying me much at all turned into a fully body rash that looked familiar.  It didn't look exactly like the contact dermatitis that I was used to seeing with Gavin over the years.  And it didn't look exactly like the eczema that I also saw with Gavin.  I had my suspicions... but I wanted the doctor to see her to rule out any illness or other reason for the rash.

First she got her weigh in...

She looks enormous here - but she's actually quite petite!

Hope's fightin' weight is now 16lbs, 12oz.  She will be 8 months in less than a week.

As soon as the pediatrician walked in and saw her rash, he said it was classic eczema.  I felt relieved that it wasn't an illness or anything very serious.  I left with a script for a steroid cream that I likely won't use.

Our next stop was to see Dr. Kang.  Because of her (and the other alternative doctors and nutritionist that I have on my "team") I know that everything begins internally.  When I was told it was Eczema and I should just moisturize and hope that she grows out of it down the road, I felt that it couldn't be entirely true.  Don't get me wrong - I have great respect for our pediatricians (they know that).  And I'm not trying to come across like I know more than they do (because I don't!).  I am really grateful that they have always been supportive of me - since Gavin was an infant! - as I tried all different types of alternative therapies and medicines and treatments... and then reported back to them with my results.  Some worked - some didn't - but none of them harmed my children along the way.  I need all of our doctors - traditional and non-traditional.  East meets West in our marriage... and in our healthcare team!

My suspicion going in to see Dr. Kang was that this was food related - and I strongly suspected Mango.  Hope didn't have any of these issues until I introduced food.  Then this morning I received an email from a reader who, coincidentally, uses the same type of doctor that does the same type of muscle testing that Dr. Kang uses.  She told me about her daughter who would get a rash every time they'd go to the beach (or throughout the summer) - and it turned out to be an allergy to sunscreen!  Bingo!  I hadn't thought of that!  So after reading her email, I quickly grabbed the sunscreen I used on Hope (Badger Sport Zinc based sunscreen) and headed out the door.

We got to Dr. Kang's and I told her about the new diagnosis... and my theories about the food and sunscreen.  With Hope sitting in her stroller, she tested me first.  I didn't show any reaction to the foods or the sunscreen.  Then she picked up Hope and put her down on the table next to me.  I held her hand with the vials representing the foods sandwiched between our skin.  Sure enough - she showed a reaction to fruit - evidenced by my weakness as Dr. Kang tried to push down my arm.  When she tested me without Hope, she couldn't push my arm down at all!  Next, Dr. Kang smeared some of the sunscreen onto my arm.  I held Hope's hand again and - she showed a reaction.  Can you believe this? You can't make this stuff up!!

Dr. Kang's advice was to follow the same back massage treatments on Hope that I have done (and still do) on Brian.  I will put mango in a glass baby food jar (and every other fruit I feed her - banana and avocado - just in case) - tuck the jar into her pant leg or waistband so it's touching her skin - and massage down both sides of her spine in a tapping motion.  This will balance her immune system and desensitize her to the "allergens."  I will also do this with the sunscreen.  "Why don't you just use a different sunscreen??"  I hear you asking.  Because I feel like I found a quality sunscreen that is safe and better for their skin than many others out there.  I'd rather make this one work for her than try a list of other ones that might cause a reaction - maybe even a worse one!  

She also suggested that before I introduce a new food, I should do the glass jar technique for two days prior.  This should eliminate any problems with the new foods!  And, she truly felt this would eliminate the eczema issues.  Since I was able to eliminate Brian's peanut allergy using her techniques, I tend to believe her.  Also, if you remember, I posted about Brian's skin issues several weeks ago.  Dr. Kang picked up a detergent allergy (which I eliminated) and an immune deficiency which showed up as skin rashes.  I diligently did back massages and he had two acupuncture treatments... and he's as good as new.  His skin looks great!

This does not mean I don't believe our doctors or don't respect their advice.  This just means that I'm open to the possibility that there could be another solution... a different way.  Knowing that it can't hurt Hope to try, I am going to be diligent with working to eliminate this issue.  I only wish that I had known Dr. Kang - or known this way of approaching illnesses and diagnoses - when Gavin was a baby.  He suffered terribly from eczema and contact dermatitis and reflux and allergies.  Knowing what I know now - and having the support I have now - I am sure we could have helped him so much more.  But when you know more... you do more.  And I know that he is smiling and proud in Heaven as I "do more" for his baby sister.

This will be a journey - and I feel confident that the outcome will be successful, but I could be wrong!  I'm taking you all along with me so we can experience this and learn together.  I'll be documenting the journey with photos of her rashes and we'll hopefully see them all disappear.  Here are some photos from today... 

 You may have noticed in some of the photos that Hope looks like she's crawling.  She is!!  It's very new that she's crawling on all fours.  I took this video today and it captures all the great things she's been doing lately:  crawling on all fours... motor planning as she figures out how to get to and then pick up what she wants... going from laying down to sitting up... army crawling (or doing the worm depending on how you look at it or what music is playing in the background at the time)... and problem solving!!  Check it out...

And finally - Brian's "Swim Fast" lessons.  He is doing great and having a lot of fun!  Today is day four and he was able to float on his back and flap his arms and legs to keep his face out of the water (for the most part).  His instructor (named Katie!) touched the back of his head here and there- but he mostly did this on his own!  I was really impressed!  (And Brian was extremely proud.)