Tuesday, July 10, 2012

5...4...3...2...1... Blast off!!!!

Blast Off is how Super Noelie loves to depart from any location and she loves to shout it out on the top of her lungs.  Funny Noelie she is.

This weekend was another fun weekend for the girls.  As we are planning our move back to NY we really wanted to take advantage as much as possible of discovering Cincinnati.  It is an extremely child friendly city where family entertainment is a top priority.  From a beautiful zoo, to a fun aquarium, a miniature train museum, Coney Island a la Cincy, and many other things to entertain families.  All Saturday and Sunday we were busy entertaining the kids with all that Cincy had to offer.  We went to Entertrainment Junction to see minature trains, a butterfly exhibit and the contemporary art museum.  The girls had so much fun that one nap-time came they crashed for 3 hours.  They even got to see Santa in July!!!!We all loved it!!

But time has come to say goodbye to Cincy, the Cincin Angels and all our new friends.  V packed the entire house this past week and tomorrow morning is the "blast off" day.  Movers will pack a truck and then we leave Cincy to PA, where V and the girls will stay at los abuelos until our new home is ready to move in.  It will give los abuelos some time to catch up with the girls and V some time to take a much needed break.  I will continue my journey and stay in NYC for work, while commuting back in the weekend.  It will be hard to be separated from my ladies.  The trip will take 2 days because Cincy to PA is about 11 hours.  Forcing toddlers to travel 11 hours in one single trip seems unreasonable especially because the girls rarely sat in a car let alone a long trip.

As to Miabelle, Miabelle has finally been cleared to proceed with the final step of the BMT procedure, which is immunizations.  In order to proceed with immunizations several months need to pass since the patient's last IVIG (infusion of anti-bodies), once several months have passed the infused anti-bodies should be at a low enough level to allow vaccination to start and succeed.  If you start immunizations too early you risk for those vaccines to fail, leaving the child exposed in the future to such illnesses as the infused anti-bodies would fight the dead as well as live viruses injected under the immunization processes.  Miabelle's anti-bodies are low enough to proceed.  The first step will be dead viruses, like the flu, which in general should not cause havoc.  V for example does get flu symptoms from the flu vaccine, so side effects can occur.  However live vaccines (live virusses) are a bigger concern because a live vaccine can spread if her newly established immune system is to weak to control the vaccine allowing it to spread.  It is rare but does occur with BMT patients.  We are still pacing like gorillas in the mist and thus any thought of a potential hick-up makes us nervous.  We will see.

Let's not forget Super Noeile.  Super Noelie has been acting up a little.  She must feel that we are leaving.  Today she bit Miabelle really hard on three spots on her arm.  You can imagine the anger V and I felt when we saw the marks on Miabelle, who 6 hours later were still showing.  She has become a little rebellious about eating and throws some massive fits when she doesn't get what she wants.  Not the normal Noelie who is a very easy and fun child.  Maybe its the terrible 2.5s or the fact that she notices change and her little piece of heaven is now boxed in ready to leave.  Who knows but we hope she calms down because this behavior is unsustainable.

We have to be honest, Miabelle is no angel either.  During the week Cincy Angel Ashley came to babysit allowing V and I to have a beautiful evening out with dinner and a movie.  It was a magical evening, a delicious restaurant called Bouquet (Ashley's recommendation) followed by Disney's horrible movie "Brave".  When we came home Ashley informed us that Miabelle, while playing during bed time, had pulled Noelie's hair several times hurting Noelie and forcing Ashley to intervene.  We have noticed that Miabelle has been doing this many times and despite our efforts to correct this behavior she continuous.  I guess: you pull my hair? I bite you!

Oh behave girls!

So the place we called jail at first, then hell, eventually our cocoon and finally our little piece of heaven has come to an end.  We hope to create our little piece of heaven in the NYC area soon.  We truly enjoyed living in Cincy, especially a few months after BMT.  We will miss Cincy and its awesome peeps!!  Hopefully some of them Cincin Angels will come and visit us.

Goodbye, till soon, Cincy!

3 comments:

  1. It has been such a joy and at times a heartache, to follow your blog. Your family will continue to be in our prayers as you continue in this next step in your lives. Your strength, endurance, love, honesty, and sense of humor are all inspiring. Your girls are beautiful! And it's normal for these unsavory behaviors to begin at this age. It's Normal!! Don't you love it!? Thank you for sharing your family with your readers. Hoping for an uneventful move for you all and looking forward to more blog entries.

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  2. So pleased you can start the next stage of your lives. All of you Gilliers have been heroes. Your journey through HLH has been humbling and makes me appreciate what I have every day. Thanks for sharing your HLH lives. Mavis

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  3. To Giggly girl and ever so BRAVE Miabelle, to Super and ever so growing 2.5 yr old Noelie, to the ever so most HEART FILLED couple, Oli & Vanessa.It certainly has been a long and arduous journey sometimes into the abysmal that has brought all of you together, and showing us HUMILITY.
    We will continue our prayers, send you all positive wishes, and lots of love. Continue to be STRONG and stay STRONG..
    All your fans are behind you and along side of of you for support..
    Love Don & Cookie

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