The Two Annabels!

Annabel Leigh meets Annabel Grace!

Annabel had a very special visitor a few weeks ago...a beautiful little girl named Annabel Grace.  Like our Annabel, Annabel Grace has Full Trisomy 18.  She is now seven years old and she is truly amazing!

Before we were blessed with our Annabel, we were unaware of Trisomy 18.  Of course it was a complete shock to receive the news that our newborn baby was 'incompatible with life'.  So we brought Annabel home with us on Hospice and we made plans to love her and enjoy every precious moment until she was gone.  As a mother, that is really all that I could do at the time; I was unable to read and research Trisomy 18 or reach out to other parents, etc.  My mind was consumed with the daily care of Annabel while my heart was so full of love yet it felt broken, too.  Thankfully, my husband Jorge (ever the stubborn and resourceful man) set out to find out anything and everything regarding Trisomy 18 to help us in our journey.  He somehow found Annabel Grace's blog and after reading it we were filled with so much hope!  He even contacted Annabel Grace's mother Cathy a few times when we needed some general help and information.

So this meeting of the two Annabels was particularly special for us!  We visited and let the girls play with each other and though the visit was far too short, we had a lovely time!  Please enjoy the pics below of Annabel Grace with our Annabel Leigh.  And as usual, Ava had to join in and get in the photos, too!  Thank you to Annabel Grace's nurse for taking the pictures for us!

From left to right:  Cathy, Annabel Leigh (Stinky), Annabel Grace, Ava, Carrie

Stinky was all about touching Annabel Grace!

Stinky, touching again!

And who is that scary skelebones in the background?

23 More Days til Halloween!

Stinky and her New AFO's!

Stinky got some new AFO's!  She has grown so we had to get a bigger size.  We had to get her some new shoes too, she's now wearing size 5!  Yay, go Stinky!  For those who don't remember, the AFO's are little leg braces that she wears while in her stander.  See the pics below!

Her AFO's from last year!

So tiny that fit perfectly in hand.

Gastric Test Completed!

Annabel had her gastric emptying scan done last Friday.  We hope this test will show us how her food is moving through her system when she eats:  is it moving at a normal speed, or too slow, etc.  Our next appointment is this week to see the stomach doctor, we hope to see the results from the scan at that time.  She did great during the test, she was content to look at her mom the whole time, of course!

Test Results Back!

Update: all tests came back normal from Stinky's esophagoscope. We take that as good news, however still no answers to the root cause of her vomiting she experiences once a day or so.

Next step is to schedule a digestion study. A radiologist will examine her stomach and intestines via X-ray while a dye makes its way through her tummy.

Waiting on more info then we will schedule the appointment.

Stinky loves a good shampoo!

Stinky's Socks

The case of the missing socks..closed! 

Team Annabel-Facebook!

Stinky now has a page on Facebook.  So if you're on Facebook, please Like it!

http://www.facebook.com/TeamAnnabel

Stinky's Scope..Successful!

We are so happy to report that Stinky's Scope day was a success.  The GI Dr. took some biopsies during the scope and we should get results in a week or two.  He also dilated Stinky's pyloric muscle, this should help alleviate the vomiting..we hope!

Thank you all for the many kind words and prayers today:  Stinky came out of anesthesia just fine!  She did have some issues staying awake and as expected, her oxygen levels were a bit low.  They monitored her very carefully and kept us at the hospital until 2:45!  Now we are monitoring her closely at home and if she needs oxygen, we will certainly make sure she gets it.  Everything else seems good, so far.

The two pics below are before her scope and after, when she finally woke up!