Monday, February 18, 2013
Sunbeam
One of our close friends made this sweet slideshow of Stinky. This is very similar to the slideshow that we played at Annabel's service. Enjoy the sweet pics!
Friday, January 11, 2013
I Still Would Have Chosen You
Another Trisomy 18 Mommy posted this beautiful poem on her Facebook page. The words are so perfect and true, we just had to share:
I Still would have chosen you - By Terri Banish
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you.
I Still would have chosen you - By Terri Banish
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you.
Tuesday, December 11, 2012
Sweet Annabel Received Her Angel Wings
Saturday, December 8, 2012
Annabel is sick :(
Annabel suffered a cardiopulmonary arrest on Wednesday morning and was resuscitated. She was airlifted to Cook Children's Hospital in Ft Worth where she is in the PICU. She is on a ventilator and her lungs continue to be sick.
Tonight, as you lay your heads down to sleep, please include Annabel in your prayers.
For regular updates please like her page at www.facebook.com/TeamAnnabel
Tonight, as you lay your heads down to sleep, please include Annabel in your prayers.
For regular updates please like her page at www.facebook.com/TeamAnnabel
Thursday, November 22, 2012
Sunday, November 11, 2012
Monday, October 29, 2012
Monday, October 22, 2012
Nine More Days til Halloween!
The countdown continues...starring Annabel as: The Stinky Pirate! The second pic is our favorite. :)
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| Arrrr, matey! |
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| Shiver me timbers! |
Thursday, October 18, 2012
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!
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!
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| From left to right: Cathy, Annabel Leigh (Stinky), Annabel Grace, Ava, Carrie |
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| Stinky was all about touching Annabel Grace! |
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| Stinky, touching again! |
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| And who is that scary skelebones in the background? |
Monday, October 8, 2012
Monday, September 10, 2012
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!
Her AFO's from last year!
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| 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!
Wednesday, August 22, 2012
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.
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.
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| Stinky loves a good shampoo! |
Friday, August 17, 2012
Wednesday, August 15, 2012
Team Annabel-Facebook!
Stinky now has a page on Facebook. So if you're on Facebook, please Like it!
http://www.facebook.com/TeamAnnabel
http://www.facebook.com/TeamAnnabel
Tuesday, August 14, 2012
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!
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!
Monday, August 13, 2012
Stinky's Scope!
Tomorrow is the big day! Stinky is getting her endoscopy on her tummy tomorrow morning. We must be at pre-registration by 6am..that's so early! They hope to begin the procedure by 8am at the latest.
Please pray that all goes well: the endoscopy is a common procedure and at the most lasts 45 minutes or so. But Annabel must be anesthetized for the procedure, and that is why momma is so worried! We pray this scope will give us some insight regarding Annabel's tummy/vomiting issues. We will keep everyone posted tomorrow, for sure. Until then, think of Stinky, pray with us..and look at how sweet Stinky looks, playing with her little sister:
Please pray that all goes well: the endoscopy is a common procedure and at the most lasts 45 minutes or so. But Annabel must be anesthetized for the procedure, and that is why momma is so worried! We pray this scope will give us some insight regarding Annabel's tummy/vomiting issues. We will keep everyone posted tomorrow, for sure. Until then, think of Stinky, pray with us..and look at how sweet Stinky looks, playing with her little sister:
Thursday, August 9, 2012
Music Time!
Stinky's Xylophone. Please pay attention to the very beginning after
you hit play....as usual, she stopped playing as soon as she noticed I
was recording! :)
Wednesday, August 1, 2012
June, July..where did you go?
It is hard to believe, but the long, hot Stinky summer is almost over! Annabel's summer school session ended last week. Sadly, she had to miss her last week (just three days, though!) due to a summer cold that caused some nasty snots and congestion. We did a lot of pat the back, suction the nose and breathing treatments and she is doing much better now.
She had such a great time in her summer school classes. Now she is on holiday until the fall semester begins...on August 27th! Take a look at some pics that her teacher sent me:
In other not-so-good news: Stinky is still vomiting...every other day and most of the time, every day. We tried increasing the erythromycin but so far it hasn't helped much. We have an appointment in a couple of weeks to get an EGD (scope) done. This will allow her GI doc to take a look at her esophagus and stomach so we can figure out what's going on. We know already that she has problems with motility and most likely reflux..again, due to her low muscle tone and the other usual T18 factors. But we hope the scope will provide some answers! We will keep you all posted on those details as they come. Until then, please enjoy another pic of Stinky when she was waiting on the summer school bus! Happily waiting!
She had such a great time in her summer school classes. Now she is on holiday until the fall semester begins...on August 27th! Take a look at some pics that her teacher sent me:
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| Music Time! Teacher said that Stinky loved her piano! |
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| Physical Therapy Time! Stinky loves getting on the ball! |
In other not-so-good news: Stinky is still vomiting...every other day and most of the time, every day. We tried increasing the erythromycin but so far it hasn't helped much. We have an appointment in a couple of weeks to get an EGD (scope) done. This will allow her GI doc to take a look at her esophagus and stomach so we can figure out what's going on. We know already that she has problems with motility and most likely reflux..again, due to her low muscle tone and the other usual T18 factors. But we hope the scope will provide some answers! We will keep you all posted on those details as they come. Until then, please enjoy another pic of Stinky when she was waiting on the summer school bus! Happily waiting!
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| Hey! Do you like my new bangs? :) |
Wednesday, July 18, 2012
Pirates! Argggh, matey!
Stinky has enjoyed her 'Pirate Week' at summer school so far. She made a cute pirate picture and she got to dress up as a pirate, too!
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