Silly Stinky!

Stinky was caught pulling out her feeding adapter tube today.  She didn't even try to hide it.  She decided to chew on it while her food continued to run through the line.  Can you see the little drop of formula on her arm?  Silly Stinky, leave that tube alone!

  Remember when she pulled out her nasogastric feeding tube?  She was just four months old!  Silly girl.

Happy Mother's Day!

Happy Mother's Day! 

'A man's work is from sun to sun, but a mother's work is never done.'

A special shout out to our moms, Cynthia and Rocio.  You both rock!  :)  We love you so much and thank you for everything!

Now, some pics below:  The first few pics are my Mother's Day gift that Stinky brought home from school.  Yes, I know that Stinky didn't actually make my gift, but I was still so happy to receive it!  I remember making homemade gifts for my mom in school and it was so much fun!  It was even more fun watching my mom's smile/reaction each time I gave her one of those handmade gifts. 

I just love it:  My little stinker is a Big Stinky now, she goes to school now AND she brings me cute Mother's Day gifts!

The rest are just some recent pics of me and Stinky and one with Ava in the park.

Stinky Goes to School!

Since Annabel has turned 3, she will no longer receive her therapies from Early Childhood Intervention (ECI).  She is now eligible for the Preschool Program for Children with Disabilities (PPCD). 

PPCD:  This program includes physical, occupational and speech therapy.  This program also includes normal preschool activity such as outside play, music time, circle time, story time, etc.  Can you believe it?  Stinky is going to school!  Stinky has a full-time aide that is always with her, she even rides the bus with Stinky to and from school.

Stinky rides the bus, too?  Yes, she does!  So far, so good:  Stinky seems to enjoy her school so far.  The teachers and her aide have commented on how happy Annabel is and that she is a hard worker, too.  So far, Annabel is ready for a nap as soon as she gets home, so she IS a hard worker!

Momma cried on the first day and cried on the second day, too.  But the second day was also the 'first' day for Stinky to ride the bus.  We are very excited, just nervous, too!  School will be great for her but also hoping she doesn't start getting sick all the time.

The photos below:   Stinky waving with her face behind a blanket.  She is still very sensitive to sunlight, so we cover her up.  But we wanted her face showing for one photo, so that's why she is turned to the side in the other photo!  She's not scared of the bus, she's mad at the sun! 

Happy Birthday, Sweet Annabel!

Can it really be?  Yes, our Annabel has turned three! 

We are so thankful for every single minute, hour, day and now three whole years with our Little Stinker!  We had an awesome birthday party to celebrate, please enjoy the birthday slide show below. 

We love you, Stinky!  You have taught us and our friends and family all so much in just three years.  We are so blessed.  And you are truly a gift from God.

For the moon never beams without bringing me dreams
Of the beautiful Annabel Leigh;
And the stars never rise but I feel the bright eyes
Of the beautiful Annabel Leigh.

Happy Easter!

Happy Easter from all of us in Stinkerville!  So far we have enjoyed a lovely Easter Sunday together.  Yesterday we experienced our first Easter Egg Hunt and it was so much fun!  Please enjoy the great pics below.

Stinky in her Easter Sunday Best!

Stinky, what are you doing to your little sister?

Aha, Ava triumphs!  And Stinky just laughs.

Ava's first Egg Hunt!

Mommy helping Ava..

Daddy helping Ava..he was a better helper than Mommy.  Look at that full basket!

Yes, it was Stinky's first Egg Hunt, too!  But she had more fun playing with Mommy's hair.

..And touching Mommy's face!

Happy Valentine's Day!

Be Mine!

Sweetheart!

 

 

 

My Silly Valentine!

 

 

Lovely!  Wait...is that Stinky's foot in the background?  :)

Stinky Bizzzzzy Bee!

Stinky has been a little busy bee lately.  In the last two weeks she has met with the neurologist, the GI doctor, and a great PA for a new G-Button replacement!

Neurology Visit:  Even though the EEG did not show any seizure activity we met with the neurologist to discuss her seizure like 'symptoms'.  The neurologist did confirm that an EEG may only show seizure activity if the patient happens to be having a seizure during the EEG.  I described in detail what we've seen at home and he said that it sounds like seizures to him, but it is hard to diagnose without EEG tests showing seizure activity or without witnessing a seizure while in progress.  So that's when I said ok then, how about a video showing the so called seizure?  He said that sounds great, and took a look.  After reviewing the two videos that I recorded on my phone, he did say that yes, Stinky is having some seizures.  I'm so glad I recorded them!  She is taking some medicine for it now, twice a day and so far so good!  We will monitor her progress and we meet back with the neurologist in a month or so.

GI Visit:  The vomiting continues so we saw the stomach doctor again to discuss our next option.  Stinky is now taking Erythromycin four times a day.  This antibiotic sometimes helps with issues regarding motility and I found out that quite a few other Trisomy 18 kids take it and it does help.  So we will be taking it for 30 days and we hope it helps for us, too.  See the pic below of Stinky in the exam room, waiting to see the doctor:

New G-Button:  Well, Stinky's G-Button broke again and thankfully it was late at night and after her last feed!  It was just the safety plug that plugs into the feeding port, so we were still able to feed her the next day, too.  Our GI Doc made an appointment for us and we had it replaced with no problems!  Poor Stinky cried right when it happened but she was already smiling in the car on our way home.  I asked the PA if I could take a quick pic of the new button before he pulled the old one out and put the new one in.  Even though this is how she eats everyday, it is so weird to see the button first and then think of how it is in her tummy and works just fine!  Pics below are Stinky smiling again, before the button change of course...then a pic of the button before it was popped in, and a pic of her new button while she's eating.  So awesome how it works!

Long Time--No Post!

Greetings from Stinkerville!  Long time--no post, indeed!  It is getting harder and harder to keep up with the blog, but I'm trying!  Annabel is hard work.  Annabel plus Ava (walking and now eating regular food) is even more hard work.  We are busy, busy girls.  So busy that blogging is only possible when that rare event occurs:  Annabel and Ava both napping at the same time.  So now is my chance, and we have several updates for all to read.


First, we had a very Merry Christmas:  in Orlando, Florida!  We did what I thought was nearly impossible, we drove there and back..you can read all about that below.  But while there, we had such a lovely time.  Annabel got sick just one time while we were there, she did great!  Both girls had tons of fun, and we were so happy to be part of Ita's 80th birthday party celebration.  Thank you to the entire Burbano and extended Families that we shared time with...too many members to name, but we love you all!  Great company, great music, great food!  Sadly, we were all too busy enjoying such quality family time that we have just have one photo to share from our Florida trip:

Group Photo at Ita's Big 80th Birthday Bash!

Second, the drive to Florida and back:  crazy stressful!  It took us two full days to get to Florida and two full days to get back.  Jorge did all of the driving with me in the backseat with the girls.  So not only was Annabel getting sick during the drive there, but so was Ava.  Turns out she gets carsick after two hours or so.   And then we also had to make frequent stops for diaper changes, cleanup and feedings, etc.  We are so thankful for Rocio and Glen, who followed us all the way there and back and helped us out each time we had to stop.  We made that long drive each time by driving all day the first day, stopping in Louisiana to stay overnight, then getting up early and driving all day again.  Finally, we made it home safe with one tiny crack in our windshield and after dealing with a blown tire at 9PM on a busy two lane highway.  Did I mention the drive was crazy stressful?  Did I mention how thankful we are that we had family following us? :)  Now, with that being said, we were oh so happy once we got back to Texas!  Nothing against Florida, it is a lovely state....but home sweet home, right?  So naturally, the girls celebrated their sweet Texas Homecoming in their brand new outfits they got for Christmas.  Thank you, Uncle Brian:

Stinky says, 'Hello Texas!"

Ava says, "Howdy, Texas!"

Next, Annabel's EEG appointment.  Remember, we had the appointment scheduled shortly before Christmas?  The test itself was quick and easy and Annabel did great.  They wanted her to fall asleep for the test and she did just that...but not after tossing and turning and rolling around a bit, of course.  They had to wrap her head up because the electrodes kept coming off her head:

Well, the results came back with 'abnormal' brain activity.  Of course we expected that with the Trisomy 18.  The EEG did not show evidence of any seizure activity, but the doctors still want Annabel to see a neurologist.  So we have an appointment at the end of this month.  Not sure what will happen then but we will keep you all posted.  


Lastly, we hope our readers enjoyed their Christmas and New Year, because we sure did.  This was the best Christmas ever!  The best ever because we are so blessed.  Stinky is still with us!  And can you believe that she will be turning 3 in April?  Truly Amazing:

Mommy with Annabel

Daddy with Ava