Last Day of School!

Well, Stinky's last day of school was on Thursday, May 31st.  I got some good pics of her smiling while they were loading her onto the bus.  It was cloudy that day, so there was no sun to make her mad!  We are now getting ready for summer school, woohoo!  We get to meet her summer teacher next week. 

Stinky also got a new g button put in.  The GI doc said she had grown out of her old one.  What?  Stinky growing is ALWAYS good news!  So far, it's working great.  It's a different button, this one has a lock on it so it will be harder for her to pull it out when eating...we will see how that goes. 

Playing with her rings while waiting for the bus!

Still waiting for the bus...

Yay, finally getting on the bus!

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!