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!