Thursday, February 9, 2012

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!


  1. Awww, she's such a happy baby!!!
    She looks like she's putting on some weight too! Look at that cute Ross double chin!! haha. Give her a kiss for me! (and Ava too, of course!!)

  2. I love the pictures...thank you for posting. It is all good to know what equipment is out there. We are struggling with Annabel's button. She has the mini-one non-balloon button. Your feeding extention is different and I was wondering if you would mind telling me the brand of the button and the feeding extention with the blue piece on the end. It hurst Annabel right when they are removing the button and then again on insertion of the new button. Thank you for letting us know you had an update via facebook.

    1. Hey Cathy, sure thing! I'll send you info on our feeding adaptors and I'll send you the seizure videos via email!

  3. Forgot to post this. Annabel has been on Erythromycin twice but caused her more discomfort than help. She has also been on augmentin for motility, which didn't help either. Then they placed her on cyproheptadine (sp.) for the gagging/retching/vomitting and we thought it helped for a little bit but them realized it wasn't. She is now on Domperidone and it is giving her so much discomfort that we can't even get all her feeds in. (our goal is to be on total feed and no TPN if possible). So just Tuesday night we discontinued the domperidone after a month of many sleepless nights, also more vomiting, distention, and very elevated liver enzymes.etc.
    I also wanted to ask you about the videos showing seizure activity. Would you mind sending them via my email, if you aren't comfortable posting them on the blog. Annabel has had siezure like activity and our nurses are sure they have seen them but not very often.What appears to be seizures are very short and I didn't think of catching them via my phone to show the doctor. We keep diastat in the fridge. We do know that when Annabel gets septic she has very prolonged seizures but by then we are at hospital. If you are not comfortable showing them to me, I do understand. Thank you again for sharing information that is helpful to our Trisomy world....

  4. I couldn't locate the video on you tube. I went under both names that you mentioned. Let me know if it is under something else.