Day 9- only 21 days to go!

I had a visitor friend today!  It totally brightened my spirits!  Thank you Kathleen. I loved seeing you and I can’t thank you IMG_7893enough for the gifts, coffee and company.

Weigh In day! She was up again. 17.6 kilos.

I also got confirmation that Gabi is definitely aspirating. But the SLP was impressed with her learned behaviors that have become ways to protect herself.  SHe does this kind of dry cough periodically and I never really thought much of it. And she sneezes often even when getting a tube feed.  I have asked about the sneezing and coughing in every clinic we have patients at and I have NEVER received an explanation. until now. She can feel when the liquid is approaching her airway and has learned to cough to get that liquid back into the correct passage… So the liquid doesn’t get into her lungs, at least not enough of it to make her sick.

So we will continue to thicken her liquids and start the vital stim therapy tomorrow. Her SLP will place electrodes on her throat and send impulses when she starts to swallow to trigger those muscles to kick in gear.  In time, this should strengthen those muscles and help her to swallow and not aspirate.

I am concerned. I am concerned about her seeing wires and stickers and her association with those. I am concerned that the sensation will scare her and make things worse.

This probably explains why she was so uncoordinated at drinking liquids or even afraid to swallow.

She’s still having tantrums but today they seemed a little more under control.. until dinner. She wanted nothing to do with dinner. She protested every bite and every offer to drink. I have never seen her behave like that. I took a video of dinner but I can’t figure out how to import a video on here. :(

 I am still at a loss about what to do with this behavior.  Because I am observing her through a 2 way mirror, she doesn’t know that I am watching. So, how can I punish her for something that I’m not supposed to know about??  Tricky.

I requested a meeting with the psychologist,… again …and she wanted to wait to discuss this until the whole team was present. The meeting is set for tomorrow at 1:30. I have lots of questions.

After dinner, I did talk to Gabi and told her that I heard her from the hallway saying NO to Ms. Sheila. I told her that she cannot tell her no and she must eat all of her bites. Gabi insisted that she wasn’t hungry.  I am not sure she even knows what that means, but I did giver her a tube feeding of 5 ounces of pediasure 1.5, which adds up to 225 calories at 3:00, per the orders of the dietician. There is a possibility that she is just not hungry… maybe.

Enjoying the sunshine at the small park

Enjoying the sunshine at the small park

I am going to request that we stop all tube feeds to see if she will actually be hungrier and then maybe be more cooperative. It’s a long shot, but worth a try.  When we got here, she was getting most of her formula at night so during the day we could get her to eat more. It’s very complicated but I feel if we eliminate the tube feeds then we have one less variable to cause confusion.

No deep thoughts tonight. I’m tired, I miss my family, and I’m discouraged. But that doesn’t make me ungrateful or hopeless… we’re just climbing a new mountain and I know we’ll get to the top soon enough.

Rockin out in the chapel

Rockin out in the chapel

Thank you.

Much Love,



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