Posted (Tina) in All Posts on April-8-2009

Ella slept good again last night! Yippee!

Also, she was in a great mood this morning. We thought her mood might stop with her feeding therapy session just before lunch time, but she kept up her tolerance. Kelly moved her to a different room to change up the scenery and although she did not enjoy the feeding, she did much better.

Many of you ask, so I thought I would try and explain. I know that it seems strange that a baby would not want to touch and finger foods themselves (explore on their own terms), but the feeding challenges go beyond not using utensils or trying “normal” techniques that kids respond to. You have to keep in mind that Ella has had such a different experience than most babies. She has experienced so many invasive procedures in her mouth from all her surgeries and months of intubation, she developed an oral aversion early on. Her body moved the gag reflex from the normal position on the back of the tongue to the front of her mouth. She developed an oral aversion because her mouth does not feel safe. Even light touch on her cheeks or anywhere near her mouth can result in her screaming, head violently shaking from side-to-side, turning blue from holding her breath, and retching.

Along with her mouth, Ella barely likes to touch anything with her hands which is why we have tactile stimulation exercises. Using her hands to explore and changing her oral defensiveness requires lots of exercises and training over a long period of time. It is not something she naturally likes to do or can naturally overcome, like many children. For example, when doing the feeding therapy sessions, some children may not even respond to any exercises near their mouth. Instead, you have to work your way from the outer perimeter of the face in toward the mouth, then the outside of the mouth, and gradually work your way into the mouth. This is why you might see the z-vibe (vibrating stick with different ends) that we place on Ella’s cheeks, face and mouth and even in her hands.

Trust me, this is not something that can be fixed overnight or is a simple change in approach. This is a true problem for many children that takes months and years to fix. This is also the main reason why Ella has a g-tube. Her oral aversion and reflux from her NICU stay was so severe that she was doomed to have feeding challenges. The nissen procedure prevents reflux and the g-tube gives us access directly into her tummy to feed her the nutrients she needs to gain weight and grow while we work on the feeding issues. Realistically, this can take years. Her current therapist thinks that maybe in 3 years she might be able to tolerate a majority of food by mouth versus her g-tube.

On the physical therapy front, she is still making strides but again it is slow. Her therapist tried some new techniques today with Ella that require her to bear her weight on her arms and shoulders. It was something new and Ella does not usually respond well to new things. But it is the next step in strengthening her, so that when she sits up and loses her balance, she can weight-bear on her hands, arms and shoulders. Currently, she doesn’t have the strength and simply falls over.

We’re simply thankful for the SVC procedure and all the strides that she has made on the medical front since that time. We’ve lowered oxygen, increased fluid and gained weight, discontinued Captopril and are getting more sleep. That’s plenty to celebrate.

Psalm 145:6-8 (NIV)
They will tell of the power of your awesome works,
and I will proclaim your great deeds.

They will celebrate your abundant goodness
and joyfully sing of your righteousness.

The LORD is gracious and compassionate,
slow to anger and rich in love.