Posted (Tina) in All Posts on January-6-2009

Ella had a busy day with OT & PT, so she was caught resting her eyes several times today.

The PT session went well. Not much new to report on the physical progression. Just continuing to do exercises and activities throughout each day to strengthen her.

The OT visited and noted that Ella’s feeding significantly decreased (if you remember, Ella had that honeymoon period where she took a jar and a half over 2 days!). Today, she took 2 bites and then melted down as you can see below. One suggestion from the OT today was to change the environment to see if that helps (in front of mirror, in her room, etc.). They tried it today on Ella’s mat.

Just so that everyone knows, we have tried letting Ella explore on her own with foods. It is something we have tried periodically since she was real young, as the OT therapists recommended. Unfortunately, I think the “normal” response for a child to explore is not there for our girl when it comes to food. As soon as you put food out to let her explore with her fingers, she pulls her hand away. She starts to cry, in many cases. So, you might notice that many of the exercises we mention and/or pictures of the z-vibe tool are geared around sensory stimulation and working towards having her desensitize, so she realizes that it is a safe and fun thing to do.

For example, we have to use warm and cold cloths and wipe her face each day, for stimulation reasons as well as hygiene. There is a technique the OT described today where you take a soft brush and use with firm pressure in a continuous motion over the surface of her arms, back and legs. Then, you follow it with quick thunks to the spine, shoulders, elbows, wrists, knees, ankles, etc. We use the z-vibe tool in still mode as well as vibration mode throughout the day on her cheeks, mouth, hands and feet. We are told to massage her feet and hands. Lots and lots of touch and sensory stimulation. Heck, we even have to take 15 seconds of torture each morning to attempt to brush her teeth. Boy, she hates that activity!

Also, we try and highlight the high moments and smiley pictures of Ella throughout the day on the blog. But keep in mind that she retches (like dry heaving) several times throughout the day, even when she just takes a drink. With that in mind, it makes it a bit easier to sympathize with why Ella may not have a high motivation to stick things with different tastes and textures in her mouth (being intubated for months did not help either).

For Ella, eating is not as much of an instinctual activity. We have to literally teach her to do something that for most babies is completely natural. She is still trying to figure out the coordination of how to taste, swallow and breath in harmony without aspirating!

In the meantime, it is lots of work for her versus a mindless, tasty time. Ultimately, we know that this is just a season and part of the whole adventure. It’s just going to take patience and discipline from me, Josh and Kelly to get her there!

My last thought before retiring for the night:

Proverbs 21:21 (NLT)
Whoever pursues righteousness and unfailing love
will find life, righteousness, and honor.

loren lizotte on January 7th, 2009 at 6:30 am #

Hello Folks. Sounds like there is a lot of work left to be done. But I know you guys can over come it. Ella your mom and dad are one of kind. Make sure you let them know that 🙂

Fran Jarrett on January 7th, 2009 at 10:48 am #

Ella sure loves the many frog covers her Grandma made during her visit!
God Bless you all and continue to keep watch over you.

Eileen on January 7th, 2009 at 2:44 pm #

HI…what an amazing road you have had! She is beautiful. There is nothing more precious to tug on your heartstrings. Kids get me every time. Keep up the faith and love. Never listen to the odds!

Joel Snyder on January 7th, 2009 at 3:32 pm #

Ella, I am so proud of you and your Mom,Dad,Kelly and the PT and OT for keeping up the progress forward. This will all be just a memory on the journey to your recovery. I hope the rest of the week goes well for you. I will be watching. Love,Grandpa!!!!!!

Rainey Family on January 7th, 2009 at 3:56 pm #

Hang in there guys! Oh, and you’re not alone on the tooth brushing! My 3 year old HATES it too! Hugs to you.

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