Posted (Tina) in All Posts on May-28-2009

It was a mellow day with the Bun. We went on a walk again this morning to soak up the sun and take a glance around the neighborhood. Ella enjoyed the stroll as she kicked her legs with excitement.

I had a rough morning. Like I’ve mentioned before, sometimes the weight and gravity of Ella’s condition and everything surrounding it can get the best of me. I continue to strive forward but certain days are tougher than others.

The OT session was productive today. We discussed a completely different strategy for Ella’s feeding goals. Right now, we have been using a method of therapy that works on the tactile stimulation along with exposure to foods. Moving forward, we discussed only focusing on the tactile skills and leaving the foods for the future.

Apparently, tactile stimulation is connected closely with feeding skills (she needs those skills before she will really eat). The focus is to desensitize her hands, feet, mouth and lips using various exercises. Currently, we are using dry objects: pinto beans, rice, feathers, beads, etc. We need her to enjoy having things in her hands and around her mouth. Once those go well, we will move to having her play with foods: cooked pasta, whipped cream, jello, baby food, etc. Ideally she would then take the foods she is playing with and explore putting them in her mouth. This way, putting the food in her mouth is on her terms.

This new plan is good for Ella because the feeding sessions are mostly meltdown sessions. She gets so upset with us trying to “force” her to eat foods. With tactile stimulation, it is more like play time with her toys so the stress level is not nearly as high plus it still moves us towards our goal of feeding. It is a good plan for me because the feeding therapy sessions are stressful for me. It is hard enough having to give her a bath and brush teeth much less trying to put food on her lips and in her mouth. I don’t enjoy doing things that make Ella melt down, cry hard and require more oxygen as she is turning blue. Emotionally, these types of instances wear me out during the day. Finally, it is a good move for the occupational therapist too. She wants to be more hands on with Ella but has had limited opportunities. Initially, Ella didn’t know her well enough or trust her. Focusing on the tactile stimulation exercises will give the OT a chance to progress with her relationship with Ella. For once, they will do something together that is fun! This trust will help us to progress to the next steps.

I’m excited to try this new strategy. We came to this plan in the middle of the session today and promptly walked upstairs and started in with the new routine. So far, it was working. Ella was having a good time with her therapist while doing the exercises. Bummer that I did not have the camera present!

I did have the camera present for the PT session, as usual. It did not go as well as yesterday’s session, but was still productive. Ella worked hard!

This afternoon, I had cabin fever so I took Ella on an errand this afternoon. She loved it – got very happy and smiley. It is a lot of work to take her places with all her various pieces of equipment, especially solo, but her excitement makes it all worth it!

I love how Ella grabs her hands and puts them together. Often times, she just sits and stares at them. When we were visiting a close friend last week, she pondered, “I wonder what little Ella is going to do with those hands”. It certainly does make you wonder as she sits and looks at them grasped together. One thing is for sure, it will be fun to see how that part of her story unfolds.

Lisa Tufano on May 28th, 2009 at 9:18 pm #

Keep your chin up! The new feeding strategy sounds great so I look forward to seeing pictures of her exploring her first pudding, etc. on her own terms. 🙂

Grandma on May 28th, 2009 at 10:06 pm #

I know exactly what she is going to do with those hands. She is going to be her Grandmas’ apprentice
Right now she is deciding whether she is a righty or lefty.
Thanks again Ella for your wonderful visit . We all enjoyed you and your Mom and Dad so much, Especially your Great Grandma she cant stop talking about you and how amazing you are .
And how big you are.
I just found out you have caught up in weight with your cousin Lucy who is almost exactly your age she weighs 24 lbs. Way to go Kido
Tina dear I am praying and thinking of you every day you are so amazing !
Love to you all

kristin thompson on May 28th, 2009 at 10:23 pm #

I am hugging you my friend. I’m praying that God continues to put the people in your life who will help the meltdowns go far away 🙂 Ella is going to play drums and give some serious shout outs and hand claps very soon!!! She just can’t decide if she wants to do a high five or down low xxxoooo

love you all,


Brendan on May 29th, 2009 at 3:54 am #

Ella’s new feeding strategy is good for us because we get to see pictures of Ella playing with her food. That is going to be awesome!

Williamsburg on May 29th, 2009 at 10:37 am #

Tina, I know I speak for so many of us who wish so much that we could take on some of the stress and weight of Ella’s life for you, or wave a magic wand and make it go away. Barring that, please continue to know that you’re in our hearts and prayers daily for God to be actively providing the comfort, strength, rest and resources you need.
Who knows, maybe Ella’s spirit already knows this: “Who shall ascend into the hill of the Lord? And who may stand in his holy place? He who has clean hands and pure heart, who has not lifted up his soul to falsehood and who has not sworn deceitfully. He shall receive a blessing from the Lord and righteousness from the God of his salvation.” Ps 24:3-5

Vicki/CO on May 29th, 2009 at 3:40 pm #

You are being HUGGED right this very minute, Tina. You and Josh are absolutely amazing parents, and not all of us could stand the test like you two have. That doesn’t mean it is easy, and you feeling the weight of this test is okay; in fact, you wouldn’t be normal if you didn’t feel that. Ella is so blessed to have you for her parents, and God knew what He was doing when He gave her to you, and we know He will give you all the strength and courage you need each day to walk this walk…and on days like this emotional one, He will gently carry you until you can walk on your own again. We all know how much she has blessed you, too. Thank you, Jesus, for this precious little girl who blesses each of us as we follow her journey. Please know, Tina and Josh, that prayers and thoughts and hugs are being sent your way by all of us who love you, admire you, and lift you up! God bless you…all three!

Joel Snyder on May 30th, 2009 at 8:12 am #

Ella, I am glad to hear that a new strategy is in place for your OT. I am amazed at your progress and can’t wait to see what happens with those lovely little hands. Later. Love,Grandpa!!!!!

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