Posted (Tina) in All Posts on November-4-2008

Ella had a great day with Kelly. It was a full day with occupational therapy and physical therapy. And in-between, the weather was still nice outside so her and Kelly took a stroll.

Occupational therapy went well. While having Ella sit up in her chair, the focus was still centered about the basics like getting Ella to tolerate different textures around her mouth. For example, she does not like a warm, wet washcloth applied to her cheek (she pulled away and began to cry). She is protective on her face and especially her mouth area. The OT recommended doing this exercise heavily during bath time.

Today, Kelly tried giving cran-rasp juice on the binky (2:1 ratio). She seemed to tolerate. Then, they gave the cran-rasp in a bottle and she took about 3 gulps. It was something different than apple juice, so I’m happy she seemed to tolerate it. The plan is to alternate between binky and bottle with apple juice and cran-rasp juice to up flavors and textures. Also, to continue time in her chair and tilt up to 90 degrees slowly until tolerated.

On the physical therapy front, she recommended that we begin to change Ella’s point of view or position when she is playing on her mat. Also, to experiment with different positions to get Ella’s visual input horizontal. It is exciting to hear about the new recommended exercises. It just means that Ella is moving forward.

We thought Ella might be getting too wet, so we have given 2x day doses of Aldactazide (diuretic) for the past few days. I’m convinced that it is helping and I see trends that she is moving in the right direction. When I laid her down for sleep, her beats per minute were around 150 which is normal. And we will be watching to see if she dips back down to 105-120 when she is sound asleep.

One thing is for sure: she is cute. She has not lost any of that noise!

Thank you for the support and prayers. It means so much to know that there are others that are lifting our family up in prayer.

Psalm 119: 10-12
I seek you with all my heart;
do not let me stray from your commands.

I have hidden your word in my heart
that I might not sin against you.

Praise be to you, O LORD;
teach me your decrees.

Joel Snyder on November 5th, 2008 at 4:54 am #

Ella, You are looking and doing fantastic. Keep up the good work and say hello to Super “Kelly” for me. I am at work and said hello to the Dinos for you. Taco and Manny said to say hello to you. Give Mom and Dad a big hug and kiss for me. I will catch you later. Love,Grandpa!!!!!!!!!!!!!

Chambers Family on November 5th, 2008 at 6:54 am #

She looks like she is headed for the ski lodge and ready to take on snow boarding. So excited to hear about her forward movement. How was work?

Eve Johnson on November 5th, 2008 at 10:07 am #

She looks great! If you can figure out how to get her to tolerate a warm washcloth around her face, let me know. My 18 month old hates that, too!

Williamsburg on November 5th, 2008 at 2:25 pm #

Have you hired a consultant yet to talk to Ella about her future career as a fashion stylist? She’s going to bring those headbands back even bigger than Olivia. So glad to hear of relatively calm, progressive days and good forward motion on the fluid front. Keeping you in prayer with your first week of work, Tina, and all of you for health, rest, renewal and grace. All our love. XOXOXOXO

Kara on November 5th, 2008 at 9:46 pm #

Would you do something for me? Would you put mashed potatoes on her hands and then video tape her reaction? I’m giggling already in anticipation. I can’t wait to see what her hands think of the texture and then what happens when she puts it in her mouth. Oh the faces will be priceless.

Post a comment

Name:  (required)
Email:  (required)