Thursday, January 28, 2016

Communication and Swallowing

The last few months, we have experienced more difficulty communicating with Ian, especially when fatigue has set in. This has become increasingly frustrating for all of us.  We usually rise to the task and one of us can figure out what he is saying. It may just take a little bit of time. As evenings come, his "s" are difficult for him to get out. Smiles are a little harder for him. We have moved onto blinking eyes for yes.  Don't worry he can still stick out his tongue. ..that's still no. He is using his eyes a lot more to look in the direction of what he is trying to tell us and then we start the guessing game. We have yet to not figure out what he wants or needs. We will continue to figure out ways to communicate and understand our little man.

Over the past few weeks, we have noticed a lot more drooling.  His hospice nurse and day nurse chatted about it today. We could give Ian medicine to dry up his secretions however that increases the risk of plugs, which are life threatening to him. Increased drooling is also a sign of trouble swallowing (this is something I just learned today). Nurse T did some listening and thickening of his liquids until Ian said they were going down easier. The thickening of his liquids will hopefully make sure they go down correctly and continue to prevent aspiration.

This all has been a little hard for me to take as I was hoping we had seen all the disease progression we would see....I told Brian, stupid me....he changed it to wishful thinking. Whichever way, I look at it, I hope we don't see anymore for a while.

Enjoy your loved ones. Treasure yesterday,  dream of tomorrow but live for today.

1 comment:

Marci Scher said...

Alicia Katznelson Broth (((hugs)))

Sherri Asher Sending hugs

Sherie Bober Rubin 💋 ❤ 💔

Julie Onnembo HUGS!

Connie Rosenthal Berman ❤

Ann Brown Gorton 💗 💗

Deana Munchow I can only imagine how hard that is for you all. You are always in my thoughts and prayers.

Jill Pelovitz Well written as always Marci. This post really touched me. We have struggled with feeding, swallowing and communication with Nadiya and I know how difficult it is. For us it has always been an existing challenge but for you it is a regression and that must be even more difficult. You are such a strong voice for families like ours. I admire your ability to share this journey. Thank you for sharing your beautiful family with all of us. I am thinking about you.

Britta Hubbard Hoffman Xoxo

Chantal Levy Reznik Thinking of u

Steve Lunenfeld Thinking of you and Ian always.

Marlene Ettlin ❤ ❤ ❤

Leslie Middleman Toll It makes me so sad to read this. I can't imagine how difficult each little change is for you to watch and for him to experience. I wish there was some way to help.

Heather Schmidt Young *hugs*

Stacy Berman Lunenfeld Hugs and kisses!!!

Monique Erdos-Gertner You all are so so brave. I admire you all!

Andi D'Eugenio Resnick Xoxoxo

Jamie Nathanson Miller You are so many people's warrior.

Janice Orsburn Give him some hugs from us and then hug each other ❤

Audrey D Kline Hugs to all of you.

Leslie Dickman Hollins Sends hugs to all of you.

Diana M Smith 💕 😎 😜 🤗 Keep up the good work, Ian 💕

Judy Schwartz Sigh.......

Sara Alima Ostrow Hugs

Rachel Schreiber Levitan Not like

Melissa Klawans Cohen Xo

Keira Silberstein I cannot begin to imagine what you guys are going through. I am keeping your family in my thoughts and prayers. *hugs*

Carole Miller Glick Thinking of you & sending you hugs.

Heather Smith Macchia Hugs

Sheri Knauth You continue to inspire and deliver a message of hope and perseverance. Love to your family.

Renee Valentino Block Always keep you guys in our prayers. You are the strongest mom I know.

Annelise Sullivan I'm sorry. Keep fighting the good fight, Ian. 💪🏼

Katie Cullen McGoey 💜 💜 💜 🎁 🍀

Gina Cohen Live for today & cherish the moments. Love & light to all of you. Ur always in my thoughts.

Dara Schapiro Schnee You re very brave and strong. Sending prayers your way.

Michelle Kampler Schwartz Heart loving, heartbreaking... <3

Gila Biegacz Sending hugs

Ellen Dunn Davies Prayers to your family. Again, if I can help in any way, please call. ❤

Adena Baer 😘 😘 😘

Mitchell Cooper (((Xoxoxo)))

Tamara Jayne Flax Love you Marci Weinberg Scher.

Lanaye Hoover Thinking of you all!!!

Jessie Voss Xoxoxxoxo 💜 💜

Michelle Bar-av Love you all!!

Robin Katcoff I love you end line. Always makes me really "be with" my loved ones.

Nancy Polack Kaplan Prayers and love to you. Hoping they find some solutions. For secretions perhaps a little suction device like in the dentist office that curves around the lip? You've probably thought of everything but it's a thought.

Elizabeth Shamash Weatherholtz Thinking of Ian....

Lisa Kutschman Thinking of you guys ((((hugs))) xo

Michelle Levine Davis XXOOXXOO

Sally Weintraub Grobani Thinking of you all....

Paige Weinberg Schwartz Big hugs! Shabbat Shalom 💜

Jill Rosenthal 💜

Sharyn Rosenberg Stein 🙏 ❤ 🙏