Pages

Monday, June 8, 2015

Sucking Ability

So I thought Ian had lost all he was going to lose...thinking what little, very little he was still able to do he would always have. It never occurred to me that he would lose more...after all why would I think that. I come on now, really...part of his disease is Spinal Muscular Atrophy....along with that comes losing the ability to eat, walk and breathe. I guess I was in denial and taking it literally...so when Ian started to have trouble sucking his drinks through a straw there were always other reasons for it to be difficult for him. After all doesn't being on oxygen make it harder for one to suck through a straw, what about have a bad night and being too tired to do it, let see what other reasons did I come up with...if we just give him a break and let him have some liquids through the syringe in his mouth, he will start sucking again. Well VRK1 got us again...or maybe just me again....but Ian has lost his sucking ability...not his swallowing ability...just the sucking so for that I am grateful. We are currently giving him liquids through a syringe in his mouth as he still likes to drink...one more for VRK1....one less for us.

8 comments:

Anonymous said...

Tamara Jayne Flax Stay strong Marci Weinberg Scher.

Jessica Woolf Dorsey Can he still cluck?

Heather Lev Ditto was Tamara said!!! And lol to Jessica. Does he still give you the tongue?

Heather Schmidt Young So sorry, Marci.

Jennifer Paradise Baker sorry!

Ezra Aaron Buchdahl Thoughts and prayers

Brenda Bforsma Hanson MJ goes through periods of time where she can and cannot suck. We are praying it will come back

Lauren Agetstein You got him most importantly. He has alot of life left in him. As long as you still have him.

Anonymous said...

Sara Alima Ostrow ((Hugs))

Denise Beland Burdyck Thoughts and prayers for you, Ian and your family!

Teri Ershler Gitlitz My thoughts and prayers are with you and your family, stay strong

Elena Lucini French This sucks. No pun intended. OK, maybe a little intended. I am sorry, my friend. Big hugs to all of you.

Melissa Klawans Cohen For now, let this be his worst problem. The Scher Family rocks!! Xo

Charles R Hentz big hugs for everyone. especially the big man.

Michelle Kampler Schwartz Sucks. Hugs. :-Q

Anonymous said...

Sherie Bober Rubin So sorry. Hugs

Lisa Reid Miller Praying for you!

Leslie Middleman Toll hugs

Jodi Postol Hugs for all of you. Let me know if you need anything.

Helen Weisman Dagilis So sorry. Thinking of you all.

Marlene Ettlin So sorry.

Rachel Schreiber Levitan ugh. sma sucks

Laurie Rubin I'm so sorry

Jamie Nathanson Miller hugs and prayers.

Scot Lippenholz Where's the that sucks button. Don't know what to say

Anne Polakoff King Hugs

Anonymous said...

Harry Blacker Stay strong guys. love to all and see ya soon!!

Danielle Houseal :-(

Keira Silberstein Hugs and prayers to you and your beautiful family.

Mitzi Agetstein Spiegelman You are the strongest family I know, use that strength for good. hugs

Gina Cohen Hugs, big tight hugs

Alicia Katznelson Broth Oh, Marci. {{{hugs}}} and love.

Stacy Berman Lunenfeld Sending lots of prayers. I haven't stopped thinking of you since we saw you at the bat mitzvah.

Anonymous said...

Samantha Gitli Schaefer Hugs and strength to all of you!

Susan Heneson Kornblatt So sorry...so frustrating. Thinking of you.

Jennifer Larsen Orlando So sorry.

Audrey D Kline Hugs to all of you. That stinks!

Lisa Smolen So sorry to hear this.. Thinking of you.

Melody Ballan Cooper You are all super heroes!

Barbara Paige Sending you so much love and good vibes. So glad we got to catch up. Look forward to next time!

Lesley Winer Bogash Marci Weinberg Scher I read this and wanted you to know I care, but I have no words.

Vivian Chait There are no words except to say my heart is with you, the rest of the family, and Ian!

Lara Turkel Fruman Reading this breaks my heart ... Hugs to you and Ian.

Carole Miller Glick Sending you hugs.

Anonymous said...

Jessie Voss 😯 xoxox

Tara Coles Oh Marci. arms around you all.

Mary Shimkaveg Hang in there.. You guys are amazing!

Linda Butler You do put things into perspective for me...praying and hoping for the best for Ian and your family.

Gila Biegacz Sending hugs

Adena Baer Xoxo

Carolyn Hack Kaplan-Solomond Thoughts and prayers are with you

Lori Kaplan Thinking about all of you. Keep strong. Wish there was something more I can do.

Mindy Hammerman Lipsey Praying for your family.
XoxoX

Katie Cullen McGoey

Maureen Jack Herban Praying for you guys. Love you!

Anonymous said...

Keri Karnbad Romanini Prayers for your beautiful family!

Arlene Stein that sucks. I thinking of you and praying for you all.

Nancy Polack Kaplan Our hearts are breaking for you. God bless.

Merle Lemler Brenner Thinking of you and holding a place in my heart.

Susan Ritmiller It just isn't right this sweet boy and his family have so much to deal with. You do an excellent job of keeping things "normal" for the family. Praying for your whole family.

Ryan Forman Praying for your family.

Anonymous said...

Thinking and praying for all of you to find strength...Irene and Larry Gellar