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Friday, September 19, 2014

Changes Oh Changes

Brian and I recently met with Ian's Gilchrist MD and social worker in order to update Ian's care. When we first started with Gilchrist our focus for Ian was quality of life. Brian and I have always said we would do what we needed to do in order for our children to be happy. We have always advocated for our children, as children they can't advocate for themselves, especially those with medical complex situations. We have changed his main focus to be comfort and quality of life. 

Ian has been more tired lately, napping at least 2-3 days a week. He prefers to be home, going out has become more challenging for him.  We are starting to learn how to really listen to him and to read thru the lines with what he is saying...he is sad when he is at school and happier at home. Based on that along with the decreased energy and increased fatigue, Ian will be starting Home and Hospital over the next few weeks. I have been in contact with school and an IEP meeting has been schedule to get this change in place along with his team being able to update his IEP goals. Currently they are education based and we want to them to be more fun with some educational component to it. After all, why shouldn't he be able to have as much fun as he wants. 

The Gilchrist child life specialists has been working with Ian to find out what some of his wishes are regarding his wants, needs and his care. He was able to share with us that he does still want to go to the hospital when he gets sick as long as they are going to be able to make him feel better. Thru the wonderful work the child life specialist does she was able to get Ian to express that he does not want to die at home. He wants to be either in the hospital or some place else. 

Over the past year, Ian's scoliosis has increased to over 70 degrees. We have had many conversations with many different people, professionals and non-professionals, regarding surgery. We have seen 2 different specialists who each recommend different procedures, one would do a growth rod procedure which would require addition surgeries easy year, the other would do a spinal fusion. We have decided, if we do surgery, we will go to DuPont to have the spinal fusion done. We know there are risks with doing the surgery as well as if we don't do it. Ian's back pain has increased...which we hope would be reduced with surgery. We have been in contact with DuPont and they are already scheduling into January...we know we don't want to effectively put him in the hospital at that time of year so we are looking at sometime early spring to schedule (in case we decide to do it). This gives us time to explore non-invasive options, such as getting an in-home PT evaluation done to help with positioning in bed and in his chair, as well as pain control. 

So there have been changes oh changes....treasure, dream, live.

1 comment:

Anonymous said...

Tamara Jayne Flax Changes can be tough. Just keep pushing forward. One step at a time.

Sherri Asher Deep breath and push forward, sending hugs and prayers always

Jennifer Paradise Baker Marci, I admire you so much!

Anne Polakoff King You continue to be my hero.

Laurie Fox Schimmel Your family is always in my thoughts! Thank you for sharing your story!!!

Jody Levin Sacks Thinking of you and your family

Adina Levitan I continuously marvel at your family's strength.. sending you all my love... please give ian and becca a big squish from me

Debi Gersh Van Camp You are an amazing family. Xo

Sandra Huller wow....that's-all-i-can-say....wow-you,-ALL-of-you-are-absolutely-amazing..your-strength,-your-love,-your-everything-you-are-my-hero-and-true-role-model-LOVE-you-sooooo-much!-thoughts,-hugs-prayers-and-LOTS-of <3 to-you-all!

Sheri Pazornik Goldscher One day at a time. Somehow, you and Brian have always known what is best for your family...

Sheri Knauth Home is his blessing. You are his blessing.

Karen Schmidt McClelland xoxoxoxo

Gina Cohen I will miss seeing Ian & his tongue in the halls of Chatsworth but Ian's comfort & happiness is what's important. Sending strength & hugs to all of you.

Sherie Bober Rubin My thoughts are with you. You really are a rock of inspiration

Annelise Sullivan Sounds like you're handling the changes pretty well.

Michelle Rosen Heyman Thinking of you and your family - you all are so strong!

Arlene Brown Stein I am always thinking of you.

Jamie Nathanson Miller prayers and hugs.

Ezra Aaron Buchdahl Thoughts and prayers

Susan Hillebrand Schwartzman Our thoughts are with y'all...you and Brian are amazing parents who love love their children!

Sara Alima Ostrow Sending lots of positive thoughts and prayers as you adjust to the new changes.

Stacy Berman Lunenfeld You are always in my thoughts and prayers! Ian is beyond lucky to have you as parents.

Carol Zika Hugs

Michelle Kampler Schwartz It's amazing that Ian was able to articulate what he wants. And it's a blessing that he has you to love and guide him on the journey... <3

Alicia Katznelson Broth Michelle is exactly right.

Ali Wolf Strong momma! Incredible Ian ! Sending hugs

Robin Katcoff Wow Marci. Let me know if Ian would ever want wriley to come over to entertain him. She loves to sing and put on plays.

Irene Summers Gordon Gellar Your family is inspirational to all whose lives you have touched, including the Lonsmen! My personal prayers are with all of you as the New Year approaches!!