Welcome to JJ's Journey!

A day in the life of Jenna! Jenna has Spinal Muscular Atrophy (SMA) Type 1. SMA is severe neuromuscluar disorder that effects the muscles that help her move, eat, and breathe. Currently there is no treatment or cure. For more information on SMA, please visit www.fsma.org or visit www.our-sma-angels.com/jenna!

Thursday, October 28, 2010

10/28/10 (Living w/ Spinal Muscular Atrophy)

So a lot has happened over the last couple of days.  Seeing Jenna failed at re-starting her feeds, a CT Scan w/ Contrast was ordered.  The docs thought they were dealing w/ the small intestine, but the CT Scan showed it was really the large intestine that is affected.  It also showed narrowing of the intestine which suggests possible disorders or disease.  A biopsy was then ordered to confirm or deny it.  Overall she did well w/ it, but today she was not herself.  She wasn't laughing and playing w/ all the nurses and therapist like she had been.  A little whiny and whimpering periodically throughout the day.  She said she wasn't in any pain, so maybe the yesterday just took too much out of her.

We have discussed w/ the docs on our concerns of feeling like we are never getting out of here.  We then discussed the possibility of of TPN (IV Nutrition) training and possibly being able to come home w/ it.  That would entail an RN coming to the house @ least once per week to change her PICC line dressing and draw labs.  But we'll do what we have to do to just get her home and keep her there.  It has just been way too long being here in the hospital.

On a good note, Jenna has been receiving PT and OT here.  The therapist have been great and Jenna loved finger painting the other day. She has also started Speech this week and she is having a great time w/ them as well.

Tomorrow Child Life is celebrating Halloween by having a Halloween parade  Everyone is welcome to dress up in their costumes and even pass out treats.  Of course if Jenna goes, she will only be participating on the "clean" floors!  : )

5 comments:

Tina said...

Our prayers continue for Jenna and your entire family. We hope you can have a solution and be home VERY soon.

Hugs from your Chicago friends,
Tina, Ally and the Krajewski's

Amber Merkel said...

I love the costume she looks so cute

Devon said...

That is an adorable costume. I hope you all get to come home soon!!

The Gustafson Family said...

She looks so cute in her mask!

Lia Renee said...

Nice look Jenna. Hope you can go home soon and that everything goes good ok with her studies. Good luck beautiful girl.
Prays and hugs Jesus, Veronica and Lia