Sophie's Passing

It is with heavy hearts that we inform everyone that Sophie passed away Monday morning, December 12th, 2011 (exactly her 9 month birthday).  We take great comfort in knowing that she passed away very peacefully, in her sleep, and in her mama's arms.

The timing of her passing was quite unexpected for everyone (us, her healthcare team, etc.).  The past two weeks, Sophie had been smiling more than ever, able to go on long walks, and gave us so many incredible memories.  She woke up Sunday morning very lethargic, and slept through most of the day, however we thought she might be simply entering the initial stages of SMA related respiratory decline (which can take months).  Monday morning was much of the same, so we called her palliative care nurse Jennifer to stop by and check her out, not expecting anything significant to come out of her evaluation.  Within 10 minutes of the Jennifer's arrival, Sophie peacefully stopped breathing and passed away while being held in Liz's arms and surrounded in love as she was her entire time with us.

Sophie taught us so much... she was the most beautiful, sweet, amazing little soul that we have ever met... and we will be better people because of her.

We have decided to donate Sophie's tissue to help other needy children, and will have a private ceremony just for the two of us (instead of a public funeral).  We are also planning to have a memorial walk in the spring to celebrate her life, raise awareness about SMA, and raise funds for SMA research and family support.

In lieu of attending a funeral, we would love if everyone can show their support by taking a picture of a lit candle in memory of Sophie (along with yourself and/or a special note in the picture) and sending the picture to lizterhorst@gmail.com. We will be collecting the photos and putting it into a memorial album that we will cherish forever.  We know that Sophie touched more lives than we could have ever known, and we are honored to have been her parents.

Below are some photos from the last week that we were able to spend with Sophia:

Our last family photo... the night before she passed.  As you can see, she was so content hanging out with Mama and Dada... we will forever cherish how happy and peaceful she was her final night with us

Watching Elmo videos with Dada

Hanging out with Mama

Sophie Update/Thanksgiving

For the past several weeks, Sophie has been more irritable than before and not her 'normal self.'  We have been working closely with her palliative care nurse and health care team at Children's Memorial Hospital to figure out what might be causing this and to help keep her comfortable.  We have adjusted some medications and made other small changes and she seems to be doing a little better the past few days.

Nurse Jennifer

Sophie has also started music therapy which she loves!  Her music therapist, Rachel, is wonderful and Sophie loves watching her play guitar.

Sophie also had some visitors for Thanksgiving:

Uncle Brad brought his guitar!

Nonnie, Carla, cousin Zoe, Aunt Jenny

Pretty ladies

Sophie loves Zoe's hair

Sophie can't get enough of Brad playing his guitar

Grandpa during his last visit

8 Months Old!

On November 12th, Sophie turned 8 months old!  It's been difficult some days to get out, so we celebrated her birthday in parts with singing & cake, Shedd Aquarium, and a local botanical garden on different days... here are the pics!

Time flies by... can't believe she is already 8 months old!

A ladybug cake for our little ladybug

She approved

Someone is very interested in the fish!

Jellyfish exhibit

View of the city outside the aquarium...someone decided to take a nap before the picture

Sophie loved the plants at the botanical garden

Fun with Daddy

A little rosebud

We will post an update on Sophie' progression soon.

Entourage part 4

Nap Time

Sophie has met so many great people in her 7 (almost 8) months of life.  Here is more of Sophie's crew:

Christine

Little Audrey and Julia

The Kurtz Family

Sarah, Henry, and Ryan

Brian and Elizabeth

Nancy and Elliot

Diane Blain

Kris Baumgartner

Tina, Ally, Brianna, Maddizon

Jeni and Jacob

Happy Halloween

For Halloween this year, we decided to order two costumes for Sophie.   The day before Halloween, we dressed her up as a ladybug, and for Halloween night we dressed her up as a duck.  The following are some pictures:

Daddy and his ladybug

Nonnie :)

In front of the tree which was recently planted in honor of Sophie

She found a pumpkin just her size

Feeling the pumpkin she helped carve

Ready to get some candy!

Ready to go trick or treating

Never to be ignored...Bella would prefer to be the center of attention, though she knows who is in charge

7 Months Old!

On October 12th, Sophie turned 7 months old!  It's amazing how much she changes month to month...though her strength is slowly decreasing, her mind is advancing rapidly!  Sophie knows that she is 'in charge' and lets us know in her own way if she wants something.  At the same time, she does this in the sweetest way possible:)

For Sophie's 7 month birthday, we celebrated by going to a pumpkin patch.  Though it isn't Halloween yet, we decided to dress her up anyways.

She's ready to go!

Biggest pumpkin ever?

Sophie picked a good pumpkin to bring home

Checking out the animals

Sophie may have been a little scared of this guy

And she's out after a short trip to the pumpkin patch!

NG Tube

Sophie is nearing her seven month birthday, and she has begun to lose more strength over the last few weeks (which is often seen with babies with SMA in the 6-7 month timeframe).  Not only is Sophie's strength declining, but also her ability to efficiently eat (suck/swallow).

On Friday, October 7th, we decided to have a nasal gastric ("NG") tube put in for Sophie.  An NG tube is basically a small plastic tube which leads from the nose to the stomach, which allows us to give Sophie food directly into her stomach.   The few weeks prior to the NG tube placement, eating had become more and more difficult for Sophie and she was getting less and less food.  This led her to often being uncomfortable and irritable.  After the tube was placed, we were able to administer food through the tube without her using all of her energy to eat.  After the first feed with the NG tube that afternoon, she was immediately much more comfortable and back to her normal happy, smiley ways!

Sophie sporting her new NG tube

Her NG tube doesn't seem to bother her as evident by her smiles

Playing on the iPad...though Sophie has only a little movement in her arms, she is able to use it on the touchscreen of the iPad...here she is playing a piano iPad app

Kind of tough to see, but this is Sophie asleep while being fed through her NG tube...Liz is holding her food in a tube, which goes through the tube into Sophie's stomach...Sophie still gets her cuddle time while getting her feeding!

With the beautiful weather this week, we decided to take Sophie to the beach

Sophie, Bella, and Daddy

Sophie and Mommy

Once again, we'd like to thank everyone for their kind thoughts and support.  Our friends, families, employers, colleagues, and Sophie's healthcare providers have all been so supportive and understanding.  We'd also like to mention a special thank you to everyone in the SMA community... you have been an incredibly helpful and supportive group in every step in our journey (as only you would understand), and we hope we can give back to others in the future like you have all helped us so far (and we're sure that help will continue in ways we can't yet imagine in the future).