Mommy and Sally hanging out right before bedtime.

During treatment yesterday.

Painting a horse mask white to, you know, make it look like a unicorn.

Hi all – Tomorrow is the big Ragamuffin Parade and fundraiser for Sally. Nicole and I have spent the night getting ready for it. Discussing timing, Sally’s treatment, making a unicorn costume for our 7 year old son.  Doesn’t every little boy want to be a unicorn with rainbow hair? Our unicorn to be, Thomas, was a handful today for Nicole. A reminder that he also has developmental challenges that require our attention, as does William. These are the kind of days where it feels a bit overwhelming having three kids that really do need individual focus and attention from us.

My sister gave birth to our newest nephew today, so Sally for the first time has a little cousin, and is no longer the youngest of the grandchildren on my side. Cindy is there giving her a helping hand, luckily our friend AnnMarie is going to come in the morning and take the boys to soccer while Nicole is at work and I’m hanging with Sally. After they get back we’ll have a quick lunch, get costumes on, then all of us (including Sally) will walk a half mile to the beginning of the parade that starts at 1pm and march up the street that brings us past our home and to the fundraiser. At some point during the parade, Nicole will join us (based on how long finding a parking spot takes) and arrive at Wicked Monk around 2pm.

Sally can’t come into the restaurant (Dr. Steinherz’s orders – NO RESTAURANTS or crowded indoor places…ever) so will let her say hi to some of the people supporting her outside for a bit. After that, she’ll head home where our friend and former sitter will hang out with her during the event. Nicole, Thomas, William and I plan to be there for the duration.

Here is another blog post about the event, and the organization behind it – http://blog.mommynearest.com/2013/10/04/the-end-of-summer-just-the-beginning-of-sunshine/

It promises to be a fun afternoon, and looking forward to the boys getting to feel involved. For now, we’re going to finish up and head to bed to try and get some sleep for which will be a long day…but a good one. Sally ate two small bowls of oatmeal today, big progress for her. She received a visit from an Early Interventionist this afternoon, who recommended she get feeding therapy over the next two years to help with her oral development, even if she doesn’t eat much over that span.

Please keep Sally in your thoughts and prayers.

Matt