Pics from the Summer

I haven't posted a lot of pictures this summer because I've been extremely busy with Scarlett and trying to recuperate from my back injury.  Scarlett is scheduled to have back surgery next week on the 18th.  We've spent most of the summer preparing for this surgery.  I will keep everyone updated on her surgery through either Facebook (she has her own page on facebook called Scarlett's Hope) or her blog.

I've taken a bunch of pictures this summer and I wanted to share them with you.

We are trying out a new portable hoyer lift.  This will allow us to safely lift Scarlett.  She is now 40 lbs and 37 inches long.  It's very difficult to lift Scarlett because she can't assist in the lift.  Her head, arms, body and legs have to be supported while lifting.  She also has to lay flat while lifting to help with her breathing.  It's a balancing act and is difficult.

This is a sling from another SMA family.  It works great because it supports Scarlett's head and allows her to lay flat.

This is another angle of the sling.

This is the original sling that we tried and it didn't support Scarlett's head and she wasn't able to lay flat.

Another angle of the sling that didn't work.

Daddy and Scarlett playing with Dolls

Practicing moving around in her Power Wheelchair

Mom and Dad on their 5 year wedding anniversary (Scarlett was having trouble regulating her temp that day so we let her hang out in just her diaper)

Nail Salon with Dad

Painting 

Heart Rate Monitor (ordered by Cardiology in order to clear her for surgery)

Appointments at Children's for upcoming surgery (General Ped, Hematology, Orthopedic Surgeon, Anesthesiologist, Neurology, Cardiology)

Scarlett is a really hard stick.  It took 5 people and a special light to do the blood draw.  She ended up having to get two more blood draws after this one. Her body was covered in bruises.  I'm not sharing the pictures with the bruises because it's too sad.

Making Window Art with her Nurse

More fun in the Sanctuary

Dad added a fall decoration (I'm excited for Christmas... I can't wait to put up some lights)

Hummingbird (look to the left side of the picture).  They are hard to catch on my camera.

Hummingbird

Pretty Cloud

Bath Time

Scarlett has had a lot of trouble breathing lately so we haven't been able to remove her bi-pap for more then 5 minute increments.  We now have to keep her on bi-pap during her baths or else she stops breathing and turns blue.  It's really scary.

Mom and Dad on date night (this was taken before Mom's injury).  Scarlett was at home with one of her nurses. 

Pics of The Princess

Scarlett sleeping.  This is a picture of her baby monitor.  There is always someone in Scarlett's room but sometimes we have to step out to get laundry or food from the kitchen.  If we leave for a minute, we have two monitors hooked up (one on her face and the other on her ventilator and pulse-ox).

Giving us "the eye"

Sleeping... Scarlett was sick with a sinus and ear infection and was sleeping almost 12 hours a night. 

More pictures of her sleeping.

Scarlett loves a q-tip in her mouth.  It's light enough that she can move it around with her tongue. 

All clean.  This was taken after a bath.

Mom and Scarlett.  This was taken the day before Mom's back injury.

Mom and Scarlett in the sanctuary.  (This was also taken the day before Mom's back injury).

Pretty flowers that Scarlett saw on her walk.