Here's my awesome chair that we picked up                                 I love sitting up in it! I'm such a big girl now!

on Valentine's Day. It even has my name on it.


A BiPap is used to aid my breathing while I  sleep. It's the machine on the left. The bipap has a mask that is secured over my nose, but luckily I figured out how to suck my thumb with it on.  The mask is attached to a tube which is attached to the machine that gives an extra “push” of air when the I breathe in.  This way air is delivered deeply to my lungs. The bipap helps to fully expand my lungs keeping all portions of the lung healthy. 

If a child is not able to breathe and unable to use portions of the lung it does not take a long time for that unused portion of the lung to die.  By helping her fill her lungs with air properly the lungs stay healthier. 

Here I am with my BiPap on. I'm still cute with my face half covered!!

Another machine we use for lung expansion is the In/Exsufflator also called the Cough Assist - on the right in the picture.  This machine has a tube and a mask that mom or dad holds on my face and then it simulates a cough by delivering a deep breath of air into the lungs and then switching to a negative pressure that pulls the air out quickly and moves airway secretions and mucus up to the point that they can be suctioned out of the mouth or nose.  A lot of SMA families of suction machines that they then use.  As of right now we do not have one. I use a bulb syringe to suction what I can and thankfully Grace hasn't been so sick as to need a machine.  Although I'm sure it wouldn't hurt.



Here I am in my KAFOs - knee ankle foot orthotics and in my TLSO - which we just call my Telso or shell.  The KAFOs help to straighten my legs and ankles so they won't get stiff or stuck in a weird position. They will be a big help and use when I get my stander - which we're still fighting for. My TLSO helps to keep my back straight so my scoliosis doesn't progress as quickly.  It also helps me hold up head and move my arms because I have more strength since I'm not trying to support my whole mid section. I usually wear it under my clothes, which means my clothes are 2 sizes too big, but we were just trying it on in this picture.