Finding the Right Fit

       We are trying some new positions.  Lucia wants to cuddle, reaches for my neck and wants to pull me close.  This padded table just isn't big enough for us both.

So I asked if I might try holding her and she was happy to hear it.

 

After a bit though I could feel it. Her own weight leaning forward was too much.

 

Here I am lifting her all the way upright.  She looks itty bitty this way because her back is actually twisted and facing in towards me so although her legs are facing forward her body is facing mine with her head turning to the side.  This is the most comfortable for her if she has to be in an upright position for any period.  She feels the most secure.

     If she were to have to sit up forward facing in a regular chair, this is what her body wants to do.  She is curled to the side hunched over and with her weight being in her upper body, it creates pressure on her chest, forces her to have to hold her head up in an awkward position.  Pillows surrounding her still cannot alleviate this in a tiny airplane seat.  This is why we are working so hard to see if the airline will help us find a way to place her in a large comfy reclining seat.

    To simply lay her straight back means she is putting pressure on the area of her ribcage that has been expanded and rounded out due to the severity of the scoliosis and she is too long for a pack n play stuffed with pillows.

 

 So while I don't love that she has laid in this same position for so many years, for the present it seems to be the most comfortable for her. 

 Thank you for continuing to pray for our Lucia and Cephas!