12.30.14 This and That

We are rather delayed in reporting to you primarily because of our big project. We are fixing up an older manufactured home to live in for a few years on a 5 acre piece of property. We are very excited about moving our family closer to church, extended family, and the hospital. 

Aimee thoroughly enjoys the noise that fixing up a house brings. Her particular favorite is demo. 

Due to this crazy project, I have several weeks worth of Aimee news for you. 

Aimee's sick season has been rather mild, aside from a ruptured eardrum and some colds, which are still challenging.

Caleb is learning to document life. This unfocused picture is me leaning against Aimee's bed during a rough day of her sickness. 

Another sleep study is on the books. The good news is that Aimee received a brand-new BiPAP machine. It is working wonderfully and making a huge difference! It seems that this machine is picking up on her lack of breathing or shallow breathing and increasing the pressure immediately. Desats that were going into the low 60s sometimes even lower, are now just hitting the mid to low 80s before being caught and starting to go back up. 

Unfortunately, the sleep study showed that Aimee is now having central apneas. Unlike the more typical obstructive sleep apnea that she has due to her low tone, the central ones point to potential brain deterioration. For some reason her breath signal is not being sent. At this point, because her new BiPAP machine is making a big difference for her, we are holding off on doing any more sedated brain MRIs. 

We are still struggling with some insurance issues in regards to the homemade enema gravity system, as well as, some kind of bathroom chair to help her with elimination. It is overwhelming to try to figure out new routines when there is no textbook to follow.

This past year, we have noticed an increase in her muscle spasticity. Our once floppy girl is tightening up. Day to day this just makes getting her changed or dressed more difficult. A couple different meetings with ortho doctors has shown us other effects as well. 

The first appt was to check on her spine and hips. Her spine has still continued to gradually curve. Her left hip has gotten particularly worse. At this point, they are just monitoring the change and having us manage pain. 

Yesterday, we came in to see her orthopedics doctor that corrected her club feet. I was hopeful that this visit was going to be her final one with this doctor since everything has been great for a couple years. Sadly, he said that we need to start bracing her feet night and day. Her change in tone in her extremities is tightening up the Achilles' tendons, which she had cut as a baby. He is concerned with how much change there has been recently that if we don't start 24/7 bracing that her skin will breakdown as her feet begin to recurl. She didn't look thrilled at the news.

We also met with the dietitian to review her weight and her blended diet. Happy to report on this front that Aimee has grown 3 cm in height and about 5 pounds in weight since last year. The nutritionist said that they hope for 4-6 grams on average per day for her age. She averaged 4 g a day. So happy.

We are convinced that her nutrition continues to make a big difference in her health and happiness. I am excited to say that due to different sources from church and Christmas money, we are able to purchase a new blender with a higher capacity for her. Hooray for good food for Aimee. :) 

And finally, Merry Christmas to you all. May your home be filled with peace this season and your coming year brimming with hope.