The first that I must tell includes so many of you. We have been uplifted in the midst of our weary season by an overwhelming love from our church family, our friends, and our own dear family. Our church has embraced us closer even as we have had to stay isolated at home to keep Aimee healthy. We have received funds to stock the freezers with made ahead blended meals for Aimee, dinners for us, and even been given food and diapers. Our friends have kept connected with us even from a far with notes, mailed gifts, and prayers. Our families has loved us in unique ways. It has been especially amazing to watch uncles, aunts, cousins, and grandparents learn to delight in Aimee and connecting with the boys. Thank you for traveling this journey with us in the way that lifts weight from our own hearts.
In continued pursuit of more sleep, we have attempted many changes for Aimee at night. The biggest being a new bed topper. It is a quality memory foam with a 30 degree wedge on the top and a mild incline at the foot. Here are a few photos:
HOWEVER, the big game changer for this year is her new cough assist machine. We have seen dramatic health changes with this machine combined with her new bed and chest PT. Multiple times in the last month, extra mucus that would normally become infected causing drawn out illness has been able to be loosened and moved to her upper airway where it can be suctioned out. The cough assist has also improved her healthy oxygen saturation levels by about 3% on average, giving her that much farther to fall when sick. As her pulmonary doctor described, this machine is a major game changer for kids with neuro-muscular disorders, brain damage, and developmental delays. It is keeping them out of the hospital, dramatically reducing infections, and really keeping them alive longer. AMAZING!
And finally, a new look for Aimee. We chopped off her ponytail. Isn't she such a cutie?!
And finally, a new look for Aimee. We chopped off her ponytail. Isn't she such a cutie?!
I'm so glad for all these new changes! I sure hope Aimee is able to get a better quality of sleep. We are getting "The Vest" any day now, have you seen that? They told us that Elizabeth has a strong enough cough to not need the cough assist.
ReplyDeleteLove and prayers! Jenny
Did you get the vest yet? When we talked with Pulmonary, they recommended the cough assist rather than the vest for Aimee. It has been incredible! I seriously am in love with it. We are getting junk out of her lungs that typically would make her sick constantly. She has been way healthier with better oxygen levels! I so hope that Elizabeth gets these same amazing results from her vest.
DeleteThink of you and your sweetie often!