Journal entry by Mindy McBride — 48 minutes ago Good morning, #Team Andy:
As I begin to think about the world that is reading this I thought I would give you a little background on our family. Andy and I have been married 14 years and have two amazing little girls. Maisie is our 9 year old and lives with a rare neuro genetic disorder called Angelman Syndrome (1 in 20k). Maisie has global delays which include gross motor, fine motor, cognitive and speech. Maisie uses a communication device as she does not have any words but can advocate for her needs through gestures, adaptive signs and sounds. Don't get me wrong, the girl will tell you what she wants! Then we have Elsa, a spicy little 6 year old that is an amazing advocate and friend to her big sister. Andy is a fierce advocate for his girls and continues to network in order raise awareness and funds for FAST (Foundation for Angelman Syndrome Therapeutics) to help find a cure for Angelman Syndrome.
As many of you know our family is big into fishing, hunting, camping and just having fun. Andy and I love to travel together to gain a break from the challenges of being parents of a child with special needs, this has been huge for us! Andy is also a great 'Mr. Mom' (insert giggle), with Andy's job he has been able to get the girls ready each morning and get them off to school while I run off to work. We work really hard at finding balance in our life and tag team each moment that arises in parenthood. This morning Andy and I talked about the great gains he is making and how I know he is frustrated that it isn't more or faster and I told him that it is ok and this is the reality. I reassured him that he is doing amazing and will beat this, it just takes time.
Yesterday, Andy had a busy day! He started out with sitting on the side of the bed again with his 3 PTs (see picture below). Andy is working on gaining his strength in his head, trunk, legs and arms, ok his entire body! While sitting on the bed side they push his body upward, lift his head and he tries to keep control of it. They also work with him to lift his leg and hold it out. I have noticed that he can hold his head up longer and beginning to control it for a nod while lying in bed. I am pushing him to nod versus using eyes up for yes and down for no. Andy had OT (fine motor) yesterday afternoon followed by another PT session which worked on range of motion in his bed. The ENT team came in around 5pm and replaced his trach while his sutures were removed in the morning.He also has some music therapy with a woman playing the guitar and signing... like I said busy day! One thing Andy and I have always believed in was early intervention and therapy, it truly has brought Maisie along to where she is. We are a family that doesn't give up and we have this... McBride's don't quit!
This morning the surgery team decided that they are seeing movement in the x-rays with his bowel obstruction so they do not feel like he will need surgery, YEAH! They will continue to hold his feeding and flush him with fluids in hopes to gain some movement. The ICU team has also reached out to some LTAC (long term acute care) facilities which include Regency and Bethesda. Although Andy is doing a great job weaning from his vent (11 hours) he would not be able to withstand 3 hours of therapy a day in Regions Acute Inpatient Rehab center.
We have an amazing team here at Regions and multiple nurses, doctors and other staff stopped by to see Andy even though they are not on his service!
SBR Top-Rated Sportsbooks
Poster Bigday : Nominated Post
Reply With Quote